Staying in Life: Paving the Way to Dementia-Friendly Communities 9783839438909

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Verena Rothe, Gabriele Kreutzner, Reimer Gronemeyer Staying in Life

Society of Differences | Volume 42

Verena Rothe, Aktion Demenz e. V., Gießen, Germany Gabriele Kreutzner, dementia activist, Stuttgart, Germany Reimer Gronemeyer, University of Gießen, Germany

Verena Rothe, Gabriele Kreutzner, Reimer Gronemeyer

Staying in Life Paving the Way to Dementia-Friendly Communities

Robert Bosch Foundation initiated Aktion Demenz e. V. and funded the ­programme ‘ People Living with Dementia in the Community’.

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche ­Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de

© 2017 transcript Verlag, Bielefeld All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publisher. Cover Layout: Wolfgang Polkowski, Gießen Cover picture: Christian Petzold, Berlin, 2012 Layout and Typeset: Wolfgang Polkowski, Gießen Translated by Boka En, Michael En, David Griffiths, Robert Zimmermann Printed in Germany Print-ISBN 978-3-8376-3890-5 PDF-ISBN 978-3-8394-3890-9

Content

Acknowledgements7 Opening remarks by the Robert Bosch Foundation

10

Preface13 Part 1

The Dementia-Friendly Community – A Daring Venture Reimer  Gronemeyer

17

1.

Dementia – the major issue

20

2.

Dementia-friendly communities : how did it start ?

27

3.

The humus of the community – premises for a

4.

dementia-friendly community

34

Dementia shines a light on it : on the way to a new conviviality

36

Part 2

People in the community living with dementia – the programme Verena Rothe

43

1.

Paving the way to dementia-friendly communities ?

43

1.1

Re-imagining communities

43

1.2 The programme – a complex endeavour

44

1.3 Selecting the projects

46

1.4 The target group

47

1.5 Evaluation – helpful impulses for others

48

1.6 Experiences make a difference !

50

1.7 Diversity as a guiding principle

51

1.8 The wealth of ideas

56

2.

58

Topics and activities

2.1 Art and culture as keys that open doors

58

2.2 Church and religion – a community for all ?

71

2.3 Children and teenagers – looking to the present and the future

79

2.4 Physical activity and sports – you snooze, you lose ?

90

CONTENT

3.

Chosen methods and achieved effects

99

3.1 Together instead of alone ?

99

3.2 Symbolic action and raising public awareness

110

3.3 Enabling networking – inspiring ideas

118

3.4 Migration and cultural sensitivity

122

4.

127

Common topics and exchanging experiences

4.1 People with dementia and their friends and families

127

4.2 Illness and medical care

153

4.3 Between exchange of experiences and competition

163

4.4 Dementia concerns us all !

165

4.5 The media – ‘If they don ’t report it, it doesn ’t exist ‘ ?

187

4.6 Local government – possibilities and limits

193

4.7 Volunteering and social involvement in the community

208

5. Conclusion

219

5.1 Looking back

219

5.2 The here and now

227

5.3 The dementia-friendly community spelled out

230

5.4 Looking ahead at what will be

231

Part 3

Between Reflection and concrete Action Gabriele Kreutzner

241

1.

241

Aktion Demenz – how far have we come ?

1.1 Perspectives and positions

243

1.2 The first steps : interconnections

245

1.3 ‘ Aufbruch ! ’ ( ‘ New Beginning’ ), Esslingen am Neckar ( 2008 )

249

1.4 And that ’s how it went on

254

1.5 Sensitization in the initial phase of Aktion Demenz : an interim reflection

259

1.6 Sensitization as media attention : dementia in the German media

262

2.

269

Towards a different way of looking after?

2.1 Provision – concern – care : first steps towards clarifying concepts

269

2.2 On the reinvention of neighborly interactions – an exploration  

275

Funded Projects283

Acknowledgements

We want to thank everyone who has helped the causes of Aktion Demenz. We only know by name a small fraction of those who would deserve to be named here, and cannot even list all of those whose contributions we are aware of. This is why our biggest thanks goes to these groups of people as a whole. To offer a few examples : the members of the initiative workshops Gemeinsam für ein besseres Leben mit Demenz ( ‘ Working together for a better life with dementia ’ ), the members and interested parties of the Aktion Demenz association, the 78 projects that were funded as part of the funding programme Menschen mit Demenz in der Kommune ( ‘ People in the community living with dementia ’ ), as well as all the other submitted projects and suggestions. Many of them have progressed further on their path to dementia-friendly communities by themselves or with other sources of support. We also want to mention the many initiatives that started their journey before, with or after us – in Germany and elsewhere. Without them – without you –, Aktion Demenz could not have taken the steps towards a better life with dementia that we did. We want to thank the following organisations and individuals by name : The Robert Bosch Foundation as a strong supporter and promoter of efforts towards a better life with dementia. The above-mentioned initiative workshops within the foundation, and its founders Almut Satrapa-Schill and Dr Bernadette Klapper. We struggle to imagine what the domain of dementia-related work would look like today without them. Over the years, Aktion Demenz and the programme Menschen mit Demenz in der Kommune ( ‘ People in the community living with dementia ’ ) have received support in various forms from countless members of the foundation, most notably Simone Grimmeisen, Julia Hoeter, Anna Miller, Brigitte Stähle and Julia Wirth. We acknowledge also the contributions of Dr Ingrid Wünning Tschol, head of Health and Research at the Robert Bosch Foundation, who made it possible for the achievements and experiences of the People in the community living with dementia programme to be collected in this publication. 7

 ACKNOWLEDGEMENTS

We hope that the foundation will continue to give special attention and care to the period of life most affected by impairments. Many hands and minds in our office in Gießen and beyond have been busy for Aktion Demenz. In particular, they include those of Sylvia Allendörfer, who supported the funding programme in organisational and administrative matters with exceptional reliability and motivation. Additionally, Sandra Dittrich and Eva Schimpf also made some important contributions. The members of the initiative Demenzfreundliche Kommune Stadt und Landkreis Gießen ( ‘ Dementia-friendly community – City and district of Gießen ’ ) and Dr Andrea Newerla were particularly active in the local promotion of the project. We thank Dr Charlotte Jurk for providing an invaluable external perspective on the programme and its projects. We also thank Tobias van der Plas for creating our website and accompanying us during our difficult beginning. Wolfgang Polkowski supported the designing of the online platform with care and consideration. Conny E. Voester contributed to its structuring through her ordering contributions and guidance concerning the contents. Martin Petzold ’s and Stefanie Kämper ’s efforts – paired with their creativity – have been exceptional and inspiring. It was the members and board of Aktion Demenz that made this association possible in the first place, thanks to old-fashioned qualities of sustained commitment, dedication, and reliability. For their indispensable efforts on the board, we want to thank Dr Bernadette Klapper, Prof Dr Thomas Klie, Heike von Lützau-Hohlbein, Christian Petzold, Burkhard Plemper, Dr Willi Rückert, Carmen Tillmann, Brigitte Voß, and Peter Wißmann. We also want to thank Bärbel Gregor and Ruth Schlichting for their support of the efforts of the board and the association as a whole. Finally, we thank Cornelia Wilß ( passage, buch+kultur ) for copy-editing, Wolfgang Polkowski ( Polkwoski Mediengestaltung ) for the layout. We are very much aware of their dedication that surpassed what could be expected conventionally. For translating this book from German into English, we thank Boka En, Michael En and David Griffiths ( acknowledgements, opening remarks, preface, part 2, funded projects ) as well as Robert Zimmermann ( parts 1 and 3 ). 8

 ACKNOWLEDGEMENTS

Last but not least, we want to thank all those individuals with personal relationships to the authors. They have shared in the thoughts, pains, and joys that went into this book, as well as given their time and energy to support both this project and its authors. We hope that there will be further opportunities for co-operating with all of you – paving the way to dementia-friendly communities together !

9

Opening remarks by the Robert Bosch Foundation

Dementia as a social issue has moved from being a niche topic to becoming part of German public discourse. Finally ! Ten years ago, nobody could have imagined books about dementia on bestseller lists or cinemas screening films on dementia that feature famous casts. Dementia sells – this at least means that things have changed. And what we had feared has not come true; dementia has not become a prop of apocalyptic images. Instead, in ageing Germany – as well as in its neighbouring countries –, people are tackling the important questions : How do we encounter those who are confused ? What can we do ? How can politics, care providers and civil society meet the challenge of dementia ? The Robert Bosch Foundation started talking about dementia more than 10 years ago, when it was only “ discussed ” by experts, and considered a niche topic even in those circles. The foundation laid a foundation, brought academic research and practice together, and started a two-year networking initiative Gemeinsam für ein besseres Leben mit Demenz ( ‘ Working together for a better life with dementia ’ ). Back then, our goals were : connecting the efficacy of established best practices with the breadth of experiences made; finding gaps in existing care structures and trying out new approaches; strengthening chances for success and sustainability of activities through co-operation; and founding a network as the foundation for an action programme. The exchanges between medicine and sociology, care and social work, universities and civil society that emerged as a result gave rise to impulses and inspirations for a different approach to dementia. Experiences from neighbouring countries as well as a week-long visit to the Dementia Services Development Centre in Stirling in Scotland also contributed to the project. There, Mary Marshall pioneered many valuable approaches in accompanying people living with dementia. How can we support people with dementia early on ? How can we preserve their abilities for as long as possible ? How can we support them in co-operation with and between experts and friends and families ? How can we make sure that people with dementia receive the right and sufficient nutrition ? Which ethical and legal questions and connections are relevant in 10

OPENING REMARKS BY THE ROBERT BOSCH FOUNDATION

relation to dementia ? These are the questions with which about seventy experts grappled in networking workshops over the course of two years. They investigated where there was need for action and where there were possible solutions. But this was not the end of the journey for everyone involved. The initiative became the starting point for a new beginning, whose effects are clearly noticeable today. The association Aktion Demenz – Working together for a better life with dementia emerged from this networking initiative based on prompts from the Robert Bosch Foundation. From the beginning, the board was comprised of individuals from the academy as well as civil society that were willing to work towards giving the topic of dementia more visibility in Germany and paving new ways in dealing with the issues raised by dementia. Among many other topics, a core emphasis of Aktion Demenz has been making clear that dementia is not only the responsibility of physicians and care workers, but that a better life with dementia needs to be based on the links between many different factors, especially in the daily lives and interactions of people in their own communities. With this goal in mind, Aktion Demenz focused on the area of ‘ dementia and the community ’. They suggested a funding programme to the Robert Bosch Foundation that was intended to help get initiatives started in communities and on their way to changing the relationship between society and dementia. Soon, the term ‘ dementia-friendly community ’ became established as a keyword that has arrived in many German-speaking communities. There is little question that this is primarily due to the funding programme set up by the Robert Bosch Foundation and realised by Aktion Demenz. Over the course of three funding cycles, dementia was established as a topic near the top of the agenda in many German municipalities, cities, towns, and other communities. It funded almost eighty projects, whose ideas and approaches invite others to copy, continue and develop further what they have begun. The emphasis was not on new professional care structures but rather on involving civil society actors in the communities. The goal of creating ‘ dementia-friendly communities ’ has proved contagious. For example, an Austrian ‘ A ktion Demenz ’ was founded in Vorarlberg in Austria, and exchanges between the 11

OPENING REMARKS BY THE ROBERT BOSCH FOUNDATION

Robert Bosch Foundation and the Belgian King Baudouin Foundation led to the creation of the European Foundations ’ Initiative on Dementia – a coalition currently composed of seven foundations that aim to foster networks between people, organisations and projects across Europe that work towards ‘ Living well with dementia in the community ’. The Robert Bosch Foundation provided further emphases through education and training opportunities, including short guest stays in other countries for executive staff in health care institutions and a postgraduate programme on dementia. Currently, the foundation supports emergency hospitals in finding ways of treating patients with dementia gently, in order to alleviate the potential impact of vulnerable moments such as hospital stays resulting from general medical problems or surgeries. We are happy that the initiatives of the Robert Bosch Foundation and Aktion Demenz have been taken up by the Allianz für Menschen mit Demenz ( ‘ Alliance for people with dementia ’ ), founded and funded by the German government. Through it, the credo of Aktion Demenz – ‘ Working together for a better life with dementia ’ – has been put into a larger context. We hope that as dementia has left its position as a niche topic in the mass media, the idea of ‘ dementia-friendly communities ’ will likewise grow beyond the individual, exemplary local initiatives. We hope that in the future, people with dementia will be able to live good everyday lives in our communities, that they will be cared for, and that they will be able to actively participate in their own lives. Dr Bernadette Klapper Robert Bosch Foundation, July 2016

12

Preface

It may seem presumptuous to add yet another book on dementia to the many that already exist. However, here we are doing so, and with good reason. With this book, we look back at a process whose vehemence surprised us. In 2004, the Robert Bosch Foundation got the ball rolling with the initiative workshop ‘ Working together for a better life with dementia ’. It had the foresight, sensitivity and courage to consider the social side of dementia. The question was : How are we going to address the fact that more and more people live with dementia, if not with more engagement by civil society ? We at Aktion Demenz caught that ball that had been passed to us, and since 2006, we have worked towards making ‘ dementia and the community ’ a subject matter for discussion in communities and have sought to nurture a willingness to act on these discussions. This book is intended to showcase the results of the efforts made by initiatives across the country, and to connect them to their various practical and theoretical contexts and implications. The dementia-friendly community is like a pebble that, once thrown into the water, causes further ripples. In other words, we shouted ‘ dementia-friendly community ’, and the call reverberated with innumerable, amplified echoes. Each initiative developed its own way of doing things, and together, they form a bouquet of diverse possibilities that this book seeks to relate. The book is not a seamless surface, however. After all, three different authors were involved in its writing. But we hope that taken together, the three different pitches presented herein will provide a harmonious chord. It was at very different points in our lives that we encountered the topic of ageing and dementia. Equipped with different perspectives, experiences, and mental as well as practical tools, we discussed and started the idea of dementia-friendly communities with our work in the Aktion Demenz association. Accompanying a larger number of projects and initiatives across Germany that all sought to improve the lives of people living with dementia – as well as their friends and families – in their local communities prompted and enabled us to engage with the differences between theory and practice, and to make them tangible for continuing to develop ways of thinking and acting. 13

PREFACE

We are overjoyed that dementia-friendly communities has become a key term that has entered discussion in many places and at many levels. Inspired by this vision, people ’s efforts have led to the founding of new initiatives; and many a councillor, member of a provincial government or mayor could not resist the contagious power of these ideas. The wave of dementia-friendly communities has also reached the Lokale Allianzen für Menschen mit Demenz ( ‘ Local alliances for people with dementia ’ ), which are funded by the German government. It remains to be seen whether the efforts of members of our society aimed at making it a warmer and kinder place will retain their central position. Fostering the growth of a grassroots movement for people living with dementia is a core tenet of Aktion Demenz, and it must remain so in the service of people living with dementia as well as their friends and families. The dementia-friendly community harbours the possibility of re-imagining and re-building a society of isolated individuals in which only paid service providers provide the help needed by individuals. Understood this way, dementia-friendly communities are about inventing a new way of living with each other rather than just next to each other. Verena Rothe, Gabriele Kreutzner, Reimer Gronemeyer Gießen, July 2016

Picture credits p. 116, Eine starke Gemeinschaft lässt Menschen mit Demenz nicht allein ( ‘ A strong community does not leave people living with dementia alone ’ ). Motif by the Junge Gemeinde Pirna ( ‘ Young Community Pirna ’ ), Pirna, 2011. | p. 150, Zeitsprung ( ‘ Leap in Time ’ ). Demenzinitiative für Stadt und Landkreis Bamberg ( ‘ Dementia initiative for the city and district of Bamberg ’ ), Bamberg, 2013. | pp. 16, 42, 96, 124, 176, 204, 212, 222, 240 Christian Petzold / Aktion Demenz e. V., Berlin, 2012.

14

THE DEMENTIA-FRIENDLY COMMUNITY – A DARING VENTURE REIMER  GRONEMEYER

‘A city consists of different kinds of people; for similar people do not create a city.’ Aristotle

NOW, AS I AM WRITING THIS BOOK, autumn is starting. I am, once again, amazed

when flocks of starlings rise from a tree, and, in baffling unity, trace patterns in the sky. Fluttering circles or ellipses, the edges of which suddenly fold over. Clouds of birds, which slide, intersect or fuse into one another; murmurations, ornithologists call them. I wish to fly along with them for one moment, to find myself part of a sky melody, totally free, totally released, and yet in harmony with many others. How the birds do this, I have no idea, but they provide me with a feeling of joy, and they stir dreams and yearnings. I think then of the story that is told, of the millions of birds that, before all times and before the world began, filled the sky, in steady motion. There was no land on which they could land, and therefore the birds kept flying around. And the roar that these millions of birds caused was deafening. Among these birds was also a lark. When her father died, she felt helpless : there was no place where she could bury her father. Finally, the lark decided to bury her father in her head. And so memories, and memory, were created 1. 17

Reimer  Gronemeyer

Our memory is the hard drive, or rather the cloud, in which our data, stories, and memories whir around disembodied. With it, we can call up, store, and bury everything. Only we cannot really erase anything. Whereas our electronic memory is becoming ever larger and has long since been cut loose from the Earth, at the same time, on this Earth, more and more people are losing their memory. They are fluttering about aimlessly. One-and-half ­million of such floundering or fluttering people live in Germany, worldwide they are probably 60 million – and their crowds are ever greater. They do not, however, move quite like the starlings in the autumnal sky in beautiful formations, but rather as though a hawk had flown into the flock, and now all fly off every which way. The fluttering people – some say the dementia patients, other say people with dementia, earlier we would have said : the crazy grandpa, the doddery granny – have a corresponding swarm of birdcatchers. The birdcatchers, the dementia experts equipped with certificates’ and credits from continuing education, catch them with their hands and with their care nets and take them to nursing homes or care for them as ‘ out-patients ’, that is on an ‘ ambulant ’ basis. Ambulant comes from the Latin ambulare, which means so much as wandering about. A peculiar relationship exists indeed between the wandering demented and their corresponding wandering care-givers. Lately, there are cages exclusively for fluttering women and men, and they are called ‘ dementia villages ’, in which the beautiful free world is reproduced. In them, the fluttering people are sorted according to their plumage, and placed in golden cages in which they should have the feeling of being at home and in liberty. And everything works according to the favorite melody of the care-givers and those who are cared for. And this melody is called growth : there are more birds fluttering about, and there are more birdcatchers. We are enveloped by curves of exponential growth : the world population grows, the use of resources grows, the numbers of city dwellers increase, the numbers of the old increase, worldwide hunger grows, and the numbers of the demented happen to grow, too; with them, the caring machinery that surrounds them is growing at the same rate. That is, until the bubble bursts ? Over and over again, whenever I examine the issue of dementia, I am reminded of the story of Tithonos. A Greek fable tells the story of Tithonos, son of the Trojan king. Tithonos was so loved by Eos, Titaness of dawn, that 18

The Dementia-Friendly Community – A Daring Venture

she implored Zeus to endow him with eternal life in order to be able to share life with him forever. Zeus granted this wish grudgingly. Eos had forgotten, however, to request eternal youth for her beloved as well, and thus Tithonos got older and older, and he shrank so that eventually all that was left of him was a nagging shrill voice, and finally Tithonos became a cicada. At some point Eos, weary of her beloved, locked up the immortal, ancient Tithonos in a small cage. Not a pleasant story. But does it make us reflect on the growing numbers of the aged who, thanks to medical progress, live ever longer and who, if we can trust the statistics, with advancing age are almost inexorably sliding into dementia ? If we just become old enough, it is said, we all lose our minds. And, in this sense, the doctors are the very special birdcatchers : first, they promote longevity, than they care for the helpless ( not without earning handsomely from them ), and, finally, the question forces itself to the forefront’ as to whether an end should be put to this ‘ life grown devoid of all sense ’ or to this ‘ unbearable suffering ’. We are just getting used to, at high speed, to this notion of switching off. A glance over the fence : in Belgium, in 2013 already more than 1,800 people were euthanized. There, minors can request assisted dying even without the agreement of the parents, and the number of people with dementia, whose end is medically facilitated, is growing. The relatives must, however, consent...2 When the current efforts to implement a claim to assisted dying are examined, we should not lose sight that people with advanced dementia quickly end up in the cross-hairs of assisted dying. The sentiment is, they no longer ‘ lead ’ a life at all, but rather are they not beings in need of release ? No one surely wants to live like this ? They can no longer decide this, but the relatives, in cooperation with medical, legal, and ethical professionals, surely they could... ? We must not forget that people with dementia, in our accelerated and innovative society, become the epitome of ‘ losers ’. They barely share that which, to us, seems the most important : their identity is jeopardized, their capacity for independent decisions is limited, they cannot consume, they no longer participate in the event-centered culture of the majority, they are not interested in what the media have to offer, they are not surfing the internet, and they have no friends on Facebook. They are the outcasts of the information society. 19

Reimer  Gronemeyer

The topic of dementia is a key or code issue : it is said that when you want to find out something about cats, you should ask the mice. If I want to discover something about the society in which I live, I should examine ‘ dementia ’. It tells us a lot. It reveals that we live in a society inhabited by radicalized individuals. We ‘ the normals ’ are, above all, the singles. In a way, the modern single experiences, through people with dementia, his / her insane apotheosis, his / her deification gone wrong. It is a small step from the pedestal on which the single displays him / herself to the demented lost in him / herself, and who is ignored by others. People with dementia are apparently the ultimate ‘ social misfits ’ who hold a mirror before us : ‘ this is you ’. People with dementia bring to a conclusion what we started : the radical isolation. For this reason, the question of what holds society together, the question of social cohesion, is so important. For the ‘ normals ’ as well as the ‘ insane ’, for those who are unaffected as well as for the demented citizens of either gender. The flock of starlings is not an image for the society in which we live. The flock of starlings can, however, suggest to us the question : what holds us together in society, or in communities ? What do we need in order to re-establish a connection whereby the insane and the sane can live together ? How can the spreading coldness be so overcome by a rekindling of social relations so that the spheres of life become friendly, dementia-friendly, age-friendly, and people-friendly. 1. Dementia – the major issue On this, we all agree that dementia is perhaps the most important social and human challenge that we face. It is possible that, for the cultural future of Europe, the fluctuations of stock market prices will be less decisive than the question of whether or not, in Central Europe, we will succeed in finding humane ways of coping with this issue, that is of coping with growing numbers of people with dementia and in need of care. Right now, 1.4 million people with dementia have been tallied in Germany, and in the foreseeable future this figure should rise to 3 million; every child has heard of demographic aging. Perhaps in 2030. Or 2040 ? Basically, these are wild estimates, as it is, of course, possible that dementia will explode numerically, or that it will evaporate to a trickle. Dementia evades planning. This creates irritating 20

The Dementia-Friendly Community – A Daring Venture

tasks for the planning, rational, future-oriented modern society. Dementia is a provocation for society, which sees itself headed for an ever more perfect and organized structure. It is sand in the works. As the control of this dementia population is not possible through any therapy, great efforts will be required to make it inconspicuous, if not invisible. Otherwise the picture of a rationally functioning, modern, progressive society will acquire a crack. Leonard Cohen, the 80-year old singer, says in one of his songs : ‘ There is a crack in everything. That ’s how the light gets in ’. There is a ‘ crack ’ in all things. And it is this crack, this fissure, that allows the light to penetrate. Should we for a moment toy with the idea that ‘ dementia ’ is a crack in the rational, self-assured, steely science-based society ? The people with dementia are a symbol that the strategy of the majority society will not succeed. Period, full stop. And perhaps in this totalitarian planning and prevention society, hope can only show itself in the distorted form that dementia drags in ? Whereby dementia announces : it doesn ’t work that way. A concrete dementia strategy, that seeks its salvation only in doing, will not really bring us any further. What we need is not more concepts; what we need is much more a philosophy of dementia, which, proceeding from the phenomenon of dementia, will try to understand our total situation. The attempt to understand the phenomenon of dementia from societal contexts includes a possible misunderstanding. It is not a matter of attributing fault or guilt; neither is it about hasty moralizing; it is a matter, if understood correctly, of grasping the situation in which we and those affected are stuck. Comprehension may not yet necessarily produce prescriptions. We may not want to hear this. It may be too negative for us. In this connection, however, I am always reminded of the so-called Viennese Ending ( Wiener Schluss ). This goes back to a decree by the last Austrian emperor who ordered that all plays performed by the Vienna Burgtheater should be marked by a happy, peaceful ending. Even Hamlet or Schiller ’s The Robbers, Macbeth or The Maid of Orleans. Today ’s usual handling of the topic of dementia always has, in my opinion, a touch of the Viennese Ending. It cannot be owned up that dementia is a tragedy of modern society, but rather we act relentlessly as though it were a problem to be solved, if only we try hard enough. It is precisely this, and more, that what is understood as a dementia-friendly community does not want. We don ’t want to reach a Viennese Ending; what 21

Reimer  Gronemeyer

we want is a society, a community, that does not conjure up a happy ending that won ’t happen, but rather a humane acceptance of what should belong to the pains of aging. It is not a matter of deluding ourselves that we can eliminate dementia, make it disappear. We must practice the self-restraint that consists of opening our arms in order to catch and hug those who fall out and can no longer keep up, those who have lost their minds, at least insofar as we can. This could be the ‘ crack ’ that people with dementia are donating us. What could people with dementia in modern society possibly instigate ? They are our twin siblings who stutter to us : ‘ W hat have you really done that we, who are no longer clear-headed, can no longer find a place with you ? ’ There is the temptation that we do not hear the voice of people with dementia; and the fissure, through which sounds and light might penetrate, we plaster it shut with concepts, projects and plans. If any place, it is in handling with dementia that the wisdom of equanimity or serenity applies. To be able to let it be. I admit it, I don ’t know myself what it means. Should we leave those who have so clearly distanced themselves from us in peace ? Or should we mobilize, include and integrate them ? I have recently seen, more and more often, people with dementia on the stage. Dancing, playing an instrument, singing. I have great respect for those who do this kind of work. I detect in myself at the very least contradictory feelings. I am touched when I see the old women and men tap on or beat the drums with a stick. How they sit there, their eyes on the conductor, or reacting to the direct cues from the social workers ! They are still doing something. They still manage to accomplish something. Next to the emotion, however, there is also pain. I wouldn ’t like being so displayed or set up. Is it good for the haggard old demented man that he should stumble on the stage, and yet stand once more in the spotlight ? Does dignity require a last flickering of activity, or should it be that we observe, silent and helpful, to the final fading out ? Once again, and here too, we sense the helplessness that dementia provokes. Must a society centered on activity and events impose its imperatives until the last moment and as far as the insane ? Or should we say : enough. Leave them be. The dementia-friendly community that is only created because we can ’t stand dementia, is the wrong way. On the other hand, the dementia-friendly community that stems from the thought that no human 22

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being can survive without being addressed by others, that community is possibly doing something right and important. Yes, the increase in dementia has obviously something to do with aging. In a way, dementia is surely something like a symptom of aging, and the increase in the numbers of the old and very old in Germany and Europe will turn the topic of dementia into an issue of growth, as it has already been suggested. It is amazing that today we seem to be surrounded by crises of growth. The desirable economic growth is the core message of all parties, but at the same time the dreaded growth of the world ’s population or the growth of environmental problems are exponential. And now even that of dementia. It grows, at least emotionally, almost exponentially; the problems associated with it are also growing exponentially, as is the related caring apparatus. Dementia is like a kick to an ant-hill : it sets off an excited scurrying to and fro because the order of the security society, which seemed to be guaranteed, has been disrupted. Perhaps at this very point we should pause and ask ourselves what is actually happening when we tie unabashedly the topic of dementia into the ubiquitous growth rhetoric. By this means, people with dementia are transformed into a ‘ problem population ’, into a statistical measure that allow individual destinies or individual faces to disappear, and that turn ‘ dementia ’ into a complex that must be ‘ treated ’ and ‘ managed ’. This is a major temptation that numbs the topic of dementia, turns it into a state of stupor, and thus basically tries to render it harmless. Once the issue of dementia is detached from concrete faces and becomes a ‘ problem ’, then the modern state and the health-care industry see themselves compelled to diagnose , measure, quantify the problem and to meet it with solutions, projects or models. ‘ Dementia ’ was indeed ‘ invented ’ about the beginning of the 1980s. Until then, there were various phenomena : cognitive disturbances, Alzheimer, delirium, old-age insanity. All of a sudden all of these phenomena ended up under the definitional umbrella of ‘ dementia ’. That is practical and beneficial for medicine, social work, and care-givers. By combining the various crazies under the concept of dementia it becomes possible to plan, conceptualize, raise funds, create jobs, and procure resources. New experts are trained; in ministries and communities, in hospitals and universities dementia specialists show up to cultivate the problematic field of dementia. Dementia becomes a source of funds from which institutes, projects, and 23

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service providers finance themselves. Not everything that emerges from all this is senseless. There is, however, the constant danger that the problem of dementia acquires a life of its own. That it is inflated to increase the flow of resources, and that, in case of doubt, tendencies emerge to create a dementia bureaucracy that, on closer inspection, people with dementia do not need at all. The medical-social dementia complex develops its own dynamic, which carries the risk of being interested primarily in its own growth. It is perhaps the task of citizens of either gender, and it is within their means, to turn again this ‘ complex problem ’ into an assembly of stories, faces, tragedies, experiences and ideas. The figures of 1.4 million or 3 millions are a kind of statistical threatening posture that has to be mollified by money, professionalism and activity, and that leads to pulling instruments, strategies, or even, summarily, ‘ approaches ’ out of the hat, instead of reflec­ ting on the re-animation of communities and neighborhoods in which those affected and their relatives live. There is a dementia alarmism that stands in a peculiar mismatch to the ‘ dementia ’ phenomenon. That is because the people for whom these projects are designed, and to whom the projects a­ pply, are obviously uninterested in this programming. Yes, they perhaps like to dance, or paint or sing. But no dance project and no dementia strategy will ever reach their brains or their hearts. In saying so, I am reminded of a story told by a friend who paints with people with dementia. In the nursing home, we are sitting in a side room separated by glass doors. The ladies and men who are painting are around a table, brush in hand, with a sheet of paper ­before them. Outside the nursing staff is running to and fro, pushing carts and wheelchairs. Mrs. B. asks Mrs. Z : ‘ Why are those outside running around ? ’. Mrs. Z. : ‘ I don ’t know ’. At this point, Mrs. G. joins in, and says : ‘ Hey, they are doing something for their health. They are keeping fit. ’ Have care-givers and those in their care ever existed next to each other in such a way ? It does often occur to me that the ‘ PwD ’ ( people with dementia have thus been reduced, disturbingly so, to an abbreviation ) act primarily to leave the ‘ normals ’ stranded or stumped. I see before me this table in a nursing home, around which crazy women and men are sitting. Others are snoozing in recliners or wheelchairs. A woman with wild hair at the table is beating incessantly a teddybear against the table, while screaming. Others are staring. Yet others are sleeping. A woman is arranging advertising brochures in a small case. A dignified older man, dressed oddly in a brown suit and tie, has placed 24

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his arms around a doll. It is as though he has a lecture manuscript with him – either that, or he is seeking affection and warmth. I think involuntarily of limbo, that place that the theologians have devised, the place where the unredeemed wait between heaven and hell. Are the demented in an advanced stage, then they sit there as though in a waiting room, or as in a play by Beckett or Sartre. The impression always imposes itself on me that these people in such dementia sections look like people who have survived a catastrophe, and now sit here as though numbed by it. And somehow that fits. As though the fear of isolation and the unbearable burden of the isolated individual have descended on them. And if you are ready to listen, then you discover similar phenomena sprouting everywhere : children who go crazy, and who have to be sedated with Ritalin; the burned-out or depressive middle aged; the number of those who have lost or deviated from the way or place is obviously increasing. Yes, but here, too, there is more that is recognizably man-made. How many of those who are dozing have been pharmaceutically sedated ? I see the overworked staff, the stressed-out relatives, and I cannot bring myself to a moral condemnation of this anaesthetic violence. We are dealing with a siren alarm emanating from those who are exhausted, and from those who can no longer cope. We know little of how people with dementia and their families feel. Many caring relatives – and these are primarily women – reach the edge of breakdowns. There is violence on both sides, there is sacrificing dedication, there is neglect, in other words there is everything that belongs to life. Now and then we can detect the alarm signals that inform us of the helplessness or cluelessness that mark our approach to dementia. Thus the pharmaceutical researcher Gerd Glaeske has worked out that, in Germany, almost 240,000 dementia patients are being incorrectly treated with psychopharmaceuticals.3 In 2012, throughout the Federal Republic almost 360,000 out of 1.1 million dementia patients were treated with antipsychotics. It is nothing but a matter of sedation; it is also bodily harm on a large scale. But those who do this are often, precisely, at the limit of their strength. These data, which speak of pharmaceutical violence, are confirmed by other countries. In the UK, in two cases out of three, drugs are given to dementia patients, which could have been avoided through better care for these patients. And it has been determined throughout the country that nursing homes have for years practiced overmedication with psychopharmaceuticals.4 25

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We have a society that no longer knows how to proceed. The topic of ‘ dementia ’ can drive you crazy. The longer I am concerned with it, the more I have the impression of having landed in a thorny bush, in which I am now caught, and the deeper I sink into it, the more hopeless becomes my release. I suspect that the dementia doers ( of which I am surely one ) and those affected by dementia tend to live in two worlds that have basically very little connection between them. The risk is that dementia experts of all kinds celebrate mostly themselves, and are intoxicated by their own involvement, whereas in the everyday life of those affected hardly anything changes. Perhaps we need the child who stands up in the crowd and, without inhibition, shouts out the truth : ‘ The emperor has no clothes ! ’ The dementia alliances, the dementia weeks, the dementia congresses, the dementia projects : none of them can really mislead us away from the fact that we have nothing and know nothing. For me, a 55-year old man, whom I have met, is the essence of the soul-searing dementia issue ( and his story, or a facsimile thereof, is constantly being repeated in many places ). He shares a house with his demented mother. She usually comes five times at night, wakes him, and says : ‘ K laus, the meal is ready. Are you coming ? ’ What should he do ? There is really no good answer to it. He can tie her to the bed, which occurs more often than we are willing to admit. He can fetter her pharmaceutically to the bed, which happens even more often. He can lock her door, or his. Or choose the ultima ratio : the nursing home. Not one of them is a good answer, we know that. And this – so I think sometimes – is perhaps the real secret of dementia. It is that it knocks whatever answers we may have from our hands, we who live in a nearly perfect world of doers. It is the insult that we who maintain space stations, and who have decoded man ’s genome, can ’t find an answer to this nerve-wracking insanity of the old. Maybe they, the old, dance in the woods at night and sing as in the Grimm fairytale : ‘ Ha, glad am I that no one knew, that Rumpelstiltskin I am styled ’ ? Dementia is the underground levels of rationality, and while above the Power-Point presentation on new strategies for dealing with dementia is taking place, directly underneath somebody is smearing the walls of his room with feces. The dementia-friendly community, which is what this book will talk about, is, as we will show, a two-sided undertaking. Does it also belong to the line of cheerily produced projects with which the topic of dementia can 26

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be made as invisible as possible ? Is it a convenient code or label that allows dementia practitioners and theoreticians to do their own thing ? Is it the communion wafer that district ( Landkreis ) administrators and mayors wave about, and pretend to heal with it the festering wounds of the communities ? We could claim to have initiated the idea of dementia-friendly communities in Germany and, in a rudimentary way, in Austria. It has since spread rapidly. Pleasure over this success is mixed with skepticism caused by the discernible tendencies to turn an undertaking, conceived as defiant or upsetting, into a ‘ smooth ’ project with which communities could embellish themselves, without any serious efforts to really change something. Further to this point, it is necessary, however, to discuss the birth of the idea, its diffusion, and the obstacles that oppose it. 2. Dementia-friendly communities : how did it start ? It all began for us when the Robert Bosch Foundation invited 70 experts from the fields of research, politics, nursing and medical care to discuss the issue of ‘ dementia ’ in regular meetings over two years ( 2004 – 2006 ). It was a time when dementia was not yet as present in the public arena as is now the case. What had arrived by then was the recognition that we in Germany live in an aging society, and that dementia – as was recognized by this initiative – would be part of it. Today the perception has changed; Klaus Doerner5 has said that our time must be designated as the century of dementia. The Foundation ’s initiative has, without question, shown itself to be far-sighted. The results were varied, but at the center was placed the recognition that the social side of dementia should receive greater attention6. It had become clear that medicine has ( temporarily ? ) no potential cures to offer, that the fear of dementia on the part of aging people was increasing, that health-care facilities had increasingly to deal with dementia, and that caring relatives were overburdened. It was also evident that the traditional family care was reaching its limits, that neighborhood assistance was dissipating, and that urbanization and societal change would lead to greater numbers of elderly persons living alone. In short : that the situation of people with dementia would become more difficult. The initiative ’s expert workshops have functioned under the heading of ‘ Together for a better life with dementia ’. In view of the fact that by then the 27

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social side had become more visible, the question then arose of what should be done. What should become of the conclusions of the experts ’ discussions ? After the end of the workshops, on the initiative of the Robert Bosch Foundation and in collaboration with several practitioners and theoreticians, the Aktion Demenz – Together for a better life with dementia ( Aktion Demenz. Gemeinsam fuer ein besseres Leben mit Demenz ) was founded in 2006 as a non-profit association7. The participants assumed that the difficulties of the people with dementia and their relatives would be felt first and foremost in the community – and that, under favorable circumstances, it was also there that they would most likely be socially ‘ cured ’. It is there in the community that the new isolation of the aged is visible; it is there in the community that the disintegration of the family is perceived; it is there that the relatives reach the limit of their capacities; and it is there, too, that the old who are in the beginning phases of confusion are, live alone, and are therefore especially vulnerable. They slide, isolated and frightened, more easily into the next phase of dementia than when they are imbedded in a social context. It is, therefore, that the Aktion Demenz – inspired by the Scottish Alzheimer Society – designated the concept of the Dementia-friendly ­Community as the focus of the work8. Aktion Demenz succeeded in securing funding from the Robert Bosch Foundation, which made it possible, in three successive calls for tender, to motivate communities to devote themselves to the issue of dementia. The response to the calls for tender was overwhelming – the range of the applications submitted was surprisingly varied, and alternated between small and large initiatives, between volunteer and more professionally-run projects, and between care-oriented and more ­participative proposals. ( Concerning the experience with the program and the projects that were authorized and implemented, cf. the following chapter ). Besides the projects authorized, the idea of dementia-friendly communities also elicited a strong response in other places; we can say that, in Germany, the impulse quickly spread beyond the projects authorized. In the Austrian state of Vorarlberg, a Dementia Campaign reg. assoc. was soon founded, and with which an intense collaboration then developed. In 2008, a kick-off event of the German Aktion Demenz took place in Esslingen near Stuttgart, which sought, as it turned out to strong resonance, to bring new impetus to the topic of dementia in the German public scene, and was therefore quite successful. 28

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It has to be recalled that, as recently as a decade ago, the view of dementia was primarily a medical one, and that a climate of fear and stigmatization clung to the topic of dementia. The event in Esslingen helped set in motion a change of course. The American neurologist Peter Whitehouse, in reviewing the time when the topic of ‘ dementia ’ began to acquire an audience and, at the same, prompted quite a few horror visions, has said : ‘ It was a rhetoric based on the premise that Alzheimer is a devastating disease which causes a loss of the self and requires a complete cure. This rhetoric has led to a cultural climate of fear and stigmatization, and has contributed to the social exclusion of people with cognitive disabilities. ’9

The special fear that the phenomenon of ‘ dementia ’ triggered, and still triggers off, is surely only to be explained against the background of our modern performance society. Ability to perform, autonomy, and individuality are the pillars of the modern self-image. The reference to the social community, to family connections, and to neighborhood ties pales in comparison. Dementia is, therefore, conceivably the greatest threat to homo modernissimus. Allow at this point the insertion of a reminiscence which serves as a background in order to make clearer the far-reaching changes to which we are exposed in our life and in our communal existence today. I have a simultaneously vague and clear recollection of an acquaintance I made in 1943, when I was five years old. After my family ’s apartment fell victim to the Hamburg fire storm, I was taken to the North-Frisian island of Nordstrand. There was to eat, there were no air-raid alarms, it was paradise. The large farm and the large family also owned a mill and a bakery. Unforgettable was the moment when a white-coated baker handed out a warm bun through the basement window of the bakery. And then there was aunt Hulda. She was – as we used to say in Hamburg – tueddelig ( doddery or befuddled ). We children used to whisper to each other that a fly had crawled in Aunt Hulda ’s ear, and now it was buzzing around in her brain, and making her a little crazy. Aunt Hulda today would presumably rate a diagnosis of dementia, Alzheimer or some such, but then it would have never occurred to anyone to consider her sick. She was simply in a normal way old, and therefore the dodderiness just happened. I remember Aunt Hulda, however, as 29

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somebody who was simply there. She fed the chickens, she darned socks, she peeled potatoes. I think she was also the one who slaughtered the chickens. She did what she could still do, and the rest had presumably vanished from her range of activities. The world, as I tell myself today, was comprehensible for her. The comprehension had something to do with grasping fingers and hands. For us today, who use primarily only the thumb for the smart-phone and for the TV remote, the comprehension of the world has become a disembodied thing. For Aunt Hulda there was no rehabilitation, no medicine, no dementia experts, but rather the clear words of the farmers and the miller : ‘ that won ’t do or that ’s not on, Hulda ! ’ When such an example is cited, one hears right away ‘ backward-looking ’, ‘ you can ’t turn the wheel of history backwards ! ’ Sometimes we are inclined to think that that is exactly what people with dementia do, that they turn the wheel of time backwards. And sometimes one has the impression that urban coldness and isolation in the communities must come to an end, and that the pictures from olden times could become lessons for that which we have to re-establish in a way that is appropriate to our time. The world in which we live is a different one, and therefore we need other ideas. If we try, however, to build a future without memory of what was before, our society would be precisely stamped with a diagnosis of ‘ dementia ’. The world in which we live is a world which systematically destroys memory or discriminates against it, as we are, just so, a society of the ‘ delete ’ key. Any excursion into ( past ) history seems to make people nervous and hysterical. We might think, at times, that the main culprit with regards to dementia is a society which does not want to remember anything anymore – and that the people with dementia simply realize what the agenda is : forgetting. Perhaps we have not achieved more than prompting the communities to reflect on the topic of dementia. The projects that we managed to instigate do not always cause a sensation, but locally they are often consequential. They have often originated from the commitment of professionals, whereas we had in mind more of a civic break with the past. Well, perhaps we are not there yet. Of course, as a result we have run the risk that, under the catchword of dementia-friendly communities, it has been more about the optimization of professional practice.10 30

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Will the idea fizzle out ? Even now when it is being supplemented by an ­expanded version promoted by the German Federal government – the ­so-called agenda Local Alliance for Dementia / Lokale Allianz fuer Demenz. With it, the health-care establishment has appropriated the topic, and thus it has been almost inevitably turned from the civic idea ( the ‘ upheaval ’ or at least the ‘ new departure ’ ) into one aspect of health care. This danger has always been present. We have seen how quickly District administrators and mayors have seized on the dementia-friendly communities. They grabbed them because the communities are broke, and yet they are increasingly faced with the issue of dementia. They, too, have right away sensed that the dementia-friendly communities are, above all, a new caring device that promised to be cost-neutral. This is understandable, but basically it must be finally grasped that we need a new conviviality : a revolution in social life.11 To this end, in November 2008 we formulated, in the so-called Esslingen Call to Action ( Esslinger Aufruf ), five leading themes that, in a way, represent a Charter of the Aktion Demenz. 1. People with dementia are citizens ! Until now, we have treated and cared for people with dementia as patients. This is not enough. We have, however, often found it difficult to relate to them as men and women citizens. 2. People with dementia belong with us ! We can and must do much more to see to it that people with dementia and their families do not withdraw and are driven into isolation. 3. People with dementia have rights ! The rights of people with dementia are curtailed in daily life, often for caretaking reasons. We should make sure that these people can continue to do what they are able to do. 4. People with dementia concern us all ! How we live in old age, how we nurture and look after, and whether or not we share responsibilities and rekindle our social interactions – these are concerns for all of us in our society : the young and old, politics and administration, art and culture, caring relatives as well as nursing professionals, 31

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the churches, businesses, trade unions, sports, and all the other persons who have civic commitments. 5. People with dementia need our imagination ! We want a communal life in which all have a sense of responsibility for one another. To this end, we shall have to leave well-trodden paths. As a result, the objectives of Aktion Demenz were, above all, focused on two topical areas : ·· Awareness-raising for the issue of dementia, in order to extract it from the dead end of stigmatization, marginalization, and of horror scenarios; ·· Practical politics ( and politics not only as a matter for professional politicians of either gender ) in the community which should primarily concentrate on a new departure for civil society, not conceived as dispensing with the network of professional service providers, but rather keeping in sight that which the paid service providers barely can or cannot do : weaving together a network of outreach and neighborly cooperation. The agenda included not only the re-discovery of neighborliness in its broadest sense, but also the enrichment of the community with knowledge. The cashier at the scanner in the supermarket was supposed to know that the old lady who fails to pay and shoves her trolley right past the check-out counter is no shop-lifter, but rather the victim of confusion. The policeman, the fireman, the lady bus driver, the woman in the newspaper kiosk, all of them can be more helpful if they know something about the phenomenon of dementia. The difficult situation does not vanish by itself when the bank teller notices that somebody constantly withdraws ten euros. The reaction, however, can be thought through more effectively. ( And, by knowledge, we don ’t mean factual knowledge dispensed in briefings, but rather an awareness, a knowledge of the need for empathy and sensitivity ). It is, on the one hand, the hour of compassion, of empathy, but also the hour in which the rights of people with dementia are to be respected. The concept of the dementia-friendly communities rests on the notion that is not a matter of trivializing dementia, but much more one of ending its demonization and, in the best sense of the term, of normalizing it. 32

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‘ It starts with children, as early as nursery school and in the schools where they learn that some people are different, and somehow comical. It may be strange that an old man puts his shoe in the fridge, but it is not threatening. It is a little painful alright when it is your own grandfather, but understanding promotes sympathy. This grandfather belongs just as much as his children and grandchildren, who sometimes are totally irritated by him. ’12

The respect for people with dementia also requires that we, to begin with, should try to listen to them. They are also the ones who, in akward situations, are often the competent interpreters of their situation. In dealing with the handicapped, the saying is often heard : ‘ Not about us without us ’. In dealing with dementia this is sometimes impossible, but the possibilities in this respect have not yet been exhausted. The encouragement should be added here to approach dementia spontaneously, which to this day remains a difficult area. In the dementia-friendly community, once it acquires a period of sustained implementation, nobody is lost or left behind. Somebody keeps going, for example, on bicycle tours, but perhaps he or she does not exactly ride in the lead. The singers in the church choir tolerate it when their nolonger-in-her-prime soprano insists on singing the Hallelujah, even when something entirely different is on the program. They explain it to her patiently.13 More of this, however, in the next chapter. What is decisive is that dementia-friendly community does not develop as a new version of health care : it should remain in the hands of the citizens. At first glance, this appears hopeless. After all, what works in the communities without money and professionalism ? Isn ’t every day more and more of the familial and neighborly solidarity replaced by remunerated services ? Isn ’t everything more reliable, better and safer in the hands of professional service providers ? On its side, the dementia-friendly community has two arguments : ·· The remunerated provision of services will never be able to perform and offer all that is needed and desired.

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·· The perfect provision of services will never be able to offer what people with dementia need the most : that somebody is there for them. As a familiar you. As a human being. As a counterpart. Theology knows, from analogy to the Bible, an interesting and exciting concept, that of creatio ex nihilo. The creation of the world from nothing. The dementia-friendly community wants nothing more and nothing less : it wants to create, from the ruins of a community marked by commerce and competition and that has become an uninhabitable place, a livable space, livable for all, the workers and the handicapped, the unemployed and the workaholics, the young and the old... 3. The humus of the community – premises for a dementia-friendly community The development of the city and of society has led to a state in which life, and that which holds people together, have largely succumbed to decline or disappeared. What still seems to be alive is, in general, connected to the consumption of goods and services. The department stores and the taverns are full. Otherwise there is the stillness of death; sometimes one could gain the impression that cities are places inhabited by individuals who take their dogs for walks and go by one another. It is as though the communities are waiting to be reawakened to life. That might end up with a turn away from senseless consumption, from the non-culture of the event, to a time of new departures, of encounter and conviviality. Within this consumer monoculture what is now required is to reinvent the cooperative interactions among persons. With the participation of people with dementia. The many-faceted communal We was formerly an element of the conditio humana, of the living condition of people in their immediate surroundings. The first person plural is the blossom that emerges from this, in the sense that what is in common is shared. The ‘ We ’ belongs to the ‘ commons ’ that characterize the community. Today this ‘ We ’ has been replaced by a statistical ‘ We ’, which is counted, classified and managed. Typical of this statistical ‘ We ’ is the bar chart. This new ‘ We ’ is hollow; it appears in the speeches of ministerial officials and of managers; it is the object of planning and regulation. The ‘ We ’ that is mentioned in the dementia-friendly communities is the ‘ We ’ that consists of living subjects who have not become 34

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faceless. It is possible to demonstrate most clearly what is meant here by thinking about meals. These take place ever more rarely at a common table. The industrial grub that has replaced meals, and that is brought by a pizza delivery man, feeds the individual who no longer relies on a ‘ We ’.14 The Mexican sociologist and philosopher Gustavo Esteva has described, together with the Indian Madhu Suri Prakash, the life and disappearance of the community. In Mexico, the comida, or communal meal, is at the basis of the communal culture. The comida disappears where people buy, prepare and cook their food in order to feed the industrial man, the individual self. The reanimation of the community begins, according to Esteva and Prakash, where people try to escape from the prison of industrial food . Also, where the ‘ We ’, the common action that is not administratively planned nor sponsored by paid coordinators, takes place. Where people with dementia peel potatoes, not for pedagogical or socio-therapeutic reasons, but rather where they participate in a common task according to their abilities; or just simply because they are around. Meals are just one of many possible approaches. It is always a matter of rediscovering oneself, or the rediscovery of survival in the sprawling spaces of communities, stripped of communication. Urban gardens are an example of a grassroots civic activity : the collective cultivation of dead spaces. By extension, it is possible to imagine an urban garden that occupies and revitalizes dead areas of communication or interaction. Guerilla gardening is the attempt to occupy the unused, yet inviting, spaces within the community. The dementia-friendly communities, should they blossom, could stage guerilla communicating : the expansion of zones of spontaneous, that is not organized, human encounters. Areas in which even the crazies could find their place. Yes, it is a dream. The issue of dementia and the topic of community, however, are precisely crying out for unconventional or not yet imagined answers to the great helplessness or cluelessness. It is a matter of gathering the cultural humus, and to cover the community with a new revitalizing layer on which communality can grow. Why should a self-aware and creative citizenry not be in a position to create the substrate for a spontaneous or non-administrative fullness of meaning, a surprising solidarity, or for more cordial everyday relationships ?

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4. Dementia shines a light on it : on the way to a new conviviality Yesterday the old man was still weeding his garden, today he is being operated on ( actually for something trivial ), and tomorrow he reawakens in a nursing home. This is not a rare occurrence, says the internist from the university hospital. The delirium, which at the start was a temporary consequence of the anaesthesia, quickly becomes dementia in an unfamiliar new setting. The old man finds himself in Tithonos ’s cage, no longer recognizes anything, and, furious, disappointed and embittered, he even denies recognizing his visiting daughter : ‘ I don ’t know who you are ’. Stories about dementia are also stories of disappointed hopes, of despair, and of misunderstandings. I found the following counter-example, told to me by Guenther M., very enlightening. ‘ I saw to it that my mother would be terrorized ’, he said. She had returned, confused, from the hospital to the village. It didn ’t look as though she would ever manage alone again. So Guenther rang the doorbells and knocked on the doors of all the villagers. He asked each one of them to go by his mother, and to talk to her. And this is what happened, in the nicest sense of the word she didn ’t have a minute to herself. ‘ I saw to it that she was terrorized by all the neighbors ’. And after some time the confusion left her. Now she can cope again on her own. Of course, it doesn ’t always happen that way. The story, however, provides a few hints. It says that a dense communicative network, the expression of the other, being addressed, the informal ‘ you ’, a live voice, the presence of daily life ( ‘ Do you also have such big zucchini in your garden ’ ? ‘ Did the slugs eat everything at your place, too ? ’ ) serve to reconnect to life. Life stays comprehensible, because it can be grasped. In contrast, the nursing home must remain a contraption, maybe owing to its glass and steel construction. Even if it displays a dementia-friendly, barrier-free architecture : it can never be anything else but an artificial uterus, a cage for Tithonos, in which remunerated service providers restructure life – and every affected person knows it. It is, and in the near-term it will remain, the emergency solution that we need; indeed, the number of Tithonos cages is rather likely to grow. In them, we can be looked after, but participating in life we do not. It is, however, possible to imagine that nursing homes do not see themselves as custodial institutions, but rather open their doors to a surrounding community that has itself discovered that it might be interested in those who have been shunted off or are in need of care. 36

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I shall never forget how, many years ago, I visited a farmer from Schles­ wig-Holstein, a relative, in the Hamburg University Hospital after an operation, how I eventually fetched him, and how he, first thing and as soon as he stepped outside, he bent over, grabbed a handful of soil, and smelled it. A return to life. Also, a symbol of the past; today we are more likely to reach for the smartphone than for the soil on leaving the hospital. Dementia, however, always seems to me like a special expression of this separation or cutting-off that mark our life. The demented are symbolic figures of a society in which the old social settings have melted away. A growing number of people no longer really have a family or a neighborhood. The normal pattern of e­ xistence is being alone, and a lack of direction, because no one remembers how it is possible to age without simply spending time, be it months or years. The frantic traveling, that today belongs to old age as ketchup belongs to a curry sausage, is a desperate attempt to escape the old age imposed on us by the performance society that has descended on us. The number of those who can no longer cope with this modern performance society is growing. And so we may – regardless of whether we lean towards a medical or social, a pharmacological or a nutritional-physiolo­ gical explanation of dementia – consider dementia in all cases as something like a gerontological burn-out. The setting is easily described : old people are primarily single. If they are lucky, they still have a partner with whom they can quarrel and reconcile. As a rule, they live and are housed alone. In Germany, every second person over 85 lives alone. Family c­ onnections have disappeared or are crumbling. Most children live far away, and they are often so busy that they cannot look after the old systematically. Or wish to do so. The majority of people with dementia are still cared for by relatives, mainly by women. It is foreseeable, however, that this family care, for various reasons, will fade out. An examination of our communities makes it clear that they are deserts as far as communications or interactions are concerned. Life stirs in specific settings of large cities, at least on the surface. Communal life is reduced to shopping malls, movie centers, and to catering venues. On the occasions of street festivals and Christmas markets, this void that exists among people is brought to the fore. Communal life does not seem to occur anymore. Sometimes one is tempted to think that the old would rather be crazy than leave themselves open to this mad mix of loneliness, shopping and unkindness. 37

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The ‘ demented ’ are the truth of this society. This is because this society aims to destroy connections; it is turning into a conglomerate of isolated indivi­ duals, and it cannot gain anything from aging because only youth counts. Whereas the service providers try frantically to perform optimally in order to keep up, those who no longer belong to this group are basically the wrecks who eke out an existence in those communal cracks and gaps of the performance society that have not yet been swept out. In Trier, for example, there are only children in every seventh household. A fact that testifies dramatically to the changes in the communal spheres of life. Such observations are subject to taboos. Any reference to that which we have lost arouses a suspicion of romanticism, cultural pessimism or of regression. All of this only serves to strengthen the frantic attempt to repress all memory. That communal life is becoming more inhuman and unbearable is painfully evident among people with dementia, provided one takes the trouble to notice something along these lines through a calloused soul. Just one example to illustrate the difficulties and the need to re-sensitize ourselves. It reveals clearly the fundamental changes in our daily life. The media and communications expert Heinz Buddemeier juxtaposes these two images which reveal the changes in our experience of everyday communal life : ‘ First image : a person goes through a village. The cobblestones echo his steps. From an open window he hears a child ’s laughter. In the church, an organist rehearses a chorale, which will be sung later by the community. From the last farm, a dog barks at him as he goes by. Second image : a person is standing at a bus stop. Countless cars go by. They make so much noise that the birds, which are singing and twittering in the tree next to the bus stop, can hardly be heard. In the bus, people are reading or are listening to music through their earphones. The bus stops are announced over a loudspeaker by a recorded voice. At home, the person meets his fellow occupants. He chats with some of them. At this time, background music is heard. Later, they all watch the same TV show. ’15

Dementia : that is the truth of this society.

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The Dementia-Friendly Community – A Daring Venture

Somehow, it is uncanny – people with dementia get to the heart of the matter. To my mind, two aspects are at the forefront of the matter : this society in which we live is relentlessly busy destroying the ‘ We ’, and producing the ‘ I ’ – the isolated ego that optimizes itself but nobody no longer needs – from daycare nursery to short-term care. Turn it on its head and see it upside-down, and the people with dementia become the perfecters of this societal goal. Now, right away people will say, yes, it was so but it was not meant to be so. Right. But aren ’t people with dementia precisely radical individuals who sometimes no longer perceive the others at all ? They become then to some extent the indispensable counterweight to the society of ( the seemingly ) normals. They are, of course, at the same time the victims of this process. They are the desired single – though one with negative early symptoms or omens. At the same time, people with dementia meet another condition of society. They live in an unstable present or in a fictional past, without memory of the past or an interest in the future. This is the goal proclaimed by almost all religions : enlightenment comes from living in the here and now. Here, too, the implementation is a crux, a puzzling ambiguous image or optical illusion : these people are nodal points in the caring networks, but their concrete reality is lost from sight. When ministers pay more and more lip service to the ‘ neighborhood ’, we should become vigilant. The facts of the matter are such that they lead one to conclude the state of the neighborhoods is deplorable. Great, that local sites are discovered, but when a location ends up in the hands of planning bureaucrats, it is done for. From what used to be a neighborhood, however, there is not much left anyway. A viable neighborhood is not created from above, but rather from the bottom up. PS : The Swiss writer Gerhard Meier, in a discussion with Werner Morlang16 has said something exceedingly important on the subject of dementia – without mentioning it : ‘ Whereby I have respect for the intellect, and would like it to play a role, but you know : the rest of the world relies entirely on the intellect. Those who do not rely on the intellect are the children, the mongoloids, in part the old, and perhaps, just so, the artists. These are those people who care about what the world otherwise doesn ’t care about. The world wants to 39

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get a grip on life, and this can only happen via the reason. Tolstoy once said : “ When we claim that human life can only be directed by reason, we thus remove the possibility of living ”. I have, therefore, always had good relationship to children or swallows. These are creatures that live more holistically, not only with the intellect, but rather with yet other instruments, with instinct or with feelings. ’17

These are not propositions that romanticize the deplorable state of people with dementia. They are, however, propositions that challenge the dominant claim of a rational society that risks seeing in other domains – in feelings or in intuition, for example, which in people with dementia surely play a greater role than we admit to ourselves – only intellectual deficits : the standard deviation. Has anyone ever expressed better the plight of those who need assistance than that ‘ demented ’ woman who says : ‘ They are coming with a rocket and they are bringing food and drink to the poor. ’18 Hearing the Voice of People with Dementia...They have something to say to us.

Endnotes 1

A song by Laurie Anderson : The beginning of memory [on Youtube]

2 Report on  : http  : / /www.faz.net / aktuell / politik / sterbehilfe-darf-er-odermuss-er-­sterben-13156644.html [‘  A ssisted dying-can he or must he die  ’] 3 Gerd Glaeske cited in aerztezeitung.de of 26.03.2012. 4 Reported by Thomas Klie in a lecture on the topic of ‘ Redufix ’; see also Rudolph Hirsch in : ‘ Alzheimer Info ’, 3 / 2011. 5 Probably best known in English for his  ’Madmen and the Bourgeoisie : Social History of Insanity and Psychiatry ’. 6 The outcome of this meeting of experts is the seven-volume work published by the Robert Bosch Foundation : ‘ Gemeinsam fuer ein besseres Leben mit Demenz ’, Bern, 2007 [‘ Together for a better life with dementia ’] 7 The governing council of the non-profit association ‘ Aktion Demenz – Gemeinsam fuer ein besseres Leben mit Demenz ’ includes / included Dr. Bernadette Klapper ( Robert Bosch Foundation ), occasionally; Prof. Dr. Thomas Klie ( Ev. Fachhochschule Freiburg ); Dr. Gabriele Kreutzner ( Demenz Support Stuttgart, vice-chairwoman ); Heike von Luetzau-Hohlbein ( Deutsche Alzheimer Gesellschaft ); Christian Petzold ( Berlin ); Burkhard Plemper ( Hamburg ); Willi Rueckert ( Kuratorium Deutsche Altershilfe ); Carmen Tillmann ( Berlin ), occasionally; Brigitte Voss ( Rendsburg ), occasionally; Peter Wissmann ( Demenz Support

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The Dementia-Friendly Community – A Daring Venture Stuttgart, vice-chairman ), Prof. Dr. Dr. Reimer Gronemeyer ( Chairman ). The office and initiative has been led since the beginning by Verena Rothe. 8 Mary Marshall, professor emerita at the University of Stirling, has played an important role in this connection. 9 Cited by Dr. Mabuse, M.D., 2009, p. 28. I owe this reference to a manuscript by Burkhard Plemper. 10 This has been clearly outlined by Hermann Brandenburg and Matthias Bruenett in : Demenzfreundliche Kommunen in Deutschland und England, in : Sozialer Fortschritt, vol. 8 ( 2014 ), pp. 190 – 196. 11 Cf. on this subject : Les Convivialistes : Das konvivialistische Manifest. Fuer eine neue Kunst des Zusammenlebens; published by Frank Adloff and Claus Leggewie, Bielefeld, 2014. 12 Burkhard Plemper op. cit. 13 Ibid. 14 Cf. Ivan Illich cited by Gustavo Esteva & Madhu Suri Prakash  : Grassroots Post-Modernism. Remaking the soil of cultures : London, 1997, p. 52. 15 Heinz Buddemeier : Das Hoeren : Rastatt, 1996, p. 5 ( published by the Anthroposophischer Verein fuer Heilwesen, reg. assoc. ) 16 Swiss literary scholar, 1949 – 2015 17 Gerhard Meier / Werner Morlang : Das dunkle Fest des Lebens : Anrainer Gespraeche, 4th ed., Oberhofen, 2007, p. 277. 18 I owe this quote to Oliver Schultz who works artistically with people with dementia.

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PEOPLE IN THE COMMUNITY LIVING WITH DEMENTIA – THE PROGRAMME VERENA ROTHE

‘ Encountering a human being means being kept awake by an enigma. ’ Emmanuel Lévinas

1. Paving the way to dementia-friendly communities ? As the first part of this book has made clear, dementia is one of the big challenges of our ageing society – and yet, at the same time, it can also be an opportunity. People with dementia need the help of their friends and families, but also a wider social environment that supports and enables them to participate in everyday social life. This environment is shaped by the actions of individuals as much as those of communities and the wider public more generally. We, as members of such communities, need to face our prejudices and fears in regards to dementia. We need to stimulate and jointly shape new ways of living together that are based on mutual appreciation and respect. 1.1 Re-imagining communities Providing for the well-being of its members is the main task of a community, politically and legally. One of the ways in which this can be done is to build care structures. However, while we do not mean to relieve government of its 43

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responsibility, we have learned that actually improving the situation of elderly and chronically ill people in need of help, as well as that of their friends and families1, requires more than that; it requires developing and living ways of jointly taking responsibility in towns and communities. As part of current demographic and social changes, citizens, politicians and other local social actors must reinvent their communities from within. This means getting active in our neighbourhoods, districts, villages and municipalities for a community worth living in – for people living with dementia and all others. This chapter presents many valuable short anecdotes that offer insights and inspiration, raise awareness, and make the objective of building dementia-friendly communities more tangible. Our efforts have allowed us to put together a colourful selection of stories – like a bouquet, or maybe a collection of mosaic tiles –, which we present here along with our comments and in the light of different approaches, experiences and results. We hope that as you explore this chapter, you will find ‘ treasures ’ that are of significance to you personally. We hope that you will experience moments of surprise, agreement, sadness, discouragement and encouragement. Dementia is a topic that concerns all of us, as individuals as much as members of our communities. Of course, we are only in the position to invite you to this journey thanks to the considerable efforts of all those who invested time, blood, sweat and tears in the projects in their own local communities that this book is about. Even if some goals could not be achieved in exactly the way they had been imagined at first, we have taken an important step that allows the involved initiatives as well as everyone else interested or ‘ affected ’ to benefit from one another. One might even say that those involved all helped begin a new social practice, with all the insecurities and failures that come along with such an endeavour. The third part of this book will focus on this aspect of a new culture of living with each other. 1.2 The programme – a complex endeavour Sponsored by the Robert Bosch Foundation, Aktion Demenz implemented the funding programme Menschen mit Demenz in der Kommune ( ‘ People in the community living with dementia ’ ) in three iterations from 2008 to 2016. 44

People in the community living with dementia – the programme

Within the framework of this initiative, the Robert Bosch Foundation provided funding for local projects across Germany that have dementia within their remit and implement civil society activities aimed at supporting people with dementia, hopefully enabling their participation in society – and thereby helping to create communities in which people with dementia and their friends and families can live comfortably and are included not only in theory but in lived reality. We defined the programme framework and details with the Robert Bosch Foundation. These included the calls for projects for the three funding cycles that occurred, criteria for deciding which projects to fund, and implementation details. The three funding cycles differed slightly in regards to their foci. The last funding cycle emphasised the following aspects : ·· interactions and encounters between people with and without dementia, and attempts at grappling with each other ’s ‘ worlds ’, as well as experiences of dementia as a ‘ way of being ’ in our time, ·· participation and activity by people with dementia and their contribution to our society ’s cultural diversity / wealth, ·· networks between diverse community members for and with people with dementia and their friends and families ( so-called Kummerbünde – ‘ grieving groups ’ ). The Robert Bosch Foundation adapted the form and style of the call for projects in a similar way to those of the funding programmes Internationales Hospitationsprogramm Pflege und Gesundheit ( ‘ International guest programme nursing and health ’ ) and Internationales Studien- und Fortbildungs-Programm Demenz ( ‘ International educational programme dementia ’ ) ( both of which were managed by the G-Plus-Zentrum im internationalen Gesundheitswesen – ‘ G-Plus International Health Care Centre ’ ). The office and board of Aktion Demenz intensified their efforts to inform communities and individuals ahead of the application period, and the thematic focus ‘ dementia-friendly community ’ was expanded upon further. As part of the programme, networking workshops with the funded projects were realised, and in the third cycle, there were three events aimed at bringing together projects from all three cycles based on regional affiliation. 45

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1.3 Selecting the projects Selected projects were expected to serve as models and invite imitation, e. g. projects that ·· foster contact between people with and without dementia, ·· support direct, everyday help and exchange between neighbours, and encourage networks of solidarity, ·· enable people living with dementia and their friends and families to actively participate in their communities, ·· make the voices of people living with dementia heard as well as protect and strengthen their rights, ·· create awareness among the general public and work towards a shift in public attitude, ·· initiate joint action by different social actors to form better ways of dealing with dementia. These general characteristics formed the basis for the selection process. The selection process also considered whether a given project would : ·· sensitise the general public, ·· provide a ‘ different perspective ’ on dementia, and have the potential to shift the general public ’s image of people living with dementia in a positive direction, ·· be embedded in a regional context with their respective co-operation partners, ·· be implemented by a team of both professionals and volunteers, ·· target specific groups ( e. g. people living with dementia, friends and families, volunteering, the retail sector / economy / public service, professionals from various domains, politicians, the general public ), ·· include particular facets ( e. g. being cross-generational, including art and culture, considering migration ), ·· be in alignment with the initiative ’s understanding of civil society ( people in the community living with dementia ! ).

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People in the community living with dementia – the programme

Additionally, the following general criteria were also taken into consideration : ·· ·· ·· ·· ··

sustainability, innovation / creativity/‘ special qualities ’, soundness of goals and expected results, general presentation, conceptualisation, planning, breadth or specificity.

One aspect that made this initiative special was our attempt to include and support smaller projects despite the hurdles presented by the formal application process. This was particularly important considering that one of our core goals was to explore what each and every individual can do, and how grassroots projects can be supported effectively. 1.4 The target group Aktion Demenz believes that dementia is a topic that concerns all of us. We ourselves or people from our close family and social environment may have or get dementia, and individuals who live with dementia are not simply sick people in need of help and care but members of our communities like everyone else. This is why we address those who are directly affected, i.e. people who live with dementia and their friends and families, but also those who work with dementia in a professional context : care workers, medical professionals, social workers and those from other disciplines, as well as local groups of the Alzheimer ’s Association in Germany and other support and selfhelp groups. Our main focus, however, lies on the many other social actors that are concerned by dementia in some form, and who are constantly challenged by it to act for themselves as well as others. A non-exhaustive list of these actors includes, for example, politicians and community leaders ( e. g. advisors and committees of all sorts, etc. ), artists, religious centres such as churches, associations, journalists and the media, police and fire departments, traffic experts, housing associations, city planners, the retail sector and the economy, unions, old and young people, professionals and laypeople.

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1.5 Evaluation – helpful impulses for others After consultation with the Robert Bosch Foundation, responsibility for evaluating the projects was given to Dr Charlotte Jurk, currently at the Fachhochschule Ludwigshafen am Rhein ( ‘ University of Applied Sciences Ludwigshafen on the Rhine ’ ). For the first cycle, this meant an evaluation of the final project reports, and additional comments from an external perspective on a selection of projects for the second and third cycles. This evaluation was carried out in a systemic manner that aimed to understand the complexities of practice, learn from them, and feed this knowledge back into the various projects. In carrying out single and group interviews, a conscious effort was made for them to reflect the diversity of the projects. Consequently, all of the various regions, actors and social domains were involved. The interviews were conducted locally, with the number of participants varying drastically from location to location. While sometimes caused by holidays or time constraints, this variation also reflected the stark differences in the numbers of people who were responsible in practice. The group interviews took the form of group discussions in which participants were encouraged to reflect upon their actions and talk about their positive experiences as well as the challenges they had faced. This more in-depth reflection embedded in local contexts proved very helpful for all projects and even beyond. The evaluation has also fed into this publication, as it has made the experiences gained from the supported projects available to future initiatives. Dr Jurk was a long-time social worker in a psychiatric clinic and has conducted research on health and healthcare as a social science lecturer in Wiesbaden and Gießen. Therefore, she could incorporate practical as well as theoretical experiences into her evaluation : ‘ Dementia-friendly communities are still a new way of dealing with the phenomenon of ageing, which requires project team members as well as the addressed institutions and citizens to change their ways of thinking about the topic. The supported projects have kicked off a form of social practice whose complexity is best understood when representatives of all those involved in a project can report and reflect on their experiences together. This is why the evaluation is based primarily on directed group discussions within the individual projects. In these discussions, the indi48

People in the community living with dementia – the programme

vidual social actors ’ various perspectives come together, and their interactions become clear. At the same time, these group discussions, as places of concentrated reflection, also affected and informed the projects ’ practices. Thus, evaluation is a shared learning experience from social practice. Group discussions provide a space of joint reflection – pauses in which goals and means can be newly reflected upon. Issues of content as well as conceptual questions can be examined together. In a best-case scenario, this exchange with each other as well as the evaluators allows for corrections or changes to the project ’s social practices. At the very least, it allows those involved to become aware of their project ’s current state, which enables sharing their experiences with other, future initiatives. ’

The results from this evaluation have also had an impact on this publication. The following non-exhaustive list of questions shows the wide range of questions that the evaluation tackled : ·· To what extent are people affected by dementia actually involved in the project ? ·· How broad is the range of social actors involved ? ·· Has the project managed to engage people who had not seen themselves as concerned by the issues before ? ·· What is easy / hard to get across ? ·· With whom is it easy to co-operate ? Where were resistances encountered ? ·· Why is the idea of a dementia-friendly community so difficult to understand ? ·· What makes people think beyond professional care structures ? ·· Could it be necessary to transcend institutional frames ? ·· Might we need more courage and creativity in imagining what might be possible ? ·· Which specific aspects from a given local situation can be applied to other communities and which cannot ? 49

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1.6 Experiences make a difference ! The People in the community living with dementia initiative was a great opportunity for implementing dementia-friendly communities as a model effort by civil society addressing the urgent needs of an ageing population. We want to learn from this experience, communicate our results and inspire a snowball effect. This seems all the more important as no medical solution for curing dementia is likely to arise within the next few years, and as the roles of relatives are going to shift or even change drastically. This book is important to Aktion Demenz and the Robert Bosch Foundation as a source of inspiration –  a reflection on what helps and what does not, but also a collection of examples, experiences and stories that help make the idea of dementia-friendly communities tangible. To elaborate and expand on this last facet, we used the motto ‘ Experiences make a difference – Invitation to share ’ as part of the 3rd cycle to invite people to share their experiences and encounters. Our aim is for these experiences to reach beyond their local contexts and touch others. We asked the following questions of project members, meant to show that many little stories can sharpen our awareness and help us develop new social skills, awareness, and caring instincts. ·· Can you think of events and situations in your everyday lives in which bits of ‘ dementia-friendliness ’ have already become a reality ? How does dementia-friendliness manifest ? ·· Which moments and small gestures of mutual support, empathy, seemingly surprising openness or casual help have you noticed ? ·· Have you perhaps been in a situation where you simply could not find a solution, no matter how hard you thought about it – and then, something happened or someone came along, and all of a sudden you were able to see an astonishingly easy solution ? ·· What hurdles and obstacles have you encountered that have prevented individuals who are ‘ different ’ – barely or significantly, physically or mentally – from encountering one another without reservation ? ·· Have you met people who seemed to be completely dependent on external help but became helpers themselves, enriching lives and reminding others of what really matters ?

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People in the community living with dementia – the programme

·· Has something changed since you started working for a better life with dementia ? Let us know what and how !2 You will find some of the stories that emerged from this project in this book. If you are interested in spreading these questions and our flyer in your own community, feel free to contact us. Maybe this will help motivate others to share their own local, specific, special stories. 1.7 Diversity as a guiding principle Strictly speaking, there are no dementia-friendly communities yet, but rather communities on their way to becoming dementia-friendly. That is why the funded projects take a wide variety of different forms. For example, they may be about casual offers of help in people ’s everyday lives, acceptance and understanding, practical support in the population or neighbourhood, or openness and interdisciplinarity by those who deal with the topic in a professional capacity. In any case, directly involving people living with dementia, their friends and families, and volunteers is crucial for achieving better lives with ( and without ) dementia. Developing creative forms of support, engagement on a small and everyday scale, and developing more nuanced images It ’s about mutual solidarity. and imaginations all contribute to this goal. What needs to be considered above all, however, is that providing inspiration and impetuses for dementia-friendly communities is a long-term goal that requires co-operation between many local actors – and, in the end, benefits all of them. How do we transform our villages, towns, cities and communities into places that make a better life with dementia possible ? This call to create dementia-friendly communities allowed us to encourage local initiatives in several places in Germany or locate already existing efforts.3 They span local initiatives that realise targeted projects – e. g. on dementia and migration, dementia and art, or dementia and children / young people –, and projects with a broader focus such as public campaigns, networking, raising awareness and inspiring others. Projects further include joint guided tours in museums for people with and without dementia; ‘ dementia companions ’ in clubs, societies and faith groups; joint 51

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sports activities; trainings on how to treat people with dementia for fire service staff and people working in retail or in administration; everyday ordinary interactions with people with dementia; and casual help in everyday situations. These are all efforts that seek to help people living with dementia continue to take part in social life and, in the long run, to effect a shift in public awareness. We have created the ( German-language ) Internet platform Unterwegs zu demenzfreundlichen Kommunen ( ‘ Paving the way to dementia-friendly communities ’ ), available at www.demenzfreundliche-kommunen.de, to provide a Living diversity is an important guiding principle. space where examples such as these can be made more widely known, and to encourage other initiatives to develop their own, localised projects. So far, the web platform has mainly been used by the funded projects for presenting their activities as well as getting in touch with and learning from others. Calling for dementia-friendly communities – which, in the long run, really means calling for ‘ human-friendly ’ communities inclusive of everyone – does not mean an isolated expansion of professional medical and care structures or simply raising the amount of money provided to hospitals and nursing homes by national and regional public bodies. For the communities we envision to become reality, longer-term changes on all levels of society are required, including encouraging more mutual solidarity. Equal participation in society can only be achieved if we are all willing to dismantle old, restrictive structures, build new ones, rebuild current ones, and learn how to live with people with dementia in everyday and organic ways. The following points may be of relevance to concrete local action : ·· sensitising and raising awareness among the general public, ·· encouraging contact between people who live with dementia and people who do not, ·· developing ideas for and forms of shared responsibility and co-operation by / with all local social bodies and the wider local population, ·· designing local environments so that they meet people ’s needs ( e. g. accessibility, technical infrastructure, neighbourly support ), ·· exploring creative approaches by including artistic and cultural forms of engagement. 52

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One important goal shared across projects is bringing people with and without dementia together within their community. Such engagements lead to mutual understanding and lasting improvements to the living situation of people living with dementia and their friends and families. After all, an open, empathetic community environment can temper the progression of dementia, help those affected and their friends and families deal with the situation, and have a positive impact on the community in general.4 This is why we hope ( and have in some cases already seen ) that the projects funded to date inspire other communities in their respective regions and beyond to develop their own ideas and projects, and share their experiences. Thoughts on dementia-friendly communities that push towards a new culture of mutual help and support are also relevant for tackling other social issues. This will be explored in more detail in the third chapter of this book. They can, for example, be applied to : ·· our approach to ageing in general, ·· our understanding of the finitude of human life, ·· our attitudes and actions towards other groups of people who need our support or are otherwise marginalised, ·· our treatment of each other as members of a community. The following definitions and visions of dementia-friendly communities show how hard it is to communicate an approach that goes beyond slight improvements to care structures and instead applies to society as a whole. ( The definitions were taken from the funding applications and have been anonymised. All the quotes used in this chapter were taken from the written final reports, the recordings from the evaluation, or direct contact. ) The first two definitions put their focus on care structures : ‘ A truly dementia-friendly community does not only offer services but supports people living with dementia through joint efforts by everyone involved in the local infrastructure. This means, on the one hand, being informed about the illness in general and being accepting towards it, and on the other hand, knowing about available services and being able to initiate contact with the providers of these services. This includes shops and their staff, doctors ’ surgeries and pharmacies, janitors and 53

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police, housing associations and landlords / landladies, civil servants, bank staff, etc. ’ ‘ This project aims to network existing structures to provide people living with dementia, their friends and families, and the general public with comprehensive information. After all, being a dementia-friendly community means having a functional network of professionals such as physicians, therapists, social institutions, social workers and others. We hope to become a dementia-friendly town that provides sufficient help for everyone affected, in an easily accessible manner. ’

In contrast, the following example shows a long-term, everyday perspective that concerns society as a whole : ‘ Unsurprisingly, dementia is not a topic that draws huge crowds. However, it has become apparent that motivated people can be mobilised for this cause. I believe that we managed to contribute to an understanding of dementia-friendly communities as a task for all members of our society. It is about how we want to live when old, how we want to be cared and provided for. It has become clear to us in many conversations that a dementia-friendly community is, ultimately, a human-friendly and age-friendly community. This is an issue that concerns us all. This shift in understanding, in people ’s minds as well as their hearts, is a crucial first step on the way towards dementia-friendly communities. ’

To be clear : It is crucial to accept ‘ living diversity ’ as a basic principle and guiding idea rather than simply do lobby work for an illness. The association Werkhaus Krefeld has tried to make this clear in its project Da-Sein ( ‘ Being there ’ ) with its art performances and opportunities for people to meet and engage with one another. Put into more general words : Human beings differ from each other and live together in many diverse ways, be that in regards to ethnicity, age, cultural background, gender, sexual orientation, dis-/ability, religion, world view, or other factors – or in regards to whether or not they live with dementia. The evaluation report confirmed the diversity and broad range of the funded projects, which we had aimed at in conceiving the programme : 54

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‘ It is not possible to evaluate practical projects with diverse actors, rooted in varied regions, conditions and histories using the same standards. How is one to compare projects based on a 15-year-long history of engaging with dementia and work with friends and families to projects that have only just entered this domain as part of the funding programme ? How is one to compare projects in rural areas with closely-knit social structures to ones, for example, in districts of large cities ? Projects also differed in regards to the intensity of contact with those affected and the forms of embeddedness into local politics, e. g. interactions with partners such as clinics or Alzheimer ’s Associations. The discussion groups also differed significantly in relation to the people involved. For example, participant numbers ranged from one to up to 19 participants. ’5

The projects took a range of different forms. The interviews with project members showed that most of the time, they worked or had worked in socially oriented work domains. Most informative events attracted many people, for which interviewees gave partial credit to media coverage. The interviewees also suggested that people ’s fear of getting dementia themselves or having to care for someone else living with dementia may be a contributing factor as to why people seem to be more willing to talk about dementia now than they were five to ten years ago. In many projects, goals had to be reconsidered or shifted over time, for example when it became clear that certain fundamental tasks, such as building networks, would require more time than initially expected. Some imagined this process to be simpler or more encompassing than it turned out to be. In any project, some tasks will usually take more time than expected or planned for. This effect was even stronger for projects whose teams had little or no experience. When we think about how much time and effort has already been invested into dis-/ability advocacy and activism, and how much still needs to be done in this area, it becomes clear that work in the domain of dementia will also be long-term. Just as streets and buildings have increasingly been made more physically accessible in the recent past, we now need to make our environments as well as social lives more accessible, too. And this will take time.6 ‘ Generally speaking, project goals are formulated generously, with later experiences in the projects revealing how much work and how much 55

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effort to persuade others is required – and how little can be forced. This seems to be an experience shared by all projects : Those involved spread information with the aim of effecting shifts in attitudes and behaviours towards dementia, and realise towards the end of the project that all their efforts could ‘ only ’ initiate a first step whose full impact only becomes clear after a longer period of time. To assess the actual effectiveness of efforts made in the projects, it is particularly important to honour these first, small steps as important early stages in an ongoing process aimed towards a lasting shift in specific attitudes. ’7

This realisation does not necessarily match mainstream understandings of success. As many have internalised the idea of everything always having to go ‘ faster, higher, further ’, thinking ( and acting ) outside of quantitative parameters often feels unfamiliar and daunting. ( This also became apparent in applications for the second and third cycle of funding, where some projects tried to combine as many aspects as possible into their work, sometimes based on and compiled from funded projects of the first cycle. Only rarely did projects propose more in-depth work on a single issue. ) Furthermore, funded projects did not only aim at making people outside of and within the community change their attitudes, but often experienced significant changes within their own teams as well, often on the very personal level of individual feeling and experiencing : ‘ Project team members ’ accounts of the changes in their own perceptions and attitudes are particularly impressive. Reflecting on dementia leads to reflecting on ageing more generally, which becomes especially apparent in volunteers ’ reports. They often developed new social contacts as part of their volunteer work and greatly benefitted personally from their involvement. ’8

1.8 The wealth of ideas Benefitting from the discussions, advice, examples, ideas, campaigns and experiences of others and taking them into account when planning your own, local efforts and activities is a useful strategy in the process of creating dementia-friendly communities. Additionally, we want to emphasise once 56

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more that communities that put their resources into meeting the challenge of dementia are working towards a better future for all members of society. As coordinator and project officer for the funding programme People in the community living with dementia, I want to share my glimpses of the wealth of ideas that featured within the framework of the funded projects. As said before, these impressions are to be understood as a ‘ bouquet ’ of possibilities, experiences and examples, both helpful and hindering. I wish to showcase positive ideas and developments, but also consider challenges. These different perspectives are represented in a wide range of ideas for action and examples of activities and opportunities for meeting and engaging each other. They are complemented by views expressed in project reports and in my own personal communication with project members as The snowball effect works ! well as ( usually anonymised ) quotes from Dr Jurk ’s evaluation report. I have grouped these ideas, views and opinions around themes – particularly themes that featured frequently or that seem particularly important on our journey to dementia-friendly communities – and commented on some in more detail. Being responsible for the programme, I am very much aware of just how crucial the various local activities, experiences and evaluations are. Therefore, I wanted to let the projects speak for themselves. I am very happy that we from Aktion Demenz, having tried to inspire others to act, could then learn from the experiences and impressions made on the local level, and that we can now, in turn, pass them on to others – the snowball effect we had aimed for actually works ! The impressions and remarks that follow build on eight years of experiences from project work and almost ten years of work and exchange as part of Aktion Demenz. Generally speaking, I do not provide individual project Improving life with dementia begins in our heads. contact details or websites. You can find this information online ( in German ) at www.demenzfreundliche-kommunen.de, where you can also search using filters to find projects based on town, federal state or focus. You can 57

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also find more details about the individual projects there, which would be misplaced in a book that is meant as a collection of examples and a source of inspiration. Additionally, the way projects and their experiences are grouped thematically in this chapter should not be understood as mutually exclusive, and some projects are mentioned in more than one place in this book. Most projects were active for about one to one and a half years, with some exceptions with running times between six months and almost two years, and not all projects used up or even applied for the maximum funding amount of €15,000, with some relying on self-funding and other resources ( especially in regards to staff ). You will find a short list of all projects at the end of this book. 2. Topics and activities 2.1 Art and culture as keys that open doors Art and culture play an important role in the vision of dementia-friendly communities for a variety of reasons. Artistic and cultural approaches seem to be particularly effective in sensitising people who have not given the topic a lot of thought. Additionally, art and culture can encourage people to engage with a perspective on dementia beyond horror and fear. Many find it easier to attend an art exhibition or a public reading than to directly engage with someone who lives with dementia. Art and cultural events reach groups of people who would not necessarily come to a lecture or an activist meeting. At the same time, the creative domains, bringing together a wide range of perspectives, can hopefully give rise to new ideas and unfamiliar experimental approaches different from those that focus on professional care structures. This requires art and cultural expressions by, with and about people living with dementia. This is a crucial element that needs to be emphasised as a response to those who doubt whether art in any ‘ real ’ sense can be achieved by people with dementia at all, or believe that art for and by people with dementia can only ever be a distraction or therapy for them. One project that achieved this rare success was the project Blickwechsel – Perspektiven von Kunst und Demenz ( ‘ Change of perspective  –  Perspectives of art and dementia ’ ), organised by the association Bellevue-Saal in Wiesbaden. This project enables an interplay between art and dementia. 58

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The project leader, himself an artist, had noticed in his work with people living with dementia that dementia can hold unique creative potential. People living with dementia can enrich art : jiggly lines, slowness, insecurity, You have to be able to be unable. peculiar humour, lived experiences – the project leader thought that all these aspects gave this kind of art a special beauty. This led him to ask from which deep human sources these processes drew their strength. The project ’s aim was explicitly not for ( professional or volunteer ) personal assistants to help people with dementia paint in the most correct or most beautiful way, let alone ‘ activate ’9 them. Instead, the challenge was to hold back, to ‘ endure ’ inactivity or empty sheets of paper, to accept and allow moods and creative exploration. With such an approach, dementia can actually give a special quality to art. ‘ Many artists put it this way : I don ’t know what I ’m doing. Obliviousness, cluelessness, lack of intentions. Something is missing, and that makes it present. In art, you can go as far as to say that you have to be able to be unable. One artist who visited our exhibition said of some of the paintings, “ If only I could draw like that ! ” She meant it from the bottom of her heart. The paintings are so powerful because they lack all discipline, all training. All that can fall away in art, which creates incredibly exciting disruptions. ’ 10

This approach – which is, in a sense, oriented towards a more – faces challenges within the realm of the current understanding of care that focuses on less, as exemplified in the following situation : A very motivated, friendly personal assistant sat down with someone with dementia, caringly put her arm around his shoulder, and said loudly and slowly, ‘ That ’s a really nice painting, Mr … ’ – winking at the project leader as she said it. Could it be that our preconceptions make it impossible to see the artworks in an unbiased way ? Is it even possible to open oneself to the paintings based purely on their artistic expression ? The project also presented challenges for artists. They were used to using large canvasses for their exhibitions, which would have been very hard to work with for the project participants. These participants developed their 59

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own artistic processes in care groups, and only had time for their artistic works once a week. All this led not only to interplays between art and dementia. The people involved in the project, from both art and care, also learned from each other. Sometimes, their interactions were unsettling while at the same time enabling them to approach and get to know each other ’s standpoints. ( And we should not forget that there were a range of completely different individuals and professions in each of the domains. ) In the end, they managed to organise an appealing and appreciative exhibition of paintings made by people living with dementia. It was entitled Blitz in Zeitlupe ( ‘ Lightning flash in slow motion ’ ), and was displayed in the Bellevue Hall in Wiesbaden. Here are a few stories that emerged during the course of the project : ‘ But I also talked about the sometimes harsh fates behind the paintings. For example, this one woman always got picked up by her husband. She usually drew very bright pictures, and then also this one here, where she hesitated a moment, then took the brush and wrote the name of her husband. That was it. In a large format. This invocation of her husband ’s name really touched me. The painting is also part of the exhibition. It shows how much emotion there is in people, and that hurts as well, because it ’s very rough, very clumsy. Someone who can ’t speak anymore and is filled with love. How a married couple somehow manages. He was always on crutches as well when he picked her up. There are paintings that show how lonely these people are, but loneliness isn ’t a privilege only of those living with dementia. You find it in all kinds of art. ’ ‘ There is this man who lives with Parkinson ’s disease, and his wife attended the exhibition ’s opening event. She thanked us for giving her husband the opportunity to paint. Their doctor had told them that her husband wouldn ’t be able to get out of his wheelchair anymore. But there is this photo that shows him standing up in rage while painting. So the doctor had to believe it – What ? He can do it, after all ! This photo is a symbol for this strength that does exist. The strength of despair, which goes far beyond the normalcy that we usually take for granted. ’

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‘ I often see it happening that people are really tense while painting. They can barely keep themselves on their chairs, and they say they can ’t do it anymore. So I tell them to relax for a bit, but the moment I turn around, they ’re already back at painting. There ’s something that just wants to get out. Isn ’t that part of life, this urge to be in a dialogue, in exchange, in contact – not isolated – as long as you ’re alive ? ’

That art and culture are possible with people living with dementia was also demonstrated in the project Vergißmeinnicht ( ‘ Forget-me-not ’ ) by the Nachbarschaftsheim Schöneberg ( ‘ Neighbourhood Home Schöneberg ’ ) and the Theater der Erfahrungen ( ‘ Theatre of Experiences ’ ) in Berlin. In these projects, six people with dementia and five actors jointly developed the play Ein Schiff wird kommen ( ‘ A ship will come ’ ). They also performed it several times for large audiences. I am certain that one reason why the project was so successful was that individual experiences and abilities were taken into account when planning the content. ( The project Die Frau, die ihren Sitzplatz vergaß ( ‘ The woman who forgot her seat ’ ) in Wittenberg is another example of how useful it can be to include past experiences in a theatre play. Five women living with dementia actively participated in the project, whose concept was mostly based on remembering past events, good and bad memories, together with the children of the youth theatre club Chamäleon ( ‘ Chamaeleon ’ ). ) Another major factor in the success of the theatre project in Berlin was the efforts and hard work of many volunteers, as well as the actors ’ willingness to be spontaneous and let themselves be drawn into the moment. This latter experience is one of the characteristics of dementia as well. It both enables and forces people to live in the moment, something that has been forgotten in our current society. This can often be a very enriching experience on a personal level. ( For example in the sense of fully committing to something, taking your time and not worrying about whether what you did the day before was appropriate, what you will cook later or how you could – or should – optimise your life plan or CV. ) The rehearsals and shows were recorded and reflect the happiness of all involved. In regards to inclusion and the prevalent ‘ special needs ’ perspective on people with dementia, I would like to stress that the actors without dementia emphasised that the play was first and foremost about people with 61

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no stage experience. Would we not have expected them to emphasise the fact that some of the people involved were living with dementia ? However, that was not their focus at all. The play appreciated the women ’s former lives, but also their current situation, as well as what is still possible for them, in various ways, forms and shapes. I had the opportunity to attend one performance myself, and could observe the audience ’s reactions. There were many aha ! moments : This is still possible, despite dementia ? Such a fit body at this age ? Did something actually happen just now ? Who of these people is actually ‘ affected ’ and who is not ? Indeed, people from the audience often commented on the fact that the play did not focus on this question, and that it often was not clear at all who The images in our minds are dark and scary, but the encounter was surprisingly light and easy. was living with dementia and who was not. Still, this is a fine line to walk. I got reminded of this while I was sitting in the audience, as a woman on stage, apparently encouraged by the joy from the play, wanted to continue dancing during the final scene. An actor tried to get her back in line by dancing with her, gently at first, but increasingly firmly until they did their final bows. There was laughter from the audience, which fortunately had happened quite often during the play, but felt different in the context of this scene. This moment reminded me of critical voices that talk about how people with dementia, rather than performing for, may be paraded in front of others. Nevertheless, this way of dealing with the situation would have been charming if it had taken place in everyday life. What is right, what is wrong ? Yet another area where these categories do not really help and cannot be applied unambiguously. Even sceptics should realise that performances such as the one in Berlin can give rise to new ideas and new approaches.11 They show how what applies to one person does not necessarily apply to others as well. People living with dementia enjoying new experiences ( in moderation ) is not a single occurrence within these projects, and this kind of joy is also present in all sorts of cultural experiences for people living with dementia. This can, for example, happen in the microcosm of everyday life, such as in a cultural project in Cologne where a resident of a home for the elderly who had always lacked any connection to classical music 62

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discovered it as a new passion in the course of piano rehearsals in the home, and began to listen to the rehearsals regularly. ( An example from another domain, but relevant here : In one institution, a nun living with dementia was always brought to Mass, as it was assumed that she would want that, based on her biography. It took quite some time and understanding to realise and acknowledge that issues arose because she actually preferred working or sitting in the garden to participating in Mass. ) Encounters with and in the context of art and culture can also be approached in a more structured way. In Kiel, the Diakonisches Werk Altholstein, a Protestant charitable organisation, started the project Kulturpaten für Menschen mit Demenz ( ‘ Culture companions for people living with dementia ’ ), which aims at providing continued or new access to cultural events to people living with dementia and their family and friends. In addition to co-operating with a local community centre, one of the project ’s aims was to form a permanent group of volunteer culture companions. After completing a period of training, these volunteers were available for outings to various museums or concerts, for groups as well as individuals. The first time these culture companions met people living with dementia in person went, against all expectations, rather smoothly. ( ‘ The images in our minds are dark and scary, but the encounter was surprisingly light and easy. ’ ) Additionally, during the project, participants formed relationships that endured after the project had ended. The project also showed that cultural events are often understood as a luxury in the conventional understanding of care, which can lead to tensions. For example, there might be tensions between family members and volunteers when someone living with dementia who has stopped talking or even reacting when at home, suddenly starts to hum along or laugh when at an event. Or the tensions between volunteers and professional care workers that arose when the project members, at the beginning of the programme, got into contact with the guests of a day care centre. In some cases, the expectations of culture companions and professional care workers in terms of mutual support and prestige differed greatly. While the project above was centred around volunteers, the next one focused on care services. In Cologne, our funding programme inspired the founding of the dementia+art association. It initiated the project Kulturelle Teilhabe für Menschen mit Demenz ( ‘ Cultural participation for people living 63

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with dementia ’ ) in order to provide people living with dementia opportunities for improving their quality of life. It is built on the assumption that among ‘ people who will live with dementia ’, many are used to being able to access cultural events. To keep that access, the project seeks to inform care workers and the general public about the communicative environments and resources of people living with dementia. The project ’s aim is to better connect cultural and care institutions ( whether in-patient or out-patient institutions, or self-help groups ) in order to better co-ordinate supply and demand. Thanks to a range of networking meetings with the Cologne Museumsdienst ( ‘ Museum Service ’ ), the Kölner Philharmonie ( ‘ Cologne Philharmonics ’ ) and the WDR-Sinfonieorchester ( ‘ the orchestra of the public broadcaster WDR  ’), these cultural institutions were made accessible to people living with dementia, leading to a wealth of events and courses that drew great attention from the general public.12 ‘ My mother is living with Alzheimer ’s, and you are completely right ! The most important thing is having pleasant, shared, culturally valuable moments together. Even if some attendees will have forgotten them by nightfall. The positive effect of all the happiness does linger. ’ ( from a letter from a family member about the museum tours ) ‘ It was almost like a normal concert for us. But of course it also feels good, contributing to a special event for these people and their friends and families. We were pleasantly surprised that they were so concentrated and listened so attentively. ’ ( a member of the WDR-Sinfonieorchester )

Culture about / through dementia  –  culture and dementia can also be brought together in other domains, which may be easier to access and not as expensive. The project in Westoverledingen started from the conviction that public libraries are meeting spaces that can support people in different living situations with their diverse range of media. Their importance as orIt also clearly changed something in people. ganisers of cultural events, meeting spaces, facilitators of education, and in helping children learn how to read is still strongly anchored in their sur64

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rounding communities and grants them a central role, especially in rural areas, despite recent shifts in this regard. The former head of the local library initiated the project Schätze entdecken ( ‘ Discovering treasures ’ ) in reaction to increasing demand for materials from the library that could be of help to local volunteer and professional care workers as well as friends and families. The project aimed to avoid presenting the available materials and opportunities for exchanging experiences as a deficit-oriented answer to an illness. Instead, it wanted to bring to light the ‘ treasures ’ that lie inside every human being, and to form connections with them via suitable means ( e. g. music, colours, images, memories ). They further combined this approach with public relations work that aimed at shifting the social climate. The project team in Villingen Schwellingen thought that one facet of their original plan that focused on culture was particularly successful : the theatre play Dementus und Dementine, written by people living with dementia about everyday situations. ‘ Each of our performances – 27 by now – drew more than 70 people : friends and families, other people interested in the topic. They belonged to diverse age groups. And, we also reached institutions – an audience of 100 at the Klinikum. The play had a tremendous effect. Experiencing it all, seeing it – this made a bigger difference than a lecture. It touches people emotionally. The woman with dementia that claims to be pregnant, and how to deal with it. How does a young personal assistant do that ? The play offers suggestions. And the scene at the checkout was good too : How do you feel if you take too long, and behind you, there ’s a queue of young people making jokes ? We also did walk acts. That was done in pairs : Someone portrayed as a man with dementia walking across the weekly market, and someone accompanying him that tried to help people understand. And at one stall, they pretended to call the police, saying, “ That guy ’s clearly drunk. ” And we explained, “ No, he ’s not an alcoholic, he might simply have dementia. ” ’

The initiators of the project Besser leben mit Demenz ( ‘ A better life with dementia ’ ), from the Zentrum für Begegnung, Beratung und Bildung ( ‘ Centre for Contact, Counselling and Education ’ ) in Pirna, wanted to address a dark 65

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chapter of German history and the town itself, and show why the public conversation about dementia often hits a wall. In 1940 / 1941, about 14,000 people with mental illnesses and disabilities were murdered in the town ’s formerly famous mental institution as part of the Aktion T4, the first phase of Nazi euthanasia. In 1991, the memorial group Pirna-Sonnenstein was founded. It actively addresses the Nazi period and has organised a large number of events. Unfortunately, the project members of Besser leben mit Demenz said that they were not able to include the memorial group in their own project because of time constraints and overlapping initiatives. We at Aktion Demenz hope that this will be possible in the future – in Pirna and other places as well. After all, engaging with the history and development of how people with mental disabilities were treated is crucial for the cultural change that we hope to contribute to. By reflecting on the past, we can question the present and shape the future. Culture and art also provide manifold creative opportunities for a change in perspective. The Oberhessisches Diakoniezentrum Laubach, a Protestant social welfare organisation, also realised this, and organised a week of art and action. Instead of the usual opening speech, a film called Wünsche ( ‘ Wishes ’ ) conveyed different voices from the region. Additionally, the art exhibition of the DiaDem foundation, Kunst trotz( t ) Demenz ( ‘ Art in spite of / resists dementia ’ ), was shown at the town hall. And the project gave the impetus for staging the play Dies alles nur ein Traum ( ‘ All of this just a dream ’ ), a cross-generational multimedia play by the Licher Theater Traumstern that We quickly arrived at a cheerful mood. people with dementia as well as their friends and families contributed to. The play is about a couple ’s love for each other and how it endures in the face of dementia. The first part of this story was staged as a theatre play at the Traumstern cinema, and the later period in the couple ’s life was shown as a film on the cinema ’s big screen. The aged married couple was played by a married couple living in an institution belonging to the Diakonie. According to people involved in the project, ‘ the touching play moved many visitors ( sometimes to tears ), and in the end, the applause lasted forever – the play really made a tangible difference in people. ’ By now, the ‘ days of art and action ’ have been carried out several times without additional funding, and the 66

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project also led to the very appealing exhibition Diese Hände erzählen vom Leben ( ‘ These hands tell of life ’ ). The project in Laubach was one of many that demonstrated that sensitising people does not have to take place via their minds : ‘ Over the course of the project, we found that an indirect approach through art increased people ’s readiness to encounter the topic of dementia. It meant that participants and audiences were reached on an emotional level. This emotional “ touchedness ” moved people and thereby put into

motion many more than a lecture or informative event. ’

In Tarmstedt, the project Dorfplatz – Demenz auf dem Lande ( ‘ Village square – Dementia in the countryside ’ ) initiated a Ball der Begegnungen ( ‘ Ball of encounters ’ ). This event facilitated contact between individuals with and without dementia, and reunited people who had lost contact due to dementia. Some people met old acquaintances again, who told them that they now lived with dementia. As the ball was not explicitly promoted as an event for families affected by dementia, it also drew people who might otherwise not have attended a dementia event. All of them enjoyed themselves, probably at least in part due to the frequent dancing. ‘ All of this became possible because the musicians were very sensitive to the music needs of everyone present. This way, we quickly arrived at a cheerful mood that didn ’t ignore the impairments of the people with dementia. ’

Art was also valued as a medium of mutual understanding, grappling with the topic and of meeting one another in other places. For example, the Arbeiterwohlfahrt ( ‘ Workers ’ Welfare Organisation ’ ) co-operated with the art gallery Kunsthalle Bremen to offer qualification opportunities to carers under the motto of Making Memories, as well as art workshops for carers and people with dementia. The artistic approach was also meant to initiate a public conversation on the topic and to anchor alternative conceptions of society. The aim was to indirectly make people on all levels into ambassadors or, as it were, ‘ lobbyists ’ for the topic of dementia.

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The Forschungs- und Innovationsverband ( ‘ Research and Innovation Group ’ ) of the Evangelische Hochschule Freiburg ( ‘ Protestant University Freiburg ’ ) ­initiated the project Menschen mit Demenz in Freiburg and Region ( ‘ People with dementia in Freiburg and the region ’ ), which co-operated with local partners to bring dementia into the centre of the community in relation to four thematic fields : everyday life, culture, knowledge, and politics. Renowned artists from the region were invited to submit artistic contributions on the topic Demenz geht alle an ( ‘ Dementia concerns us all ’ ) for a calendar. The selected artworks, which approached dementia from unfamiliar ­perspectives, were included in the calendar VERGISS-MAI-NICHT ( ‘ ForgetMay-not ’ ), which was available for sale. This is definitely an idea that could be implemented in a similar way in other places. Similarly, the Kunststücke ( ‘ Feats ’ ) project of the Diakonisches Werk Kassel was able to keep people with dementia and their friends and families in society or help them get back there. Their brochure Kunststücke – Bericht über Kunst und die Begegnung mit Menschen mit Demenz ( ‘ Feats – Report on art and encountering people with dementia ’ ) reads, ‘ Artists from varied domains are greatly interested in approaching the topic of dementia; make use of biographical approaches […], and develop approaches that fit their respective artistic foci; encourage and surprise those who work with people with dementia on an everyday basis, showing them the many things that are “ possible ” through approaching dementia with artistic curiosity and open-mindedness; acquire the liberty in terms of content as well as form that is necessary in their work. This also means that not all of the artists made use of the educational offers, and not all of them listened to the “ good advice ”, saturated with experience, that the dementia experts gave – to the benefit of surprising results ! However, aside from the welcome confusion, artists seem to sometimes evoke fears and feelings of competition amongst staff and institutions of dementia care. The experiences in Kassel have shown ( once again ) that artistic projects can only – or at least more probably – be successful if the involved artists can count on not only administrative support – e. g. in finding participants –, but also staff who have an interest in and curiosity for the artistic endeavour. It became clear that artistic projects work 68

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best if staff have already made artistic, creative experiences, and if they know the artists, for example by participating in a preparatory workshop beforehand. ’

The project Gemeinsam ein Musical erarbeiten ( ‘ Jointly developing a musical ’ ) in the town of Kloster Lehnin broke new ground. It enabled young people to meet people with dementia in a centre for the elderly, and involved these young people in a creative process alongside artists who supported them. The professional artists wrote and composed a musical about Alzheimer ’s based on the teenagers ’ ideas and suggestions, and adjusted it to the target group that staged the musical ( school students aged 9 to 14 ). Some of the roles were played by adults, and the fact that the headmaster was involved as well probably served as extra motivation for some of the youngsters. Many of them had completely new experiences in a range of unknown areas : from being on the stage and performing for a large audience, to using knowledge about dementia that they had acquired in order to convince the audience that the musical was almost identical to real life, to the experience of meeting people with dementia. The local residents became curious as well and were surprised that you could produce a musical on dementia performed mostly by school students. After all, dementia is a rather difficult and sensitive topic that is linked to old age. Using the musical as a medium enabled the project to create interest in the topic amongst a broad audience in the community and beyond. This was achieved partly because the performances were well-attended, and because the students – both those who were directly involved and those who were not – took the topic home to their families, and thereby brought it to additional age groups. Film was a medium that was used in almost all projects, for example in welcoming speeches, trainings, informative events, documentaries, film afternoons, or entire film series. The project Das bewegt mich ! –Ich beweg mich ( ‘ This moves me ! – I move ’ ) in the Schwarzwald-Baar district serves as an example here. First, the project involved a series of film screenings. Some of them dealt with the images that we have of old age, while others were aimed at entertainment and were meant to create social opportunities and contacts for the elderly. One format that was seen as particularly effective was the combination of factual films followed by discussions. It became clear that films are an especially useful medium for transmitting information to elderly audiences, and that having an opportunity for ex69

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change and a deeper engagement with individual concerns at the end was important. The project gave the impetus for a ‘ cinema in the afternoon ’ event in a different town, though aimed at a different target audience and more strongly emphasising exchange. It was seen as particularly important that films enabled life-like insights into the world of people with dementia; that they address people with a variety of intellectual talents and ways of learning; that they provide a symbiosis of education and entertainment; and that a film can serve as an occasion for conversations and discussions. Sometimes, this enabled ‘ proxy discussions ’ that did not foreground personal affectedness. At the same time, many participants found themselves in the various scenes and roles, and connected them to their own experiences. Films can raise awareness, but they can also open one ’s eyes to previously unseen realities of dementia and of life. By now, there are a whole range of films in which dementia, while not the main topic, plays a role, or in which related topics are addressed. Such films can appeal to additional audiences, It is in such moments that the idea of dementia-friendly communities becomes tangible. and enable people to ‘ see differently ’, as a project in Gießen called its film series and informational website ( Anders blicken ! Für Menschen mit und ohne Demenz – ‘ Seeing differently ! For people with and without dementia ’ ). The medium of film is also well-suited to recording the efforts and experiences of a project, and passing those experiences on as well as sharing them with others. For example, the film Märchen merkt man sich ( ‘ Fairy tales are to be remembered ’ ) offers a documentary perspective on the practical implementation of the project Demenz  –  ein Thema für Kinder und Jugendliche ( ‘ Dementia – A topic for children and adolescents ’ ) by the Caritas Gelsenkirchen, a Catholic charity. The film is the result of a co-operation between the Fachstelle Demenz ( ‘ Specialist Department for Dementia ’ ) and a team of film students at the Fachhochschule Dortmund ( ‘ University of Applied Sciences Dortmund ’ ). Similarly, the joint rehearsals and performances by people with and without dementia at the Theater der Erfahrungen in Berlin have been recorded as well. (With subtitles in english.) These recordings can serve to show what is possible – or to raise awareness – in other places without financial and health-related restrictions. 70

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2.2 Church and religion – a community for all ? Religious communities, such those centred around churches, offer some good indicators for seeing and understanding what is important in a dementia-friendly community. Aspects of church life such as pastoral care and prayers are no doubt important, and offering special services for people with dementia can be useful. But it is at least equally important to talk about dementia in Mass, and reflect on our approach to it. Occasional ‘ adapted ’ Masses that everyone can more easily participate in would be needed in order to reduce barriers and inhibitions. It should also be part of a dementia-friendly community that some community members ’ ‘ different ’ behaviour during Mass is met with understanding and acceptance. This can be particularly hard in a dogma-oriented environment such as the church, and we should not downplay the tensions and conflicts that can arise in these situations. But is the true challenge not grappling with these difficulties and trying to sort them out together ? The project leader of Aufgaben und Gaben einer demenzsensiblen Kirchengemeinde ( ‘ Responsibilities and gifts of a dementia-sensitive church community ’ ) in Cologne comments on this in a way that makes the situation comprehensible and relatable. It is in such moments that the idea of dementia-friendly communities becomes tangible : ‘ We had this woman with dementia who lived in a care home and often participated in Mass. She was a heavy smoker and still had cigarettes in the institution, but no lighter or matches. One day, she stood up during Mass, walked up to the altar and used the candle there to light her cigarette. For her, that candle was simply the source of fire she had been longing for. But another woman came close to attacking her with her walking stick because of this blasphemy. The incident was followed by a huge protest that culminated in discussions about excluding her from the Masses altogether. After long and often also heated discussions, we came up with the idea of asking the pick-up service to come a little earlier and have the woman smoke a cigarette under supervision, and only after that take her into the church. And that actually worked ! ’

Such instances of a lack of understanding – let ’s call them dementia-unfriendly events – happen in churches as much as anywhere else, as illustrated 71

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by the following story, told by a volunteer of the project Inklusion durch aktive Beteiligung ( ‘ Inclusion by active participation ’ ) by the Alzheimer Gesellschaft München ( ‘ Alzheimer ’s Association Munich ’ ) : ‘ Encounter during a city tour : October 2013. We had guests from abroad – a group from the Alzheimer ’s Association in Avignon was visiting us. We had planned a tour through Munich. Our guide showed us various nice locations around the Marienplatz, and also led us

into the Theatiner church. We stopped in the back and our guide told us

in a low voice about the church. Suddenly, an elderly man, who had been sorting the song books on the bookshelf, gestured towards one member of our group ( Mr F. ) to take off his hat. When Mr F. didn ’t react, the man took matters into his own hands and tried to take off Mr F. ’s hat himself, to which Mr F. reacted loudly : “ Stop that, I don ’t like that. ” The man shushed Mr F., but Mr F. was still defending himself : “ I don ’t like that. ” An attendant explained to the man with low voice that we were a group with people living with Alzheimer ’s and that Mr F. could not understand why the man cared so much about his hat. The man didn ’t want to listen, but when he heard the words “ Alzheimer ’s ” and “ doesn ’t understand ”, he said, “ Well, leave the church then. ” The group decided to avoid confrontation and enjoy the rest of Munich instead. On our way out, an attendant couldn ’t help but say, “ The Pope tells us that the Church is open to everyone; why don ’t its rank-and-file members live up to that … ” We enjoyed the day anyway. You ’ll find ignorant busybodies in many situations. It ’s helpful to focus on what matters and be happy about those who do listen, who want to understand, and who are tolerant. ’ 13

As this story illustrates, sometimes, it is the small things and obstacles in our minds that make or break participation, which happens more often in everyday life than the seemingly big challenges would suggest.

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Churches should seriously address dementia for a variety of reasons. Demographic changes that have been projected for society at large have already become reality in churches, as their communities ’ average age is about 30 years higher than that of the general population. They are often aware of this fact but elderly people sometimes react with avoidance or fear – maybe because those who feel closer to a potential life with dementia due their age feel more threatened by it than younger people ? This seems to contradict the trend of more and more people who need care staying in their familiar living environments, and by extension in their communities. It also means that communities could and should actively contribute to shaping the joint lives of people with and without dementia, which is indeed being talked about more and more. These discussions often revolve around pastoral support and other support services, but also around ethical and anthropological-theological questions. Based on experiences from the project Menschen mit Demenz gehören dazu ( ‘ People with dementia are part of the community ’ ) by the Protestant Deanery Frankenthal in Bobenheim-Roxheim, which is strongly influenced by the validation approach14, people ’s main fear seems to be that of ‘ no longer being yourself ’. It can mean a lot, then, when everyone involved talks about the moving experience of forming close bonds as a community, and an almost tangible feeling of belonging in joint Masses. Religious communities can help communicate a realistic and, more importantly, diverse image of dementia. They can also be of great help in providing relief to people with dementia and their friends and families. However, churches should not only be concerned with dementia but with ageing in general. Cornelia Coenen-Marx, a senior member of the Protestant Church in Germany, suggests that searches for meaning and a desire for spirituality are closely tied to supporting elderly people, and engaging with human frailty and mortality.15 Religious communities are also given a central position in Klaus Dörner ’s concept of a third social space. Dörner, a researcher specialising in ageing, argues that there is great potential in civic participation by members of religious communities and church involvement in cross-generational networks and homes as well as counselling services, in addition to the domains of social welfare.

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Such religious engagement can happen in an interdenominational way, as shown by projects such as Goldene Stunde ( ‘ Golden hour ’ ) by the Geistliches Zentrum für Menschen mit Demenz und deren Angehörige ( ‘ Spiritual Centre for People with Dementia and Their Friends and Families ’ ) in Berlin-TempelThe great atmosphere was made possible precisely because of the inter-faith interactions between communities of different faiths. hof. This project aimed at explicitly addressing spirituality in everyday care and support for people living with dementia, and addressed volunteers committed to the goal of encountering people living with dementia in a respectful and appreciative way. Contrary to initial expectations, the coming-together of different religions in workshops was surprisingly uncomplicated : ‘ What was surprising was that people were already discussing really essential topics on the first day of the workshop. The variety of religions represented was no issue at all; everyone valued everyone else, and everybody contributed tolerance and curiosity. Our visit to the mosque was really good; the atmosphere was great. That was made possible precisely because of the inter-faith interactions between communities of different faiths. ’

Difficulties on the structural level were more difficult to navigate : ‘ When you want to talk about the various questions of faith and dogma, it gets more difficult once the church theologians join the conversation. The structures that have developed from the top, they ’re hard to change. ’

Let us return briefly to the project in Frankenthal. There, in addition to the various efforts within the community, people also tried to reach others on the outside. For example, they tried to come into contact with migrants from Poland and elsewhere who were doing undeclared care work for people with dementia. That did not work, even though a local intermediary was involved, perhaps because the freedom of movement for workers in the EU did not apply yet, and people were too worried about legal repercussions. ( Such care workers are a target group that are often forgotten even in approaches that 74

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focus exclusively on care structures. They are only an option for particular groups of people, depending on their financial situation and living environment. A closer look into this domain of care, support and service would defiHow do I deal with that ? nitely be valuable. ) On a positive note, however, collaborating on one concrete project helped strengthen the contact between project partners. Religious communities and local authorities plan to work together more closely in the future. The Diakonie Düsseldorf Gemeindedienst of the Evangelische Kirchengemeinden ( the community service of the association of Protestant churches in ­Dusseldorf ) initiated a project entitled Auf dem Weg zu einer demenzfreundlichen Kirchengemeinde ( ‘ Paving the way to a dementia-friendly church community ’ ). It invited the 23 church communities in the association to engage with dementia and critically reflect upon how they could make their services dementia-friendly. To approach this aim, meetings and two workshops were organised to inform and educate important members of the community. The conversations also cautiously touched upon the fears many feel in relation to dementia. According to the initiators in Dusseldorf, dementia has been acknowledged as a key issue for the future but still requires deeper, more sustained theological engagement. For example, one could raise the question of whether God can get dementia. Additionally, they suggest that what is needed in the domains of pastoral and social welfare work is a ‘ new offensive of charity and relationship maintenance by Christian communities ’. Educators, visiting service staff and experts had already engaged with this idea, but this was not equally the case on higher, more theology-conscious ranks of the Church. For pastors, dementia can bring about fears of losing control and incurring public embarrassment, as the following story from another church project makes clear : ‘ I was doing a funeral service, and the mother of the deceased, living with dementia, said during the service, “ By the way, is Jürgen ’s wife here ? ” Then she stood up and looked around. I, as the pastor, said “ I ’m not sure – I don ’t know Jürgen ’s wife ”, and I asked, “ Is there someone here who was married to Jürgen ? ” And she said, “ No, Jürgen always said she was a slut. ” [general laughter] And I can tell you, the community held its breath, and, 75

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to be honest, it ’s not a pleasant experience, standing there in front of everybody in that situation. Everybody ’s staring not only at the woman with dementia but especially at you, waiting to see how you ’re going to react, how we ’re conditioned to behave in a socially acceptable way in these settings. I think this is what many of my colleagues are afraid of : I can ’t control it, and it ’s happening in a public setting. How do I deal with that ? ’

The Alexianer Köln GmbH and the Demenz-Servicezentrum Region Köln und das südliche Rheinland ( ‘ Dementia Service Centre for the Cologne Region and the Southern Rhineland ’ ) in Cologne ran the project Dabei und mittendrin – Gaben und Aufgaben demenzsensibler Kirchengemeinden ( ‘ Part of it and right in the middle – gifts and responsibilities of dementia-sensitive church The normality of being different. communities ’ ). It put particular emphasis on treating and understanding people with dementia as more than just an unavoidable duty of church communities. The project emphasised the normality of being different. Visiting service staff were trained in conducting birthday and everyday visits to people living with dementia, and a handout with suggestions and ideas for these visits was created. The results from this joint process were made available city-wide to all Protestant and Catholic communities in the form of a booklet. The ideas and information in the booklet, which are surely helpful beyond working specifically towards dementia-sensitive church communities, were also presented and discussed at a symposium. The involvement of representatives from Protestant and Catholic communities in the management group from the very beginning was crucial. It was a visible sign that the project was ecumenical and required a shift in attitudes both amongst the community members and in terms of more general positions. Additionally, it made clear that the focus was to be on shared goals and challenges. ‘ We hope that this will help us ensure that “ others benefit with us, and we benefit with them ” – the community benefitting alongside and with people with dementia; dementia experts with church representatives and maybe Catholic functionaries; the grassroots of the communities with 76

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overhead staff; church members on the administrative level with people on the operative level etc. ’

Some feedback suggested that people could imagine providing special services for people with dementia, but were uncomfortable with the public setting of the Sunday Mass ‘ on the community stage ’. The management group considered it important to not judge these experiences but perceive and understand not only the insecurities and worries of those living with dementia but also of many full-time church laity. ‘ What do I do when people suddenly start running around during Mass or shouting Hallelujah or “ I wanna go home ” – what do I do in such a situation ? Well, I join them in their shouting. Why not shout Hallelujah during Mass ? Do I even have to do anything in these situations ? Many were surprised when nothing bad came of it. We have this idea in our minds that dementia is this terrible thing that throws everything into turmoil, but the reality simply isn ’t dramatic at all, to the surprise of many. ’

An important finding of this project was that it became clear that many churches already offer a large number of services for a wide range of social issues ( mourning and hospice groups, mental health services, days of action for people with disabilities, etc. ). This meant that joint processes and paths were hindered by work overload and scarce resources, which are well-known problems in other domains as well. This is why, in addition to spreading knowledge with the help of professionals and experts, the project focused on starting local conversations to emphasise what can be done despite these difficulties : ‘ Many were surprised and confused when we told them that many good ideas can be put into practice with little effort. Yes, there are projects that require time, professional expertise and financial resources. But we think that small steps are often more important than large-scale projects. It ’s not about initiating as many activities and services for people with dementia as possible in a short-lived hurry-scurry. We believe that instead, every single one of us can take small steps, even if they seem completely irrelevant at first glance. ’ 77

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This insight applies to dementia-friendly communities and Aktion Demenz more generally. Like many social issues, dementia is best approached by large parts of the population doing their part on a small scale. This is why the Esslinger Aufruf ( ‘ Esslingen Call to Action ’ ) seeks to reach every single member of our society with the following message : You, too, can make a difference !16 And precisely that is the goal of the project Ich kann was tun ! – Lobby für Menschen mit Demenz ( ‘ I can make a difference ! – Lobby for people with dementia ’ ) by the church community of St. Martinus-Eppendorf in Hamburg. Ten dedicated volunteers sent a total of 8,603 postcards to the members of the 4 Protestant church communities that make up the Alsterbund to invite them to join the project, and also to raise awareness more generally. The project members felt that they broke new ground with this project, which meant a great challenge for the community but was also full of surprises and opportunities. Some reacted to the postcards with anger : Do you think I ’ve got dementia ? Why else would you send me that postcard ? The initial plan of establishing a working group was abandoned over the course of the project as the additional strain of another working group within the community would have hindered the project ’s progress. People reported that volunteer efforts were declining within the church communities, with individuals taking on more and more responsibilities, which meant that personal requests for supporting a project for a set period of time were met with more positive feedback ( e. g. help with sending the postcards, collecting ideas, informal talks with retailers etc. ). All of this should not make us forget that in addition to belonging to different religions, people also differ in their personal interpretations of their beliefs as well as their religious practices and experiences. Again, there is no single, ultimately true recipe for a dementia-friendly church community or the one perfect way of bringing spirituality and dementia together. This is all the more true considering that respective needs can always change. In any case, I hope that the examples in this section made it clear that dementia-friendly communities must mean more than giving everyone their daily or weekly ten-minute dose of spirituality.

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2.3 Children and teenagers – looking to the present and the future Retailers, the police, associations and charities, and church communities are all concerned by dementia, and all have become increasingly visible social actors and multipliers17 in relation to the topic. However, opinions clash on whether dementia is also a topic for more than one single age group. Some think that children and teenagers should not engage with dementia at all, let alone those who are living with it. They claim that the dangers of a lack of understanding, fears and unsettling encounters are too great on both sides, If you think dementia doesn ’t concern you, think again. and that we need to protect our youth. This is why posters about dementia could not be put up in some schools, or were taken down by parent groups. In some cases, the teachers did not see dementia as a relevant topic at all, drawing on ideas such as, ‘ Why should children and teenagers care about this, it really doesn ’t concern them yet ’, or, ‘ They still have a few decades ahead of them before dementia becomes an issue. ’ Some are even critical of any kind of joint activity bringing together kindergarten or school children and people living in a retirement home ( which nowadays almost always means people living with dementia ), such as baking cookies. But why ? The views outlined above ignore the important fact that many children and teenagers are already affected by dementia, perhaps because their grandparents have dementia, or because their parents care for someone with dementia, or because they themselves are involved in some sort of care. In any If I don ’t think about it, it won ’t find me. case, these children and teenagers are going to live and grow old in a society in which they will be more and more strongly influenced by demographic change. It is important that they engage with ways of interacting with other people in an accepting way that allows for participation. They need to grapple with new ways of living together and growing old, with forms of care outside of their own families and with professional activities in this area. If we want to sensitise children to this – in a time where it is no longer guaranteed that children will come into contact with elderly people or people in 79

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need of care –, we need to actively include children and teenagers and foster stable social networks from an early age. This is not about recruiting future care workers, as some projects situated in this sector might make it look. Instead, we need an entirely different approach. If dementia-friendly communities require a shift of social awareness  –  and this is how Aktion Demenz envisions them –, then they are a process, and this process takes time. It requires long-term goals, and it requires that all generations work together towards these goals. Feedback from projects was largely positive in regards to general awareness raising and the contact between children and teenagers and people living with dementia. These experiences link up with the literature on the topic, and they are reflected in many projects ( e. g. Alzpoetry and Alzheimer & You ). In Pirna, the project Besser leben mit Demenz ( ‘ A better life with dementia ’ ) saw 20 teenagers from the local church community design postcard motifs after learning about dementia. The final result was four postcards that employed confusion as a stylistic device. The postcards asked question such as : What is the tape doing in the toaster ? Why does this keyboard have so many space keys ? The answer was presented on the cards ’ backs : If you think dementia doesn ’t concern you, think again. The many space keys on the keyboard represented the need in our society for more offers and services for people with dementia. A red telephone in a shoe prompted people to help others in their neighbourhoods in simple, everyday ways. And the postcard depicted in this book, showing a woman hugging and kissing a cactus, gets to the heart of it all : A strong community does not abandon people with dementia. Both the postcards themselves and the process that led to their creation could also prove valuable in other places. ‘ The young people said, we don ’t want to make fun of people with dementia, which is why we asked the recipients of the cards to send them back to us with a comment. We distributed the postcards as widely as we could, both in the community and through health and care institutions. ’

Of the approximately 1,000 postcards that were distributed, 72 were sent back, with comments such as : We should stop saying ‘ Alzheimer lässt grüßen ’ ( ‘ Alzheimer ’s says hi ’, a phrase that is commonly used in German when people forget something or experience a brief moment of confusion ). 80

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They also suggested that doctor ’s appointments should be available without long waiting times, that there should be telephone counselling hours for friends and families, and that community architecture needs to be adapted to elderly members. It was surprisingly simple to stir up excitement in the young people involved in the project – and much harder to get people to engage with the postcards. ‘ People so often suppress these kinds of thoughts. We made an offer [with the postcards] but nobody was willing to take us up on it. Here, in this café, people should know about the topic because they know us. I thought engaging with it might be possible here, but I couldn ’t get anyone to actually write anything. People think, if I don ’t think about it, it won ’t find me. ’

The play Dementus und Dementine in the Schwarzwald-Baar district in Southern Germany, which tells the story of the everyday life of people living with dementia, also reached young people. For many of them, it was the first time that they were confronted with the topic, and most of them were surprisingly motivated. The play was performed several times for mixed audiences across Germany. ‘ We reached a new generation of people. They saw the play, and decided to do their social internship in a day care centre. Those who have done their first half year there are supposed to leave to make room for new ones, but they say, no, we want to stay, we ’ve developed all these relationships. So they come in on their afternoons off. They ’re important, they ’re valued. All the old people, no matter how severe their dementia is, they all ask about them. ’

The dementia department of the Christian social welfare organisation Caritasverband in Gelsenkirchen supervised and coordinated the project Demenz – ein Thema für Kinder und Jugendliche ( ‘ Dementia – A topic for children and teenagers ’ ). The project focused on demographic change and on motivating children and teenagers, many of them coming from migrant backgrounds, to take part in shaping the future. It reached about 80 children and teenagers in Gelsenkirchen, and, indirectly, their parents and families. Teachers and educators working with the youth services were provided with 81

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informational material and could attend training sessions and workshops to learn about ways of giving children and teenagers access to the topic of dementia. After discussing the situations of people with dementia and their friends and families on a theoretical level, the young people in the project met actual people living with dementia. Some groups started volunteering regularly in institutions for the elderly. The following quotes show that mutual learning processes and respect were key to this approach : ‘ I enjoy caring for the elderly and talking to them, even if they sometimes react very differently from what I ’d have expected. I ’m amazed at what some of the people here can do, for example speak several languages. ’ ‘ Working here feels good, because I bring joy to these people. One woman told me and B., “ You ’re good people. Your heart ’s in the right place. ” ’

Others also referred to the greater goal of this initiative : ‘ We ’ve learned how to interact with old people. That ’s important for our future. ’ It remains to be seen which experiences will have lasting effects. The project in Gelsenkirchen also produced a film that takes the young people involved in the project seriously as they interact with people with dementia. It shows that such contact is indeed possible, and demonstrates how it can be done. Even if people do not do everything by the book of dementia-adequate behaviour while playing Ludo with people with dementia, the atmosphere can still be a good one. The project Geschichten vom Vergessen – Schüler schreiben Texte über Demenz ( ‘ Stories about forgetting – School students write stories about dementia ’ ) by the Protestant social welfare organisation Evangelisches Diakoniehaus in Teltow Lehnin similarly reflects the conviction that shared living and mutual respect need to grow from the bottom up. Understanding and interacting with others needs to be learned. This is why the project created a booklet in which students aged 8 to 14 at the local Julius Bruns school present their views on dementia. Different approaches were used to support the children and teenagers in addressing the topic. They learned about dementia in various lessons, complemented by films, conversations with the families of people with dementia and professionals from elderly care institutions, as well as from personal contact with people living with dementia. The resulting 82

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texts differ in form and content. You can contact the project for a copy of the booklet, which might surely help stimulate your own ideas and thoughts. An excerpt : ‘ When my grandparents were younger, my grandmother took care of everything. But she has been living with dementia for a few years now, so my grandfather now has to take care of everything. Once, when we visited them, he cooked for all of us. My grandmother told me to follow her to the living room, where she showed me an old picture. The picture showed my grandfather from when he was still young. She told me, “ This was my husband, not that old sod in the other room. Still, I like the old sold in the other room a lot, because he ’s very kind. ” ’

What became apparent in all these projects was that the reaction of children and teenagers was strongly influenced what they had been taught before. Some things they repeated word for word, as if they had learned them by rote. That was especially noticeable when talking about what was important or ‘ correct ’. For example : ‘ Care work is a job for the future. ’ ‘ People with dementia need to be in specialised institutions, and it is important ( or even crucial ) to accept help. ’ ‘ Dementia is a very bad disease. ’ And so on. While this is not scientific proof, it does show that what you teach and how you teach it does matter – which, of course, applies to adults as well. It shows that for a true shift of awareness in regards to creating dementia-friendly communities, gathering knowledge alone is not enough.18 Actual encounters and personal experiences were always seen as especially memorable and intense, which is true both for positive and negative events. Some examples : One student enjoys the atmosphere in a dance café for people with and without dementia more than the disco; another one is utterly dismayed by how much people can change. A group of teenagers also experimented with simulating the limits that ageing can bring and explored how they might feel in a few decades ’ time. The following initiative by a student in Radebeul was not part of the project proper, which makes it even more noteworthy : ‘ After having participated in some of the informative events, and because his own grandmother was living with dementia, a student wrote his ethics Facharbeit [an extended essay that school students in Germany often 83

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write as part of their school-leaving exams] on “ Dementia and Ethics ”. The student received support in doing background research on the topic and presented his work publicly at the family centre. His teacher, fellow students, parents and exchange students from France were at the event, as were staff members of the family centre in addition to people who were interested in the topic. ’

The project Für eine Zukunft mit Demenz ( ‘ For a future with dementia ’ ) in Hochheim sees dementia first and foremost as a topic for future generations, which is why it was aimed not only at adults and elderly people but also at children and teenagers. At its core, the project combined education and culture. Different facets of dementia were discussed in a series of seminars, Children can approach the topic of dementia openly and without problems. workshops and informative events, with different approaches and teaching methods based on the respective audience. Events for children and teenagers focused on introducing the topic with possible ( future ) cases of dementia in the participants ’ own families in mind. These events only rarely had their own schedule, but followed the event schedules of the town and church communities etc. Many events, such as the ecumenical Kinderbibeltag ( ‘ Childrens ’ Bible Day ’ ), which prepares children for their Confirmation, and the art exhibition were integrated into the already existing event schedule for the year. This approach could be very helpful for other projects as well, where issues with finding dates and times were a recurring problem. The project In dem Netz ( ‘ In the net ’ ) in Ingolstadt initiated a broad campaign to spread information and raise awareness. It also included a working group focused on people with dementia who were immigrants or lived alone. However, children were among their target audience, too. After some initial hesitation, students got really excited to engage with dementia, especially because some of them had already experienced dementia in their own families. This is what the project lead thought : ‘ Children can approach the topic of dementia openly and without problems. The main difficulty lies in convincing the parents, or, in the case of 84

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organisations, the educators. Art is a good way of bringing people with dementia and children together. As has become evident, both groups have a great deal of creative potential that they can put to use whenever they spend time together. Combined with professional supervision, this

Brief moments of touching and the right tone of voice are really important here. can lead to great results. Teenagers are more reserved than children when it comes to dementia. But they can be motivated too, especially when their peers talk about their own experiences. The poster submissions we received have shown that it is possible for teenagers to engage seriously with dementia if you present the information in a way that is suitable for them. How much time teachers are willing to invest strongly depends on the willingness of each individual teacher to engage with this topic. ’

In Sassnitz, school students were asked why they had decided to participate in a sub-project entitled Das Alter macht Menschen nicht wertloser ( ‘ Ageing does not diminish people ’s worth ’ ). Some said that they wanted to work in care, others referred to their experiences in other projects with co-operating institutions, and some talked about their love for older people, especially in their own families ( e. g. for their grandparents ). The multigenerational house in Wilhelmshaven and the Lutheran Protestant church community in Bant consciously tried to include teenagers in their project, Menschen mit Demenz begegnen ( ‘ Encountering people with dementia ’ ). Fortunately, there was a working group at a local secondary school on people in different living situations, which sought to create opportunities for new social experiences. The project and the working group co-operated and managed to give students aged 13 to 18 access to dementia and opportunities to meet people living with it as part of a planned social internship in an assistance and support group : ‘ We regularly attend the group meetings. I ’m developing personal relationships to many different people, for example Alma*, who loves to sing, or Grete*, who ’s a bit wary by nature. Even Mr Schmidt, who often looks 85

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terribly exhausted, sometimes comes out of his shell and tells one of his stories. I ’ve rarely felt this much joy and gratitude in people when all I do is talk a little to them. […] I have to disagree when some claim that people with dementia behave like children. Dementia, which damages short-term memory in particular, ignores many conventions that arise from the social pressures of our society – but the stories, the experiences, what people have done in their lives, all these are still there. The don ’t disappear, and they shine through in people ’s personalities. ’ [Pauline F.] ‘ There was this one experience in particular that was new for me. I offered cake to a woman. After a while, the cake standing in front of her, I asked her whether she didn ’t want to eat it. She said “ Yes, if only I knew where to put it ! ” After I ’d explained to her that cake goes into your mouth, she only smiled with embarrassment and carefully started eating. ’ [Johanna K.] ‘ It happens that you visit someone with dementia a lot and they never remember you. Maybe they ask, “ What ’s your name ? ”, and “ Do you come here often ? ” Or you leave for 15 minutes, come back and get asked where the nice lady from before has gone – the nice lady being yourself. Still, in my personal experience, despite the lack of remembering, you grow a little closer with each time you see each other. ’ ‘ Sometimes, a conversation that is more than just small talk is too much for the person you are talking to and doesn ’t come to anything. However, if you ’re willing to try out different paths – brief moments of touching and the right tone of voice are really important here –, you ’ll realise that you can indeed reach closeness and understanding. ’ [Friederike S.]19

A campaign by the local group of the Volkssolidarität ( ‘ People ’s Solidarity ’ ) in Lausitz in Brandenburg, called Demenz gemeinsam leben ( ‘ Living dementia together ’ ), aimed to counteract tabooing and stigmatisation in the town of Spremberg. As part of a health week, different events ( exhibitions, film screenings, readings, etc. ) brought the situation of people living with dementia to public attention with the aim of reducing people ’s fears and helping them develop a better understanding of the needs of people living with dementia and their friends and families. 86

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A day of action that was organised as part of the Freiwilligenagentur ’s ( ‘ Volun­ teer Agency ’ ) Bildungspatenschaften direkt ( ‘ Education companions direct ’ ) day serves as a good example of how different facets of this topic can be combined and how one event can lead to another. Based on the slogan Das Telefon im Kühlschrank – wenn Großeltern vergesslich werden ( ‘ The phone in the fridge – when grandparents become forgetful ’ ), readings of children ’s books were held. Various day care centres participated with their primary school children. The town ’s equal opportunities officer agreed to do the reading. Afterwards, children were encouraged to draw or paint pictures based on the book, which were later shown in a small exhibition that was met with public interest. Events do not always have to ‘ have it all ’; small-scale activities can have big effects as well. A great example for this is the reading afternoon Demenz für Kinder im Grundschulalter ( ‘ Dementia for primary-school aged children ’ ) that was part of the project Demenzfreundliche Region Obere Vils-Ehenbach ( ‘ Dementia-friendly region Obere Vils-Ehenbach ’ ) by AOVE GmbH. It was designed to be easily accessible, and planned and organised in co-operation with the Catholic library in Vilseck. The Bielefelder Initiative Demenz seeks to create an action plan for the city of Bielefeld, one of the core components of which is addressing children and teenagers. For example, the project compiled an overview of available teaching materials. Three school classes in different years participated in the so-called Alzpoetry project. Teachers helped students prepare their presentations of poems to elderly people living with dementia. According to the people responsible, both the school students and their audience greatly enjoyed the project. Students reported that they had developed greater understanding and appreciation for people with dementia, and that their fears, which were based on a lack of experience, were mitigated. The people living in the two retirement homes / care centres were talking about the event for days after it had happened. As a particularly positive development, some of the young people visited the elderly people again to hand over a calendar that featured poems and images and that they had made themselves. Additionally, both institutions want to keep in contact with the schools. During the project Jeder Mensch ist wertvoll – wie desorientiert er auch sein mag ! ( ‘ All people are valuable – however disoriented they might be ! ’ ), organised by the town of Cloppenburg, people noticed that school students who had come to visit a day care centre for the elderly as part of the dementia 87

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working group were rather distanced and shy on the first day. Later, they were asked to write about their experiences and feelings. One example : ‘ When I was here the first time, I was a bit afraid of the older people. I didn ’t want to talk much with them. It was a weird feeling, being here. When I entered the building, I immediately noticed the different and unusual smell. ’

However, the experiences and behaviour of the students changed quickly. They were included more and more in everyday activities by the staff, and when the working group concluded half a year later, they reflected on their experiences again : ‘ If attending the working group meetings hadn ’t been mandatory, we wouldn ’t have come back after the first day. But we did, and we learned how to interact with the people living with dementia. We were even allowed to serve the food and drinks. We played games with them, listened to Christmas songs together and made waffles for them. Some of them told funny stories and they were in a great mood. It was fun being there. ’

The students wanted to continue their regular meetings. This led the project lead to the conclusion that teaching teenagers about dementia cannot be done using theory alone. This is one more example that shows that if we want to make teenagers understand and accept people with dementia, it is important to fully support them on this journey, and use meetings and contact with people with dementia to reduce fear and insecurities. It also shows that this is hardly possible with a one-time tour through your local care home, which gives the impression of a trip to the zoo and might even fuel fears, as such a superficial experience might only show the problems and negative sides of life with dementia. Finally, it shows that such interactions and encounters, which might not seem very exciting at first, can have a great positive impact on new ways of living together and treating each other, sometimes even more so than activities fuelled by large-scale activism and academic concepts. And if these efforts are made public, e. g. by a joint St. Martin ’s Day parade that brings together people with and without dementia, these experiences can become visible and relatable for a larger audience. 88

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In general, schools participated in projects because of how strongly they felt about the issues at hand, or how strongly they felt responsible to act ethically. For many projects, involving schools was a minor strand within a larger plan, one that sometimes caused more problems than had initially been expected. One reason for this was the particular context unique to schools. Events had to be postponed or even cancelled because of holidays or pre-fixed curricula. Sometimes, nobody at the school felt responsible for the project, or the school refused to address the topic of dementia at all. Many also reported that they were already overwhelmed with their existing responsibilities and could not take on any more. Schools located in regions or districts that had seen previous activities on age or related subjects tended to react more positively. If schools were not available, projects contacted churches to get into contact with children and teenagers. Additionally, there were more general events such as reading afternoons, or calls for various projects related to dementia. The following extract addresses the question of how one can reach educators and their wards, which can be transferred to many other domains and target groups of working towards dementia-friendly communities : ‘ It turned out to be rather difficult to reach schools and teachers. One event [at the seat of the local authorities] that all schools had been invited to was not very well attended, perhaps also because it took place only shortly before the long holidays. Reaching teachers requires personal contact with them. Sending written invitations to schools, via mail or e-mail, wasn ’t very successful. But whenever we managed to convince teachers of our project through personal contacts, it was carried out with great enthusiasm. ’

In the end, we could once again ask whether simple, small-scale activities that do not require a lot of planning might actually work even better than Reaching teachers requires personal contact with them. larger, centrally planned activities. And we may also ask what effects such activities might have on how we treat each other in general, and people living with dementia in particular. Fortunately, such activities already take place in many locations, and often have positive effects. 89

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A volunteer asked herself these questions when she took her two children for a spontaneous visit to a café that belongs to a retirement home. They had been taken by surprise by sudden rain during a walk, and went to the café for a little snack, completely by chance. The woman noticed that just being there, smiling a bit and having a few quick chats brought happiness, which in turn made her feel good herself and allowed for simple and uncomplicated interactions between different age groups. Again, it does not always have to be something big that then has to magically work and be fully accepted by both sides. The woman is sure to return there, perhaps even on a sunny day. 2.4 Physical activity and sports – you snooze, you lose ? Is it possible to run away, or maybe even ‘dance’ away, from dementia and the social isolation and monotony that so often accompany it, taking literal steps on our way towards a dementia-friendly community ? Of course it is, which is why, despite dementia or rather because of it, physical activity and sports are becoming more and more central to friends and families, volunteers and professionals, as well as various multipliers. A similar process is happening among the general public, although in this case, most look to physical activity and sports as a preventative measure. There are probably a large number of reasons for this growing interest, some of which I will discuss below, without trying to prove or disprove the effects of physical activity on dementia. Physical activity is part of everyday life but also takes the form of organised efforts where it is linked to being part of a social group. There is a social component to this kind of physical activity. This is especially true in the context of sports-related associations of which many elderly people are members. These activities take place both in public and in protected spaces. The current generation of people with dementia are not used to engaging in physical activities as sports rather than part of their everyday or work lives, and do not usually see them as a form of therapy or a means to improve their lives. However, future generations of people who are likely to live with dementia will surely see the topic very differently. Physical activity is increasingly being promoted as a preventative measure against ‘ forgetfulness ’, as a means of slowing down the development of certain cognitive symptoms, and as a 90

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way of reducing the risk of falling. However, many people with dementia do enjoy being active and moving, and sports activities can provide an outlet for that physical drive. Additionally, friends and families suffer from not only psychological but also physical stress due to their role in caring for people with dementia, and can benefit from physical activity as well. Regardless of how effective these measures really are, we need to ask the question of how this development will continue. Should every 90 year old with dementia get their own trained volunteer personal trainer and exercise at the gym in order to fulfil their duty of being a good patient ? Or do we want to focus on individual needs and desires, and give those who want it the opportunity to be active – not only in the form of specialised service offers but also in the context of community groups and already existing networks ? Perhaps it will just be a simple walk to get some fresh air ? People ’s wishes and needs are very diverse. If we take a look at the funded projects in the domain of sports and physical activity, almost all of them also refer to physical activity in everyday situations – for example simply because of the intention that people with dementia should be enabled to move more freely in their communities. Only recently have sports and physical activities become the main focus of projects, however. People have realised that various domains, needs and interests can be combined and connected. Possibilities for joint activities for people with and without dementia from all age groups are similar to what I discussed in regard to the domain of cultural events. This section will take a closer look at one form of physical activity : going for walks. The projects chosen as examples demonstrate that it is not about the one perfect approach but about searching, experimenting and trying out. The project Oberursel bewegt sich ( ‘ Oberursel gets active ’ ) by the Catholic Caritas association in the Hochtaunus district was dedicated to physical activity. It was inspired by the growing number of media reports and increasing amount of research on physical activity as a preventative measure, and the established fact that being part of a community and communicating with others can have positive effects on one ’s health. Different efforts such as a working groups, training sessions and integrative sports activities were implemented as part of the project with the aim of motivating people to get more active. Here too, it became obvious that less can sometimes ( or even often ) be more. After an opening event, Oberursel introduced 3,000-step 91

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walking routes because 3,000 steps are said to yield preventative effects. The walks all started from the same location. Every first and third Wednesday of the month, walks would be organised in co-operation with a committed running coach and staff of the Seniorentreff, a local meeting place for the elderly. Up to 33 people from different age groups participated in these walks, including some in wheelchairs and some with dementia. The events focused on communication and experiencing nature. After the walk, the participants often went to the Seniorentreff for a chat over coffee and cake. Participant numbers rose consistently, and two of Oberursel ’s suburbs created their own walking groups based on this model. ‘ The idea of an interactive 3,000-step walk with changing routes and events turned out to be impossible to put into practice. Realising this idea would have required a vast amount of organisation and planning as well as constantly informing and updating the public. Instead, a smaller project consisting of walks on fixed dates that all start at the same meeting point was established. These walks are featured regularly in the city ’s event calendar. This way, more people can learn about them. What we have learned from the project is that we can reach a growing number of people with offers that are easily accessible and offer space for meeting each other and communicating. Even the bad weather of the last few weeks could not scare the walkers off. Some have formed strong connections with new people; some have revived and refreshed old contacts. ’

The walks were taken as an opportunity for asking specific questions about dementia, even though this aspect was not emphasised in the funding application. Using such an approach would probably prove viable, too, in other places, as it requires comparatively few resources. Similar activities could also be organised in more private, neighbourly environments. Additionally, initiatives, associations or communities could initiate such activities more often, maybe based on the experiences of others and with a good slogan. The project by the Landesratsamt ( regional council ) in the Schwarzwald-Baar district similarly included walks in addition to dancing cafés. In this project, they were implemented in a slightly different way. Participants first went to seminars where they were trained for walking with elderly people with and without dementia, under the slogan Gehirn auf Trab – Gemein­ 92

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sam gehen und bewegt denken ! ( ‘ The brain on its toes – Walking together and thinking in motion ’ ). This led to the creation of seven groups in the area that organised regular walks accompanied by volunteers. They were connected Conversations and community are very important for establishing a group. to local associations, institutions or providers and received support from the public health office, e. g. in advertising the walks and organising lectures. ( This provided the public health office itself with a lot of valuable experience in the area. ) People received instructions for physical exercises during the walk that may help to ‘ keep the brain active ’. These instructions were intended as suggestions only, which had to be stressed to relieve participants of the pressure of trying to do an exercise programme with a group of people with dementia. It was important to communicate that the events were not intended as merely a health care measure, but were meant to bring about personal exchange and to bring together people with light dementia or just elderly people who wanted to do something for their body and mind. It is possible that this was only necessary because of the preceding training ­sessions and the heavily structured approach. Is this another example of how a strong emphasis on communicating knowledge may make it harder to create a ‘ natural ’ environment ?20 At a follow-up event, these points were put together to help make such walks as helpful and enriching as possible : ·· ‘ It is important to address people directly when advertising the event. ·· Other ways of advertising : posting flyers door-to-door, handouts, calling people ( e. g. asking for phone numbers at the housing co-operative ), tenants ’ magazines. ·· Offer one walk per week if possible. ·· Plan the event so that participants can be picked up and / or dropped off by other participants. ·· Integrate simple games and include different surface types in the walk. ·· Pace the walk for slower walkers but keep more active participants motivated with exercises.

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·· Organise walks during winter, to mitigate the fear of the dark season, give security and reduce the risk of winter depression. Start walks earlier when the days begin to get shorter. ·· Conversations and community are very important for establishing a group. ·· At the end of the walk, reflect upon it : How do I feel after the walk ? This helps participants to be aware that they have done something good for themselves. ’ In Oberursel, having coffee and cake after the walk seems to have offered an important space for exchange and reflection, but in a relaxed, indirect way. Perhaps participants preferred talking about something other than dementia for once, especially since this was a chance to relax ? It is reasonable to assume that there is a difference between walks organised / accompanied by volunteers, who will ( probably ) need to be entertained, and simply by local people who come together because they want to walk together. Clearly, both are equally possible, but they will differ in the degree to which they are entwined with everyday life. It is interesting to note that in both variations, while the actual focus was on group activities, exchange and the shared experience, both considered it necessary to stress their activities ’ preventative aspects. Is this also a sign of the present state of our society; that simply taking time for oneself or being together without a clear purpose seems suspicious, so much so that we must formulate some goal of ( self- )improvement to get more attention or justify ourselves ? Walks were also the focus of the project Komm – wir gehen ! Laufender Seniorenbus ( ‘ L et ’s go walking ! Walking bus for the elderly ’ ), organised by the town of Walldorf. Based on the concept of the walking bus – organised walks for children travelling to and from school – the town looked for motivated local volunteers who were then trained to become ‘ bus attendants ’. A working group that consisted of professionals and volunteers planned and marked walking routes, created so-called ‘ bus stops ’, and formed a walking group. These ‘ bus stops ’ were put up in areas where larger proportions of the population were elderly, at care centre locations and near retirement accommodation buildings. Members of the working group even went for a test walk with weights, simulation glasses and suits to better understand different handicaps. There were talks with the local police sta94

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tion about traffic safety and the ‘ bus ’ route. A logo was designed to help recognition, and was also used to mark the ‘ bus stops ’. Two different timetables were created, one for winter and one for summer, to account for the switch between daylight-saving and standard time. Surprisingly, interest was low initially; people only became interested in the project when they were approached personally. In the first few months of publicising the project, there were not enough people to start a project group with volunteers. Only starting the walks themselves proved publicity enough to recruit sustainable numbers. ‘ People started to get curious when they saw this group of elderly people walking through Walldorf with a member of the city administration who is well-known locally for her role as ‘ Asparagus Queen ’21. Some began to join the walks, and so, the number of participants on both routes grew larger and larger every week. ’

Thanks to a co-operation with a bus company, additional services were developed. The bus company provided a bus that picked up participants at the stops, took them back the same way after the walk and was even used for a trip to a local lake. During the weekly walks, walkers could bring up their wishes, worries or ideas. This way, it became a rule that the walking bus would leave its usual route every last Tuesday of the month and go to a surprise location. ( According to local voices, families often still feel the need to ‘ hide ’ dementia when going somewhere locally, even if the general public is talking about it more often and more openly now. ) ‘ Depending on how people felt on a given day, the group consisted of up to six people with dementia, up to eight elderly members with some kind of bodily impairment, children from the local kindergarten with their teacher, a mother with her baby in her pram, a young man with both physical and mental impairments in his wheelchair, and sometimes a dog. Some people showed great interest in this “ colourful caravan ” that could be seen on the main street every week. However, in suburban areas, the group, including the volunteers, was also met with mocking comments. ’

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The project Was vom Gestern übrig bleibt ( ‘ What remains of yesterday ’ ) experimented with biographical city tours. People with dementia ( as well as their friends and families ) were meant to exercise their coordination and perception, and become fully active with all their senses. The physical activity was combined with sharing memories of events and places that had had an impact on people ’s lives. The walks lasted one to two hours. During the tours, people switched between walking and standing, sitting and pointing, and listening and asking questions, all of which was intended to invigorate both body and mind. Friends and families needed some time to warm up to the idea. In the end, 42 people took part in the project, and everybody wished for it to continue. When you think about how you might want to go for walks yourself in old age, and consider all these approaches – in their relation to everyday life and activation, ‘ normality ’ and professionalisation, support and care, and stigmatisation –, it becomes clear that it is important to create new ways of living together that are organic, that are themselves alive. Individuals that are motivated to embark on projects and activities like these need to take these relationships into account more strongly, and we hope that completely new social actors will be similarly inspired to approach the topic of dementia and try something really ‘ crazy ’ or something really simple. In the domain of physical activity, there is not only a great variety of approaches, but also a great variety of possible activities, which leads to more possibilities and opportunities than many would expect when first thinking about this topic in the context of dementia. It is important to stress that people with dementia in an advanced stage also have a right to physical activity if they want to. Currently, many of the newly developed services that are related to physical activity are only targeted at younger people with dementia.22 This is true for the Sport und Talk ( ‘ Sports and talk ’ ) project by the Leben mit Demenz – Alzheimergesellschaft Kreis Minden-Lübbecke association ( ‘ ­Living with Dementia – Alzheimer ’s Association in the Minden-Lübbecke District ’ ). The main aim of the project was to create and develop new ‘ adventure and sports ’ days ( or half days ). These activities were planned and organised in co-operation with local sports associations. For example, a dementia bicycle group was founded in co-operation with the Allgemeiner Deutscher Fahrrad-Club ( ‘ German Bicycle Association ’ ), which organised regular biking events. In co-operation with a sports association for people with disabili97

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ties, a regular sports course and conversation group for people with dementia in an early stage was founded. Contact between people with and without dementia was an especially important goal for this project. There is a short film about the bicycle tours, and canoe tours have now been added to the programme. The Demenz Forum ( ‘ Dementia forum ’ ) in Darmstadt took a different path with its project Nicht( s ) Überstürzen ! ( ‘ Don ’t rush it ! Don ’t trip ! ’ ), which is based on the assumption that physical activity is most enjoyable for people with dementia if they are accompanied and supported by people they know. Additionally, it is based on the conviction that doing things together makes those things more enjoyable for every member of the group. People in the group are active next to and with each other, laugh together, and do not shy away from physical contact. As the organisers had hoped initially, the project was ‘ adopted ’ by a sports association. This meant that the emphasis could fall on the activity itself rather than on the dementia. The Demenz Forum sees itself as a catalyst for action in the area of dementia and is Tell me, who is it that has dementia now ? looking for partners that are interested in taking projects on board. This way, ideas that start out as narrow ‘ targeted programmes ’ can become inclusive activities for everyone, which can be useful in any area. The forum is also active in the Gesunde Stadt Darmstadt ( ‘ Healthy City Darmstadt ’ ) network, where it is trying to raise awareness of the links between dementia and physical activity. One long-term goal is to enable people with ( cognitive ) impairments to participate in groups and activities aimed at a general public. To make the start easier, the activities should at first be done in a safe environment, so that people can feel safe in their groups and get more secure in their movements. The organisers wanted to alleviate the exhaustion of everyday life by protecting and strengthening energy resources and abilities. In the long run, it might also become possible to do this in the outdoor gym in the park, which was an idea nobody liked at first. The reflection showed this : ‘ I think the outdoor gym was too public. Dementia, despite all the public attention it gets, is still a taboo, and families hesitate to take advantage of 98

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activities that take place in such a public space. Starting out in the more secluded space that the park of a retirement home provided also came with the additional advantage of the toilets ’ being closer, which helped people worry less about not reaching the toilet in time. ’

This latter point probably applies to anyone who exercises in parks. And I am certain that there are a great many people without dementia who would not enjoy working out in a public park either. 3. Chosen methods and achieved effects 3.1 Together instead of alone ? There is an urgent need to create a central place for community in the lives of people living with dementia, in the health sector, and in society in general. The health of, lives of and care for people living with dementia is an area focused on specialised, individual services. We should try to come together simply, without worrying about who is meeting whom, instead focusing on why we meet one another in the first place. With some services, one is reminded of the ‘ dementia villages ’ in the Netherlands23 – everything adapted, everything easy ? Perhaps even ‘ optimised ’, but often too artificial. Yes, there are positive aspects to these kinds of efforts, too, but these are more akin to extended 10-minute activations. Where is the life, the everyday, the reality where things occasionally go wrong, the reality where there are challenges ? Where is the chance to evolve, where is spontaneity, an accidental meeting, an exchange, learning from people who are each unique ? Participation can be understood in drastically different ways. These specialised services could have a small place in dementia-friendly communities, but they are far from Aktion Demenz ’ vision. Being dementia-friendly means so much more than that, and it is worrying that people focus so much on this one small part, even though there is not all that much demand for these services. This is why joint activities should not always be labelled with dementia if they are to encourage participation and dementia-friendliness. Finding new ways of shared experiencing and simply being together and interacting with people with and without dementia can be so much more meaningful. 99

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A great example for this is the Café Hand in Hand  –  aktiv mit Demenz ( ‘ Café Hand in Hand – Active with dementia ’ ) by the Alzheimer ’s Association in Marburg, a café for people with dementia, their friends and families, and everyone else in Holzhausen and its surrounding area. A half-timbered building in the city centre was converted into an inclusive social space The trips broke down barriers; they broke the ice. where people can meet and engage with each other. The café is managed by volunteers and allows people with dementia to live their wishes, interests and abilities, and to meet all kinds of people. The awareness raising in the project helped the rural public better understand the needs of people with dementia and their friends and families, and how to interact with them. A group of volunteers established contact between different groups of social actors in the community, and tried to create an environment in which people helped each other and felt responsible for each other. The project also served as a model for similar initiatives in other communities. The project leaders were very surprised by the positive reception that the café received. ‘ We were surprised ourselves that so many came. We were worried that there ’d be maybe ten people, but we ended up with fifty. That was overwhelming. […] We didn ’t want to create a dementia café, but a space where “ normal ” and “ demented ” people could meet each other on equal footing. So that the mayor can stand there and ask, “ Tell me, who is it that has dementia here ? ” People can simply come here and leave again whenever, if and when they feel like it. Although it seems that most want to stay. ’

The café is frequented by people from a larger area. In the beginning, 65 percent of visitors were not from Holzhausen. This number can be interpreted You just have to enter her world. in different ways. Maybe it represents the shame that many still feel in relation to their own or others ’ dementia. Maybe it is a sign for the great demand that exists for such social spaces. 100

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The first interpretation is supported by reports from other towns. It can be challenging to find friends and families of people with dementia who are willing to talk about their lives, experiences and wishes publicly. This is why projects sometimes appeal to people from farther away. This is even more true for people with dementia themselves. However, it is important to keep in mind that people have started down this road, that they do come, and that in spite of challenges and to the surprise of many, the project led to positive experiences, and a pleasant atmosphere. ‘ The healthy guests seemed relieved somehow that it was that easy, after all, sitting there with the people with dementia. But then I saw one person with dementia eating the cake right off the plate of someone healthy. I thought, “ Oh my, what ’s gonna happen now ? ” But it wasn ’t a problem at all. It was simply accepted. ’

Other projects also report that such encounters work well when those without dementia do not have to worry about being in a situation with people with dementia where they might be alone and unable to cope with the situation. ‘ The very fact that people without dementia came with us as well was what made it so special. Maybe they also saw it as some sort of consolation : If I ever have to live with dementia, people will take care of me. The trips broke down barriers; they broke the ice. ’ ‘ One woman always takes her dolls and bears for a stroll, and when I talk to her about them, we have the most pleasant conversations. You just have to enter her world. And I don ’t think anymore, oh my, if only I didn ’t have to go there. Instead, I enjoy it. ’

To return to the project in Holzhausen, I would like to let it speak for itself : ‘ The guests can deal with the people. […] There haven ’t been any dangerous situations so far, or conflicts. People know what to expect and that makes them open up. Coming here is a little bit of an adventure. There isn ’t anything wrong with her, why ’s she here ? We have some people who 101

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find it hard to sit still, they are constantly moving around, and they can do that here. The interactions between healthy and sick people work so well here because the café setting provides a lot of distractions. Friends and families often talk about how their neighbours, friends, colleagues have pulled back. Here, this unintended rejection dissolves because of the time spent together every week. Relationships are made smoother and more fluid again. Some of the people who come here are perfectly healthy, they simple come because it ’s so nice here. ’

While it can of course be difficult to implement projects in such an open way, they can lead to completely different encounters and outcomes than most ‘ closed ’ cafés for people with Alzheimer ’s. Some relationships between people with and people without dementia formed in the café continue to flourish outside of that space. One of the people with dementia who likes to be physically active founded a small hiking group. Another told interesting stories about his time as an assemblyman, which inspired others to start a story-telling café. Not only were people with dementia enabled to participate, contribute creatively and form new relationships, but a wide range of different people realised that it is possible to do things together. Nobody says that it is always easy, but what relationship or community is ? This realisation is a good first step on the way to a shift in consciousness, and turns every visitor of the café into a multiplier for a new attitude. When people immerse themselves in this kind of encounter, they usually find that it works better than expected. This counters the widespread idea that when it comes to dementia, almost all forms of contact or experience should be planned in advance. At events, people sometimes ask what they should do when they do not know the biographical background of someone with dementia. People probably ask questions such as these because the tendency towards professionalisation increases people ’s insecurities. When such questions arose, answers usually referred to topics such as mutual respect, treating each other fairly, and trying to enter the world of the person with dementia. That is all quite right, but maybe we also can ask the opposite question : How can we even encounter others, strangers in a world that is becoming more and more differentiated ? People who might be decades older or younger than oneself, come from a different country or live a different culture ? Meeting, respecting and understanding each other is not always 102

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easy in these situations either. But it is possible, and it is usually attempted – successfully – without professional support, instead trusting the moment and one ’s own understanding and empathy. It can be very liberating to see that people ’s fears surrounding dementia do not have to prevent exchange and interaction. One could argue that these meetings do not lead to much When people immerse themselves in this kind of encounter, they usually find that it works better than expected. without some form of mediation, but all the little things that make up everyday life are possible, and they are all the more important. We can all benefit from engaging with our fear of what is ‘ different ’, from mitigating the forms of exclusion the fear creates, and from realising that the feelings of security that others seem to have are not always really there. After all, according to French philosopher Emmanuel Lévinas, ‘ encountering a human being means being kept awake by an enigma ’24. In this view, everyone we meet is an opportunity for gaining new understanding. This idea is represented in a thought-provoking way in the title of a project initiated by the Grundtvig House in Sassnitz : Wir sind die anderen – Demenz als Chance im Netzwerk einer Hafenstadt ( ‘ We are the others – Dementia as an opportunity in the network of a harbour city ’ ). Some were offended by the title because they thought that the ‘ we ’ in the title referred to people with dementia, when the intention behind the title was to remind us that we all form a community of ‘ others ’. We all need to learn to see otherness and being different as a chance for growth and development. Over the course of the project Einfach dazugehören ( ‘ Simply belonging ’ ) by the association Nachbarschaftliche Unterstützung und Zeitvorsorge ( ‘ Neighbourly support and provision for the future ’ ) in Pfronten in Bavaria, people realised that ‘ mixed ’ events can be harder and more complicated to organise and realise, especially when it comes to acquiring outside support, but that these efforts often lead to more promising outcomes. The project Hoigarte im Saltenanne, which is discussed in more detail in the final part of this book, was planned to be inclusive from the very beginning. There, people with dementia can actually simply belong, without having to prove their worth. Every Tuesday, two musicians play and encourage people to join them and sing. This creates 103

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‘ such miracles, for example when a woman with dementia who has not spoken a word in one and a half years and does not recognise her family anymore starts to sway to the music, in rhythm, and even to sing along. At the end, she knows the lyrics of a song by heart. ’

In accordance with the principle of Nützlich sein – gebraucht werden ( ‘ Being useful – being needed ’ ), elderly people are involved as well. For example, a 92-year-old woman presented the poem that she had written for her neighbour ’s 90th birthday. One musician wrote and composed a song that people can listen to on the project ’s website. The events are organised and accompanied by active members and take place every Tuesday afternoon in a cosy farmhouse parlour. The following keywords – presented in a more appealing way, of course – are used in presenting and advertising the event without hiding anything while emphasising its open character : ‘ Being useful – being needed – belonging – getting help. What is this about ? Contacts, community, entertainment against isolation, distraction against boredom, games, relief for friends and families, taking a short break, dementia in its early / advanced stages, chatting, music, stories, “ what can I do ? ”, “ what can I still do ? ”, activation, being less alone when with others, meeting people, “ do you remember … ? ”, coffee and cake, “ what ’s required ? ”, cosy atmosphere, singing songs, “ what was that like back then … ? ” ’

Interestingly, and running counter to current developments in the area of professional care, this project demonstrated that dementia should not be the only label used for projects. Instead, projects should foreground being together, community, social encounters, integration and acceptance of those who get excluded all too easily. Sometimes, the reasons for not mentioning dementia explicitly are argued for by saying that avoiding the topic of dementia helps convince people to come to the events and not avoid them out of anxiety or fear of stigmatisation. ‘ Not mentioning dementia in the title was a conscious decision. If we had included that word, even fewer people would have come. Dementia is still seen as a stain that nobody wants to have on their family. The project

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worked as well as it did because we didn ’t label it as being about dementia. ’

Most of the arguments in favour of not emphasising dementia instead highlighted the role of other aspects of the project such as community or our humanity, or argued that too great a focus on dementia risks neglecting other topics : ‘ We had put Aktion Demenz on it, and many people said, drop the word

Demenz. […] Dementia shouldn ’t always be centre-stage. People are getting tired of it. We want to focus on community and being together, and accepting dementia is one aspect of that. ’ ‘ We don ’t want to talk about dementia, we talk about positive thoughts. We want to focus on the human side. Some people said, well, how are we supposed to know that it ’s about dementia, then ? ’ ‘ Home care says, “ All anybody ’s talking about is dementia. What about all the others ? ” ’ ‘ There are more and more specialised, niche services for people with dementia that ultimately lead to exclusion. This project aimed to be different. It didn ’t seek to relieve people with dementia of all their burdens. Instead, it wanted to accompany them, and do something together that brings joy to everyone. ’ ‘ Every person is important in our circle. Not just dementia, but a human-friendly community. ’ ‘ People who are affected are coming to us now. Elderly people who forget things are just some of them. We don ’t have a dedicated group for dementia or anything like that. People with dementia simply need to be addressed a bit differently, because they forget about it otherwise. When we have a play activity in the afternoon, we know we need to call this one woman again before to remind her. They also participate in chatting over coffee, and everyone accepts it. If someone says, well, this one is a bit 105

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weird, then yes, well, that is true. It ’s not like in the dementia group at the

Landessozialamt [regional social welfare office], where everybody has to sign that they have dementia. We don ’t want that. They ’re all people. This one can ’t fly, and that one sometimes forgets what time it is. ’

The project Dabei und mittendrin ( ‘ Part of it and right in the middle ’ ) in Cologne reports on fascinating discussions on whether it is necessary or right to advertise Masses as Masses for people with and without dementia. Doing so might simply be a form of exotisation and exclusion; the Masses could also simply be called Masses for everyone. However, the project leaders felt that the explicit emphasis on dementia was important, especially in the beginning : ‘ With this emphasis, we could let those concerned know that we are addressing them : We see you, we value you, you are explicitly invited ! To take one of the many pieces of feedback we received as an example : After the first Mass, two women were talking at the exit, whispering, wondering who of the people who had attended the Mass had dementia. Both seemed visibly surprised by the fact that most people there had seemed perfectly normal and that nothing bad had happened, despite some wheelchairs and walking frames. Actually, not much had been different – in fact, Mass had been even better than usual because of the well-known songs, the short lyrics, the special musical accompaniment, and a small gift for everyone. This is a change of culture in a community, when people can be together that easily, even if there are some alleged interruptions such as a little shouting or someone going to the toilet during Mass, and when individuals are seen first as members of the community, not as carriers of symptoms of some disease. ’

This is why Aktion Demenz uses the term ‘ dementia-friendly ’ rather than ‘ human-friendly ’ communities. Dementia is still stigmatised and suppressed by many, and people with dementia are at a great risk of being excluded from these communities. However, this does not mean that each and every pro106

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ject or event needs to label itself with the word dementia. Simply bringing together people with and without dementia in other ways does help, and is actually the long-term goal of all these efforts. The project Demenzfreundliches Quartier ( ‘ Dementia-friendly district ’ ) in Frankfurt-Heddernheim also focused on the message that dementia concerns us all and that we need to find ways of growing old together. These aspects can be transported especially well by living the idea of ‘ neighbourliness ’, which is also where they can often already be found. One working group had prepared, among other things, a questionnaire on neighbourliness, which they distributed in their district. They advertised the project in talks and at events. Pins with a specially designed logo on them ( Wir im Quartier – Demenzfreundliche Nachbarschaft, ‘ We in the district – Dementia-friendly neighbourhood ’ ) were used to promote the idea, help identify members of the project in public and initiate discussions. There was positive feedback : Some individuals who had been avoiding the topic of dementia could now, via the project, approach it more openly and recognise their own personal responsibilities. One participant reported initiating contact with a neighbour to whom she had not talked before and whose mother was living with dementia. By talking to people on the street about support within the neighbourhood, she also managed to encourage locals to consider each other more consciously. This is a great example for what is possible for each individual on a small scale, or, to put it differently, in a local, personal context. If more people were to dare doing something like that, we would already be a large step along on our way to dementia-friendly communities. Perhaps we could even do without a large part of the specialised services in the psychosocial sector. Over the course of the project, people kept mentioning that a dementia-friendly district was only possible if it was based on an ethos of neighbourliness. From this perspective, many participants saw a general use of the project for everyone : Working towards a dementia-friendly district meant working towards a human-friendly, age-sensitive district. And that is a core tenet of the concept of dementia-friendly communities. The results of the project Dorfplatz – Demenz auf dem Lande ( ‘ Village square – Dementia in the countryside ’ ) in Tarmstedt show that projects that are issued ‘ top-down ’ or from ‘ outside ’ are difficult to implement successfully, especially when they concern dementia and neighbourliness. However, a closer look at what is meant by neighbourliness, and whether it actually in107

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cludes everyone, may be necessary. The people involved in this project realised that a project such as theirs, which was focused on neighbourly support, can work better if initiated from a local context and a concrete situation. The way the project was started from ‘ outside ’ the local context made it too abstract even for people who were generally interested in participating. It created expectations and images that were too overwhelming and led to defensive reactions. In contrast, the parts of the project that aimed at communicating information, giving strength and encouraging exchange raised the willingness to talk about dementia. The foundations were thus laid for a form of neighbourhood assistance that is available when needed. Many people believed that neighbourly help and mutual support was already well-developed in the countryside. The initiators of the project did not want to simply deny this. However, they suspected that those who have lived in a certain place for a long time and who are very well integrated into local structures – the very people the project was aimed at – might overlook anyone who had only recently moved to a village. This was especially true for people living in the fringes of these villages. These people could rarely, if at all, benefit from existing support structures between neighbours and were often forgotten by those who had lived there all their lives. At this point, we need to ask again : Is this also true the other way round ? Do people living in the fringes care about neighbourliness ? Do they see being connected more closely to the village community as something worth working towards, or do they think it is unnecessary ? Of course, singular answers will not hold true universally, but asking these questions can make us more aware that aspects such as emphasising individual freedom and independence or developing community structures early in one ’s life is relevant for old age and the life with dementia that might come with it. This quote from the project in Pfronten illustrates the potentials of rural environments : ‘ I ’m new here. I come from a city with a population of 90,000, where people usually don ’t know each other. But here, everyone cares about everyone else. Everyone is willing to help. ’

The association Generationentreff Enger ( ‘ Cross-generational meeting space Enger ’ ) put neighbourly solidarity into the title of their project. Called Wir sind Nachbarn ( ‘ We are neighbours ’ ), the project included and led to many 108

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public events, activities in the pedestrian area, singing afternoons, a new painting group, trips, a documentary, a round table with representatives of professional services, and a significantly higher number of inquiries to the local Alzheimer ’s information centre. According to the evaluation report, the project was made up of volunteers who knew each other in person and who wanted to do something ‘ outside of the system ’. They wanted to make sure, for example, that people could stay – and live – in their homes until the very end. The Generationentreff has become a lively social space with 91 members. 30 people worked on the project, and managed to motivate 200 more. More important than these numbers, though, is the fact that people there are working as volunteers with a lot of energy. They stir things up, emphasise being together and meeting and encountering each other, foreground different perspectives, and enable people to participate, be it at the cultural breakThat reverses the relationship between those who care and those who are being cared for. fast or at the blues brunch, or in the implementation of the project itself. All of this happens in the spirit of the idea that the more people are involved, the more can happen. The project counts on volunteers ’ efforts and tries to rely on professionals as little as possible. The project team is convinced not only that the institutions at which the project was directed have opened up, but that the locals have too, approaching one another more openly. This aspect of support among neighbours also featured prominently in the title of the project Nicht ohne meine Nachbarn – Menschen mit Demenz in unserer Mitte ( ‘ Not without my neighbours – People with dementia in our midst ’ ) by the Alzheimer ’s Association in Radebeul in the Meißner Land. It was approached differently in this context, however. People with dementia, the people who cared for them, and their neighbours were contacted and asked to talk about the history of the neighbourhood, about changes and experiences as well as the relationships between members of these different groups. The project aimed to present different lives in their diversity. The resulting ten stories, which are as different as they are fascinating, were published in a booklet, and excerpts from them were shown on screens in the local public transport system. One of these stories is Erinnern auf kleiner 109

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Flamme ( ‘ Remembering on low heat ’ ), which is about a small restaurant that provides a cooking day for people with dementia. ‘ For once, they are not being catered to but cook a delicious meal for themselves and their friends and families. That reverses the relationship between those who care and those who are being cared for. ’

Another contribution tells the story of a woman who encounters an old lady wearing an apron dress over her nightgown who seems to have lost her way. Based on the strange but correct descriptions the old lady gives, the woman drives her home. However, when they arrive there, she learns that the house used to be where the old lady lived, but it is no longer her home. If you are interested in the booklet, you can contact the project for more information. They also organise neighbourhood parties to reduce anxiety around contact with people with dementia and encourage openness and neighbourly help. 3.2 Symbolic action and raising public awareness As said before, raising awareness among wider groups of social actors and society in general requires more than conveying knowledge. What is needed instead is a change of perspective, a call to action that wakes people up so that they take on dementia as a social and personal challenge but also learn to see it as an opportunity. This can be achieved with a range of activities, often relying on symbols and images or referring to shared experiences. This section presents some of these activities, and will hopefully inspire reflections and ideas, even if the ideas presented here cannot simply be copied to any context. The Gemeinnützige Gesellschaft für Altenhilfe ( ‘ Charitable association for elderly welfare ’ ) in Niederolm asked people to write on cards that looked like bricks what they would wish for themselves should they ever get dementia, for example in terms of care structures, or what relatives, friends and neighbours can do. This was intended to help ‘ build ’ a dementia-friendly town ( ‘ Bau ’ einer Demenz-freundlichen Verbandgemeinde ). The cards were collected and used to build a sculpture in the form of a house in the local administration, as a symbolic representation of having laid the first stone( s ) 110

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for a dementia-friendly community. People ’s answers to the question were presented to the public at an evening event, with a lecture that sought to motivate members to take part in a working group. The project In dem Netz ( ‘ In the net ’ ) by the city of Ingolstadt shows that activities that invite people to join in do not always go as planned. The project partners built a large stand in the pedestrian area for World Alzheimer ’s Day ( 21 September ), which they planned to use to offer brief consultations and informational material. People with dementia and their friends and families were cooking jam, and invited others to join them. Passers-by were also invited to taste the ‘ results ’. It became clear that children were much more easily motivated to help in cooking the jam than adults, but that when it came to tasting, people of all age groups were eager to participate. Similar experiences occurred elsewhere : Events and activities that provided snacks and beverages were usually met with a more positive reception. This is why some cannot imagine events that target a mixed but generally older audience without coffee and cake, and why even cinemas for the elderly add these ‘ ingredients ’ to their film screenings. The project Integration und Begleitung von Menschen mit Demenz ( ‘ Integration and support for people with dementia ’ ) in Erfurt was able to benefit from being tied to a well-known event, the Erfurter Federlesen ( ‘ Erfurt quill reading ’ ), a writing competition organised every year by the city ’s seniors ’ advisory board. As part of the project, dementia in the community was chosen as one of the main topics for the competition : In Erinnerung behalten – Blaue und graue Tage ( ‘ Remembering – Blue-sky days and grey days ’ ). The call received 130 submissions, which the project members, working in close co-operation with the jury, sorted by topic, evaluated, and finally presented to the public in the fully-booked local ceremonial hall. Building upon existing ideas or working together with already established events is a great way to get things going for a variety of reasons. You can rely on already existing structures and distributors, and build upon them. Such events often have longer-term planning and a pre-existing receptive audience. It is possible to present dementia as a topic to additional social actors without having to convince them of its importance first. The approach also has advantages in terms of time, space and staff, which translates into a financial advantage. Additionally, the partner events are given the opportunity to consider dementia in their activities and benefit from in111

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sights and knowledge, for example regarding accessibility and formats, as well as extended audiences from among those affected directly or indirectly. This makes it possible for project members and their partners in other events and organisations to learn from and support one another. Those who plan to organise events should consider all possible audiences of a dementia-friendly community to find out what will work in their specific local context. Children and teenagers are a particularly promising target group because they can act as a gateway to their parents and grandparents, teachers, tutors, etc., which means that it is easier to involve more people than can be reached if projects are targeted at adults only. Additionally, children and teenagers appreciate creative, innovative approaches. Just as in the old adage that opposites attract, children and teenagers often are an excellent target group for public awareness raising regarding dementia, and multigenerational ideas and activities can inspire people of all ages. This approach was taken by the city and region of Bamberg when they created a dementia initiative in co-operation with the Alzheimer Gesellschaft Bamberg ( ‘ Alzheimer ’s Association Bamberg ’ ) and started a 6-step plan for disseminating information and raising awareness. One part was the youth … because dementia concerns all of us ! … photography competition Blitzlicht ins Land des Vergessens ( ‘ Flash light into the land of forgetting ’ ), for which school classes and interested youth groups, supported by professional instructors, took photos on the topic of ‘ everyday life with dementia ’. The young people participated in various informative events, and approached the topic in a variety of ways. Some made regular visits to a retirement home, others started working on biographies of their grandparents ’ lives, and some tried to express their own feelings and views. More than 70 photographs were submitted. At an event called What do you think ?, the young people presented their work and rated each other ’s pictures. Six pictures were chosen to be printed as postcards. Additionally, a panel of judges rated the pictures based on creativity, photographic quality and emotionality. You can also find one of the photographs in this book. These pictures formed the core of a travelling exhibition, where they, complemented by various bits of important information, brought the topic of dementia closer to the people in Bamberg. The exhibition, Blitzlicht ins Land 112

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des Vergessens, can be booked to travel to other regions, too. The dementia initiative saw the competition as a complete success : ‘ The creativity and motivation of the young people far exceeded our expectations. The dementia initiative will be able to make use of the pictures in a variety of ways. The fact that all-day schools25 and non-traditional schools are open for such ideas demonstrates how important the ideas are for social learning and for taking on social responsibility. ’

The project Demenz : Stadtteile auf dem Weg ( ‘ Dementia : Districts on their way ’ ) aimed to expand ( especially cultural ) events and activities in various parts of Stuttgart that were intended to foster a better understanding of dementia to other parts of the city to further develop them in relation to the various local contexts. This meant using public space itself. As part of a week of action, pupils from the acting school Live act Akademie performed dances and plays on the street. They documented most of their performances on film and wrote reports about each day. The reports and film clips are accessible online via a link on the school ’s website. This meant that not only the actors themselves but the community as a whole could engage with the topic, and reflect upon it even after the week of action had ended. Activities such as these are often experiments whose success might depend on a lot of variables such as location or weather, including factors that cannot easily be predicted. Which people will attend the event ? Will there be someone who will break the ice ? What mood will visitors be in ? What is special about the location that needs to be taken into consideration ? Even if one considers all these aspects, success is not guaranteed. It is important not to be discouraged if an event does not create the expected impact, as people will have noticed it at least indirectly and might be more willing and ready to edge a little closer to the topic of dementia the next time. This indirect approach can entail long-term success. Nevertheless, those involved in the project LebenTrotzDemenz ( ‘ LifeDespiteDementia ’ ) in Friedrichshafen had expected more from their playful approach to dementia, or rather, from their audience : ‘ We wanted to raise awareness for our project and our partners with an information stand on two holidays, at the same time as the weekly market 113

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in Friedrichshafen, using a health clown as our head-turner. On the first day, we only reached a few people due to the very inconvenient placing of our booth in the pedestrian area. After talks with the city administration, we were given a better spot. In reference to memory work, our booth was decorated with tools and artefacts of the past ( for example, a record-player and clothes from the 1930s ). The health clown approached passers-by carefully, sometimes with a sly grin, using hand and face gestures to stimulate interest and curiosity about the booth and the topic of dementia. We wanted to invite them to talk with us. People were very reserved on both days, however. ’

In Gießen, volunteers from the project Demenzpaten ( ‘ Dementia companions ’ ) and the responsible association Initiative Demenzfreundliche Kommune Stadt und Landkreis Gießen ( ‘ Dementia-friendly community – City and district of Gießen ’; consisting of both professionals and volunteers ) felt similarly when planning for the World Alzheimer ’s Day. They wanted to have more The richness of lived moments. than a simple information stand, and came up with the slogan Brücken bauen zu Menschen mit Demenz ( ‘ Building bridges to people with dementia ’ ). Balloons worked as a head-turner and attracted children and their parents. The slogan was visualised in various ways. Pictures of bridges and monuments, local as well as globally known, were posted all over the stand. People could build their own bridges with building blocks, and join in the building of a Leonardo bridge, whose special weave-like construction makes it so that it is self-supporting. The pictures of bridges helped start conversations between companions and passers-by, and an educational film by the Alzheimer ’s Association was shown in the background. There were eight people working at the stand, and the pleasant autumn weather did its part. After six hours, some passers-by let the balloons fly, including the small cards that had ‘ Dementia concerns all of us ’ and contact details on them. Raising awareness and trying to bring attention to a certain topic can sometimes start very small, as demonstrated by the project Netzwerk Demenz Sonnenbühl – ein gutes Leben mit Betroffenen und für Betroffene ermöglichen ( ‘ Sonnenbühl Dementia Network – Making a good life possible with and 114

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for all people concerned ’ ). It aimed to re-design the community in a way that would make people with dementia feel welcome and enable them to be involved. The project was started by a single woman who had a relative that lived with dementia. Her first aim was to find others who shared her motivation in order to exchange experiences and thoughts. She managed to convince, among others, the mayor and several local associations. Additionally, she developed a concept for an exhibition ( auf augenhöhe – Eine Annäherung an das Phänomen Demenz; ‘ on equal footing – an attempt at approaching the phenomenon of dementia ’ ) and several informative events, and put them into practice. The picture drei Grazien ( ‘ three Graces ’ ), which was taken during the project, shows the richness of lived moments such as these. The basic aim of the project EULE – Engagierte Unterstützung lotst Einwohner mit Demenz ( ‘ [OWL] – Guiding people with dementia through committed support ’ ) was to educate staff from the local city management, public institutions, shops and cafés in regards to dementia, and to help them build small bridges to people with dementia in their everyday lives. It was organised by the association Scheibenberger Netz ( ‘ Scheibenberg network ’ ), and sought to help people orient themselves and foster encounters and mutual understanding between generations. A questionnaire was used to assess views, experiences and educational needs, and to create and distribute informational materials. This included a symbol intended to help people recognise dementia-friendly locations in the area. The original plan had not included the competition that asked people to send in paintings and drawings of owls with the aim of finding the above-mentioned symbol; the submissions were later turned into a travelling exhibition. Children and teenagers from the kindergarten and the primary and secondary schools in particular participated with a lot of effort, ideas and talent. But adults, too, submitted paintings, pictures, drawings, prints and pieces of handicraft. This resulted in over 90 owls, which was more than anyone had hoped for. After a main presentation event, the pictures remained hanging in the town hall for almost three months, where they could be seen by anyone who passed through the building. At the same time, these Scheibenberger Eulen ( ‘ Scheibenberg owls ’ ) were shown in schools, kindergartens, doctors ’/medical surgeries and online, always with a short explanation of their origin and the project ’s aims. The pictures were exchanged regularly so that each was shown at every lo115

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cation. To enable continued use of the submissions, they were used as the basis for roll-ups that also include various statements. These roll-ups are now available for use locally and elsewhere.26 A working group of the project Verstehen und verstanden werden – Miteinander Leben mit Demenz ( ‘ Understanding and being understood – Living together with dementia ’ ) by the city of Hilden collected statements by people with dementia in retirement homes, support groups and private contexts to make the desires, thoughts and needs of people with dementia visible. These statements cover a wide range of aspects, as demonstrated by quotes such as : ‘ I feel so empty, so lost. I am like a star without a sky ’, ‘ I am happy that you are here ’, ‘ I think the world is going crazy ’, ‘ When you can ’t talk to anyone, you forget how to be in the world ’, ‘ In my time, waiters weren ’t that happy. People still worked hard then. ’

This quickly led to the idea of inspiring others with this collection of quotes. As part of an exhibition entitled Stimme der Demenz (‘The voice of dementia’), statements were printed on jigsaw puzzle pieces (which also fit the project’s logo27) and put on a potted olive tree that was 3.7 metres (12 feet) tall. The exhibition was first shown in the town hall square, as many people pass through there. They often stopped at the tree, took puzzle pieces into their hands, and pointed at the ones higher up to show them to others. (The olive tree is scheduled to go on a ‘journey’ through the town once the project is over.) When people started asking for printed versions of the quotes, the project members developed the idea of producing postcards with the statements that would also advertise the project ’s closing event. A poster stand was put next to the tree, and passers-by could take postcards with them. Some cards were sent to nearby towns, where they sometimes served as an impetus to collect statements from the respective local contexts. To make the distribution more flexible, the project decided together with Aktion Demenz to organise a travelling exhibition, which consists of 32 puzzle pieces in various colours and the collected statements, the roll-ups and the poster stand. This travelling exhibition can now be shared with other initiatives. The exhibition seems both to refer to what people know from their own lives ( ‘ Oh, I ’ve had a situation like this with my mother. ’ ) and 117

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make people rethink their ideas and views on people with dementia. Many statements, with their humorous or deep messages, help people get a new, more complex perspective on dementia. This is certainly an effective step on the way to dementia-friendly communities. 3.3 Enabling networking – inspiring ideas Attempts to foster support for people living with dementia and their friends and families often try new paths beyond volunteer care, assistance or visiting services. Interested members of the general public turn into multipliers and start their own activities. Already at the Aufbruch ! ( ‘ New beginning ! ’ ) event in 2008, Aktion Demenz referred to the Demenzpaten ( ‘ Dementia companions ’ ) project in Augsburg that was part of the campaign Mit Alzheimer leben ( ‘ Living with Alzheimer ’s ’ ). The idea behind this project is that people can inspire others in their neighbourhoods and communities, giving courage and reducing stereotypes. Since then, there have been several attempts at implementing this idea in various places, and many of the funded projects also had similar experiences. As part of its project Demenz-Netz Berlin-Spandau ( ‘ Dementia Network Berlin-Spandau ’ ), the district office in Spandau wanted to complement existing networks with civil society actors such as housing co-operatives, district managements, retailers, self-help groups, and organisations for friends and families. To inform the general public about the living situations of people with dementia, a two-day event was organised that covered a wide range of topics and was attended by 180 people. ( Some of the feedback suggested that people would have preferred it if such a wide range of topics had been spread out across a longer period of time. This might make sense for events that foOh, I ’ve had a situation like this with my mother. cus on local contexts and attempts to reduce fears step by step, particularly if additional resources for expanding such activities are unavailable. ) In a further step, the project aimed to train points of contact such as café staff, janitors and visiting service volunteers as ‘ dementia guides ’ who might recognise signs of increasing confusion or need for help. These guides should then form small, local networks that broker neighbourly support and refer to pro118

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fessional help and consultation services. As part of the project, a proposed form for this idea was developed and some first steps towards its realisation were taken.28 For their project Netzwerk kommunaler Demenzpaten ( ‘ Local dementia companions network ’ ), the Initiative Demenzfreundliche Kommune Stadt und Landkreis Gießen ( ‘ Dementia-friendly community – City and district of Gießen ’ ) approached individuals that were already involved in an association, initiative, church community or other institution to talk to them about how people with dementia could participate in these established structures. They then trained people to become ‘ dementia companions ’. On the one hand, these were supposed to enable people with dementia and their friends and families to participate in their associations, churches etc. via concrete supportive measures. On the other hand, they also worked as multipliers, bridge builders or representatives to raise awareness for people with dementia and / or their friends and families in their respective associations or institutions. These efforts were intended to establish a network. It was particularly important to communicate to the general public that these dementia companions could not offer support or advice themselves but were meant to assist with finding the right kind of help. ‘ Most people registered to become companions because of media coverage of the project. Contacting associations directly, which cost a lot of time and money, hadn ’t been very successful. Similarly, we got little response from boards when suggesting training a dementia companion in their respective associations. In the end, it was interested members of the associations that showed the most initiative. ’

The district office of Ludwigsburg started the project Circles of Support, which provided support groups for people with dementia based on the approach with the same name that has become best practice in working with people with disabilities. It is intended to enable people to actively participate in their social environments and communities. It is sometimes hard for people with dementia to maintain their social relationships, as family members and friends often withdraw, out of confusion or fear of doing something wrong. The project found volunteers that created support circles to help people with dementia indirectly and promote solidari119

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ty in the community and in their individual social circles. People who, before the onset of dementia, were part of a sports group, went to the sauna or to the theatre, sang in a choir, went bowling or simply enjoyed going out for coffee should be able to continue doing this. In the project, it is not not the volunteers themselves who accompany people with dementia. Instead, they raise awareness among friends, neighbours and family members so that these can provide support for engaging in such activities directly. The effects of this project will only become clear in the future. At the moment, it faces the challenge of finding people with dementia who want to participate. To strengthen the neighbourly environment in their towns and ensure that people with dementia can decide how to live their own lives, members of the association Generationenhilfe Börderegion – Hand in Hand im Bördeland ( ‘ Generational help Börde region – Hand in hand in the Börde region ’ ) help each other based on the principle of co-operatives for the elderly. The project is called Hand in Hand im Bördeland – Einbeziehung Demenzkranker in das dörfliche Leben ( ‘ Hand in Hand in the Börde region – Including people with dementia in village life ’ ). Events organised at the new social space were often attended by people with dementia as well as those without. Additionally, many members of the community became ‘ companions ’ and accompanied people with dementia in playing games, doing needlework, cooking or for physical activity while sitting. After one lesson on dementia, a local secondary school showed such great interest that it became involved in two joint projects. Students interviewed cooks, and helped work on a cook book that will soon be published under the title Kochen mit Menschen mit Demenz ( ‘ Cooking for people with dementia ’ ). Another group of students is learning about housekeeping and domestic What I particularly enjoyed was that I could think about the topic in a completely different way for once. management. A care home is planning to create a dementia garden, and the association has established a round table that brings together social actors from associations, clubs and organisations aimed at elderly people. In the long term, they plan to bundle their services, better connect them and avoid overlaps. They are also looking for ‘ companions ’ in other clubs and associations to better include people with dementia. The association had started out 120

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with 73 founding members, and had grown to 260 members by the time the report was written two years later. Besides the board, there are volunteers who do supporting office work; project leaders are responsible for the social space ’s various services and events. The project also reached initiatives outside of its local context and often advised other neighbourhood assistance groups. Networking – or much rather exchanging ideas between different social actors – need not be limited to a small geographical area. Talking to initiatives from far away that have similar goals or to social actors that are working on completely different topics but within the same federal state can be very beneficial. This exchange creates opportunities for realising what is possible, and information that is already available elsewhere can be spread further in one ’s own local context to inspire new ideas. However, while this support and advice from the outside can be beneficial, we should not forget that most initiatives already reach their limits when trying to network locally. This is why it is important to stop and think what can be done in one ’s own local context to advance the cause of dementia-friendly communities and combine different aspects, instead of doing networking just for the sake of networking or creating yet another working group on a topic that has been covered extensively already. Looking outwards can be a part of this. This stopping to think, taking a step back and venturing outside one ’s own comfort zone is what Aktion Demenz received the most positive feedback for in its exchange workshop. ‘ What I particularly enjoyed, besides the ideas from others, was that I could think about the topic in a completely different way for once. It was nice to be able to reflect and talk openly about it all. This often gets left behind in our daily work, in between all the many different issues we have to deal with. ’

This is also why the cultural endeavour Demenz und Kultur ( ‘ Dementia and culture ’ ) that was developed as a joint initiative by three different social actors and is not limited to a single federal state is among the funded projects. It involves the cultural centre Alte Polizei ( ‘ Old Police Station ’ ) in Stadthagen / Schaumburg in co-operation with the association Leben mit Demenz Alzheimer Gesellschaft Kreis Minden-Lübbecke ( Living with dementia Alzheimer ’s Association in the Minden-Lübbecke region ) and the Generationentreff in 121

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Enger. Using the slogan Mit Kultur gewinnen alle ! ( ‘ Culture benefits everyone ! ’ ), the project focuses on shared responsibilities at a municipal and regional level as well as networking between social actors and cultural institutions to include people with dementia in public life. What is particularly interesting to note here is that experienced partners with different specialisations co-operated with a relatively new partner so that they could all learn from each other and inspire each other with new ideas. 3.4 Migration and cultural sensitivity Many projects realised that a person ’s approach to dementia also depends on their cultural background. When immigrants lose language skills that they have acquired later in their lives, special facets – or rather different facets than in other cases – can become relevant. This has been identified as an important topic, but most have only approached it from a very limited perspective, which is usually the question of how ‘ we ’ get people with a migrant background to accept and make use of the various forms of support offered by the public healthcare system. We argue for a more differentiated view. People who may have lived their whole lives in a certain subculture might feel estranged if they are expected to be integrated into the German health care system because of their dementia. This does not mean that it is not a good idea to make information as accessible as possible and sensitise relevant social actors among many subcultural groups, especially in terms of how the situation is changing in regards to relying on children to take care of their parents as they get older. But would it not be better if we focused more on mutual exchange of experiences and attitudes ? What can people who do not have a migrant background learn from those who do ? We need to take a closer look at why particular offers and services are not being accepted, maybe even cannot be accepted. We need to find out which ideas and attitudes towards dementia exist, without sorting them into ‘ right ’ and ‘ wrong ’ ones from the very beginning. Additionally, dementia also interacts with the fact that care workers may often have migrated from elsewhere themselves. This might become relevant in situations such as when people work in a country with which their country of origin was once at war, or when cultural expectations in relation to physical closeness differ significantly. While these aspects can only be briefly 122

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mentioned here, they need to be included in any inter-cultural approach to dementia. The project Vernetzung von Angeboten und Akzeptanz für Menschen mit Demenz ( ‘ Networking services for and acceptance of people with dementia ’ ) was made possible by the Netzwerk für ältere Menschen ( ‘ Network for elderly people ’ ) in the Friedrichshain-Kreuzberg district of Berlin, which had organised various days of action before but is operating without its own staff or budget. The loose collection of people within the network proved to be challenging at times. In four of the eight district regions, between 35 and 94 percent of people older than 55 had a migrant background. Because of this, the project wrote and translated a newsletter that informed people about local services and opportunities available to people living with dementia in the area. This text ended up focusing on care structures, which, according to the project initiators, represents the network ’s specific member structure. Softening these member structures is not an easy task, which is a realisation shared by people in other places, too. The newsletter was distributed via multipliers and also online, where it can be downloaded from the local district office ’s website in Turkish, Russian and Arabic. It was consciously designed not to include any upcoming events and instead serves as a basic information sheet. It also includes a translation of the Esslingen Call to Action by Aktion Demenz that can be found in the first part of this book. The project In dem Netz ( ‘ In the net ’ ) in Ingolstadt distributed flyers on dementia and migration that included tips and tricks in various languages on how to deal with dementia. Over the course of conversations and committees, people came to the following realisation : ‘ A large majority of migrants don ’t approach the topic of dementia and also the idea of needing care very openly. Many deny that elderly people might get frail. Or they treat it as a problem that is only to be dealt with within one ’s own family and must not be made public in any way. This view is very often rooted in their culture. ’

Many projects arrived at the conclusion that there is a need for more information and education to change these attitudes. However, just as with elderly people without a migrant background who try to find a ‘ solution ’ within 123

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their own families and without any help from outside, we need to be careful to not act one-sidedly. The project Migranten für Migranten ( ‘ Migrants for migrants ’ ), which was part of the Soziale Stadt ( ‘ Social City ’ ) programme in Ingolstadt, organised educational offers and informative events for migrants who volunteer to spread this information in their communities, and to act as advisors and support for members of these communities. The approach seems to also work in regards to dementia as it is less susceptible to obstacles caused by intercultural prejudices or fears, and people can share and receive information as equal partners. The project also allowed the people behind it, outsiders, to get in contact with migrant organisations and reach even more people. The Alzheimer ’s Association in the Warendorf region started the project Integration demenzkranker Menschen mit türkischem Migrationshintergrund ( ‘ Integration of people with dementia from Turkey ’ ) in response to how few of the available support offers were being taken advantage of. Based on a needs assessment, strategies for action aimed at raising participation and integration were developed. The multipliers all agreed that their target audience did not know much about dementia and that families ’ need for external care workers was rising due to changing family structures. At the same time, help, care and support services were presented to members of the target group whenever possible. However, most people said that the care provided by their own family – in most cases spouses or daughters( -in-law ) – was sufficient for them. When talking about men being cared for by their wives, people often commented on their being a lot younger than their husbands, which meant that, at the very least, they had more physical strength to support and care for their husbands. The project organised events and was in contact with existing groups that from time to time were open to informative events. ‘ Events that were about ageing in general were better received overall. Events that were entitled “ Ageing and Health ” worked as door openers that could be followed up by more specific events such as events on legal issues or dementia. ’

As part of the project, people with a migrant background who had experience with dementia and care work received training as personal assistants, 125

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which in some cases led to them finding work in support and care work services. This group also suggested creating a dedicated help and support group. To advertise the events, the project approached the local monthly Turkish-language newspaper, which is now considering the introduction of a dedicated section on dementia. However, it should be noted that the target audience was reported to rely less on print media and more on satellite television. The project Verstehen und verstanden werden ( ‘ Understanding and being understood ’ ) by the city of Hilden also aimed to establish contact with people with a migrant background. At first, the project planned a course for multipliers that paid particular attention to multicultural sensitivity. Existing links to the city ’s integration office and council as well as the boards of migrant associations were used to ask whether they could generate interest for such a course within their spheres of influence. The low number of responses made it clear that most would prefer a shorter introductory session on the topic. In addition to this, the heads of the türkisch-islamische Gemeinde, the griechisch-deutscher Freundeskreis and the islamisch-marokkanisches Kulturzentrum ( the ‘ Turkish-Islamic Community ’, the ‘ Greek-German Circle of Friends ’ and the ‘ Islamic-Moroccan Cultural Centre ’ ) showed great interest in such events for all interested members rather than just multipliers. For these reasons, the initial plan was changed : ‘ Instead of a course, we organised events for the three organisations and their members that served as an introduction and door opener. The programme of each evening / afternoon was planned in close collaboration with the heads of the organisations and adapted to their wishes and needs. The result was three very different events. With all of them, it was particularly important to us to not only convey information but also establish longer-term contacts. ’

For this reason, the events always featured project members who introduced themselves and the various help and support services, as well as answered questions. The speakers themselves were chosen based on whether they had cultural ties with the respective community, and whether they spoke their language, which proved to be immensely helpful.

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4. Common topics and exchanging experiences The evaluation shows that despite significant local differences, there are many similarities across projects in regards to both their successes and the difficulties they faced. In workshops, in reports and when talking to the office, some questions ( and answers ) came up again and again. This allowed us Nothing about us without us! to identify important topics that we can safely assume also play an important role in other projects. This part of the book takes a closer look at some of these topics with the help of ( partially anonymised ) quotes from people involved in the projects. 4.1 People with dementia and their friends and families People living with dementia, their friends and families, their ‘ carers ’, etc. naturally play an important role for initiatives working towards dementia-friendly communities. After all, it is our goal to improve the situation in their respective local contexts. The evaluation of talks with project initiators and people responsible shows, however, that only a few projects have made activating, including and encountering people with dementia and their friends and families the main target of their efforts. Altogether, one gets the impression that ‘ networks are built, trainings organised – a whole structure is constructed, but neither those directly affected by dementia nor their friends or families show up. When projects report again and again that there has been less contact with people with dementia and their friends and families than was hoped for, projects work around rather than with those affected. ’29

Many projects explicitly targeted people other than those concerned directly ( including professional care workers ). However, these projects, too, have to consider the message coming from disability activism, Nothing about us without us ! – the needs of those directly concerned have to be considered. But is increased inclusion in committees, as is often called for, the only option here ? Does every committee have to have a token person with dementia ? Is includ127

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ing people with dementia in working groups, councils and committees something that we should aim for ? Is it possible ? And, in any case : how could we We don ’t know where these people are or how we can reach them. achieve this if we wanted to ? It seems necessary to try and test several very different approaches. Some of the challenges we face here become apparent in the following quote from a project member : ‘ For people with dementia and their friends or families, committee work is hard, too. Those with dementia can only participate if their dementia is not yet too severe. Friends and families have to invest even more of their already scarce resources, especially their time. It doesn ’t help that this kind of work usually can ’t be done at home. This is why we need additional support in this area. ’

To raise awareness among other social actors and the general public, it was and still is certainly useful ‘ not to focus on the problems and limitations of people with dementia but on making their potentials, their wishes, their dreams and their perspectives on life intelligible ’. Nevertheless, we need to remind ourselves not to ignore or make light of the negative sides of living with dementia. Unfortunately, people ’s needs and fears, and also the hurdles that prevent those directly concerned from participating are rarely talked about. Could this be because the mere thought of such participation is still new and unusual ? Do the challenges within ­existing groups and structures that people think exist or that actually exist seem too big to leave any room for interaction with ‘ the other side ’ ? When parti­ cipation takes place ‘ on paper ’ alone, it serves only to cover up what is going What can I say about it if I have it myself ? wrong. For example, people might think that participation means simply showing an agreement they have drawn up by themselves to someone with dementia. Is this a problem of contradictions between theory and practice, networking and lived reality ? What could we do instead ? The coming years 128

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are going to bring great changes in this regard. Allow me to quote another project here : ‘ The guest with dementia remarked upon her own situation by saying, “ What can I say about it if I have it myself ? ” ( Comment by the project members : This was a very touching moment, as we had never heard her speak about her situation before, and we didn ’t expect her to know what she is living with. ) She was reluctant to reply to questions in dis­ cussions – “ I don ’t remember. ” In one discussion about [a local area], she had a lot to say and commented, “ I do remember that, but nobody ever asks me about it ! ” ’

People were particularly likely to report that they were not happy with their contact with people with dementia in projects that followed more traditional paths, e. g. offering advice and support and focusing mainly on people living with dementia. Establishing direct contact with people with dementia often turned out to be rather difficult. Additionally, it is hard to say who exactly has been reached, particularly when it comes to public events, as those living with dementia are not necessarily easily recognisable as such. This is also reflected in the following examples : ‘ How can we reach people with dementia ? If you don ’t know them, it ’s hard. And I don ’t give personal advice myself. I only do administrative tasks, coordinating the various advice centres. ’ ‘ We don ’t know where these people with early-stage dementia are or how we can reach them. ’ ‘ I remember one time where someone with dementia was here. A father with his son. ’ – ‘ But it ’s the mother who has dementia in that family. ’ – ‘ Oh, I see. ’ – ‘ But we had someone with dementia in our painting group. ’

Projects with a relatively high number of dementia professionals often came to a broad general agreement that friends and families of people with dementia carry an especially heavy burden. Some lamented that friends and families would not accept the various forms of help offered to them. This is 129

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a ‘ problem ’ that one often finds raised in many other contexts, from expert groups organised by the federal government, to coffee talk at conferences, down to local or even private contexts. It seems that, unfortunately, not many ask whether these forms of help are really what people need in the first place. Only rarely do people think about what conditions might influence people ’s reactions to such offers posiI am shocked by how big the burdens are that families cope with for years. tively or negatively, for example in regards to times, channels of communication, shuttle services, care options, topics or event formats. Additionally, might it not also be seen as a good sign if people manage without professional help ? But whenever a point like this is made, people are often hurt and complain. After all, they have put so much effort into the project, have planned everything – and then nobody shows up. They think that the people the event was organised for have to accept the help they are offered, because they cannot do it alone and only ever come when it is almost too late. If only they knew enough about it all, everything would change. Perhaps we should try to not judge the behaviour of those affected that quickly. We perhaps need to realise that their reluctance may be the result of a desire to continue their lives without limitations as well as they can, and for as long as possible. That they are trying to ‘ manage ’ alone or within the family, and only ask for outside help when they really cannot go on anymore and have reached their limits. It is certainly true that we live in a society where it is becoming increasingly common to rely on professional outside services for all kinds of aspects of one ’s life, but this is less true for people from older generations. ( An example from a different area would be child care. There is certainly a tendency to professionalise knowledge acquisition, not always to the advantage of everyone involved. But would everyone seek professional help the very moment they encounter a difficulty with their children instead of trying to deal with the issue on their own first ? ) Drawing on one ’s own strength, taking responsibility for oneself, and intrinsic motivation are all traits that are highly regarded or even expected in our society. When it comes to dementia, there is no single right or wrong. What helps one person might cause trou130

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ble for a­ nother. And one ’s perspective changes when looking back at one ’s own ­situation compared to when one is just starting out or is right in the middle of it. Is it really service offers that the people in these situations need more than anything else ? The current trend for trying to reach people with But there are many who simply don ’t seek help. early-stage dementia should be reconsidered as being too selective, considering that most people ’s social environments can deal with the situation, and that the number of early diagnoses is still rather low. Could these ideas and ­efforts not be converted into more general offers for the elderly, which would then automatically include people with dementia ? Again, experiences from the projects address this question : ‘ Our calls were mostly taken up by helpers, rather than by the families. People still have a lot of inhibitions – who knows whom we ’ll get, who is going to get access to our most private moments ? Families want to cope with it all themselves. Friends and families don ’t come on their own – we need to reach out to them. ’ ‘ There are a whole lot of options but people don ’t use them. I know two people who moved to [a new town] and don ’t see the point in going out and meeting people. Friends and families are not willing enough to take advantage of the many offers. ’ ‘ But there are many friends and family members who simply don ’t seek help. ’ ‘ People are so stubborn and caught up in their routines. They stay in their shell. Our goal was to use as many different ways as possible to find points of contact that could influence people with early-stage dementia. […] We sent information materials to all households. There were people who responded who were willing to help, but nobody said, “ I need help. ” ’ ‘ The established families want to manage all by themselves. They seem to have this expectation of themselves. Friends and families of people with 131

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advanced dementia told us, “ Ah, we would have needed that at the beginning, when everything wasn ’t as clear as it is now ! ” ’

But what about others ’ expectations about how to properly deal with someone with dementia in one ’s family, what about social stencils of what people in these situations are like and how they ought to see themselves ? In one context, people might be told that they need to finally realise that they should send their family members to a day care or a home for the elderly, while in another context, families are being criticised for doing exactly that. And, even worse, sometimes both these accusations are directed at the very same person, which does not make the lives of friends and families any easier : ‘ Many women don ’t want to give up these responsibilities because they fear people might think they ’re not doing their duties. “ Look, she ’s at the café and her husband is at home with someone else. ” Those things. ’ ‘ If you have someone in your family who needs care, you need to be there for them. It ’s reprehensible to send your mother-in-law to a dementia care group every afternoon. ’

While people with dementia and their friends and families are often only thought of as one single group, issues can arise when their respective needs conflict. For example, friends and families might not see the point of a certain activity or event because they assume that ‘ their ’ person with dementia will not get anything out of it or would not behave that way at home. This can be irritating or even frustrating for everyone involved, especially when people witness that people with dementia may enjoy being in new environments and participating in various activities, perhaps more so than at home. ( Again, this depends on the individual and requires balancing the exhaustion against the value it brings, both for friends and families and for people with dementia. ) Sometimes, people are afraid that their family member will not behave properly, or they fear others ’ reactions to a certain behaviour : ‘ […] friends and families were rather uncooperative, saying things like, “ What am I supposed to do with my husband here in the choir if he starts roaming around and throwing down everyone ’s score sheets ? ” They could 132

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only think about how difficult their loved ones were, and thereby blocked people with dementia from participation. ’ ‘ What ’s also difficult is that I often know of someone living with dementia, but when I talk to their families, they dismiss everything and say, “ No, they can ’t do that anymore. ” That ’s something I ’m working on : getting people to join us who only sit at home and wither away. ’ ‘ Friends and families can also find themselves in embarrassing situations. I ’ve witnessed that once. You go into the town with your mother. She sees a woman with a large behind coming out of a shop, and then she says, loud enough to be heard from the other side of the street, “ Oh my, look at that humongous backside ! ” Of course, this is a really unpleasant situation to be in. ’

Sometimes, new experiences change one ’s attitude on what is still possible, though. For example, there is the case of a participant who was inspired by the Demenzkampagne Friedrichshafen ( ‘ Dementia campaign Friedrichshafen ’ ) and took her husband, who is living with dementia, on a steamboat cruise. The husband, to the great surprise of his wife, enjoyed the cruise very much. He was ‘ attentive ’, in a different way than usual. The woman realised that it was important for her husband to leave his familiar environment and spend time among other people. This led her to take him on another boat trip, and from this experience onwards, he got to spend one day every week in a day care home, which seemed to have a significant positive effect on him. Encounters between people with and without dementia can be organised particularly well in spaces that evoke memories. In Friedrichshafen, this was the Zeppelin museum that many locals feel connected to. According to the local project ’s assessment, this space encouraged uncomplicated exchange People aren ’t used to talking. between people with and without dementia and allowed sharing in the experiences and knowledge of others. People with dementia were met with respect, acceptance and positive attention; they enjoyed and felt safe talking about familiar topics in a familiar space. 133

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The project GOLD by the municipality of Goldenstedt offered events on a monthly basis, which were well-loved for their social atmosphere. During afternoons dedicated to playing games, it became clear that people with dementia can still use their long-term memory effectively and integrate very well into groups for playing well-known card games. The events ’ effect was boosted by the location, the multigenerational house, which seemed perfectly suited to the purpose. Many felt comfortable there, including those who would otherwise avoid the topic of dementia. It was a place that people ‘ dared ’ going to, where nobody would ‘ stand out ’ ( as a family member put it during a gaming afternoon ). At the same time, it was a general and visible local meeting place. The evaluation suggests that self-help groups and groups for friends and families in which they can be among themselves work best in reaching friends and families. However, most have such exhausting everyday lives that they can hardly find the energy for a weekly meeting. They might be dealing with an acute phase of dementia that keeps them busy, or they might simply have reached their limit already. They might not want to talk about their emotions, or they might not see the point in coming together in the first place. ‘ It ’s too busy, everything ’s too much. And people aren ’t used to talking, at least many of them aren ’t. ’ ‘ The topic is met with great interest and lots of people attend the trainings – however, it ’s really hard to reach people with dementia and their friends and families. Is there simply no demand ? Do people simply manage okay at home ? Our generation thinks, “ We ’re not the kind of people who are constantly at the club, drinking coffee. ” ’

Let ’s have a look at the following conversation :30 Someone working in a home : ‘ We have the same situation in the homes. You can send invitations all you like, you ’ll end up with four to six people from among friends and families of people with dementia. It really makes you think they just don ’t want to know more. ’

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A project member who has a family member with dementia herself replied: ‘ It ’s cosy and everything but it ’s also annoying when someone just spends hours complaining about something. Sometimes, the groups are just moaning groups that aren ’t very constructive. There ’s little actual content and you have to force yourself to go there. Sitting there for two hours and only talking about the food plan … I ’ve had that often enough. ’

The multigenerational house in Wunsiedel co-operated with the Protestant social welfare organisation Diakonisches Werk Selb-Wunsiedel to organise modular events centred around the idea of different generations living together and the wish for a diverse cast of project members for the project Die Stadt ist eine Familie ( ‘ The city is a / one family ’ ). For this purpose, social events such as the ‘ family day ’ at a local museum and the ‘ healthy breakfast ’ in two schools were intended to enable people with dementia and their friends and families to participate in their communities. The plan also included a monthly informative event for friends and families doing care work ( e. g. on care aids, living wills, ergotherapy, memory training, etc. ). However, this module was later cancelled due to low attendance. Parts of the project that were more successful and well-attended included the healthy cross-generational breakfast, the Masses, the memory and activation meetings, the trips, and also handicraft offers. The latter were rated as particularly helpful and positive, and continue to be organised. It is interesting to note that the informative events were not successful here, contrary to their success in other projects. We can only assume that this had to do with different needs, maybe even different knowledge ? Maybe more general informative events are better suited for people who are still a little anxious about the topic, who do not live with dementia yet and are looking to prepare themselves ? The project HILDA-Mobil ( ‘ Help for people with dementia and their friends and families ’ ) was organised by the Bürgerinstitut Soziales Engagement ( ‘ Citizens ’ institute for social involvement ’ ) in Frankfurt and also targeted friends and families. One might think that the infrastructure in capital cities would allow easy access to advice and other support services. However, in some areas in Frankfurt, friends and families only rarely took advantage of services located in the centre of the city, despite the fact that about 70 percent of locals with dementia live in their private homes. Many of these people live alone, however, and longer distances pose a problem for them. 135

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This is why this project started a mobile dementia service to reach people with dementia in their everyday local contexts and provide accessible help, such as at the weekly market, in front of shopping malls or at festivals. The HILDA-Mobil went to less well connected areas on a fixed schedule. It was easily recognisable thanks to its prominent livery, and people could talk to the professional and volunteer helpers in a direct, spontaneous way. Bringing dementia to places and events where it would usually not be expected, such as football games or festivals in museums or districts, it became more visible for people who would not have engaged with it otherwise. For example, one location was next to a traditional Gaststätte ( a type of restaurant offering typical German cuisine ) known for serving apple wine, which was frequented by visiting groups and cyclists. People noticed the HILDA-Mobil and started talking about it, sometimes taking a flyer. Serving staff also talked to the project members, and in the end, flyers were put on display directly at the Gaststätte – a snowball effect had been achieved. This goes to show that besides the services themselves and making them known in the community, there is a whole range of aspects from everyday life and people ’s lived, multigenerational reality that we need to consider when we want to provide support for people with dementia and their friends and families. We should be careful not to forget these everyday aspects, from casual offers of help in everyday situations to acceptance, understanding and support among neighbours. People who work professionally with dementia need to keep an open mind, too. Let us foster interdisciplinarity, let us involve people with dementia, their friends and families, and volunteers in discussions on what support could and should mean. Let us aim to establish long-term projects in which everyone can work together. By now, a wide variety of very different services are available, and different organisations in many places in Germany have had their own experiences. But despite all the differences, we need to keep asking questions. Why are some offers not taken up ? Why do some not reach their intended audience ? It is essential that we relate these experiences to each other, and that we learn from them. Services might be widely available, but we must not forget that in areas with less infrastructure, rural areas in particular, even the most basic help and support services might be scattered or not easily accessible. Furthermore, there will be fewer and fewer friends and families of people with dementia available for care work the way it is done now, which will ulti136

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mately also mean less financial support and fewer professionals. The urgency of the topic does not lie simply in the current situation and in crunching numbers, but in the fact that people ’s living, work and family situations have already changed drastically and will continue to do so. This needs to be taken into account both in projects on a local scale and on a cross-regional level. At the moment, this appears not to be sufficiently reflected upon in alliances and actions in relation to dementia. Some of them appear interested only in improving the current situation a little bit or in making cosmetic changes. Most approaches rely on the assumption that friends and family can provide support, and people are only slowly beginning to realise that there are also people with dementia who live alone. Additionally, the fact that demographic changes will have a strong effect on the professional sector is not taken into account to the extent it should be in the domain of care work, where projects have been started to bring care workers from abroad to Germany or send people with dementia to be cared for in other countries. It is difficult for friends and families to overcome their inhibitions and talk openly about dementia. Volunteers, who are currently seen as a universal solution by some, will have to take on more and more responsibilities while at the same time becoming fewer and fewer in number. Others hope that the answers lie in the increased use of technology – I will not be able to comment on the ethical, financial and social aspects of this hope here, however. Additionally, it is a common phenomenon that when one tries to engage more closely with these proposed solutions, they seem to only have short-term effects or are only aimed at the next election cycle. But let me return to the projects. Some friends and families are active as project members themselves. In some cases, they have already lost their loved ones and want to share their experiences. Being active and reflecting upon dementia can help them deal with the hard times they have gone through. Sometimes, their own approach has changed, and they can form new connections with other people. ‘ I was so nervous about giving a talk about my experiences with my husband who lives with dementia. I had said, no more than ten minutes. That 137

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turned into 25 minutes. It really felt liberating afterwards. In a way, it all came to life on its own, and it liberated me. I was so afraid. There was an audience of 200 people, and someone might have known my husband and me. He was rather well-known, you see. I also thought of my children – can I say this or that ? I thought, help the others. I didn ’t expect it to have such a positive effect on myself, too. It was the highlight of the event. People came to me afterwards. They didn ’t say a word, just hugged me. This is a level where we can make a difference, not the doctors. ’ ‘ Also, if you care for someone with dementia for years, you lose all your friends. That ’s what I ’m going through at the moment. He passed in February, and now I need to look out for myself. What am I to do now ? This one task is no longer there. That ’s a great relief in a way, but at the same time, you fall into a hole. And you realise that all your friends are no longer there the way they used to be; they ’ve all moved on. And looking to find friends again, that ’s not easy, after six years. When he was still alive, I didn ’t think about this at all, because I had no time to think about such things. But now, I do more and more. ’

People have different methods of sharing the ways in which they are affected with others. While in some places, people are willing to talk about it the moment they learn about it, and have their ‘ coming-out ’, elsewhere, not a single friend or family member of someone with dementia can be found to talk about their experiences or participate in an event. The ‘ danger ’ of being recognised and being counted towards those affected seems too high. Sometimes, people accept that they receive less help in exchange for rejecting an official diagnosis and being classified into a higher care level31. In these cases, we should not look to people ’s alleged stubbornness or ignorance, but instead consider more consciously, and from a social-scientific perspective, how being diagnosed with dementia, aside from being a formal condition for receiving state support, also entails negative consequences : ‘ It ’s difficult for friends and families to overcome their inhibitions and talk openly about dementia. Is there anyone who enjoys admitting that something “ up there ” isn ’t working that well anymore ? I have a friend whose mother lives with dementia – they want help. But the mother ’s husband 138

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doesn ’t want others to know. I say, how are we supposed to help you ? There ’s a lot of help that you can get, but you need to have your mother assigned to a care level. Well, that ’s not an option, because dad doesn ’t want to. Nobody wants to admit it. So at first, getting access to people is the biggest difficulty. ’

The project Kunst- und Aktionstage Demenz ( ‘ Dementia days of art and action ’ ) in Laubach failed to involve people with dementia directly during its first year, despite various attempts to do so and a great number of contacts. The main reasons why people refused to participate were that they were afraid to ‘ come out ’, feared too much public attention or still needed time to come to terms with their diagnosis. ( Even when it came to friends and families, the only person that was willing to participate – in a panel discussion, in this case – was from a town farther away. ) To give those affected a voice, the project team developed the idea of having the publicly known activist Christian Nobody would rush their family members into the house anymore. Zimmermann speak indirectly. He is one of the first people with dementia to speak openly about dementia in Germany. ( His pictures were shown in the exhibition Kunst trotz( t ) Demenz ( ‘ Art in spite of / resists dementia ’ ) at that time as well. ) During the event, audience members read out excerpts from an interview with him while his picture was being projected onto a large screen. This, too, is a possibility for raising awareness and fostering understanding. The general attitude in Germany towards dementia is slowly changing. Shame, fleeing from public life or even hiding family members are slowly being replaced by other views : ‘ Nobody would rush their family members into the house anymore so that people don ’t see them in the garden. Celebrities have a positive effect in this regard. ’

More and more people seem to realise that people with dementia have their own needs, wishes and ideas, which can be very different from those of their friends and families. The project Klar dabei ! Bewusst handeln für Menschen mit Demenz ( ‘ Clearly part of it ! Acting consciously for people with dementia ’ ) 139

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by the Ennepe-Ruhr district targeted various multipliers and focused on local business circles. It reports that services are increasingly designed in a way that departs from the idea of simply providing professional care services for people with dementia and instead focuses on protecting and supporting the autonomy and agency of people with dementia. However, those involved in the project Kulturbegleitung ( ‘ Culture companions ’ ) in Leutkirch im Allgäu quote a woman who cares for her husband as saying the following : ‘ When I go for a walk with my husband who lives with dementia, many people talk to me. They greet me and ask me how we ’re doing. But they ignore my husband. They don ’t even say hello to him. They treat him as if he were invisible, and that hurts. ’

Such experiences do not seem to be rare. A quote from a different project tells a similar story : ‘ The daughter often went to town with her mother. Nobody had had any negative experiences with the mother, but still, the word dementia alone was enough to make everyone give the two of them a wide berth. People asked the daughter how her mother was doing, even when the mother was right next to her. The mother was ignored completely. The daughter noticed that this bothered her mother, even though she had mostly stopped talking by then. The mother wanted out of these situations, wanted to get away. She has lived there for so long, she had owned a business, has many children, knows a lot of people there, and yet, she is incredibly lonely with her disease. Nobody ever visits. One thing that I remember vividly was that someone had put a bouquet of flowers on the ledge outside her window and then walked on. They don ’t know who did it, but the daughter saw it as a sign that people were simply too afraid … It ’s something everyone in town knows, she has dementia, and most people have no idea what that means. ’

To change these attitudes, which often rest on insecurity and a lack of information, the project in Leutkirch invited people with and without dementia to mutual encounters at an afternoon event supported by volunteers. This was not always an easy task. One participant who was already showing small 140

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cognitive deficits said, ‘ I won ’t take part in this, it ’s too childish ! ’ And a very nice, very mentally active old lady said, ‘ You do know that I don ’t have dementia, right ? It ’s just that I don ’t know many people who are as nice and friendly as the volunteers in this group here. Their kindness is flummoxing. I ’m not used to that. ’ It is interesting to note that in the report that these quotes were taken from, they were used as examples of the difficulties that can arise when people with and without dementia come together. But could they not be examples of the fact that training and volunteers can get carried away ? That treating other people like one would treat children might actually create an unnatural atmosphere that is not age-appropriate for people with dementia ? Just like there are also people without dementia who would enjoy such intense levels of friendliness instead of doubting or even rejecting it ? I do not want to label this or that behaviour right or wrong; I want to encourage thinking about these questions. Despite what the next quote might imply, it is impossible to draw a clear line between urban and rural areas in these matters. Some things might be a lot easier in the countryside than in cities. Friends and families do not have to keep constant watch over their loved ones, who are free to move around on Their kindness is flummoxing. I ’m not used to that. their own much longer than in cities. There is always someone who knows the person with dementia and can help them find their way home. It is easier because people know one another, and know who belongs where and with whom. People can make agreements in a more direct way, they can live neighbourly support and help. However, this can also have a negative effect on some, who fear being ‘ discovered ’ or have to travel longer distances for professional help. ‘ There were problems with getting a group started in [the town]. Unlike the other established groups, this was supposed to be one for which there were no sign-ups in the town yet, no registered demand. It turned out that ( early-stage ) dementia is still taboo in the countryside – despite dementia projects that have been active for years and received quite some public attention. ’ 141

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Some experiences made with the project Dorfplatz ( ‘ Village square ’ ) in Tarmstedt concern the realisation that life in the countryside comes with different challenges for people with dementia than life in the city, both in relation to peoples ’ acceptance and in relation to concrete, structural problems. The project addressed, amongst other topics, the importance of dementia in the countryside for families that own agricultural holdings, including on a cross-regional level thanks to the project ’s participation in a regional agricultural exhibition in Northern Germany. Again, shame turned out to be a crucial element in dealing with dementia. People appeared to be anxious not to be connected to dementia in any way. Many kept saying that they were only there ‘ to get some general information. One needs to be informed about these things these days. But we don ’t have anyone like that in our family. ’ That last sentence in particular Have you heard ? Someone in Otto ’s family has dementia. was often emphasised. The project members saw that as an inversion of the positive ‘ Everyone knows everyone ’ into the fear of ‘ If someone sees me here, everyone will know about it, and they will say, “ Have you heard ? Someone in Otto ’s family has dementia. ” ’ ‘ Hiding ’ is more difficult in the countryside than it is in cities, and it probably requires more isolation. It is even more important, then, to foster an open approach to dementia, to turn dementia into a general topic that everybody talks about. The lack of infrastructure mentioned above can lead to challenges in ­other aspects of rural life, too. People with dementia can face almost unsol­ vable problems because of it, especially in regards to limited mobility due to a lack of local public transport if people cannot drive ( anymore ). Nobody wants to keep asking the neighbours to take them to places but there does not seem to be any other solution when necessary trips can sometimes be 20 kilometres ( 12 miles ) or more. Even the friendliest neighbour with the best intentions cannot be expected to always take the time for these trips as well as the time it takes the person to engage in the activity they travelled for, especially if they only have the choice between waiting there or going all the way back home, then driving out to pick them up later and finally driving home again. During an event, an 81-year old family member said, 142

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‘ I ’d really need the support group for friends and families to keep going, just to talk about what ’s on my mind. But it ’s on Wednesday evenings, in Zeven. How am I supposed to get there ? I can ’t drive in the dark anymore because I can ’t see well enough. My friend is willing to take me, but what ’s she supposed to do there every week ? There aren ’t even any cafés that are open at that time. And then I ’d also need someone to look after my husband at home. ’

Both project members and Aktion Demenz see this as an example of the need to look for new, creative support structures because structures that work well in cities cannot simply be transferred to rural areas. However, the quote also shows what people can or could do to directly support those whose lives are affected by dementia. This ambivalence in rural areas in relation to dementia is also reflected in the experiences of the Kunst- und Aktionstage ( ‘ Days of art and action ’ ) by the Protestant welfare organisation Oberhessisches Diakoniezentrum in Laubach, where special logistical challenges were reported. Event locations were often hard to reach because of a lack of public transport, and many disctricts did not have suitable venues for meeting and communication spaces. On the other hand, the rural setting also provided unique potential. The locals knew one another and had built informal networks, which proved helpful for mutual support and participation in the project. At the same time, however, this close-knit network can also function as a social monitoring tool that prevents people with dementia and their friends and families from effectively participating in the community. The project managed to involve, insofar as members knew them, multipliers and people with important roles in the community. Connections to local mayors, priests, club chairs, volunteers and people working with the elderly proved to be particularly useful. However, creating these contacts and keeping them alive requires a great deal of time and energy from staff, and people need to be able and willing to communicate and co-operate. Finally, it was decided that some events would also take place directly in the various districts to reach those who would not have benefitted from the days of art and action otherwise. Other projects might benefit from a similar approach. On the topic of structural conditions, I would like to add that Aktion Demenz was contacted several times by journalists from both German and in143

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ternational media who asked where exactly one could film or take the best pictures of a dementia-friendly community. This was always based on the idea that communities had changed in specific ways such as having different road signs or using special materials. Dementia-focused changes in architecture and technology can certainly be a form of support, but many of them give the impression of an artificial world, and some are criticised on ethical and social grounds. As discussed, the idea of a dementia-friendly community goes in a different direction, and it might not be easy to take a picture of it. However, projects paving the way to such a community might have to struggle with architectural problems. In the project in Laubach mentioned above, for example, finding suitable locations for events took up a lot of time as people had to check whether venues were accessible ( e. g. for wheelchairs and walking frames; whether they had accessible toilets, etc. ). Not even the town hall was able to provide information on that. As a result, the plan to have events for the ‘ days of art and action ’ in as many locations as possible could only be implemented with limitations. The exhibition Kunst trotz( t ) Demenz ( ‘ Art in spite of / resists dementia ’ ) needed a venue in a central location with large and bright rooms with high, empty walls in which paintings and sculptures could be presented. The v­ enue was supposed to not be too remote, and possibly allow for people to find it simply by accident. In addition to that, it needed to provide security for the exhibited artworks, during long opening hours. The Laubach town hall seemed to be the best option. The mayor and city administration were very co-operative and even installed additional picture rails. The large conference hall provided an excellent space for the opening event, Mass and presentations. However, while there was a stair lift to access the building, there was no lift access to the first floor. To mitigate this issue, there were a number of dedicated helpers that made sure that people who had trouble walking up the stairs could participate in the events. In the aftermath of the events, the ( lack of ) accessibility in public buildings became a topic of ­public discussion in Laubach – maybe this will lead to a long-term change and better accessibility in the future. This example also shows, however, that solutions can sometimes be found in ways other than making architectural changes to a building.

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Does a dementia-friendly community mean that we need to get used to the idea of helping one another, maybe in different ways and at different times ? Have we, in our quest for independence and personal autonomy, forgotten how to help others and how to accept help from others, so that the solution employed here feels like a mere fill-in to us and we are unable to see its p­ ositive aspects ? This is not to say that being able to move freely on one ’s own terms and without barriers is not important, but what forms of being there for one another and noticing one another ’s existence might we be missing out on ? Both people with dementia and their friends and families benefit from the existence of local information centres that provide an overview of available help services, contacts and events. However, the project Glücken Gedanken ? Lücken in Gedanken ( ‘ Thinking successfully ? Gaps in thinking ’ ) by the Pommerscher Diakonieverein in Greifswald, a Protestant welfare organisation, took a different approach. It aimed for a shift of perspectives in the local community, from a deficit-oriented model to one of accepting people with dementia. Conventional support services were complemented by a civil society network that is part of the multigenerational space Bürgerhafen ( ‘ People ’s port ’ ). Here, an oft-encountered problem became tangible : There is either almost nothing going on in regards to dementia, or, more often, the right hand does not know what the left hand is doing. There is no exchange between projects, no overview of what is being done, and no widely recognised point of contact one could get in touch with. ‘ In the beginning, we had to go through a long and effective process with administrative staff. We had regular meetings as a working group that not only prepared the public events but, in the beginning especially, had to make the responsible civil servants understand that before we turned up, there hadn ’t been anyone that people could turn to and ask about dementia. There was no official point of contact, let alone an overview of where to go with specific questions. If you didn ’t have a good family doctor, it was mostly decided by accident with whom you would end up. And there certainly wasn ’t any selection to choose from, as nobody knew about the others. There were social spaces that put a lot of effort into organising events such as public readings, musical chairs, singing, etc., but they didn ’t show

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up on any map or register. This is why we created the guide for our city and the surrounding area. ’

In its project Menschen mit Demenz in der Kommune ( ‘ People with dementia in the community ’ ), the Familieninitiative Radebeul ( ‘ Family initiative Radebeul ’ ) tried to create a network and highlight how many aspects the topic has. The project organised various cultural and sports events, days of action, a photo exhibition and multiprofessional training sessions, with the larger aim of establishing or inspiring lasting structures. Almost as a side effect, a local group for friends and families was formed. During the planning phase, the project initiators had thought extensively about what might be the best time of day for their events aimed at providing information to friends and families. In the end, they decided to have such events begin at 2 :30 pm, based Hearing the Voice of People with Dementia ! on the experiences of a support group for friends and families in Dresden. This time fits well into the daily schedule of people who care for someone with dementia and who do not have other work-related obligations. However, the situation is different for friends and family members in paid employment in addition to caring for their loved ones – they asked for a later time. This shows how important it is to take such factors into consideration when planning. It also shows that it is impossible to find a solution that works for everyone, but that we need to keep trying. Hearing the Voice of People with Dementia, which originated in Scotland and has been supported strongly by Demenz Support Stuttgart in Germany, focuses on facilitating people with early-stage dementia in addressing the general public. The project has also co-operated with Aktion Demenz, and we are happy to report that people with dementia have started to speak up, to organise, and to represent their interests themselves. It is important that we listen to them, that they are able to talk for themselves, that they choose what to say and what not to say on their own, and that they have a say in decisions that affect their lives. Many still need to realise that there can be great differences between the needs and wishes of people with dementia and those of their friends and families. We also need to start acknowledging dementia when we encounter it in 146

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its early stages. We need to understand that one can spend years or decades living with dementia, and this living with can happen in many different ways and forms. If we focus only on dementia in its late stages, we risk developing the belief that dementia equals impending death. While we are unlikely to find people who would agree that it is good to live with dementia, life with dementia can still be good.32 If we, as is ultimately necessary, engage more closely with the ideas and wishes of people with dementia, we grow as human beings, and often find ourselves impressed. Of course, these wishes can be very individually different. The main point here is that people with dementia are still people and deserve to be treated as such. Below is an excerpt from a statement by psychologist Richard Taylor. He is an Alzheimer ’s activist living with Alzheimer ’s himself as well as the author of the book ‘ Alzheimer ’s from the Inside Out ’, and spoke at the event Wir wollen mitreden ( ‘ We want to be part of the conversation ’ ) organised by the Demenz Support Stuttgart and the ‘ Citizen ’s Institute ’ in Frankfurt in 2011 : ‘ I ’m not the voice of dementia, far from it. I ’m not even one of the voices of dementia. As my symptoms change from one day to the next, and sometimes even from one moment to the next, I cannot claim that my voice is the same every day. To be honest, there are millions of voices of dementia. And they all deserve to be heard equally. I have met thousands of unique individuals while travelling and talking to people who live with the symptoms of dementia to listen to their experiences. It ’s true what they say : If you know one person with dementia, then that ’s all you know about dementia. It ’s impossible to know everything about everyone. And it ’s certainly impossible to know everything about dementia. There is, however, one fact that is true for all the carers, professionals and organisations that claim to fight for the needs and desires of those who live with the symptoms of dementia : None of them know what it is to live with dementia. None of them live with it every day, trying to deal with the symptoms. Although most of them really do care about us and only want the best for us, they simply cannot truly understand what it means to live with dementia. And yet, many of them do not hesitate to categorise peo147

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ple with labels such as ‘ stage one ’ or ‘ three ’ or ‘ three hundred ’. Many of them claim to know exactly where and how we are supposed to live, what we can do for ourselves and what dangers we encounter in our lives. Try to make your life as monotonous and predictable as possible, that ’s what they say. When we fail once at something, they never ask us to do it again. Instead of saying hello to us, they say goodbye. Let me repeat it : I think that if you know a person with dementia, you only know one person with dementia. If you are the head of a hospital and you diagnose ten people a day with some form of dementia, then, at the end of the day, you know only these ten people. We all are unique human beings. And this uniqueness doesn ’t simply disappear because we live with the symptoms of dementia. This is how I stand here in front of you today. I ’m Richard, and I live with the symptoms of dementia. As most of you know already, we don ’t need doctors to tell us all those myths about what it means to live with dementia. Our friends and even our loved ones tell them with their hugs that don ’t say, ‘ See you later ’, but are more like hugs that we give someone who we think is about to die. Every new press release about the discovery of some new form of dementia reminds us what a burden to society we are. It makes out a bill, detailing the cost of caring for us for our government, the cost for those we love, and finally, the cost we ourselves have to pay. Sometimes, this scares people without dementia into donating money to find a cure – much more for research that is looking for a cure than for research that asks how we can solve the everyday psycho-social problems that those of us face who struggle, directly or indirectly, with the symptoms of dementia on a daily basis. We don ’t need pharmaceuticals, we need socioceuticals. We all need to respect one another as fully and entirely human. We need to support all efforts by those who cannot fully help themselves to lead a full and fulfilling life. We need to stop evaluating one another based on how full or empty we appear to be. I think that the question whether I ’m ‘ half full ’ or ‘ half empty ’ is the wrong question. I am Richard, and I will 148

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always be Richard. Someone who tries to life a full life with the symptoms of dementia. ’33

Fortunately, there has been noticeable change in regards to how dementia is presented on the national level, in the form of self-help groups for people with dementia ( to exchange experiences or to organise joint events in varying combinations ), and even within the various Alzheimer ’s Associations. However, the situation is often still very different on a local level, which is why more and more initiatives focus on supporting people with dementia who live alone as well as those with early-stage dementia. It is crucial here, too, to include and live actual participation. Sadly, all too often, all that is talked about is how certain specialised services can be made available, further greasing the machinery of professional care. ‘ New ’ people with dementia are more willing to buy these services and want to continue to benefit from personalised offers once they live with dementia. They probably are the better customers for various reasons ( purchasing power and behaviour, etc. ). In Germany, there are many different perspectives and standards that become visible when it comes to the challenge of self-representation and social inclusion. Some communities seem unable to even imagine how people with dementia might participate in a conference, let alone speak there. At the same time, other projects, focusing too much on people with early-stage dementia – people who can show what is still possible, ‘ what we can still do ’ –, might risk marginalising people with more severe forms of dementia even more. ( At some point, these people may no longer be able to do what they used to be able to do – and be excluded if functioning and performing well are foregrounded. ) It is not rare to find opinions that state that participation is possible at the beginning but is out of the question later on. Here, the idea of dementia-friendly communities is easily misunderstood as an effort only to adapt infrastructure to the people with early-stage dementia who are still ‘ fit ’, and to continue providing services for them. But do we not also want a community for elderly people with dementia in its more severe stages, even in dying ? What would such a community look like ? We need to include these stages of dementia in our attempts to find new ways of relating to one another and living together. What is important is facing the challenges of participation and finding very concrete forms of support – and 149

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I do not want to imply that this is easy. For example, if we can no longer accompany people to the restaurant or to a football game, maybe we can still visit them at home or in an institution, or help them with the shopping. For a human-friendly community, we must not forget the stages that happen before any diagnosis either. We need to ask to what extent focusing on people with early-stage dementia and thereby creating even more professional services for them34 might lead to a shift in how we engage with dementia in general – and what this might mean for all people living with dementia ? Do these opposing sides – ( almost ) everything is still possible in the early stages vs. ( almost ) nothing is possible anymore in the final stages – capture all of dementia ’s many facets ? The project in Frankfurt-Heddernheim started, among other things, a discussion group for people with memory difficulties. It was structured as a moderated support group for people who felt impaired in their daily lives and who were either wondering whether they might have some form of dementia or had already been diagnosed with early-stage dementia. Two women in particular were very worried that their forgetfulness might be early-stage dementia. They were very happy to have found this group where they could talk about their memory problems without fear, get information and also meet nice people. I do not intend to doubt the importance of this group when I ask : Should a longer-term vision of dementia-friendly communities not make sure that such spaces – where these exchanges and encounters are possible – already exist in everyday life ? Will the fear of dementia, and the way we talk about it, make people see themselves as – or have them declared as – ‘ patients ’ earlier and earlier ? How many people will become depressed or develop other health issues because they fear that they are getting dementia ? These questions do not seem to get the attention they deserve, both in politics and in research. People with dementia and their friends and families are able to and want to shape their environment themselves, as has been shown in the project Inklusion durch aktive Beteiligung ( ‘ Inclusion through active participation ’ ) by the Alzheimer ’s Association in Munich. A group wanted to create a meeting space for people with early-stage dementia. ‘ I need a place that I can go to every day, a place where I can meet people ’, as one participant put it. The group ’s motivation and the offer of a large farm to provide a venue led to an optimistic start. 151

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‘ True, lived civil society ! Due to the size of the project, there were times when energy was low and it was hard to carry on. Where is one supposed to get energy from if there are barely any resources left ? Exactly from this sentence and the experiences of the individual working groups. We saw that we could invigorate all kinds of efforts and energies with the idea of the Begegnungshaus [a venue with the specific purpose of serving as a meeting space]. I can hardly describe how much people engaged with our topics in their free time and supported us. Never before had our work reached people who had that little to do with dementia, including many young people. ’

It was not always easy to fulfil the wishes of many for an open approach, and to include all groups with their respective demands. It was important to make sure that people with dementia were represented and could participate, especially in group conversations. Then, the reality of the economic market and the real estate situation that has been so typical of Munich pushed the participants against some unfortunate facts. The building could not be bought after all, an enormous setback by all accounts. However, after the initial shock had worn off, the project team started to develop a building blocks principle while talking to various sponsors. Where could the different parts of the project – the building blocks – be made reality ? To get a more encompassing picture of the situation and to find new inspiration, project members visited two innovative institutions in Switzerland and the Netherlands. ‘ In Switzerland, we witnessed a completely different approach to people with dementia. The institution we visited tried many innovative ideas, and everyone approached the inhabitants very openly. Everything seemed based on real life, there were no artificial activities or similar offers to keep people busy and entertained. Preserving people ’s autonomy and their personal freedom was valued very highly and given actual meaning. […] What we were impressed by the most in the Netherlands was the diversity of the staff. In the institutions that we know, the staff mostly consists of people with a professional background in the health and social care domains ( social pedagogues, geriatric nurses, … ). There, the staff were a multiprofessional team that included people from very different domains, including ones that didn ’t seem very connected to the traditional care 152

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sphere ( e. g. sports students, home economists, … ). Maybe this makes it easier to achieve inclusion and living together as a society ? It seems reasonable to assume that bringing together different groups of people is easier with a team that consists of people who are from different groups themselves. ’35

Even though – or maybe because – the project failed to get the building, the concept in Munich is very innovative. It is rare to see projects assess demands and include people with dementia, their friends and families, professionals, volunteers, and other members of the community. It is a long-term project, and the joint planning was seen as a first building block of a longer-term plan, and was an important part of the project from the very beginning, which will be followed by others until the meeting space becomes a reality. The project ’s experiences in regards to collaboration, both in terms of a participatory approach as well as communication, resources and structures, can certainly be helpful to others as well. 4.2 Illness and medical care The idea that dementia and everything connected to it is something that belongs first and foremost to the sphere of medicine is only very slowly giving way to other views. All evaluated projects aimed at preventing the social exclusion often faced by people with dementia, which is certainly true for the entire funding programme, too. However, what this exclusion is exactly can vary strongly in the eyes of different people. This is closely related to the We would need to speak of a ‘dementia syndrome’. dominant view of dementia. Do we see dementia as an illness that must be recognised as early as possible so it can be treated with medicine and maybe kept at bay for a little bit longer with the help of therapy ? Or do we see dementia as a phenomenon that is a part of ageing in a society that is itself ageing – a phenomenon with which we all have to learn to live ? The most prominent definitions of dementia are clearly medical ones. They use dementia as an umbrella term for about 50 different chronic or progressive illnesses that lead to deficits in one ’s cognitive, emotional and 153

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social abilities as well as impair one ’s ability to function in social and work situations. These deficits may concern someone ’s ability to remember, think, orient themselves, calculate, learn, speak, reason, and make judgements and decisions. For a medical diagnosis, symptoms must persist for at least six months. Dementia is not one single disorder but rather a cluster of symptoms, which is why we would need to speak of a ‘ dementia syndrome ’ rather than just ‘ dementia ’. However, in everyday life, most people use the term ‘ dementia ’, if only because it is simpler. Often, it is also used synonymously with Alzheimer ’s disease.36 The evaluation showed that people have different ideas and opinions about aspects of medical care, for example in regards to early diagnoses, memory trainings, screening tests or the use of pharmaceuticals. Is dementia an illness for which sooner or later, just like with other illnesses, a vaccine or cure will be found that stops or even prevents the ‘ loss of mental abilities ’ ? If we take this position, we are more likely to believe that diagnosing people as early as possible is important. Early diagnoses can be helpful in individual cases, when for example marriage issues become resolved as issues stemming from dementia and can be viewed as less personal, or when the take-over of businesses can be dealt with in time. Such a diagnosis can also lead to early exclusion from society, however. This is especially true of the nebulous blood tests, already chomping at the bit of early diagnosis, that approximate the odds of dementia ’s starting in this or that decade in one ’s life. The social exclusion, social isolation, withdrawal or even risk of suicide that these diagnoses can bring with them have not yet been taken into account or researched well enough, especially if we consider that there is currently no medication with reliable effects yet a great demand for people who are willing to test new medication. Against this background, aiming to get a diagnosis as early as possible already appears much more controversial than it might have at first. Even the German doctors ’ magazine Ärzteblatt asks the following question in an article on early diagnoses of Alzheimer ’s disease : ‘ To what extent does it make sense to give a diagnosis for a disease that is so negatively connoted, that will only manifest in the future, and for which there are no preventative or curative treatments ? At the same time, we might ask to what extent it is ethical to refuse access to these diagnoses. 154

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Preliminary data on early diagnoses of Alzheimer ’s show […] that there is an increased risk of so-called “ catastrophic reactions ” in patients with psychological comorbidity, particularly depression. We must also note the general risk of “ rational suicide ”, i.e. people who show no symptoms taking their own lives because they cannot bear the thought of what they assume their future will look like. ’37

Additionally, if change were always diagnosed early, we would all be classified as having some form of precursor to dementia, just without any symptoms.38 In the end, this, too, boils down to questions of definition and perspective. The fact that in a nation-wide survey in Germany, a large majority reported being in favour of early diagnoses is something we need to think about. These people thought that there already exist effective treatments or that early diagnoses mean better therapeutic options.39 But where will these developments lead us ? To what extent do defining dementia as an illness and the way we approach dementia in Germany create fears, which do not always help those concerned ? Friends and families often stress that the diagnosis was a relief. At last, they feel they understand why someone behaves strangely, and they take it less personally. People no longer need to question their own life styles, or the life styles of the person with dementia, and can stop asking why – dementia is a disease that can hit anyone. Trying to think differently about dementia and its origins is often seen as an accusation and met with rejection. Additionally, all services and forms of support and even other people ’s empathy often depend on this definition of dementia as an illness. However, it has to be possible to think differently without having to fear that we lose all support or that we are seen as accusing others of having done something wrong. I do not mean to question the value of medical research. But would it not be possible to add an additional perspective, allow alternative explanatory models and take a closer look at them ? Might it not be important to honestly assess what is medically possible and at the same time take a critical stance I ’ll be in the state of no mind. I ’ll be enlightened. towards it in regards to its social and personal consequences ? What else could dementia – or rather Alzheimer ’s, as a diagnosis of exclusion – be ? Are 155

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there ideas that differ from what most people think at the moment ? And what would their social consequences be ? In this section, I present some possibilities and experiences, without trying to be exhaustive, let alone claim a monopoly on the truth. The various forms of dementia are time and again accompanied by keywords such as relief, freedom from social or individual restraints, being able to fulfil desires and emotional needs that were long kept hidden. This is to mean that dementia makes it easier to live in the moment ( although there are often strong ties to the past ). Is this cynical ? Or could we look at dementia the way the following quote does ? ‘ Is enlightenment hereditary ? I sure hope so ! Or are there at least genes that make it easier to become enlightened ? That ’s how it has to be ! Both my parents have reached the state of “ no mind ” that they had longed for so long, even if they had to become quite old to do so. We all wish for this silence of thoughts, where a higher intelligence takes over. […] When you visit me and you find the TV programme in the freezer and the cake in the plant pot, when you notice that I happily hug strangers on the street, when I suddenly start laughing on the train and start talking to the roasted chickens at the supermarket, then you can be sure that I don ’t mind anymore. Even if the person I ’m with feels obligated to give an explanation to the people around me, using words such as “ confused ” or “ disoriented ” or “ not quite right in the head ” or “ Alzheimer ’s ”. I won ’t be the least bit concerned. I ’ll be in the state of no mind. I ’ll be enlightened. You ’ll see it in my smile. Please be so kind and smile back. ’40

Or is it not even necessary to go that far ? Should we not include the aspects that were so positively described here in our approach to dementia and the fear that people have of it ? Without ignoring forms of dementia that affect young people, the main risk factor for dementia is old age. Does that not mean that dementia is at least in part a natural effect of ageing in our society ‘ Alzheimer ’s disease ’ is a construct. in which people get to live for so long ? Almost anybody would develop dementia if they only lived long enough. Could dementia be a sign of old age, 156

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similar to other physical afflictions ? Can we assume that it is a phase of life, difficult yet mundane ? That it is part of our journey to death, which is what all of life is, really ? Could we call dementia, as Reimer Gronemeyer does it, a phenomenon of our current society ? If we all are so flexible, innovative, fastpaced and ephemeral, is it not unavoidable that people who cannot keep up will have problems ? Is that not what is happening to others, too, just that they are not old yet ? Could it be the ‘ invention ’ of a ‘ buzzing medical establishment ’ for the purpose of gaining much needed funding for research on old age ? We are constantly told that dementia causes ever greater costs. At the same time, it also creates larger and larger profits for some. Are business and market economics also factors in the current view of dementia ? Care institutions as safe investments for the future, prevention work as fuel for development in all kinds of areas ?41 Journalist Cornelia Stolze arrives at the following conclusion : ‘ There is a fundamental con behind all the promises. Alzheimer ’s is not a disease like tuberculosis or cancer. ‘ Alzheimer ’s disease ’ is a construct. A useful label that helps access research funds, boost careers, redefine healthy people as patients and create massive markets for drugs and diagnostic procedures. ’42

Could dementia be a long-term consequence of the events of past decades, caused by traumatic experiences during or after the war ? Maybe caused by repressing certain memories, or an effect of educational methods and life structures ? Nightly bombings, eviction and forced displacement, prosecution, rapes and combat – depending on the age group, up to 60 percent of people alive during the war suffered traumas. Psychoanalyst Hartmut Radebold suggests, however, that not only the direct effects of war but also its consequences meant a massive burden for many children, such as the prolonged absence of many fathers, long-term separation from one ’s mother, violence, and traumas among family members.43 Or is dementia a result of diet and consumption ? Some scientist believe that Alzheimer ’s is first and foremost a nutritional metabolic disease and even call it ‘ t ype 3 diabetes ’, a third form of diabetes.44 There are also discussions of the use and indirect absorption of aluminium, for example when using deodorants or cooking.45 Other possible explanations of de157

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mentia include digitalisation, being overwhelmed by media, overuse of media, and outsourcing thinking, orientation and communication to technological tools …46 In a society that becomes more and more ‘ ill ’, is it simple logic to assign age its own illness ? We ‘ suffer from ’ ADHD as children and teenagers, then burn out, bore out and perhaps suffer certain forms of depression as adults, and after that, we get dementia. Is it still possible to even think outside of this logic of disease and care ? The US-American psychiatrist Allen Frances is critical of what he perceives as the labelling of many healthy people as ill.47 One of the consequences of this is that nearly one in five of all US-Americans are taking drugs because of a mental health problem. Similarly, retired professor Klaus Dörner states repeatedly in his publications that if we took seriously every psychiatric study, every single person in Germany would be sufA definition is utterly irrelevant to me. fering from more than two mental illnesses. Does all of this not help ‘ produce ’ consumers for pharmaceuticals ? More and more people suspect that dementia might be a possible consequence of this increase in declaring / making people ill, which would make it a ‘ side effect ’ of the widespread increase in the general use of drugs.48 Of course, we should not forget that in our age of self-optimisation, of ‘ anything is possible ’, of quick solutions and of rejection of weakness, such a development does not necessarily have to come from the medical community, but is being demanded more and more by ‘ patients ’ themselves. When we take a look at explanations for dementia and related phenomena in other cultural or social settings, we see how strongly one ’s perspective on this ‘ part of life ’ can influence how we treat it and the people who have it. How would our attitude and behaviour change if we assumed that dementia is not an illness but a special gift that allows people to talk to their ancestors ?49 Or if we accepted that old age naturally comes with certain limitations ? If we thought that people with dementia are possessed by an evil spirit, or that it is a God-given fate ? Or that they have passed on their mental abilities to their children ?50 If we allow ourselves to think these ideas through, we end up with a range of different ways of treating people with dementia that differ from the purely medical model. 158

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As said before, I did not intend to argue here for which approach is to be considered right or wrong but rather I want to encourage us to try out new perspectives and become aware of how much depends on our own position. Some people do not care about finding an exact definition or cause for dementia at all : ‘ If someone ’s forgetful, they ’re forgetful. A definition is utterly irrelevant to me. What use is a great definition ? I need to learn how to live with it. When it comes down to it, we actually know very little. ’

But let me return to the projects. A few initiatives made it their explicit goal to have people with early-stage dementia come out as such to get access to help as early as possible. ‘ The earlier the diagnosis, the better we can organise help and start therapies. ’ ‘ A medical diagnosis is important to reduce shame and embarrassment. It helps people better understand it all. Dementia is an illness. It is a justification, rather than just someone acting weird. A diagnosis is a first step toward coming out and accepting help. ’

In some cases, people were so afraid of being diagnosed with dementia that they repressed or did not mention symptoms that would have been treatable. Seeing a doctor may be important, though, to find out whether one has only become forgetful because of a lack of nutrients or something similar. However, recommending that people have a check-up is not the same as supporting early diagnoses that are made earlier and earlier. If people did not fear dementia so much, they might be more willing to see their doctor about other health issues. ‘ What I also think is really important for people who are afraid : There are so many who notice that they ’re starting to forget a lot, that they ’re having issues with this or that, but they don ’t dare seeing their doctor about it or even tell anyone. You need to tell these people that there are lots of illnesses that present with pseudo-dementia symptoms. Simply to reduce 159

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these inhibitions, this fear that so many old people live with. That ’s what I hear a lot. ’

Sometimes it seems almost as if the goal is to ‘ locate ’ all people with dementia, as if the only aim of sensitising people is detecting even the earliest stages of dementia and bringing people into professional care and support structures. But those affected might have completely different needs and interests as well as different requirements in their daily lives in all its aspects. According to the evaluation, it soon became clear to the people responsible in some of the initiatives that they wanted to distance themselves from a purely medical view of dementia. ‘ The [hospital] here in [town] is a medical institution with a psychiatric ward, a dementia ward, memory consultation hours, screening every four weeks and determining a patient ’s status – the full range. This is unthinkable for us. They ’re testing pharmaceuticals and think that they ’re going to achieve something with their memory training. They give the impression that there is something there that can be cured. They don ’t accompany and support people with dementia to make their lives comfortable. The focus is always the same : “ There must be something that we can do against dementia. ” ’

In contrast, an approach that focuses more on the social can mean that one ends up opposed to other dementia initiatives that take a purely medical stance on the topic. ‘ I ’m utterly disappointed by [the other local dementia initiative]. They ’ve been around for a few years now. You can ’t reach anyone, their door ’s locked. … They see everything in purely medical terms, no perspective other than the technical, scientific one. That didn ’t help us or the friends and families that we were working with; I couldn ’t take anything away from that. ’

Others experience precisely the promise of a cure and of prevention as motivation for their own efforts. This is when the basis for success is formed by people ’s fears and their understandable clutching at straws. ‘ Memory training – yes, it ’s controversial but that ’s what makes people show up. ’ Although 160

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those who come to these events are probably largely people who do not yet have dementia but fear they might get it. The same happens with other strategies that people suggest for prevention. They might have some effect, even though there is little science to back it up. They include certain foods, ‘ brain food ’ and expensive supplements, ‘ brain jogging ’, and specific physical exercises.51 Ultimately, what is currently suggested for prevention is not all that different from ‘ what your grandmother would tell you if you asked her how to live a healthy life ’52. All these aspects – a healthy diet, physical activity, being socially and mentally fit and engaged with the world – should be ( made ) possible in everyday life anyways, outside of specialised prevention services. What should concern us are cases like the man who pretended to suffer from dementia-related symptoms so he would get drugs that he hoped would prevent him from getting dementia. Or that classifying dementia as an illness and the related craze to professionalise everything mean that people no longer dare to speak to the elderly without knowing about their state of mind or biographical background. Another recurring topic is doctors themselves. Many complain about how hard it is to reach doctors, that they do not attend events even when they are scheduled for Wednesday afternoon, when many doctors have time off. This applies to doctors in both inpatient and outpatient care. It is still difficult to involve physicians in project work or have them participate in events, as the evaluation confirms. ‘ What we weren ’t able to do was involve doctors. They always have a thousand reasons for why they can ’t come. ’ ‘ With doctors, it ’s complicated, at least with those at the hospital. We don ’t reach them with our topic. It ’s because of the structural conditions in the hospitals, which are awful. People with dementia in hospitals only slow everything down. Out of 100 employees, we had at most three doctors at the performance. Everyone knows how difficult it can be to deal with these patients. It ’s barely possible to try and get involved in something different. […] I would ’ve expected more from the specialised departments. How can you be specialised in gerontology and not see this topic ? I can ’t understand that; I didn ’t expect that at all. […] Once, we tried to get some161

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thing going with a specialist conference. But even there, we only got a few doctors. It ’s extremely difficult at the emergency care hospital; the staff are extremely busy and stressed. ’

The latter is true for many other hospitals, which is why dementia in the hospital has become one of the trending topics in discussions on dementia. Again, there is the same tendency here to assume that everything can be With doctors, it ’s complicated, at least with those at the hospital. We don ’t reach them with our topic. solved through trainings, architecture and technology. Only rarely do people take an all-encompassing look at hospitals as systems, the changes in health care, structural conditions, the increasing orientation towards the market, and the transitions between outside and inside, or even life outside of institutions. Instead, people are cast as being individually responsible. In this understanding, it is they who should know how to deal with the ‘ problem ’ after having completed the training.53 But what does it mean when we assume again and again that everything would be better if only we had the doctors with us ? Often, people complain about the lack of expertise needed for a professional diagnosis – as if that alone would change everything for the better. The idea of raising awareness among other patients as well as the potential role of doctors as multipliers that can bring the topic – and different perspectives on it – to various institutions is becoming more and more popular. However, these are not obvious – or paid – areas of work for doctors. The project Nicht ohne meine Nachbarn – Menschen mit Demenz in der Kommune ( ‘ Not without my neighbours – People with dementia in the community ’ ) in Radebeul included these additional areas with their aim of increasing doctors ’ participation. Thanks to stamina and stubbornness, the project was able to fulfil that goal, at least in part. Additionally, activities and services are going to be more strongly targeted at staff members ( social workers, secretaries, etc. ) : ‘  Regarding co-operation between family physicians and neurologists  : Doctors were continually informed about events, services and other ac162

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tivities in the family centre. After a ramp-up of about six months, doctors started telling their patients or their patients ’ friends and families about these events, services and activities, sometimes even handing out flyers. ’

4.3 Between exchange of experiences and competition What is the state of dementia-related work in regards to the exchange of experiences and competition ? This is an important question, especially as Aktion Demenz does not want to re-invent the wheel again and again. There are countless examples of positive, enriching exchange, but there are certainly also cases in which people simply copy an idea without giving due credit. In We were seen as competition. addition to other structural conditions that hinder exchange ( such as distances in space or differences in focus, work overload that makes it impossible to look for inspiration elsewhere, or restrictive funding criteria and the resulting pressure for everything to be new and innovative ), initiatives, particularly in the domain of social work, often do not allow their competitors access to their work and experiences, let alone offer to co-operate. This may be related to wide-spread financial cuts. Projects tend to be somewhat tight-lipped when it comes to funding, support by local authorities, clients, and the attention of volunteers, people with dementia, and their friends and families. Many of the funded projects tried to do something that was comparatively new or tried to establish themselves ‘ in the domain of social care work for the elderly, where previously, large welfare organisations, private providers, churches and local authorities had shared among themselves ’. Sometimes, projects also compete in terms of how their different activities are received. For example, one project contacted people with dementia through the local care home, where staff did not like the initiative ’s new activities at first : ‘ We had to organise everything ourselves. We had to get there, get back, pay to enter. We didn ’t get any help. Everything we tried doing was blocked. “ These people are here with us and they pay for us. You always

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do the fun things and we get stuck with all the hard work. ” That was a form of competition, too. ’

Depending on the specific organisation, issues may arise even when simply trying to establish a working group : ‘ You have to watch out – I just hope they don ’t offer the same things as we do. Of course, it ’s a fact that our finances depend on the services we provide. ’

The next example shows another variation of competition that is common in many situations : competition between dementia professionals on one side, and people with dementia and their friends and families on the other. ‘  The meetings had people with dementia, friends and families, care workers. Then I didn ’t attend a few sessions and when I came back, the only people left were five professionals. I said, “ What did you do ? Where have all the families gone ? ” Professionals tend to think that they know everything, so others have to dance to their tune. So we said we ’d continue with the meetings but that what was most important was that volunteers and friends and families would come. But then the professionals stopped coming. We ’re a strong team of volunteers, including people who used to work as nurses or geriatric nurses. The professionals would say, “ We need to make a folder. ” And a family member would reply, “ Why a folder ? All I need is one page, not more. ” That made the professionals jolt. We were seen as competition. In the end, we managed to get them back, but there are many sensitivities to watch out for. ’

The volunteers quoted here did not see themselves as competitors. They see a clear difference between their work on people ’s abilities, which is almost never paid work, and the professional ’s work on people ’s deficits, which is paid work. However, if this is developed too far, volunteer groups may become experts themselves, which means that others ( think that they ) do not have to engage with the topic at all. This is what happened in one of the projects :

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‘ People here think, it ’s great that [the project] does so much for dementia. Let ’s keep it there. Wherever you go, nothing happens, everyone ’s content, everything ’s stored away neatly. I didn ’t want to turn into a knowhow centre – I wanted to get the whole town to do something. ’

What works well in one place does not necessarily work as well in others. In a best-case scenario, ideas and experiences from elsewhere are taken into account when planning new, locally adapted activities. The following quote demonstrates this : ‘ The neighbouring town copied everything bit by bit. “ We do everything the way you would ” – even the flyer was copied word for word. But if I ’m not in it with my heart, and I just copy what others do, the project can ’t work, not in the long run. These things need to grow from the grassroots. ’

To achieve this, it seems helpful to talk openly about the more difficult aspects and fears that might come up. Pretending to network on the surface and stressing the importance of co-operation is insufficient if this co-operation is then put into practice only in the form of monitoring groups or on paper instead of actual, meaningful work being done together, which might include working through disagreements. In some cases, it can help if the local authorities, which are seen as more neutral, come into play. They can then serve as a ‘ roof ’ under which joint efforts and activities for a dementia-friendly community can happen. This helps alleviate and prevent bad blood, allowing co-operation to take root and partners to react more openly compared to situations in which they might feel obliged to critically examine an institution ’s religious background or potential client base. It is no surprise that town councils and other authorities have a different standing in this than smaller initiatives. This can be both an advantage and a disadvantage, however.54 4.4 Dementia concerns us all ! Aktion Demenz wants to establish dementia as a topic that concerns everyone, and aims at diversity both in our members and in the people among whom we seek to raise awareness. Is this only a long-term goal or might it already be 165

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reality, at least in part ? Put differently : How can we reach and involve actors, multipliers and other people from civil society in addition to those who are affected by dementia personally or professionally ? How can we reach people who have not engaged with the topic yet ( police, retail, authorities, the general public, neighbours, people who want to get involved in the community, and others ) ? What approaches, experiences and possibilities can we draw on to enlarge the circle of those who work towards a dementia-friendly community, to convince multipliers, to ensure exchange and co-operation among various people, professions, generations, and with people who are directly affected ? We also need to ask the following question, which was formulated at a workshop that took place at the beginning of Aktion Demenz : ‘ Who has to be the one calling so that people will follow ? ’ Against this background, the evaluation was also concerned with the following question : To what extent could people from the community, includI didn ’t want to turn into a know-how centre – I wanted to get the whole town to do something. ing people from other professional domains, be motivated to act for people with dementia ? Many projects reported that in order for a project to be successful, people in high positions, e. g. the manager of a business or the head of a local police department needed to be open to the topic. In one case, working with police force leadership led to trainings that took place within police officers ’ working hours : ‘ My superior is really behind this, which is essential. And we benefit from it because training our personnel means that we can get things done more efficiently. When I have people with dementia at the station, I need to be able to ask them questions. If I get stuck there, it holds everything else up, too. ’

During such training sessions, the project In dem Netz ( ‘ In the net ’ ) in Ingolstadt found that multipliers are not keen on engaging with dementia in their spare time : ‘ This comprehensive participation was only possible during working hours, though, which again was only possible because we had presented our idea 166

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to the works council. Only few thought that voluntarily attending lectures was necessary or helpful. So it was good that the training sessions were seen as part of the job. Only afterwards did people realise that they had also gained a lot from the training that was relevant to their own lives. This is why it ’s important, though difficult, to convince the people in charge that such training needs to be offered as part of the job and not just as something to do in your spare time. ’

In some cases, resistance was stronger and harder to overcome : ‘ There was quite some resistance in the run-up period. We had to overcome statements such as, “ My officers learn all of that on the street. ” ’

It is certainly true that experience is more important than training. That is why it makes sense to have training in the form of a ‘ first aid course for dementia ’ in which only the basics are discussed. What people need to know is that there are different approaches to dementia, and which points of contact they can turn to. It can also be important to then initiate joint, local efforts and reflection, and work towards long-term changes. This is why we need to look critically at the trend towards professionalisation amongst all groups that are connected to people with dementia in one way or another. This does not negate the importance of teaching the basics, however, or of trying out different things, as the following story shows : ‘ The moment I realised I wanted to do something was at a Christmas party for the elderly. There was an old lady who had been going to these parties for 20 years. There were about 40 or 50 elderly women at the party, and there was a programme. And this one old lady kept thinking that she had to go home. And her friend who was with her was over 90 years old and completely overwhelmed with the situation. It was so tragic, because she kept saying, “ Sit down, we ’re not going home yet. ” And this woman with dementia was standing there and was all nervous and fidgety. The others knew that kind of thing already from their weekly meetings, and they moaned and groaned and complained. And then she ran along the walls of the room and sat down again, and everyone was so incredibly annoyed by her. After the party was over, I talked to her and put her feelings into 167

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words. I said, “ You feel you ’re being needed at home. You ’re all nervous. ” She was so relieved, and she felt understood. And I thought, this is horrible, this group of old people are left to deal with this problem all by themselves every week. So what I wanted was, I wanted to train the people who organise such meetings, even as volunteers, so they can get a bit more skilled at that, and also pass it on to others. ’

But what happened to the basic human ability to treat kindly those who are obviously different or ‘ problematic ’ ? This question was also asked by the We ’re too cerebral. evaluation group of the project in Cologne. Do we really need training for each and every person before they can do that ? Or do these training programmes contribute to widening the very gap they are trying to fill ? If small, simple gestures of human kindness are seen as helpful and relieving, is the current wave of training programmes aimed primarily at harmonisation, at reducing fears ?55 The following account illustrates these questions. ‘ Professionals lack sensitivity, too, you know. Doctors and care workers, too. We ’re too cerebral, completely focused on the rational. You don ’t need to have done a validation, just follow some basic rules, talk about feelings, don ’t start arguing. And they ’re ignored, that happens all the time. ’

Ultimately, what matters is that we make time time to take self-critical moments of reflection in our project work. Are ‘ they ’re not good for anything at all ’ and ‘ they ’re still able ( and should be ! ) to do everything without any issues ’ really the only options ? Is it not likely that the reality – and the reality of what people really need – lies somewhere in between ? Again, we are faced with the same old dilemma : Is there a danger that in order to escape exclusion and stigmatisation, we re-orient the topic of dementia in a way that confines us to an approach that does not take the people ­living with dementia themselves into account as much as it should – care and harmony at any cost ? What possibilities for thinking differently do we lose with this ? What challenges that we avoid might have inspired us to take on others, too ? 168

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‘ We need to get rid of this “ wellness image ”. The reality is that there are burdens and not everything is easy. We take these people in, and then we coddle them. In these circles, people like sugar-coating everything and say no, we don ’t have any problems. Yes, we do have problems. Yes, this topic does raise questions for which we don ’t yet have any conclusive answers. ’

The evaluation shows that raising awareness, and providing education and training on dementia also creates a new order that makes organising and acting the sole responsibility of those who help. Efforts to raise awareness seem to be focused on how to behave and react ‘ correctly ’. In contrast, Charlotte Jurk asks whether it might not sometimes be better to do nothing and wait, watch silently, and listen passively. But who manages to do this, who lets this happen ? I keep noticing this at events where people with early-stage dementia take part in conversations. When they make a small pause, just like any other speaker – no matter Who has to be the one calling so that people will follow ? whether with or without dementia –, I can feel the awkwardness and cringing in the audience, the fear that the pause might become too long and someone will have to fill it. This idea that if only we knew how to react properly in every situation, there would not be any issues – what does it lead to ? How does it influence individual encounters ? What alternative ways of approaching each other and experiencing direct contact does it prevent ? ‘ Already the first time I went there, just to talk with them, I was already corrected. I was told I was talking too much, that I shouldn ’t ask so much, that not everything needs to be said out loud. It was like, there are certain rules here, this is our domain. I had told them before that painting on a piece of paper is, to an extent, one ’s own individual space, and that, as an artist, I couldn ’t imagine watching someone in this process. To have someone look over your shoulder. To explain what kind of situation this creates. I said, we become guests then, because they ’re in their space and when we watch them, we behave like guests. It looked like they had accepted that. […] But right until the end, I couldn ’t prevent them from painting into 169

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the paintings. From telling people to paint more, use brighter colours. Or maybe add a little heart in this corner, there ’s still room there. In other words : occupational therapy. […] They mean well, which is why I ’m a bit conflicted about this, but try telling someone to not do something. That ’s basically the opposite of the very essence of volunteering. ’

Is there a sort of overeagerness in caring for people with dementia, and does that help anyone ? Should training programmes expand more on ‘ leaving it as it is ’, even if this can lead to confusing behaviour ? Is constant activity an attempt to keep up ‘ normality ’, though adapted slightly to each situation ? Is this still ‘ normal ’ then ? We need to get rid of this ‘ wellness image ’. In her evaluation, Jurk, too, comes to the conclusion that the actual objective is accepting dementia and respecting and supporting people with dementia, but that efforts often end up as a form of overbearing support for people with dementia. Care workers, personal assistants, nurses, and friends and families want to prevent ‘ their ’ person from becoming a troublemaker, and often receive training and preparation accordingly. ‘ Friends and family members often act like overprotective mothers : “ Only I know what ’s best for my loved ones. ” ’ ‘ T he [event] was a success, the atmosphere was warm, everything was great. And then there was a woman running around. She was one of the carers, a volunteer, and she kept fidgeting with this wheelchair and fixing that problem with a walking frame. She made everyone nervous. We looked at each other and asked ourselves, what ’s that about ? The so-called normal one was the one that stood out : overprotective, clucky. These overprotective mothers, they ’re part of volunteering, and they think they need to jump up and do something because, I don ’ t know, this person is wearing their skirt wrong or someone has dropped a tissue or whatever. […] One visitor asked in the feedback whether it wouldn ’ t be a good idea to drop all the “ good intentions ” for a change. We were happy to hear that. ’ 170

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‘ How do they cope with being mollycoddled all day ? ’

I do not mean to be accusatory, but it is certainly important to take such criticism seriously. The term ‘ overprotective mother ’ features in several projects. This points to the high number of women working and volunteering in the domain of dementia. ( It is not uncommon to have ratios in the range of 23 women to 2 men, as was reported by one programme for training volunteers. ) It also refers to the recent phenomenon of ‘ helicopter parenting ’, which is an expression used for parents that never let their children out of sight, hovering above them like a helicopter, ready to interfere upon first sight of the slightest complication, which is not always in the best interest of their children. This kind of overprotectiveness also shows itself in situations that involve caring for people with dementia directly : ‘ The volunteers were asked whether they would like to join and try themselves, but they declined out of fear of not doing things “ right ”. Which meant that they could use all their energy to watch the others and comment on what they were doing. You know, “ Are you thirsty, do you want something to drink ? ” They ’re not used to the idea that people might be fine without them. ’

The danger of dehydration is one example of a problem that features in training, but, as should be obvious, is not usually a present issue that needs to be constantly attended to. People might find it easier to relax about this issue if they were reminded of all the nutritional recommendations for adults and how commonly these are ignored. ( This increased concern for safety is probably even more pertinent in other aspects and situations of living with dementia. One does not need to take unnecessary risks, but a completely safe – or secured – life is probably not a very good idea at any age. If we agree with the disability movement ’s demand for the right of children with disabilities to a broken arm just like other children, should we not apply this idea to people with dementia as well ? Even if broken bones do not heal as quickly in old age ? ) The example above is also interesting because by being too afraid of not getting things right, people missed out on their chance to gain new experiences and meet others as equals. ( The idea of meeting people with demen171

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tia as equals has a long history but is rarely actually lived even when it is invoked. ) The volunteers did not act together with people with dementia, trying something new with everyone on the same level, but instead preferred the care situation, even though there was not really anything to care for in that moment. The volunteers might have had the feeling that they were not needed, despite wanting to help so badly. Once these fears have been overcome, living and being together becomes the focus. Let us move on to some experiences and realisations from planning and organising training. In some places, training programmes were offered for civil servants or retail workers. Training for retail workers is very hard to implement, though, and often fails because people have already attended many other training sessions, or because they would need to attend them in their spare time. One project member reports : ‘ It was difficult for me to keep the participants of my course for public buildings engaged. There were three evening sessions, which we had kept short intentionally. They were in the evening, after work. The first evening, there were quite a lot of people. The second one was okay. And the third evening, there were only two very motivated women who worked in a care home, who weren ’t really our target group. I thought that was a real pity. Smaller shops seemed more interested than bigger ones. In the town centre, we invited people in person. Everyone seemed very interested, but most people didn ’t end up actually coming. Everyone is so busy, they ’re doing more than enough already. They think, do I really need to sit there for another two hours of my time ? ’

Even when a project could not fully implement its plans, helpful contacts with new people sometimes emerged. For example, there was a shop owner who joined the initiative. Dementia is only slowly starting to be taken into account by shops, even those who market to different age groups : ‘ We tried to organise training programmes with other stores, but the problem was that the other stores wanted their employees to attend the training in their spare time. [Store 1] accepted it as work time. [Store 2] markets itself as a “ store for all generations ” because the aisles are wide enough for wheelchair users. I asked the manager, “ What do you do for old people 172

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who are forgetful ? ” He looked at me and said, “ I ’ve never thought about it. ” There is almost no awareness in the retail sector. ’

It can be even more difficult on the level of business associations : ‘ A representative from city marketing said that it ’s difficult because the members of the advertising association don ’t want to learn about it. It ’s not dementia that is the problem, it ’s just that other topics are more important to them. When you talk to people individually, they are open in principle. But it ’s the advertising association as a whole that is the problem. The members say, “ We have other issues to deal with that are more important. ” ’

This latter argument is probably relevant for many multipliers, but it is short-sighted. I was also concerned by the realisation that we had at an internal workshop that companies in the service sector are more difficult to reach. This is because you cannot find and approach an owner if you are dealing with a national chain, which is a symptom of the adaptation and centralisation that is happening in retail. Nevertheless, the activities by Aktion Demenz and others have made a difference in retail and in the local and national civil services. At the beginning, people said, ‘ we don ’t have anyone with dementia here ’, or, ‘ we don ’t concern ourselves with dementia ’, or even, ‘ we don ’t engage in social responsibility in general ’. However, the market value of elderly people has increased, and this includes people with dementia. Now there are training programmes for the service sector – it sometimes seems that they are ubiquitous. They are often run by volunteers, for free, and later presented as additional skills by the respective companies, meant to enlarge the customer base. What is taught at these sessions is often far removed from the ideas of a dementia-friendly community, however, as the focus lies on supporting professional care structures and ‘ locating ’ people with dementia. ‘ [Our project ’s] working group on dementia will keep trying to reach the estimated 700 people who are still kept hidden in our town. ’ Often, the difference lies only in interpretation, which is one of the challenges of facing the idea of a dementia-friendly community. What does it mean if fire departments, hospital staff, bus drivers, retail workers, clubs, the local authorities, professionals and ordinary people come together and 173

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form networks only to find people with dementia as fast as possible in the rare case that they might escape the custody of their care authorities ? Of course we need to make sure that people with dementia do not get hurt or even killed. Safety always comes first in an emergency situation. But working together should go beyond this and make sure that people with dementia can walk freely and participate in community life for as long as possible, either on their own or with the support of others. So that they do not have to hide in shame or as a reaction to rejection as many currently do. This is also something for which we could use networks such as the one described above, and similar activities. It is true that supply and demand for goods and services are centre stage here, and that the market is regulated by the buyers ’ needs and the sellers ’ desire for profit maximisation, especially in local economies. With the growing number of people with dementia comes a call for their ( economic ) participation, and enterprises are expected to develop needs-oriented products and services, and to make sure that shops, goods, spaces and services are accessible. But that is not enough. What is necessary is social action by local, national and global companies that transcends these understandings, for example in the form of organising or funding projects, supporting measures aimed at increasing the compatibility of regular work and care work, and raising awareness in general. Companies should also work towards the idea of a ‘ caring community ’ in which everyone can have a good life.56 According to the projects themselves, local clubs and associations were ­often more interested and more likely to attend events and ask questions. The project Vergesslich ? – Halb so schlimm ! ( ‘ Forgetful ? – It ’s not that bad ! ’ ) by Gesundheit für alle ( ‘ Health for everyone ’ ) in Zwickau aims at preventing the social isolation of people with dementia. It supports people with early-stage dementia by facilitating neighbourly help, hosting interesting events, and fostering shared interests : ‘ We were in contact with the local Schützenverein57. They were happy that they could talk to us because they had a problem with someone in their group who was becoming more and more affected by dementia but was still using live ammunition. They did everything right intuitively. The man ’s still in their club, but he doesn ’t use weapons anymore. It ’s great. ’

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In other places, too, new social actors were found. As mentioned above, there are more women than men active in the domain of dementia, among professionals and care workers, volunteers, and finally also among those who live with dementia. There are a variety of very different reasons for this, which I cannot expand on here. However, a quote from the project Kultur-Begleitung ( ‘ Culture companions ’ ) in Leutkirch illustrates the situation well. Their training programmes for associations and clubs were attended by people from various choirs, sports groups and women ’s groups. But the organisers noticed with regret that ‘ traditionally male organisations ’ such as the fire department, the marching band and the Schützenverein were missing. They explained this by reference to the fact that care work – with which dementia is immediately associated – is still seen primarily as women ’s work. Additionally, associations that consist mostly of older people find it hard to approach the topic : ‘ But it also became clear that seniors in clubs are particularly unwilling to engage with the topic, first and foremost because they experience it as a burden or even as “ shattering ”. We need to help people become ready to deal with this issue by talking to them individually. ’ ‘ There was one group of people that did not want to be confronted with the topic. Interestingly, these were mostly elderly members of the community. ’ ‘ Some said, “ Well, we don ’t have any people with dementia in our church community. ” Or they went in the other direction and said, “ Yes, there are people with dementia in our community, but they live in [institution 1] or [institution 2], and we as a community don ’t really have anything to do with them. ” ’

The project Dorfplatz – Leben mit Demenz auf dem Lande ( ‘ Village square – Living with dementia in the countryside ’ ) in Tarmstedt listed possible reasons for why support for the cause tends to be limited. Clubs and associations make up and sustain basically all of the cultural life in the region ’s rural areas, and active club members were often already very busy and declined to take on new responsibilities. Additionally, they struggle with the 175

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fact that fewer and fewer people are willing to take an active part. During the project ’s running time, one town had to announce the dissolution of the local fire department. In some cases, people rejected the topic itself or had themselves had recent experience with caring for people with dementia, and needed some distance from the topic. The project Integration und Begleitung von Menschen mit Demenz ( ‘ Integration and support for people with dementia ’ ) in Erfurt by the Schutzbund der Senioren und Vorruheständler Thüringen ( ‘ Seniors ’ and early retirees ’ association Thuringia ’ ) tried to encourage practical, tangible neighbourly support. In some towns, club members, mostly elderly people, questioned the extent to which people could provide such support if the same people were already struggling with certain limitations. Is it possible to volunteer at any age ? On an individual basis, we would probably all agree, but we might think differently when we ask whether this is a necessity or even duty. Funded surveys on volunteering among people older than 85 show that there is great interest in the topic. Sometimes, the higher number of older people among volunteers can also lead to other activities, as happened in the district of Garmisch-Partenkirchen. This district has a comparatively large proportion of people over 65 ( who also tend to live alone ), which poses a particular challenge in its mostly rural context. This situation was the reason why institutions and social actors brought their expertise to the Forum Demenz – demenzfreundlicher Landkreis Garmisch-Partenkirchen ( ‘ Forum dementia – Dementia-friendly district Garmisch-Partenkirchen ’ ) by the Catholic Kreisbildungswerk, an institution for education and training. Through networking and co-operation, these actors improved services in all areas of life as well as raised awareness among the general public. People from all age groups and professions need positive experiences to let go of their fears, which is another reason for ‘ simply ’ trying things out : ‘ The cultural institutions, at first, they were undecided. The head of [an institution] was anxious beforehand because there were also the press and radio there. But afterwards she was delighted and said she ’d love to have us back. And we did come back twice. It has become a non-issue now – if we call, we can come at any time. […] She usually works with children, and talked directly to the older people, “ What do you see in this painting ? ” We had one man who had never been to the [cultural institution], so you could say it wasn ’t only “ well-educated ” people. ’ 177

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In her evaluation, Charlotte Jurk arrives at the conclusion that involving people from other professional domains, associations and clubs, local authorities and police is cumbersome, depends on the individual, and progresses slowly in the hectic world of high turnover and fitness fads. Additionally, it is not always possible for projects to know to what extent their activities have had an effect : ‘ I do think that there has been a sort of opening up, but to what extent that ’s going to have an effect on what they do in their clubs, I can ’t say. ’

As discussed above, this has changed in recent years and across projects. It is all the more unfortunate when the contacts that people have worked hard to establish are lost : ‘ The reception was very mixed, some were interested and willing to learn more, some were reserved or even rejecting. We organised informative events with those who were interested, which were met with different levels of interest in the various target groups. We had a great connection with the manager of a large convenience store, but having to co-ordinate with the works council meant that planning took considerably more time. Then, in summer, the manager was suddenly dismissed, which meant that we lost our contact with the store completely. ’

Sometimes, plans have to be cancelled for mundane reasons such as the one above, or time schedules that do not match up, appointments that cannot be postponed, job changes, lack of staff – or simply because in our time, people are confronted with too many topics at once already. The latter can mean that people feel dementia to be yet another aspect they need to take into account or deal with in some way. In these situations, it is important to stress that dementia can touch or feature in a wide range of different areas rather than being treated as its own topic. If people considered dementia more consciously in existing projects, co-operations and efforts, this would already be a success. An approach such as the one of the project Demenzfreundliche Kommune Schwerin ( ‘ Dementia-friendly community Schwerin ’ ), organised by the city itself, can be advantageous, too. Inspired by the growing number of locals 178

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with dementia who live alone, training programmes were organised with sessions aimed at a network of different target groups. When a given group agreed to training, the course was adapted to the needs of the group – location, time, duration. This meant that scheduling difficulties could be avoided from the very start. Similarly, the project Verstehen und verstanden werden – Miteinander Leben mit Demenz ( ‘ Understanding and being understood – Living with dementia together ’ ) by the city of Hilden set dates and locations for their training sessions with each of their participating groups individually. Most sessions were held in the respective work environments, some were held in public buildings or venues provided by project partners. To reach individuals and very small groups of interested companies, the project also organised occasional sesDementia can touch or feature in a wide range of different areas rather than being treated as its own topic. sions with mixed groups of people from various professional backgrounds. The survey that was administered to participants showed that they particularly appreciated concrete pieces of advice on how to interact with people with dementia. 85 % of participants said that they had benefitted personally from the training, in regards to their interaction with people with dementia as well as communication in general – and also in regards to their interactions with difficult customers. Despite the fact that the training sessions were rather short, people ’s approach to dementia and perhaps to their customers who live with it changed. Sometimes, we only need to change the way we think a small bit to allow encounters to play out on an entirely different level. Together with a graphic designer, the project ’s working group developed a logo – Miteinander im Leben ( ‘ Together in life ’ ) – so that companies and associations could show that they engaged with the topic and that their staff were trained accordingly. The logo shows jigsaw pieces aligned in a circle to symbolise being together as a society. The piece in the middle is different : It ‘ doesn ’t quite fit ’ anymore, but it is in the middle and part of the whole. The logo ’s design is intentionally positive and friendly so that companies are willing to use and present it.

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While it was often said that it is easier to sensitise people who have experience with dementia in their personal lives, such experience can also have an inhibiting effect, as a few cases showed : ‘ One person always found herself reminded of her relative who was suffering from severe dementia, and she couldn ’t stop thinking about him when thinking of the project. Another person, a choir leader, tried to keep her husband included in her choir group. The husband ’s behaviour was a great challenge for everyone around him, and she wasn ’t able reconcile the demand for quality in her choir with the idea of a choir including someone with dementia as a social function. We weren ’t able to solve this conflict in the project. ’

In a different choir, when one choir member left the group because of her mother ’s dementia, she was told to bring her mother with her to the rehearsals. The mother sang along with the songs she knew well, and it was no big deal if not every note was spot-on during the rehearsals. When physical problems prevented her from participating, choir members took turns visiting the two women at home to sing with them. These examples show that it is important to consider local and individual contexts in any situation. Everyone benefits from thinking outside the box to make community participation possible. Engaging with dementia in various areas of public life can have positive effects : ‘ We got various feedback from friends and family members who could confirm the positive effect our trainings had had on bus drivers in regards to how they treated passengers with dementia. ’ ‘ Our chief of police is in [town] with 12 officers, and we trained them all, and they were ordered to attend during their work hours. In the [town], ten people registered for such training, and 22 people ended up coming. The police agreed to let us help so that they don ’t have to send everyone to the psychiatric ward. We have an agreement now that they call one of us who will then go there and take care of whomever it is they ’ve picked up. The training had just ended when someone called to report a confused person in a store. And the police could then say, there ’s no reason to freak 180

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out, we don ’t need to write a report for every little thing. That was thanks to the training. ’

According to the evaluation, the fact that the police no longer take anyone who behaves strangely at a store to their station to send them to the psychiatric ward, and instead call someone to help has been an important change with significant effects on everyday life. However, this also shows that training alone does not make such a big difference for the people affected and only co-operation brings truly significant improvement. It is also an important change if a travelling shop in rural areas develops an understanding of people with ‘ odd ’ buying habits or communicative behaviours. Especially today, the shop drivers are one of the few regular contacts that people who are old, confused and forgetful still have. They know, or could know, a lot about the living situation of people or couples who live alone, and not just in villages. For this reason, the project Zeitlos – Demenz-Offensive Eifel ( ‘ Timeless  –  Dementia offensive Eifel ’ ) by the DRK-Bildungswerk in Eifel, an institution of the German Red Cross for adult education and training, targeted training programmes at shop drivers. ‘ “ What do I do when someone buys their 20th box of washing powder in only a few days ? ” It ’s similar to selling alcohol. You want to make a high profit, sell as much as possible, but you have a problem with the alcoholic. Until you realise that it ’s better in the long term to not sell 5 kg of flour to the same person in one week. The manager attended the training, and after that he got a call from someone who complained that her relative with dementia had bought too much bread that had all gone bad. And the manager could tell her, okay, we ’re going to make a list of things that he can buy ( so that he can still fulfil his need for shopping and human interaction ) and see what makes sense, so that his family doesn ’t feel that he ’s being taken advantage of. Now they know that there ’s someone who checks in once a week. ’

Despite such positive effects, we must not forget that knowledge is always relative. There is a lot that is not known about so-called Alzheimer ’s disease, and there are questions that cannot easily be answered with a simple yes or no. This is true both for dementia and individual people. As one project puts 181

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it quite aptly : ‘ Dementia is colourful. It is as individual as the person who lives with it. It remains mysterious. We definitely cannot say what it ’s going to look like. ’ Projects both in Germany and in other countries are trying to combine existing services with new perspectives and topics. Let us have a look at Belgium, where mail carriers check up on all people over a certain age to see whether they need help. A questionnaire is used to determine where and what kind of help is needed. The German mail service Deutsche Post started a similar service with its project Post Persönlich ( ‘ Mail  –  Personal ’ ). In the central Ruhr region, people can pay for their mail carriers to take some time during their tour to talk to them. The service is intended for people who are still able to live on their own but lack social contacts, or whose friends or family members worry about them. The service seeks to provide ‘ the reassuring feeling that there is someone they know who will check up on them every day to make sure they are okay ’. These short visits can take place Tuesday to Friday, or on Saturday as well. The service is only a pilot project and costs about €40 per month, depending on which version you choose. If someone is not feeling well and needs help, the mail carrier notifies a care service with whom they co-operate. However, Deutsche Post does not plan to use any additional staff or funds for the project, and it is doubtful that the service can actually be properly implemented in the allotted time. According to the Südwestrundfunk broadcasting service, Deutsche Post is trying to kill two birds with one stone here. Deutsche Post is suffering from a reduction in mail volume and seeks to compensate with new services. At the same time, it creates new occupational opportunities for its mail carriers – in a booming market. After all, people are getting older and older, and there is considerable demand for new support and care services. Care services are certainly justified in their criticism of mail staff for their lack of medical expertise, their limited time, and their likelihood to misjudge a person ’s actual state of wellbeing. ‘ How are you doing ? ’ – According to the unions, no more than one to two minutes are scheduled for dealing with this question. Thinking about the economic ‘ utility ’ of customers leaves a bitter taste in one ’s mouth. This is true for all these services. Will even quick chats over the garden wall become yet another commercial service that we have to pay for ? Who is going pay for all these services, and who will provide them ? Would it 182

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not be better and more humane to focus on neighbourliness ( maybe in new shapes ) and on keeping our ears and eyes open for one another ? The project in Belgium also seems like a well-meaning idea on the surface, as a way of assessing the need for support in a time where more and more people live alone. But where do considerations of self-determination and social control come in, of people who want to live ‘ differently ’, or of the fact that we should all care for one another without paying for or providing services ? Will people still check in on their neighbours if they can tell themselves that the mail carrier will ‘ take care of it ’ anyways ? How much individual responsibility and mutual help do we lose out on because of services such as these ? This question can be asked regarding all specialised services for people with dementia, those by professionals and those supported by volunteers. If there are professionals or trained volunteers that will take care of visits, shopping, eating, physical activity and cultural events, people will ask themselves – why should I do anything anymore ? And then there is always the insecurity : Am I even able to do anything without proper training ? Has this development eroded human connections in everyday life only to fill the gap created with more and more services ? What kind of dependencies does this create ? Communities that are on their way to becoming dementia-friendly will have to engage with these questions more and more in the years to come. This brings us to the project Für eine Zukunft mit Demenz ( ‘ For a future with dementia ’ ) by the Caritasverband Main-Taunus, a Catholic welfare organisation, and the city of Hochheim on Main. The project members saw that professionals and officials from many different domains were already quite aware of the issue. The project did not need to try hard to convince companies, clubs and committees of the importance of dementia, as they had apparently had many customers and clients with dementia already. Many had felt helpless in certain situations and were eager to work together. There was a widespread willingness to help. The involved companies seemed to have no problem with giving their employees leave to attend the classes, and participants appeared to not mind spending four hours after their work day had already ended on a topic that was still foreign to them. Training was scheduled so that it would not take up too much of the employees ’ time, and dates as well as the length of individual sessions were flexible. In addition to professional input, enough time was allocated for discussing concrete situations from the everyday routines of the work183

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place, and participants were encouraged to find their own strategies. What stood out for the organisers were the simple yet effective approaches that proved helpful in compensating for age-related handicaps in some companies or clubs. One bank provided reading glasses for elderly customers with bad sight so they could more easily fill out forms. A carnival society dealt with the disorientation of one of its members by having him march in the middle of their group during a carnival parade. That way, he was safely surrounded by others and could not get lost. The project did not have to introduce the idea that individual restrictions can be balanced out by adapting one ’s environment. Most people agreed that dementia was an important topic. Many had simply not previously considered thinking about how it affected their own private and professional lives. This example shows that people do not necessarily need special training to come up with and implement helpful ideas. But it also shows that there is still a lot of work to be done if we want more than better ways of ‘ handling ’ people with dementia and better service options. Training cannot be the only means to achieve this goal. Some seem to think that if all social actors were trained appropriately, social conditions would change automatically, without taking into account social structures and their interdependencies as well as societal developments. It is also important to note that participants may see training that tries to foster community engagement, especially free sessions, as a way to improve their chances on the job market. Multipliers and social actors that are not directly affected by dementia themselves can be approached and included in other ways, too. Sometimes, it is the little things that are the most valuable. Consider, for example, the project Wir sind Nachbarn – wir machen mit ! ( ‘ We are neighbours – count us in ! ’ ) by the Pflegestützpunkt Kreis Segeberg ( ‘ Care support centre Segeberg ’ ) in Kaltenkirchen. A local artist donated a large-scale painting for public relations work that later operated as an easily recognisable symbol. A different project was supported by service providers by displaying flyers and hanging up posters. Some multipliers were ‘ found ’ indirectly. In one case, an informative event led to an inquiry by the principal of a school who asked whether his students could do a ‘ taster ’ internship at the project and co-operating institutions. Sometimes, projects that aim to reach a certain group of people can, for a variety of reasons, not be implemented as planned. This requires flexibility, 184

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as in the case of the project EULE in Scheibenberg. The project ’s focus was on employees in public service institutions, which could not be reached in sufficient numbers. Those who were interested were mostly friends and families of people with dementia because unlike in other places, there were barely any informative events or training sessions for them. Consequently, the project was restructured and adapted to local conditions, which is is more than can be expected. Training for friends and families of people with dementia even led to the creation of a self-help group. The project Würdevoll Altern – trotz Demenz gemeinsam ermöglichen ( ‘ Making ageing with dignity possible in spite of dementia ’ ) by the district office Nordhausen aimed to establish meeting spaces for people with dementia and their friends and families. However, this did not work out – neither in the city nor the rural settlements. People were more interested in infor­ mative events. Consequently, the project decided to put together a collection of useful equipment for events that could be rented and taken to any location ( dishes for large events, handicraft materials, a large collection of games for the elderly and people with dementia, books on dementia, materials for biographical work as well as tools for sports and physical activities ). This collection was available to all volunteers, friends and families doing care work, and anyone else who was interested. The project needed to change its direction based on the realisation that dementia was not talked about publicly and was avoided even by the elderly. Instead of offering services for people with dementia, the project started to offer services for people over 60, which were presented in institutions and representative bodies for the elderly. ‘ The idea was approaching the elderly with events, to get them out of their shell, have them engage with their lives, their past, their future, and with a possible future with dementia, either their own or that of other people they know. ’

Even when there was still a lot of work to be done in their respective area of focus, projects often targeted additional groups outside of that focus. This can definitely lead to positive interactions, but it is important to set realistic goals and take things one step at a time. The project Menschen mit Demenz gehören dazu ( ‘ People with dementia are part of the community ’ ) by the Protestant Deanery Frankenthal did not only address local church communities 185

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but also clubs and associations. Some club members participated in the meetings and promised further support. However, the goal had been to convince associations and clubs to open up their services and events for people with dementia and their friends and families. Unfortunately, the corresponding workshop and even referrals to already existing projects in Rhineland-Palatinate, such as training for sports group trainers and coaches for people with dementia by the Landessportbund ( ‘ State sports association ’ ), were not received well. This led to the decision to try to involve selected associations and clubs in organising a concrete event – a dance event for people with and without dementia – to see whether and how one event could lead to further, lasting activities. In light of the challenges that such efforts face ( as discussed above ), this seems a good approach. As it becomes clear in the report of the project Demenzfreundliches Quartier ( ‘ Dementia-friendly district ’ ) in Frankfurt-Heddernheim, organised by the Frankfurter Verband für Alten- und Behindertenhilfe ( ‘ Frankfurt welfare association for the elderly and disabled ’ ), approaching and involving multipliers, representatives and supporters that want to contribute in the long run can and should take time. The project depended greatly on the participation of committed individuals and the co-operation of professionals and volunteers with people living with dementia. It was centred on ‘ workshops for the future ’ that convinced additional people to join. It is interesting to note that among those who joined, there were also locals who had not been interested in the topic of dementia but who enjoyed the project ’s creative and open atmosphere. The organisers are aware that their efforts have helped everyone move a bit closer to a reality where all kinds of social actors co-operate creatively on a long-term basis. People could see that everyone contributed to solutions in their own way. In our modern age – an age that is marked by the importance of measureable results, numbers and facts –, it is more important than ever that we see social issues as processes, take the time we need, and try to include others for the long term. This makes it easier to involve people from areas of life other than our own and prevent organisational blindness as well as foster creative thinking through inspiration from the outside. I have already discussed reaching, involving and sensitising young people in the section on children and teenagers. Educators are another important group of social actors. The project in Hochheim presented above and other projects offered workshops ( or informative events ) for educators in 186

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kindergartens and schools. In Hochheim, the project Für eine Zukunft mit Demenz ( ‘ For a future with dementia ’ ) organised events that started with kick-off presentations discussing basic information regarding grandchildren of people with dementia and the situations in affected families. In a next step, participants discussed ways to include this topic in childcare and teaching. People looked for children ’s books on dementia and discussed them, which led to the start of a so-called book chest. This collection of children ’s books and other materials now travels from one school or kindergarten in Hochheim to the next. It is a rather simple and cost-effective form of support and inspiration for further efforts in this area. 4.5 The media – ‘ If they don ’t report it, it doesn ’t exist ’ ? For any process that focuses on public awareness and the shifts therein, the media is another area replete with important social actors and multipliers. It is certainly helpful to use marketing and public relations to the extent one ’s resources allow it. However, we should not underestimate the power of the snowball effect and word of mouth, especially for projects on a local level. Managing to involve journalists, TV channels and print media, using the Internet ’s unique features and staging symbolic actions means a success.58 However, it is also important to emphasise direct, personal contact with people. This addresses each individual personally; they can be moved emotionally and personally, and cannot avoid the topic as easily. This was confirmed in the evaluation, according to which public relations work that is scattered across a wide area – and often expensive – leads to insecurity about whether anything has actually been achieved. This effect is even stronger when public relations work does not aim to publicise a specific support service or point of contact but rather seeks to raise awareness of the topic ’s complexity. Of course, we can expect long-term effects to occur from such efforts. However, our society is overwhelmed with media input, and it is difficult to design, for example, an effective poster campaign for topics that are, like dementia, difficult to convey to the public to begin with. The following excerpt from the evaluation ’s general recommendations on helpful aspects of reflection and further development of projects should also be taken into account in regards to public relations and the inclusion of media. It is useful to recognise and make explicit what is special and unique 187

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about a region, an institution, initiative or approach. Additionally, it helps to dare to leave the perspective of care work and instead try a different view, talking about concrete, everyday situations. Participants at an event should be human beings who have something to say, not just numbers with which to gauge the event ’s success. If a newspaper article mentions that an event drew ten visitors on one day and 100 on another, the first one will count as a failure from the wide-spread perspective of valuing quantitative comparisons and the highest possible attendance numbers. However, it is quite possible that the first event was the more successful one. Maybe the smaller number of people allowed for a better exchange of ideas, which meant that three of the attendants decided to start working for the initiative in their own individual environments. Maybe they will reach additional multipliers, establish new contacts, start concrete activities. Maybe the 100 people at the other event merely passively ‘ consumed ’, and did not feel that they personally were addressed or concerned. Maybe they felt that by having been to the event, the matter was now ‘ checked off ’ ? This is another reason why we need more qualitative perspectives that give people space to voice their opinions, tell their stories, and share their experiences. This can show a completely different picture and can address listeners or readers more directly.59 This is what people in the projects had to say on the topic : ‘ Sometimes we would have liked a stronger response from the public and local media. But in a city, media such as newspapers are institutions that act very independently and don ’t commit themselves to such projects. It ’s pure luck sometimes, whether or which other topics are more important at a certain point. […] This encouraged us to do events even when we didn ’t receive a lot of attention, and to not make the number of participants our main criterion of success. ’ ‘ Despite talking to the press, there were only small announcements of our events in the daily newspapers. Interested people mostly came from the environments of people with dementia, and also those who work professionally in this area. ’

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At the beginning of Aktion Demenz, many thought that newspapers could not confront readers with the topic of dementia or people ’s experiences with it over their breakfast. We had to be grateful if there was any media coverage at all for larger events or new projects. Now, dementia has become a topic for the media. It is easier now to have longer texts and people ’s voices published. But it is still true that the small things that happen in everyday life are not particularly welcome – the ordinariness, the needs, and the problems for which we do not have a solution. The media wants to present projects that are ‘ special ’ and rare, concepts that pretend to present solutions, and ‘ big names ’. This might be the reason why it is easier to send a message that goes beyond care structures when one leaves the domain of care and old age and uses topics from partner domains such as art or childhood as labels. It can be helpful to have concrete experiences and ‘ faces ’ that are more relatable and easier to present to / by the media. The project Verstehen und verstanden werden – Miteinander Leben mit Demenz ( ‘ Understanding and being understood – Living together with dementia ’ ) in Hilden had the same realisation. When it became clear that additional trainings would take place, the project searched for other companies that might be interested. For this purpose, they talked to the press and included employees that had already attended the trainings. A bakery owner, a train conductor and the head of the city library talked at length about their experiences with the training and people with dementia, and by doing so motivated others to participate in the training programme. We need to remember that in the daily life of care work, too, there are many interesting experiences to be had, of which we would appreciate to hear and read more in the media, and not only as the next big care scandal. Otherwise, the imbalance in media attention may foster even more competition, as shown in the following quote : ‘ They do hard work, incredibly hard work. They ’re never featured in the press for it; you never see them on the front page or hear about them on the radio. Then we come along and get all the media attention. They expected us to make their work a bit easier. The driver has accumulated so many rest days [through overtime] that there ’s no chance he will ever be able to consume them. He hoped that we would take some of his work load from him. ’ 189

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The project Demenzkampagne Friedrichshafen – LebenTrotzDemenz ( ‘ Dementia campaign Friedrichshafen – LifeDespiteDementia ’ ) by the German Red Cross ( district division Bodenseekreis ) had its own unique experience with the local press. The initial plan was to publish interviews with well-known people about dementia, to ease the public into the topic at the beginning of the project. But the newspapers were not convinced. Only later, when the project was already running, was there a longform piece on the individual fate of a woman living with dementia and her husband. Later on, the local newspaper inquired whether there was a family in the project willing to talk about their situation. The newspaper was planning to dedicate a whole page to this, and in the end, not only did they publish this page but they also featured information on all the co-operating partners. Each partner was presented with a picture, their activities, their connection to the project, and information about the dementia campaign itself. These articles were published serially one each month in both local newspapers. The press may be insecure in its role and fear crossing lines, as feedback from local media in Wittenberg shows. The press did not come to the premiere of a theatre play with young people and people with dementia, ‘ out of cautiousness and respect for those who live with the illness ’, as they put it. The project members had to tell journalists that the project was intended to engage the public, and that this was one of its core features. The media have great responsibility in regards to dementia. They still focus too much on danger and crisis scenarios that are limited to the stability of the welfare state, rising costs for care work and the loss of bodily, cognitive and social abilities. People ’s agency, perspectives, and their existing resources are mostly ignored and only feature in reports on people with early-stage dementia, who themselves are presented in a limiting way. ( More about this in the third part of this book. ) The media could – and should – raise awareness and sensitise, especially in regards to the situation of people with dementia and their friends and families as well as their realities, do their part to change public attitudes towards dementia, and reduce fears ( of contact ) instead of fanning these fears. It also helps when the media reports on projects and initiatives, and motivates others to act, too. There is still a lot of work to be done in this regard, and it all starts with conscious, sensitive language use. It makes a difference whether we talk about ‘ people with dementia ’ ( keeping the people in the 190

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focus ) or whether we call them ‘ demented ’, let alone use expressions such as ‘ empty shells‘ , ‘ vegetables ’ or ‘ non-people ’. ( Many interesting suggestions for how to ( not ) talk about people with dementia can be found in a booklet They do hard work, incredibly hard work. They ’re never featured in the press for it. funded by the King Baudouin Foundation and the Robert Bosch Foundation, entitled Ich bin immer noch derselbe Mensch – Aufruf zu einer neuen Art der Kommunikation über Demenz / Framing and re-framing : A different way of communicating about Alzheimer ’s disease.60 ) We must not forget the power of language in areas that might seem innocent either. This has been discussed in the projects as well, as the following quote from the church project in Cologne shows : ‘ It was an interesting experience for me to see many journalists and also people in our community use the word Demenzgottesdienst ( lit. ‘ Dementia Mass ’ ). This can ’t be the direction we ’re going in, especially when we talk about inclusion ( not to mention that Masses are services for people, not for illnesses or symptoms ! ). This is where we need to continue to push for a courageous process of attentiveness in everyday community life. By supporting one another, we can find the right words that show that we care about the communicative needs of people with dementia in these Masses, but that in our understanding of normality, “ you and me ” and everyone else in the community is equally addressed and invited, just like those with dementia. ’

Our experience shows that expressions that serve as alternatives to the medical and exclusionary terms are often taken up by those who do not really agree with the idea behind them but want to appear up to date and show social awareness. This makes them look good on paper and gives the impression that they have understood the message. However, it makes these words into empty husks, and can sometimes even ‘ fill them ’ with exactly the meanings they were initially meant to oppose, for example with ideas firmly rooted in professional care structures. This is probably true even for ‘ dementia-friendly communities ’. Other examples are ‘ participation ’ and ‘ inclusion ’ 191

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– these terms are being used more and more without any meaningful content, theoretical foundation or practical consequences. In the funding applications, it was easy to see that some project initiators, mostly with a professional focus, thought they knew which buzz words to include to improve their chances, whether or not they fit the project ’s purpose. However, the very spirit of Aktion Demenz is not finding euphemisms for everything to constantly supply new words for a technical language. On the contrary, this can make the gap between what is said and what is done feel even larger. If you put food in front of someone with dementia without talking to them, hold the fork in their face once, and then take the untouched food away again, it does not matter whether you call it ‘ feeding ’ or ‘ serving food ’ when talking to your colleagues. In certain situations, it can be very important to talk about things openly, and express how you really feel they are. However, in the media, words matter a great deal because they are at the centre of how the media works, and because they often address people who do not have any first-hand experience with the topic beyond these words. The same applies to the images used. We get to see either an old lady with a teddy, curled up in the foetal position – or young, fit, laughing people with early-stage dementia. Everything in between often seems to be ignored, and we are left with nothing but opposites : young and old, together and alone, lost and safe, humour and tragedy, active and passive, angry and friendly, etc. To stay true to the diversity of dementia and the people who live with it, we need to include what lies in between these two extremes, and adapt our portrayal of people with dementia to the reality of everyday life. Finally, I want to stress once more how important word of mouth is, by which I mean the oral exchange of experiences and the direct sharing of information. The project in Sassnitz reports that ‘ communication between everyone involved was the most important part of public relations work ’. Another example comes from the project in Goldenstedt : ‘ Participants could pass on what they had heard at the events to their personal contacts, which was an important multiplying factor in raising awareness. Again and again, we had participants tell us that they had only come because someone in their family or neighbourhood had talked about the event positively. Quote : “ It doesn ’t hurt to go and see for yourself. ” ’ 192

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To end this section, here is a quote that reminds us to not forget our own limitations when we try to make the visions in our mind a reality : ‘ Despite the fact that the project was well-anchored structurally, its success was only possible thanks to the commitment of individuals. The huge effort, constantly advertising events, talking about our topics and trying to raise awareness cost them a great deal of energy. We learned that in these projects, it ’s important to respect one ’s own and one another ’s limits and resources, perhaps not only working on what would be ideal, but starting with what ’s possible. ’

4.6 Local government – possibilities and limits One of the requirements of the funding programme Menschen mit Demenz in der Kommune ( ‘ People in the Community Living with Dementia ’ ) was that applications had to be submitted by municipalities themselves or by initiatives that could present a statement of commitment by the local municipality. Information on formal aspects of this statement was intentionally short, which led to many inquiries about what exactly such a statement should look like. The idea behind the statement was that municipalities would be required to commit to the projects they endorsed while at the same time not requiring financial support, so as not to exclude projects in economically weak regions or regions with different priorities. That meant that initiatives could ( or had to ) negotiate with local authorities to decide the extent to which the latter would be involved in the projects. There were many variations, and projects had to figure out whether municipalities simply declared agreement with the initiative ’s goals, took over patronage of projects or saw their role as spreading information. Additionally, some local authorities were asked to provide rooms and financial support, with the latter being a rare case for projects that had not been proposed by the municipalities themselves. In some cases, however, councils supported projects financially after they had been shown to have a positive effect on the community.61 Many initiatives, particularly smaller ones, needed to be reminded that they are the ones who want to do something for the local community – they were not the supplicants they tended to see themselves as, but had something 193

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to offer to the community. There are many cases of volunteers ( mostly women ) who organise consultation and informative events for years, even make the cake for the coffee breaks themselves, create and copy information material, collect donations to pay for speakers, and are happy if the mayor allows them to use a room. The problem is that for these people, the hurdles of sending applications for funding of any kind often seem bigger than what they think they will receive or actually do receive in return. ( However, there were some applicants from situations like this, and the funding programme tried to account for that by providing additional help and considering individual circumstances in its decisions. ) This is why it is hard for funding programmes to reach small, less professional – I would prefer to call them less mainstream – grassroots initiatives. Yet, they exist – networks of people who provide neighbourly assistance on a very practical and personal basis; without websites or offices, official concepts or structures. Here, too, it is the individuals who put in the effort and get things going. Some of these initiatives are able to implement a two-year project with very little support. On the one hand, this is a good thing as it shows how much can be done with little or no money. At the same time, these efforts run the risk of being used as an excuse for the lack of support by local authorities and being taken advantage of for activities that should be the responsibility of the public welfare system. This is a problem that could be found in almost all projects, giving a bitter aftertaste to the uncritical demand for more volunteer work at all levels of care work that used to be shared between the state and families.62 This is particularly clear in cases where people that have been working for years in what are basically full-time posiI can tell you what the municipalities are going to do : nothing ! tions – that should be official positions – have to stop contributing to projects. Their work cannot simply be split and moved to the remaining volunteers. But local governments and other sponsors do not always understand why they should pay for something that had been done for free for so long. The evaluated projects ’ experiences with local governments also show this lack of support. Mayors and heads of district authorities are more than happy to be honorary patrons but that is, more or less, the full extent of sup194

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port projects receive from municipalities. In some exceptional cases, local politicians, most often mayors, were intensely involved in the project work and engaged with the topic, on the level of content at least. All in all, local authorities preferred to pass the topic of dementia on to welfare organisations and volunteers and provide little in the way of financial or long-term support. Do projects risk becoming stopgaps ? Here are some comments from the projects : ‘ I can tell you what the municipalities are going to do : nothing ! ’ ‘ The mayor is the honorary patron, but she hasn ’t really shown up much. ’ ‘ The [political leadership] was involved symbolically. We were doing work that was supposed to be the responsibility of the municipality. You have to be careful not to let them foist too much off on you. ’

The participation of municipalities did show in some places when local authorities provided rooms for free or announced events in the local newsletter. Many projects benefit greatly from symbolic support on this level because of the role model effect : even the mayor talks openly about this ! The press are also more likely to report about an event if it is attended by a local politician. This aspect of making a topic more ‘ respectable ’ by including well-known locals is still underestimated as a way to include the political domain. This is even truer if people ‘ come out ’ after their political career to talk about their own experiences with people with dementia or their own dementia, which reduces fear and fosters open discussion. ( This effect was also noticeable in many applications that stated that they cared less about the funding money and more about the endorsement of the Robert Bosch Foundation, which would make the topic socially acceptable. Applicants hoped that this ‘ whitewashing ’ of the topic would remove some of the stigma the project would face. ) And of course, there were many projects that were organised by local governments themselves, sometimes on the level of districts or in the form of co-operative efforts between cities and districts. But more about that later. There are still areas in Germany where local politicians and representatives avoid the topic of dementia. The evaluation report stressed that projects often struggled with the fact that they had received a lot of verbal encour195

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agement that was then not followed up by any actions, as those responsible ducked away. ‘ It was really hard to get invited to a town council to talk about dementia. We were grateful if we received any kind of response at all. […] They simply ignore it, thinking, “ We can cross that bridge when we come to it. ” […] That was really disappointing, to be honest. ’ ‘ Some towns listened to the information provided and then decided, ‘ No, we don ’t want to be associated with the label dementia ’. We are young, aspiring towns. […] One mayor who announced his participation was voted out of office. His successor said about the multigenerational meeting space, “ We don ’t need that, it ’s just a hobby. ” […] The media doesn ’t always have the best intentions, either. When one mayor said yes, his decision was dragged down in the press. That ’s not helpful. ’

What is helpful is when politicians function as role models, which can be done simply by giving praise or becoming a patron. Many are not aware of or do not yet take advantage of this fact : ‘ The mayor attended the first training session for multipliers. He motivates. He ’s excited. And that makes people stay and continue with the training. ’ ‘ The preparation group gave a presentation to the council and received a lot of praise and acknowledgment for the activities and efforts of everyone involved. ’ ‘ The town ’s mayor gave valuable support to the project in her role as patron from the very beginning. ’ ‘ We ’re always happy when mayors send out invitations. People work together so well then. Church communities get involved and offer to organise film screenings in the afternoon. People start groups for physical activity and activation. There are many motivated people here, and coming together under one common logo inspires them. ’ 196

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However, when councils are involved more directly or co-operate with larger initiatives, practical issues arise in relation to the coordination of, and insecurities surrounding how, responsibilities are to be distributed : ‘ There were a few communication difficulties that arose at the intersection of the project and the municipality, for example when organising a shuttle service. Senior citizens officers often did not show up to meetings. The level of support we received when trying to set up dementia groups also showed that dementia needs to become more prominent as a topic with the local authorities, and that responsibilities need to be sorted out. ’

Finally, people had expectations of the political domain that focused less on structures and more on ‘ soft ’, social aspects, which makes them all the more important : ‘ When our project was selected, we weren ’t the first to tackle this issue here, but we were the first not to be afraid to talk about it publicly. We found people in the local government who had an open mind, and an open heart, who were willing to actively and actually work with us, and who were determined to use the starting money to help people with dementia and their friends and families as much as possible. ’

Again – and this is certainly the case in general as well –, support depended on the personal attitude and experiences of individuals. A mayor who cares for their mother or has a father-in-law in a home will react differently compared to one who has no experience with dementia and wants to present the town as young and dynamic. ‘ Our experiences with co-operating with the council and the support we received were mostly positive. The council sent social planners who accompanied the project as members on the board. Advisory councillors and district leaders supported the project both creatively and financially. However, current planning shows that this always depends on the personal view of each individual district leader. ’

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In some projects, the municipalities were themselves the focus of activities or an important target group in their function as an administrative and political power. One such project was Dialog Demenz im Pfaffenwinkel ( ‘ Dialogue dementia in the Pfaffenwinkel region ’ ) by the local Alzheimer ’s Association in Weilheim-Schongau. The project aimed at ‘ knitting ’ a dementia net by strengthening self-help and supporting volunteering as an expression of shared responsibility and prevention. Besides organising public events and training, the initiative focused in particular on political decision makers : mayors, town representatives and council members of both small and large towns were approached to serve as multipliers and pave the way for dementia-friendly communities. Their first success came in the form of the district assembly of Weilheim-Schongau from which 9 of 18 mayors were convinced to become members of the Alzheimer ’s Association in Pfaffenwinkel. The association is now working with 34 town representatives from the district assembly to formulate a concept for the position of a volunteer dementia advisory board. The project Demenzfreundliche Kommune Mittelfranken ( ‘ Dementia-friendly community Middle Franconia ’ ) by the GeFa Mittelfranken – Angehörigenberatung Nürnberg (  ‘  Geronto-psychiatric coordination Middle Franconia – friends and families advice service Nuremberg ’ ) approached the 205 municipalities in the Mittelfranken region. The plan was to give inspiration and provide support for local initiatives in various municipalities that would then continue in their own way. For this purpose, informative events and an advice service were organised, and financial funding provi­ ded. Mayors could set up new, dedicated advisory committees or use already existing committees to develop and implement individual goals for their towns. The project aimed to motivate between three and ten municipalities, and managed to actually reach eleven, with additional towns declaring preliminary interest. In their feedback, towns saw it as particularly positive that both short-term and long-term goals had been established, that public relations work was being done to raise awareness and spread information, and that new projects were being started. Advice and support in terms of content for participating towns is ongoing and open to others as well. A handout is in the planning stage. The following is a quote from the project ’s website :

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‘ In every town, you can hear sentences such as these : “ She stopped going out alone a long time ago. He says he prefers staying at home. She doesn ’t remember anymore, and he doesn ’t find his way back. She is tired during the day and restless during the night. He is aggressive. ” Do we not all know someone like that ? Dementia increasingly defines our time. The initiative Dementia-friendly Community seeks to confront the challenges that come with this illness in a social and responsible way. In the future, we want to hear sentences more like : “ Since she doesn ’t leave the house anymore, people visit her regularly. Since he doesn ’t find the way home anymore, his neighbour takes him to the choir and brings him back again. Since her day and night rhythms are out of sync, she has her day structured around various motivating activities. He is laughing again. ” ’63

Unfortunately, many have not yet understood how helpful and productive it can be not only to tolerate volunteer work or try to take it over, but to support it and grant it a degree of autonomy. The latter is particularly difficult for organisations made up of volunteers, which leads to competition, as the following quote illustrates : ‘ We ’re always directly there; we speak our clients ’ language. They can ’t even approach these people. ’

For co-operation with local authorities to work, both sides need to do their part. The project Dorfplatz – Demenz auf dem Lande ( ‘ Village square  –  Dementia in the countryside ’ ) by the collective municipal association of Tarmstedt is a good example of this. There, the initial plan was to initiate meetings in all towns that are part of the municipality. The goal was not to have so-called experts teach what is important, but to encourage locals to engage with the topic and develop potential forms of support. These processes were supposed to be developed in the project, and then become the responsibility of town governments. But unlike the collective municipal association itself, political representatives in the various towns were rather uninterested and barely participated in the events. The concept did not work the way that had been intended. After all, these representatives had been meant to work as door openers. The organisers in Tarmstedt came to the conclusion that the

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representatives should have been involved from the start, in the project ’s conceptualisation. Taking a detailed look at the larger picture is useful, not just for local authorities. The project Mitten im Leben – trotz Demenz ( ‘ In the midst of life – despite dementia ’ ) by the Volkssolidarität ( ‘ People ’s Solidarity ’ – Brandenburg division ) in Angermünde / Lychen brought together a small local working group. The group has regular meetings in the multigenerational house and soon realised that theirs was not simply a project for the elderly, and that they had to come up with a demographics plan. They concluded that the problem was not that there are too many old people but that there are too few young people. It follows that communities not only have to care for the growing number of old people but also make sure that young people can have a good life in the region and will stay there. However, this only works if people from all generations work together. In the end, the local authorities organised a series of projects. Sometimes, these projects were implemented in co-operation with others, such as their respective districts or local Alzheimer ’s Associations. Sometimes, they were started and implemented independently, with the help of local partners. In Esslingen, participants in the project Demenz-Offensive – aus.ge­ dacht  –  ich, du, er, sie ( Es )slingen denkt weiter ( ‘ Dementia offensive  –  thought / imagined / not thinking anymore – me, you, him, her, it / Esslingen thinks ahead ’ ) identified strongly with the town of Esslingen, which motivated everyone involved to tackle dementia as a social challenge. The main organisers were well-known, seen as neutral, and had a lot of experience, which was seen as particularly helpful for working together in an atmosphere of mutual trust. In its role as a guide and mediator, the town supported co-operation and networking between a wide range of different social actors. The use of existing resources and networks allowed for long-term planning, which added to the project ’s sustainability. This shows how involving local authorities can help the success of far-reaching public awareness campaigns and events. The project has been documented and evaluated in great detail; a report can be downloaded online or requested from the city management. In Goldenstedt, the mayor himself was deeply involved in the project GOLD – Goldenstedter Offensive für ein Leben mit Demenz ( ‘ GOLD  –  Goldenstedt Offensive for a Life with Dementia ’ ). The town ’s event for New Year ’s Eve seemed to be the perfect place to present the topic to the public 200

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in the ‘ GOLD ’ week of action. Churches, schools and clubs, but also administrative agencies, institutions of adult education, welfare organisations and social institutions were present and could be informed about the project. The goal was to make the older members of the community feel comfortable and enjoy their life in Goldenstedt. Various institutions, associations and clubs made an effort to include dementia in their programme for the year. ­Churches organised several afternoons for the elderly in various parts of the town, and associations and clubs such as the Heimatverein Goldenstedt ( a club dedicated to the local town and its traditions ) and the Bündnis für Fami­ lie ( ‘ Coalition for the Family ’ ) held events on dementia. For its project Netzwerk Demenz ( ‘ Network dementia ’ ), the city of ­Bocholt initiated a plan of action consisting of three elements – public relations, training for experts, friends and families and other interested people, and the development and implementation of ideas that improve the living situations of people with dementia ( this included, among other things, events held in the local dialect ). During the project, a network of different social ­actors was created, who were invited to share their expectations and resources, and formulated working guidelines as a foundation. A relatively large number of districts engaged with the topic of dementia. Often, the various towns in a district have different priorities in terms of politics and cultural focus. Together with differences between urban and rural areas, these can pose a significant challenge. On the other hand, it can be useful to centralise different experiences and fragmented information. The I realised that everyone there was a professional, that they all just wanted to secure their privileges and resources. project Mit uns – Demenzfreundlicher Kreis Düren ( ‘ With us  –  Dementia-friendly district Düren ’ ) is one example of this. At the various events and ‘ markets of possibilities ’, people could put their ideas, suggestions and criticisms into a ‘ wish box ’. The box has remained in the district office to enable locals to continue adding their thoughts on dementia and the project. In ­addition to a dementia guide, the project also created a booklet with recommended literature that could prove useful elsewhere as well. Based on the constitutional principle of local autonomy within the law, it is the duty of districts, towns and municipalities to provide care for everyone 201

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based on individuals ’ needs. In regards to dementia, they are legally obliged to provide differentiated care structures that consist of open, out-patient, ( partially ) in-patient, and complementary help, care and social services for the elderly. The ultimate and final responsibility lies with the municipalities. They are also required to implement local measures in accordance with the UN Convention on the Rights of Persons with Disabilities as it applies to people with dementia. Participation needs to be lived in everyday life. This creates a wealth of tasks for local governments, and more and more social actors are becoming aware of them. Here, too, we need to look at the greater picture and individual starting positions, and not simply delegate everything to local authorities. For example, efforts can be made to dismantle the taboo, raise awareness for dementia-friendly communities, establish local solidarity and make sure that the required help and support are provided. Local potential for support can be developed, organised and supported. Infrastructure, services and activities can be made accessible. Aktion Demenz is convinced that if local authorities and politics more generally recognise( d ) that dementia requires first and foremost social solutions, they can ( or could ) do a lot to support existing as well as new initiatives rooted in civil society : ·· They can create an environment that allows communities to fight against stigmatisation and incorporate the topic of dementia and people with dementia into all areas of community life.64 ·· They can locate deficits in their own communities by analysing existing structures. ·· They can assess, initiate and develop local potential for support. ·· They can encourage working groups to connect local social actors, as well as support or participate in existing ones. ·· They can act as neutral mediators during the planning phase and encourage the implementation of measures for and with people with dementia in an ethos of shared responsibility. ·· They can support help and support systems, in particular volunteering, and connect it to the professional domain. Small measures and smaller, independent, diverse initiatives in and from different social domains are just as important and valuable, to ensure that the professional care and service sectors do not take over everything. 202

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The evaluation process also examined projects organised and implemented by volunteers that worked ( or still work ) independently from ­institutional structures. In these projects, people organised something for the greater good of their communities without pursuing financial or political goals – as one project put it, ‘ for our own future in old age ’. However, as the report shows, the more confident volunteers are, the more they come into conflict with forces and members of local planning and care structures that fear for their monopoly and try to bring the volunteer work under their institutional control. ‘ We were also part of advisory committees in […]. I realised that everyone there was a professional, that they all just wanted to secure their privileges and resources. Back home, I read the minutes and after one page, I said, I won ’t play this game, I won ’t let myself be used or controlled by them. And we said immediately, […] there ’s no way we ’re going to become employees. At an event, I had a crucial realisation. A young man approached me and said, “ Please take care to keep your independence and stay close to the people, that ’s where the real problems are. ” ’ ‘ There was an informal network, but we dropped it soon, because the ­representatives of the various service providers were just sitting there, waiting to carve up what we were offering. ’

The last quote addresses a difficult issue. When professionals are present in such networks, they should focus less on concrete, short-term achievements for themselves and avoid pushing themselves into the limelight. That is true, too, when it comes to ‘ reaping ’ public attention etc. Instead, professionals need to understand that participating in such projects has positive effects in What can we do outside of the established structures ? the long run, in addition to the added value for both themselves and others. Such projects can approach and motivate new groups of people, who are potential employees or customers. They indirectly advertise professional services. And they allow professionals to re-orient themselves on the market or improve the services they already offer. 203

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From the projects ’ perspective, competition between different social service providers is clearly noticeable. They often perceive this competitive situation as self-serving and driven by economic interests, which they fear ignores local needs and interests, preventing the discussion and implementation of creative and long-term ideas, which are seen as essential by Aktion Demenz. ‘ To think, and to think further – what can we do outside of the established structures ? – that wasn ’t possible. There was little room for creative ideas. After all, they ’re not initially profitable for welfare organisations. ’ ‘ The volunteers had developed a concept for activities with people with dementia. They presented it at a public event. Later, I got a call from the head of [a welfare organisation] who told me that they ’d start doing that from the next month onwards, and that they didn ’t need any volunteers. I was shocked. […] I had worked with the volunteers for half a year. The local physician managed to get both parties to come together, and she managed to make it so that both could be involved in the project, that they ’d switch every week. This was a good solution for the people with dementia because it meant that the activities were done on a weekly basis. ’

It is interesting to note that in this example, a doctor acted as a mediator, when elsewhere people complain that doctors do not get involved enough. ( This criticism is mostly directed at the attendance at events, so maybe this example shows that there are other areas where doctors might be able to do more, and maybe it is an example of how much depends on the interests and priorities of individuals. ) To reduce competition, people and organisations could try to think about how they can complement each other as partners. Offering a 24-hour emergency service, for example, or saving resources when implementing new ideas by clearly distributing both the responsibilities and profits that come with them from the get-go. Perhaps, an approach focused on the social, such as the one that dementia-friendly communities represent, offers the chance to attempt working together instead of working against one another in an area that has not yet been strongly economised ? Charlotte Jurk points to the gap between the level of planning and the present situation in the various towns. What do people really need ? Where is 205

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a lot of money spent on venues and services that end up not being used ? The volunteer groups discussed above do not think that they should be content with sitting on the lower steps of the hierarchy. They are convinced that it is this hierarchical thinking that creates problems with co-operating in the first place : ‘ We did our research, we looked at different models of volunteer work. You get funding for three years, and then that ’s it and the volunteers are on their own. Then, hey presto, half a year later, the whole project collapses. People were being used up, and they could feel it – “ I ’m being taken advantage of here, I ’m being used ” – and then everything stops. In our project, people meet those who help and those who need help on an equal footing. There ’s no question that people get compensated, but it ’s affordable, it doesn ’t cost 25 euros. We also have a social fund for donations in case someone can ’t pay. I know of a place where they spent €70,000 on a new institution, and nobody ever goes there. ’ ‘ I also work in quality management in the care home, and there, I can see that the professionals treat volunteers as inherently inferior. If you think in this hierarchical way, then that ’s the way it is – you see their work as inferior. Training doesn ’t change this basic attitude. […] I also have the impression that professionals don ’t realise at all that in caring for people with dementia, families carry the bulk of the work and the burden, and that volunteering plays an important role, even if there aren ’t that many volunteers. Every institution should be grateful to have volunteers. ’

Co-operation can still work well on a practical level, even in care homes, which open up more to the public and the community if volunteers are involved. ‘ We ’ve also been approached by the home and asked, could you maybe visit this man, he doesn ’t have any friends or family left. This works great, also as a way to open up the homes. Not everyone in the home is qualified to work with people with dementia. The staff no longer see us as a threat, as monitoring and judging their work. At the beginning, this was a real

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issue. Once, I filed an official complaint. Since then, things have changed. You have to make it through this resistance. ’

In this context, opening homes to volunteers takes the form of a visiting service. But that will not be enough. Institutions will have to open up more. They need to be vitalised in regards to opening up, bringing people in, thinking and acting together, differently and further. It is true that it is not easy, and there is a great deal of resentment and fear, but it is worth it, for everyone involved. As we put it on our website, service providers and institutions are required to offer consultation, care and support services for the elderly and people with dementia and their friends and families. In addition, however, they are important social actors when it comes to changing attitudes, and the position they take has an important impact on local development. We could and should plan institutions and services based on demand and need, open up available services to people with dementia, diversify services, and develop new, innovative approaches. Not least, we need also to advance changes in attitudes to move beyond paternalistic ideas of care and specialised institutions, and aim for participation and joint community life. The project Kompetenz Netz Demenz Oberndorf a. N. und Umgebung ( ‘ Competence network dementia Oberndorf [am Neckar] and surrounding ’ ) by the Altenzentrum ( ‘ Centre for the elderly ’ ) in Oberndorf shows that action and activities for dementia can be organised and headed by institutions from the care sector. This project tried to encourage public authorities, businesses and other interested parties to engage with dementia and create practical, easily accessible networks that would take into account each of the various unique local situations. Another example is the project Gutes Leben mit Demenz in Grafenau ( ‘ Living a good life with dementia in Grafenau ’ ) that was headed by the local Zentrum für Senioren + Begegnung ( ‘ Centre for the elderly and for encountering one another ’ ). Together with the local authorities, the centre organised a ‘ workshop for the future ’ for locals to develop ideas on including people with dementia in everyday life. The project published two booklets on technology and living with dementia.

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4.7 Volunteering and social involvement in the community Supporting people with dementia, valuing their resources and abilities, and enabling their participation in public life are among the important duties of a society. Being integrated in a community affects elderly people ’s mental health and abilities, and can prevent or alleviate symptoms of dementia. More importantly, they are indispensable for ageing in dignity and with satisfaction, rather than in isolation and loneliness. Volunteering plays a crucial role in this. It allows people other than friends and families to help. The advantage of volunteers is that they take a different position than professionals, can do different things and enable different forms of encounters. This is exemplified by the experiences of people who say they had given up on themselves even though they had been ‘ taken care of ’ by professionals. When expecting a volunteer to come by for coffee and chat, they started to dress differently again or wanted to buy new curtains. Personal exchange and contact is and remains essential. Volunteering can also be an opportunity for taking part in shaping your own environment, doing something good and meaningful for yourself or others – or for your chances on the job market –, and helping build something from which you will one day benefit yourself. It enables people to experience a feeling of community, create new social contacts, receive recognition, and to help shape the future. Most people are motivated to volunteer by a mix of personal and social reasons, and there are many studies on the positive effects on and motivations of volunteers.65 It is telling, however, that in many contexts, volunteering is called volunteer work, which is representative of the ongoing change in this area, and will feature in the quotes from projects. Volunteering is increasingly seen as a replacement for services that the welfare state can supposedly not afford any longer, and for vanishing support and solidarity within families. Volunteers are turned into a resource, integrated into the market, fulfilling their civic duty. They are being forced into structures similar to the job market ’s that are more about determination from the outside and reliability, sometimes even necessity, than they are about voluntary motivation, self-realisation or altruism. Everyone calls for volunteers, and compared to other countries, Germany is in a good position. Yet, many ( for example the federal government, associations, care institutions, etc. ) are thinking about how to 208

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make even more use of volunteering, how to expand it and make it more easily accessible. What is interesting – and scary – is that that nobody ever asks : What do volunteers want ? What do the people affected need ? In practice, this often looks like this : I want to offer a service, and I need volunteers for that – how do I get them ? It comes as no surprise that if you take this approach, you will rarely succeed in actually finding volunteers that are willing to join you. Today, there are so many different forms of volunteering that it is impossible to talk about volunteering as if it only came in one shape. Here are some examples : There is ‘ volunteering to go ’ in Berlin, meaning that if you are bored or have an hour to spare, you can offer your time and people will try to find something to do for you – spontaneous, accessible, flexible, modern, non-binding, no commitment, no relationships, no consequences, time-optimised ? There are 8-hours-per-week volunteering contracts that include a description of the work and the requirement that those who sign it be present and attend training, including a certificate – scheduled, ‘ reliable ’, longterm, economically required, maybe compensated and under supervision ? There are people who spontaneously offer their help with going shopping or seeing the doctor, which is all the more important for the little things – sudden, quotidian, cannot be planned, directed or ‘ calculated ’ ? There is working towards a shared goal with others who all volunteer in their own different ways, etc. These two latter aspects are the focus of the social involvement that Aktion Demenz envisions. The idea of dementia-friendly communities relies more on everyday help and encounters, engaging with and making decisions about your own as well as others ’ ageing process, and indirect support in the form of tolerance, acceptance, respect and open-mindedness rather than volunteers who care for, watch, and ‘ take care of ’ people who ‘ suffer ’ from dementia. Nonetheless, systematic support and assistance by volunteers is still important, especially in regions with little infrastructure or few care services. Flexibility in regards to schedules does not have to mean that someone is unreliable or unable to connect to other people, as the following example shows. A woman buys groceries for her neighbour, an elderly woman, once a month. They have agreed that she can do that whenever she has the time for it. She receives the shopping list in her mailbox. On the day she goes shop209

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ping, she calls the neighbour. After work, she goes to the shop and comes to the woman ’s house, where they unpack everything and have a chat. As this happens on a day when the younger woman has time, the chat might turn into a longer conversation, which she values herself, rather than only doing it as a favour for the neighbour. This example is also important because Aktion Demenz does not simply want people to ‘ concern themselves ’ with people with dementia. Instead, we should live with each other, be integrated into each other ’s lives, and develop new forms of community, or at least stop existing ones from falling apart. Volunteering and individual commitment as well as the efforts of everyone involved are crucial for implementing projects. Some projects could not have happened without volunteering. This is one of the conclusions of the evaluation of relevant projects, which reports that motivating volunteers was key to the success of many projects. In some projects, this was surprisingly easy to achieve. However, in most towns and municipalities, there were ­difficulties  : ‘ Finding volunteers is a problem. They expect to be compensated. ’ ‘ If you manage to attract some, they ’re very motivated. But it ’s getting harder and harder, and finding volunteers is becoming more and more of a problem. We were looking for people who would pick up people from their homes and go on walks with them. We did a lot of PR work, did a lot in newspapers, put up posters everywhere. We didn ’t get a single reply. We really had expected more. ’

According to the evaluation report, we need to think about whether this is really caused by a lack of people willing to volunteer or whether this is a structural problem or an issue with the chosen approach. We cannot say here whether or not this is true for a given project, but it is true that activities that used to be done by neighbours or family members are increasingly seen as the responsibility of the social care sector. This is also why projects look for volunteers to read to people, go for walks with them, take them to cultural events or the doctor ’s, drive them to places and pick them up again, visit them, etc. – in a context where there are fewer and fewer young people and more and more old people who live alone. One project member put it like 210

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this : ‘ There are more and more things that need to be done, and then you get the feeling that there are fewer and fewer volunteers. ’ Charlotte Jurk confirms this tendency towards volunteer ‘ work ’. She describes how, in recent years, a whole range of helpers that offer semi-professional services for people with dementia has developed. For a few years now, care insurance funds have been paying so-called ‘ everyday companions ’ for people with dementia, which has created a market. One project reports that there are many nurses and geriatric nurses, or even people from other professional domains, who attend training programmes and classes to become self-employed and complement professional services. This way, everyday companions take over forms of support that used to be done by volunteers, friends or family members, which means that these people might be less likely to continue this form of support on their own. We could ask what came first – the chicken or the egg ? ‘ I talked to a woman on the phone today who ’s undergoing training to accompany elderly people so that she can become self-employed one day. She told me she ’s happy if she can get the additional €100 per month. She wants to write up receipts and have an income in addition to care level 0. ’

In some cases, particularly in regions with less infrastructure, volunteering can become, and has become, a way of securing one ’s living, which is why we cannot use the term volunteering uncritically. These are volunteers that actually depend on the expense allowance they receive for their work to add to their own low salaries. ‘ For example, the expense allowance could be €150 for 56 hours. And even the Bundesfreiwilligendienst [national volunteering association] attracts mostly people between the age of 40 and 50 who get €300 for 21 hours, plus sickness allowance and paid leave. Through the volunteering association, these volunteers aren ’t required to comply with the rules and regulations of Hartz IV66 for a year and a half, like writing applications and applying for jobs that they often have no chance of getting anyways. Or their partner has a job, which makes the household income too high to apply for benefits, but the money they earn is far from enough to make ends meet. Volunteering offers a source of additional earning for these people. ’ 211

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A project in a federal state in what was formerly East Germany mentions a 65-year old woman who cannot pay her rent despite having worked for 40 years. She did not become a volunteer although she wanted to, because the expense allowance would not have been enough to help her. ‘ We don ’t have this pool of bored housewives here. […] For many, volunteering is an attempt to earn a little bit extra. Which means that we need to qualify the term “ volunteering ” a bit. […] People in the age of 50 to 65 come to us and say, very openly, “ If you don ’t pay me, I ’ll look for something else. ” That has nothing to do with volunteering in the classic sense. … Those who have enough money, they travel. But those who volunteer here, they ’re in dire financial straits. ’

What effect can this situation have on how we treat and encounter each other, if some people who are being cared for are in a better financial situation than those who care for them ? Under these conditions, we also need to be critical of the constant incitement to volunteer by governments : ‘ Volunteering is something you have to be able to afford. The time and money we invest in our town, and in regards to fuel, phone bills, printing – we just do it. You just have to want it. ’ ‘ Those who are retired here are reasonably well-off. Those who want to help are worse-off. They have long gaps in their work histories; some haven ’t had a job in a decade. ’

Under these circumstances, the qualities of volunteering that are often praised by those who benefit from it – such as voluntary motivation, reliability and long-term planning – cannot be sustained. They might differ greatly from context to context. ‘ Many people need to earn money and say, “ I can ’t afford to volunteer. ” Many who volunteer find a different job somewhere and stop volunteering. ’ ‘ There are fewer and fewer people who volunteer for free. People often tell me, I would like to volunteer but I need to supplement my pension. My 213

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pension ’s so small, I need to get a small expense allowance. That happens more and more often. ’

Besides remuneration, there is also the question of the extent to which volunteers have agency and a choice, which was also a subject of the evaluation. How free are volunteers in their choices ? Is it mostly about filling ‘ gaps ’ and fulfilling pre-designed tasks ? It is a common belief that volunteering can only work if volunteers are given clear and precise directions by others. The experiences in the projects contradict this view, however : The freer volunteers were to make their own decisions, the more successfully they could motivate others to join them, and the more they identified with the project. However, even in the projects that relied heavily on volunteering, this realisation only took hold slowly over the course of many years. For example, the project Der andere Blick – Gemeinsam für ein besseres Leben in Hiltrup ( ‘ The other perspective – Together for a better life in Hiltrup ’ ) by the Protestant welfare organisation Gemeindediakonie Hiltrup found that expense allowances can change the expectations of volunteers, making them cynical. There is a difference between expense allowances and thanking people for their efforts – efforts they made without expecting any money – with a bouquet of flowers or a smile, or if they can attend events for everyone involved that foster exchange and mutual respect – as cliché as that might sound. This is definitely not intended to be an argument for taking advantage of volunteers and ‘ letting them starve ’. However, it can be understood in a way that makes us realise that money alone cannot account for the respect and gratitude that volunteers deserve and which motivates them to continue. At the Generationentreff ( ‘ Cross-generational meeting space ’ ) in Enger, the many volunteers stress that they do not advertise with expense allowances but focus on volunteering and how to make a difference. ‘ This is valued very highly in Enger. People come here, have wishes and want to do something. You have to treat your volunteers differently and value them. Don ’t show them from which side they ’re supposed to pour the coffee. Volunteering has developed into a form of self-fulfilment. I enjoy it and that ’s why I ’m doing it. The joint breakfast here in town is our “ exchange for ideas ”. You get 50, 55 people and they all talk to one anoth214

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er. You have to believe in people, you can do it. My mother used to stand in front of everyone, giving orders. That doesn ’t work anymore. Nobody wants to be told how to do things. ’

Accounts like this one are quite common – which leads us to the question of self-fulfilment and the value of volunteering for the volunteers themselves. Is volunteering changing from being motivated by compassion and a desire to care to being a self-optimised fun event ? We need to ask this question without judging one or the other. But of course there are also other motivations : ‘ There is a need to help, and this also helps us. ’ ‘ When I lose the contact with the families, I forget why I ’m doing this. I need to listen to them, laugh with them, cry with them, let myself be moved – otherwise I would need to stop. ’ ‘ That there were people disappearing from [the town] and nobody really knew what had happened to them – that was one thing that motivated me to start working for the [project]. You have to properly investigate to find out where all these people have gone. The elderly who care for one another become fewer and fewer, too. How can we involve these people more again ? ’

In Greifswald, the Bürgerhafen ( ‘ People ’s port ’ ) is an association of locals who want to decide for themselves where and how they volunteer. The initial idea for the project, applying for it and organising it, are the responsibility of a full-time professional, however. She confirms that being open to volunteers ’ wishes and expectations is essential : ‘ That doesn ’t work, saying, “ We have these and these goals and now we ’ll go and find us some volunteers. ” It doesn ’t work like that here, people come and go and they choose what they want to do. […] We have many very interesting people here who can contribute a lot. ’

Gerd Walter is one of these people, and he was kind enough to collect some of his experiences for Aktion Demenz : 215

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‘ When, in January 2011, I heard about the presentations for starting a support group for people who care for people with dementia, I didn ’t know a lot about dementia. After taking some time to think about it, I agreed to participate … and have never regretted my decision. By reading, listening, watching and most of all ‘ experiencing ’, I gathered some basic knowledge. A year ago, I started my own project for people with dementia in a day-care centre of the Pomeranian Deaconry Association in Greifswald. Once a month, I tell stories. The first time, I was really nervous. How are people going to react ? Will I get through to them ? Will I be able to motivate them to “ join in ” or at least to react in some way ? To keep it short, it was a success, and I had a lot of fun. For my stories, I ’ve chosen topics that I assume will interest people. Like, for example, spring, Easter, Christmas, childhood, the weather, vacations and holidays, to mention a few. For Easter, I had a bowl with chocolate Easter bunnies and flowers, and after I had told the story, everyone could choose a bunny and take it with them. When I was talking about childhood memories, one woman said she was from Schneidemühl. I looked for old photographs of Schneidemühl on the Internet, printed and laminated them, and took them with me the next time. She kept these pictures in her hands all the time, and kept looking at them and commenting on them … And afterwards, when I say goodbye to every one of them, I often say that I ’ll be going home to eat now. Usually, one woman asks me what I ’m going to have. I tell her, and she often says, “ I ’ll come with you then ! ”

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One last example. When I talked about how I ’d spend my Easter vacation at Lake Constance, a woman told me that she used to go sailing there. I remembered that and sent a postcard with sailing boats on it to the institution, asking them to give it to the woman. I was told that she was very happy about it. These and other little episodes have changed me. I ’m happy and grateful that I can do my little part. These results, with so little effort – that ’s what I call efficiency ! By the way, I started telling stories in another institution yesterday. The first attempt was a success, and I ’m going to try to make the lives of people with dementia a bit more bearable in two institutions, as long as I can. ’

In Pfronten, volunteering grew on the basis of a barter circle that had always emphasised the importance of people ’s unique abilities and the unique forms of support they can offer. ‘ It ’s a pragmatic approach. It ’s easier to ask for something if you ’ve done a lot yourself before. People come to the circle and say, I ’m particularly good at doing this or that. If something ’s needed, they get a call. We ’ve noticed that there are some people here who can no longer actively contribute. That ’s why we founded our association, to help these people with the pool of resources that we have. If I do something there, I get the time spent added to my credit. We also collect donations so we can buy external services. ’

What you get out of volunteering can be many different things : having something useful to do, the joy of helping others, spending a day in good company, learning from others or having new experiences. This can change your perspective on yourself and others, but also on certain topics or life in general. Volunteering also means more social contacts – and this is sometimes seen as a way of preventing the symptoms of dementia. We could say that this is how it all comes together.

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The evaluated projects demonstrated that no matter people ’s motivations for volunteering, they all felt that what they were doing helped them grow as people, earn recognition, and discover new ways of seeing things. It often also led to new friendships. ‘ I have a different, much better understanding now and I feel confident enough to act. […] I ’ve realised that these people get all my love. The children and the elderly are the most vulnerable members of society. I learned to completely reverse my attitude. It was a process. ’ ‘ After the initial phase, I decided to join. Since then, I ’ve read a lot and have done a lot of research. My own view has expanded greatly. Most people are only interested in it because it ’s a trending topic. The human aspect is often neglected. ’ ‘ The carers ’ group created so much kindness here. Helping someone is a gift, and they really get that across. It ’s like dropping a stone into water. They ’ve lost their inhibitions, and they ’re not afraid to approach each other, in their personal lives as well. ’

Volunteering creates connections and sometimes makes possible all the little everyday things that we – and probably people with dementia – care about : social contact, conversations, being part of a community of people who share a common goal or idea. ‘ The carers met new people, too. People meet each other outside of the project; a carer ’s parents and her husband invite and meet a couple where the man has dementia. ’ ‘ Our team here is one big family. That ’s what makes it so great, being together without it being complicated, and having these connections. The town was happy that we were active. I ’ve found something for myself here. I don ’t have any pressure here, and what I do, I enjoy doing. The people here have found one another after having left their workplace. When we see each other again after a few weeks, it ’s like a big family party. ’

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However, despite all these positive aspects, volunteers ( and certainly many professionals as well ) reached their limits over the course of the project and exhausted themselves with the intense work that was focused into a limited time span. We must not forget this strain when we look at what has been done. We must be aware that such a level of additional effort is not sustainable in the long term. We need to take this into consideration with any kind of funding and support. ‘ We ’ve reached the limits in volunteering. It ’s enough for now. We need to wait and see how it works out in everyday life. […] We ’ve set a lot into motion, and now we need some time to rest and catch our breath. ’

5. Conclusion 5.1 Looking back The programme ‘ People in the Community Living with Dementia ’ has had an enormous impact, which has only gotten bigger over the years. Many places and people have recognised that we need to take into account aspects of society and civil society in addition to an approach to dementia that is informed purely by medical and nursing perspectives. This allowed various projects to be put in motion in different places that have had an effect beyond their individual local settings. Without funding from the Robert Bosch Foundation, Aktion Demenz ’ vision of dementia-friendly communities would not have been implemented in the broad and far-reaching way to which it has been taken by communities and supporting organisations. A great number of towns and municipalities could be reached, sensitised and ‘ opened up ’ to the topic. Although many still think that care and dementia are something we ‘ may ’ think about rather than ‘ have to ’ think about, a lot has started to change. Local authorities that think long-term are joining forces with motivated locals and other interested parties. In various forms and ways, the desired ‘ grassroots ’, largely volunteers, were involved, especially when professionals and volunteers from different domains managed to work well together. The programme helped carry the topic beyond the borders of Germany to other places in Europe.67 While the first cycle of the funding programme 219

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served as a way to test and raise awareness for the idea of dementia-friendly communities, the second cycle managed to diversify the idea both in terms of geography and content. It was met with a surprisingly strong response, as well as a demand for more experiences and insights. The third – and, as it became clear, last – cycle made it possible to explore individual aspects more deeply, improve transfer between and across projects, and continue and solidify experiences. Over the course of the three cycles, there was a rise both in quantity ( for example, local authorities ’ high demand for funding ) and in quality ( a large number of projects reached their goals; projects fit better and better ), which might be a sign of a better understanding of the idea behind the programme. However, it is also the result of a kind of bandwagon effect caused by the projects funded earlier, and the programmes ’ growing prominence, in addition to the fact that dementia is increasingly seen as important in different areas of society. Finally, people involved in earlier projects could draw on their experiences to make changes in follow-up projects. The symbolic effect of these experiences and examples, and the wealth of events that inspire new ideas and other activities is immense. This effect, often only noticeable in the long run, happens on both a local and a general level, and has to be taken into account when assessing the success of a given project. Dr Jurk identified three types of project work. This classification can be roughly applied to the entire programme as well : ‘ A . Initiated by care institutions and socially involved professionals : These groups develop good ideas, inspire others, create flyers, organise events, do PR work, and network. On this level, it is unlikely that project members will come into contact with people with dementia and their friends and families. These groups tend to stay focused on raising awareness, often without being able to say in detail how their work affects people with dementia and their friends and families. B. Hybrid forms : A professional service institution activates a pool of volunteers that more or less take matters into their own hands. The more focused the work and the freer volunteers are to make their own decisions, the more excited, motivated and dedicated they are. This being said, vol-

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unteers stress how important it is for them that someone with professional experience is co-ordinating. C. Projects that emerge from volunteering : In these projects, volunteers often come from health and social care professions and have retired or are unemployed and looking for something purposeful to do. The important aspect here is that the project was not initiated by a large welfare organisation or by the local authorities but by a group of volunteers. ’68

In addition to these three forms of collaboration, there are also projects that are initiated by individuals, and projects that are co-operations between individuals and organisations.69 The programme made it possible to try out various ideas and put things in motion at a local level, for which I want to express my gratitude to all projects and individuals involved. We have collected many experiences, and we have learned a lot, but this long-term goal requires us to keep pushing forward and trying new things. Besides many positive developments, there are some who went in the direction of trying to implement a sort of ‘ certification ’ of dementia-friendly communities. As has been discussed above, this is a worrying trend. In addition, the programme can be seen as a pioneer and inspiration for the federal programme Lokale Allianzen ( ‘ Local alliances ’ ). We would have appreciated it if our experiences had been taken into account more in this programme. The lack of exchange between different social actors, which can have a variety of causes, is a general challenge that still needs to be tackled on the local and national level. As I think they have been described in great detail already, I would like to avoid listing all the chances and challenges again. Still, I want to allow some room here for discussing those challenges as part of a more general reflection, both for the programme in general and in regards to local initiatives. Over the course of the calls for projects, it became clear that a formal application process still discourages and deters small initiatives. Sometimes, they cannot provide an entity with legal personality that could apply for funding to begin with. Additionally, programmes such as this one are primarily shared and promoted within the domain they are most commonly associated with – in this case, health and social care. Although there is increasing awareness of the relevance of dementia in domains other than health and 221

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social care, even in the third iteration of the programme, the call was not always forwarded to institutions in other sectors such as culture, family, youth, leisure or migration, or distributed among faith groups, clubs, societies and schools. Reaching these other domains is an important facet of the idea of dementia-friendly communities. ( We will ignore the fact that any PR consultant would probably advise against this, as we effectively need to address all aspects of society. ) We should also not underestimate how much always depends on individuals ’ commitment and dedication. This becomes very clear when people ‘ drop out ’, as happened in one project when somebody changed job and moved away. The other participants were forced to shut the project down. This can also happen when a project has to engage and train external personnel. After the funding period has ended and the project can no longer afford this person, the experiences and contacts are no longer accessible, greatly reducing the project ’s sustainability. In the worst case, this meant that parts of the knowledge gathered during the project simply ‘ disappeared ’. Restrictions from funding agencies aim to prevent the loss of permanent positions, especially in the domain of social care, which people hope to get back via project funding. Unfortunately, this can lead to situations such as the one described above, and to cases where highly qualified individuals cannot take over certain responsibilities, and instead, external assistants have to be found and trained. ( Another consequence might be that institutions start to see activities as something external – an add-on –, which makes it harder to continue projects internally once the funding period has ended, or full-time employees are forced to continue activities without being paid for them. ) This is a disadvantage of individual commitment and dedication – the activities stop when those who started them leave. This is why initiatives should try to have their projects rest on several ‘ pillars ’ and reliably include more than one person, even if that means that they have to share responsibilities or that additional time has to be spent on initial coordination.70 It might be difficult to put this recommendation into practice, as many projects thrived on the efforts of volunteers and professionals who were willing to work overtime, with many reaching their limits. The exhaustion of project members did not only come from the projects ’ topics but also the structural settings they were placed in. Full-time staff and volunteers are both becoming increasingly dependent on funding, and this change seems 223

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to have accelerated. In addition to the general work that needs to be done and the new activities that are part of a project, reports need to be written, records need to be kept, and new funding needs to be acquired. This ‘ projectification ’ has been criticised by many. Additionally, different funding programmes and providers may have very different requirements. This can have a negative effect on the quality and the members of a project, which we are regretfully aware of. As much as we tried to minimise such effects and to give advice, they were still present, for example in the form of the formal requirements by the funding programme and internal pressure in projects. I believe this has made clear how big the burden can become. We are reminded once more that we need to tackle this topic together, sustainably, for the long-term. To put it boldly, we do not want to play dementia-friendly community one year, then pretend to be bicycle-friendly the next, before we move on to being dog-friendly, etc. These are issues that apply to all such funding programmes and are not unique to this one. There are a range of formal, legal, organisational, structural and financial aspects that pose challenges in other domains, too. They should be discussed in greater detail, and they should be taken into account when designing and implementing further programmes. What kind of support is really needed ? Fortunately, the number of participating projects shows that these limitations have not so far stopped the activities and efforts – but they do have a negative impact on dedication, motivation and creative innovation. This is not to say that we should simply send everyone involved in a project to project management classes and thereby solve these issues once and for all. On the contrary, many projects realised that a lot was possible without large sums of money, and may even be easier to put into practice that way. Self-determined and personal activities as well as ones that give inspiration to others, sometimes funded by smaller partners or partners closer to the given subject, attract and inspire many people. Local authorities are still figuring out their role on the level of management, and of course there is no single ‘ right ’ way for them either. They have the potential to provide a great amount of support, act as a ‘ neutral umbrella ’ for joint actions and can incorporate initiatives from civil society more easily. The following quote from the evaluation emphasises this : 224

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‘ None of local authorities that were part of the evaluation show signs that they are willing to guarantee long-term financial support to ensure that projects can continue to be implemented over the coming years. Councils give employees paid leave, provide rooms, and post events on their website or in local newsletters, which are important forms of support for the projects. However, nobody bothers to expect financial support that goes beyond that anymore. Do people give up too early and too easily on this ? […] On the one hand, local authorities want people to volunteer, but on the other hand, this volunteer work is expected to fit seamlessly into existing care structures. The gap between different social actors regarding ideas and goals seems to be becoming wider and wider. In advisory committees and working groups, plans for the future are drawn up and current activities steered, with the social service “ providers ” focused on their own interests, competing with each other and hoping to use volunteer initiatives for their own purposes. In the initiatives, on the other hand, people live neighbourly and everyday help, they organise coffee meetings and shuttle services. On the one side, they talk about people. On the other, they talk with people. Volunteers are aware of these contradictions and have the impression that they have to fight for their independence. ’

Receiving a bountiful yield from these complicated situations is difficult for a variety of reasons. We supported the funded projects in terms of coordination and administration within the limits of what was possible. We initiated exchange and networking between projects via workshops and the online platform, as well as collected and communicated experiences. Additionally, we kept in contact with funded projects after the main project had ended – if they wanted to –, which allowed us to integrate their experiences into the presentation of the programme to the public, and support sustainability and networking. In this regard, the geographically distributed workshops that included projects from all three cycles proved useful. What I see as particularly positive is the fact that initiatives that were not funded were still inspired to include, plan and tackle dementia-friendly aspects. In some cases, these projects have been implemented without funding or with funding from different sources. Many kept in touch with Aktion Demenz, at least on the level of ideation. This publication allows us to make our experiences available to other communities ‘ on their way ’ to becoming dementia-friendly. We are only able 225

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to present this publication today thanks to the support of the Robert Bosch Foundation. There are many facts and figures that I could present here, but as I have said above, they are rarely useful. This is why I would like to end with Dr Jurk ’s conclusion : ‘ In what way and to what extent did the projects benefit the people they were aimed at ? This question can be answered best not in the form of numbers or measurable results, but with stories. ’ This is why I want to point to the examples that have characterised this book, and present a few more voices from the projects. ‘ We sat down with the others, it was great. There was a woman about whom the nurses said, “ She usually doesn ’t say a word ! ” They were incredibly grateful and very happy about what we wanted to do. And they told stories from their lives. One woman told us about her HGV license. She said she ’d like to come along, but didn ’t have anything to wear. ’ ‘ During the trip, people remembered various places in the city. They thrived. ’ ‘ I still remember when we were at the Shanti choir, and we dropped the parents off back at the home. That was a completely new situation for their daughter, who was waiting there. She said, “ It ’s been such a long time that I ’ve seen my parents that happy. ” A few hours can have a really big effect like that. ’ ‘ One man living with dementia always tells these interesting stories about his time as an assemblyman. That ’s how we came up with the idea of having a story-telling café. ’ ‘ One woman always takes her dolls and bears for a stroll, and when I talk to her about them, we have the most pleasant conversations. You just have to enter her world. And I don ’t think anymore, oh my, if only I didn ’t have to go there. Instead, I enjoy it. ’ ‘ One married couple in particular were delightful to watch. The wife had tears in her eyes when her husband, who has dementia in an advanced

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stage, started dancing with her the moment the music started playing. She hadn ’t seen him like that in a long time. ’ ‘ What really made me happy : I was sitting on this bench with a woman in a wheelchair, and she started telling me about her father who had owned a part of the forest up there, with chestnut trees. And that she ’d always go up there to collect chestnuts. She ’d drive to Bad Homburg or Frankfurt with loads of chestnuts, to sell them there. The way she told me about it, it was so fluid and happy; I really loved that. Yes, it varies. Sometimes she can only talk in chunks and bits, but when something touches her emotionally, when she ’s having fun, she can let go of many things. Being together with someone, you can bring back a lot that was lost. ’

5.2 The here and now Altogether, the programme has raised awareness and sensitised many communities in Germany to a respectful, participatory approach to dementia. Additionally, the European-wide EFID ( ‘ European Foundations ’ Initiative on Dementia ’ ) and the call of the federal ‘ Local Alliances ’ initiative demonstrate that the funding programme has indeed got the ball rolling. All this success, however, should not let us forget that it can also have its flaws. Ostensibly simple solutions and conclusions can sometimes turn out to be hurdles on our way to actually dementia-friendly communities. The evaluation puts it this way : ‘ People see that learning about dementia fosters acceptance, allows understanding and enables participation of those who are being marginalised for being forgetful and confused as a main reason for getting involved in any of the projects. Training and education regarding dementia play an important role. It is a success if people from different domains and social spheres can view people with dementia in a different light, and can react differently to them than by being helpless and overwhelmed. Police officers, bank clerks, but also friends and families are grateful for this knowledge. This view is expressed in a large number of project reports.

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However, the rational knowledge being taught comes with risks, too : It creates new levels of classification, new rules for behaviour and new norms for relationships. Those who have attended training programmes know how to do it right. They think that they have to act and decide for people with dementia. This form of patronising caring might come with the best intentions but it smothers a more sensitive approach that allows us to look, to wait and see, to decide not to act. Is this a strategy to avoid irritation, to avoid a message that people with dementia might send to us ? ’

This is why we recommend that initiatives take their time to engage with themselves, with others, and with their local contexts in a thorough, critical way. Existing patterns and practices that might be common elsewhere should be questioned and reflected upon. This can sometimes lead to the realisation that it is the seemingly simpler, less exciting questions – and answers – that really make a difference, and that it is these questions and answers that people respond to and that motivate them to join an effort. Contrary to the popular belief that it is all about finding answers as quickly as possible, the evaluation showed that it can be very helpful to engage with the following questions, when looking back as much as when engaging with the current situation or envisioning the future : ‘ Becoming aware of your region ’s / institution ’s unique characteristics. What is special about our city / town / village/… ? What is significant about our industry, agriculture, job opportunities, cultural events, etc. ? Housing complexes  –  where and how do, for example, elderly people with low incomes live ? What is the car and public transport infrastructure for them like ? What about shopping, which social meeting points are there ? What traditions and attitudes are there in our own work ? How did our objectives develop ? What is unique about our community care centre  /  retirement home / multigenerational house / association, etc. ? Is our approach different from that of other providers / associations ? Identifying problems and contradictions What makes dementia so hard to bear ? Should we let ourselves get upset and unsettled ? Do we have to tolerate every single ‘ folly ’ ? Where do the wishes 228

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of friends and families fall by the wayside ? Are we even allowed to talk about our own aggression and fear anymore ? How do we deal with the topic of euthanasia ? Considering one ’s own learning processes What has changed in our stance towards the problem of how society deals with dementia since the start of the project ? What have we learned ? What is the relationship between professionals and volunteers ? What is the social situation of volunteers ? What tensions can arise ? Talking about concrete experiences and letting ‘ participants ’ become individuals with something to say Have we reached ( new ) people with dementia and their friends and families ? What can we say about their situation ? Are there different stories ? What are the biggest needs of those concerned ? But also, what creates the joy in engaging with people living with dementia ? ’71 It may sound mundane, but sometimes it seems that people are so afraid of this ‘ great problem of our time ’ that they try concept after concept even though this does not always actually benefit those they seek to help. It might be helpful to ‘ go back to the roots ’ and think about the ‘ basics ’ of what we need to ‘ stay in life ’. This is not about trying to make everything how it used to be or ignoring technological advances, but about finding new ways of understanding and living community and support. Fortunately, this path allows us to go into several directions, for example to see dementia as a topic that touches many areas and not as something that needs to be pushed further and further into a corner of specialised services. To tackle this in the future, we will need new, additional research foci ( social aspects, subject experience, participation of people with dementia, qualitative and quantitative research, new forms, etc. ). And we will need to take a closer look at what causes the difficulties that have been discussed here. To quote Gabriele Kreutzner : ‘ How do we get from being short of breath to being full of life ’ ? How do we get from a project structure to a structural process of support ? How can we secure or at least begin to forge a path to better communities for people with and without dementia ? ’

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5.3 The dementia-friendly community spelled out D Daring to look where it hurts, where things are stuck, and where things might fail at first. E Ending the belief in quantity over quality. M Making ‘ small things ’ and ‘ small changes ’ possible – and valuing them. E Ensuring that volunteering and personal commitment are – and remain – something that individuals can freely engage with and have a measure of control over. N No to doing things for the sake of doing things, out of fear. No to a useless jumble of concepts. T Together and mixed – rather than exclusion and separate worlds. I Initiating and encouraging thinking and reflection one step at a time. A Allowing successful failure and learning from it. F Frameworks and wider contexts need to be seen and considered – not just individuals. R Raising public awareness and working towards a change in public consciousness. I Individual, personal responsibility and autonomy need to be recognised and harnessed – as an opportunity, not a makeshift last resort. E ‘ Expertocracy ’ needs to be questioned. N Now, what are you doing ? How do you want to live and grow old ? D Dementia-friendly community = human-friendly community ! L Long-term, joint processes are necessary for change. Y You and I – what makes ‘ us ’ special ? C Co-operating and working with rather than against each other. O Overexerting ourselves and being overcaring and overprotective is not a viable solution. We cannot – and should not try to – manage everything. M Multifaceted rather than black-and-white thinking. M More can sometimes be less. U Understanding each other and fostering empathy. N Neighbourliness can – and needs to be – lived and reinvented ! I Including people ‘ affected ’ by dementia and people outside professional care structures. 230

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T Taking up and giving inspiration and impetuses. Y Yielding to the status quo and trying to make small improvements is not enough. We need to enable critical perspectives on established structures and ways of doing things. We need to think further and live further ! We need to allow for the fostering of empathy, for mutual exchange, learning, craziness and pausing to think rather than only for professionalisation. We need to encourage and make use of different, creative ideas and activities rather than only standardised training and normalised forms of ‘ conveying knowledge ’. We need to push for thinking about accompaniment, support, living and participation for all our living spaces. We need to work to together to re-vitalise our communities, for ourselves and others. ‘ In the end, it is our relationships with other people that give life its meaning. ’ ( Wilhelm von Humboldt ) 5.4 Looking ahead at what will be In many places, great progress has been made. Shifts in social awareness and public attitudes do not happen within the time frame of a single project, however – though they can be initiated within such a time frame. In the heat of the moment, it can be challenging to stay true to one ’s own profile as a part of civil society and be clear as to how this approach differs from a medical care view. How can we encourage people to participate in casual, everyday and neighbourly help ? What needs to change in cities and villages so that people who ‘ forget themselves ’ are not forgotten ? What do we need to do so that people with dementia are appreciated despite diagnoses of their deficits ? This book does not present a 10 point plan for a unified, certified standard ‘ DFC ’ ( dementia-friendly community ). Instead, it collects a bouquet of possibilities. We see this openness as essential for the success of our approach. If you would like more information or are interested in exchanging experiences, feel free to get in touch with us or any of the funded projects. What do people with dementia and their friends and families need  –  what do we need – not only to stay ‘ alive ’ but ‘ in life ’ ? What will happen in the future ? How will this idea evolve ? Dementia-unfriendly, dementia-crazy or 231

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dementia-friendly ? I would like to conclude my part of the book by illustrating these questions with the following situations : Encounters – in movement Going for a walk around the block at noon. After all, the grandson is here for a visit today. And if, against all expectations, we run into someone, we quickly walk to the other side of the road, just to be sure. We don ’t go too far, you never know. A physical activity class with a professional trainer, hip protectors and activation exercises on Monday morning at a scientifically evaluated dementia gym, complete with a care and emergency booth. In a group with other patients of care level 2, and afterwards they ask how everyone liked it and assess fitness levels. A walk in the park like every Sunday afternoon, perhaps with a partner or a friend. Friendly acquaintances and passers-by greet us. There are toilets, and places to sit down and relax. Encounters – while shopping A man who is not allowed to go shopping anymore because he keeps causing trouble. Once they even had to call the police. A man who is so afraid of dementia that, at the age of 65, he fills out a form that he downloaded from the Internet. It assures his baker a regular payment in case he forgets it one day, but at the same time limits this payment to a certain amount. A man who can still shop at the baker ’s and butcher ’s because his niece asked for understanding and discussed payment with them. Encounters – in the neighbourhood Possible conversations when two married couples meet, one of them affected by dementia : Hi Getrude, long time no see. Good Lord, Erwin looks worse every day. You poor thing, you. Why don ’t you send him to a home ? ( Alternatively : Why don ’t you take him back home ? ) If I were in your shoes, I ’d have gone crazy already. I ’m celebrating my birthday this weekend, but I understand, of course, if you can ’t come again and it ’s just too much for you, or if you can ’t find anyone to watch him. 232

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Hello there. We ’re Mr and Ms XY. We live right around the corner. We were trained to deal with people with dementia and their friends and families as part of the town ’s volunteer visiting project. We ’re looking for people who need help, and we ’ve heard that you have early-stage dementia, so we wanted to ask whether you ’d be interested in a weekly visit ? If so, when ? Maybe we could start with your biographical background or a movement profile ? Hey you two, how have you been ? If you need any help with cutting the bushes or shopping, let me know. I ’ ll be free the day after tomorrow, for example. Oh, and it ’d be great if you could bring your famous birthday cake to my birthday party this weekend. Only if you have the time, of course. My grand-daughter ’s really looking forward to playing Ludo, by the way ! Encounters – together or separate ? The self-help group that only meets as a closed group after some members had repeatedly been excluded or thrown out. The self-help group whose members attend the monthly charity events for ‘ A Future Without Dementia ’ that take place in a different restaurant every time, in favour of medical research concerning this matter. They participate consistently in professional training, as they themselves are experts, too. There is a separate care group offer for people with dementia in parallel. The self-help group whose members meet regularly in the well-known café in the centre of town. There are people with dementia as well as their friends and families. One week they meet separately, the next week they have a joint meeting. They all become regulars at the café and sometimes help out in the café ’s herb garden. They also raise awareness for living with dementia at the spring festival along the road. Encounters – in cultural spaces Two friends who stop their tradition of going to the New Year ’s Concert together, because they are too afraid and ashamed, and do not want to cause any trouble. The ‘ New Year ’s Concert for people with dementia and their friends and families ’ that was moved to March out of concern for people slipping on the icy streets and due to problems with finding a date. In the breaks, people can eat finger food that was designed based on the latest research in nutritional science. The friend was trained and prepared for the event by the local care 233

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professional. He had to cancel, but a volunteer culture companion was available to replace him – so nothing stood in the way of enjoying the cultural event after all. Two friends who go to the local New Year ’s Concert for the 35th time. One reminded the other before, and picked him up. There were two moments that felt a bit awkward, but the evening was once again one ‘ to remember ’, at least for the moment. ‘ When we remember we are all mad, the mysteries disappear and life stands explained. ’ Mark Twain

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Notes 1 We use the term ‘ friends and families ’ in a broad sense, including relatives, friends, ‘ care-givers ’, etc. 2 We are always happy to receive additional accounts of experiences and observations via mail or e-mail. 3 See Gronemeyer, Reimer et al. ( eds. ) Aktion Demenz e. V. ( 2007 ) : Demenz und Kommune. www.aktion-demenz.de / images / stories / pdf / aktion_demenz08. pdf ( Accessed 18 June 2015 ). 4 See, for example, studies conducted by the Rush Alzheimer ’s Disease Center in Chicago. 5 Jurk, Charlotte ( 2012 ) : Bericht Menschen mit Demenz in der Kommune, Wiesbaden. p. 20. 6 As part of one workshop, a list of necessary ingredients in working towards dementia-friendly communities included ‘ personal contact and Tibetan prayer wheels ’. Initiating and maintaining personal contact and convincing others takes time. 7 ibid., p. 40. 8 ibid., p. 21. 9 ‘ Activation ’ seeks to encourage action that diminishes apathy and stimulates a person ’s mind and body. This approach is often used in an overly clinical way that renders people into patients instead of accepting them as full human beings. 10 Schultz, Oliver ( 2015 ) : Internal final project report. Wiesbaden. 11 Especially when you consider that there are people who are convinced that it is completely impossible to get more than three people living with dementia into one room, or that we should not try anything new and unknown under any circumstances. 12 While I do not want to deny the change and joy that experiencing culture together can bring, I believe we should ask whether this specialisation is viable and sustainable in the long term if kept separate – or whether cultural institutions as well as audiences should become more open in order to enable participation in more general events as well. If culture for people with dementia remains a singular and disconnected enterprise, does that make it into something that is similar to the idea of the ‘ dementia village ’, and thereby contradicts the goal of dementia-friendly communities ? Of course, similar questions can, and should, be asked in relation to activities in other projects as well. 13 This story was told by a volunteer attendant of the Inklusion durch aktive Beteiligung project in Munich as part of our Erlebtes bewegt ! call to share experiences. 14 The validation approach is both a method and an attitude in how we treat people with dementia. It was developed by the US-American social worker Naomi Feil, and is based on the basic tenets of Carl Rogers ’ Client-Centred Conversation. Its aim is not to cure, but to provide relief.

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Verena Rothe 15 See Coenen-Marx, Cornelia ( 2014 ) : Die Seele des Sozialen. Diakonische Energien für den sozialen Zusammenhalt. Neukirchener Theologie. 16 The Esslinger Aufruf is quoted in the first section of the book, written by Reimer Gronemeyer, and can be signed online : www.aktion-demenz.de / besser-leben-mit-demenz / esslinger-aufruf.html 17 Multipliers are people who are in a position to amplify the effects of a project, e. g. by spreading information to others, etc. 18 Additionally, we need to ask which knowledge we want to convey in the first place. This becomes clear when we consider how vague and uncertain such knowledge can be and how different people and contexts can be. 19 URL  : http  ://banterkirche.de  /  encounter  /  youth [13 April 2015]. The names marked with asterisks have been changed. 20 See also the section on volunteering. 21 A local woman chosen to promote asparagus at fairs and pageants in some areas of Germany. 22 This is linked to the section on press reactions and openness below. To combat this, it will be necessary for the media to cover the activities of people in a more advanced stage of dementia rather than only reacting if you can present someone with dementia who still regularly goes snowboarding at the age of 88. 23 These dementia villages are specialised institutions that include an ‘ artificial village ’, including various areas, a village square, and a supermarket with staff acting as cashiers or chamber-maids. Cf. Demenz Das Magazin, issue no 14 / 2012 on ‘ Wohnen ’ ( ‘ Living ’ ). 24 Lévinas, Emmanuel ( 2012 ) : Die Spur des Anderen. Freiburg, p. 120. 25 These are schools in which classes run all day, which is not the norm in Germany. Additionally, while secondary education in Germany is usually divided into three branches differentiated by subject focus and, to an extent, social class, these schools combine all three types. 26 The project sought exchange with other funded projects on this topic ahead of time, which is particularly positive from the perspective of Aktion Demenz. 27 You can find further information on the project and its logo in the section ‘ Dementia concerns us all ! ’ below. 28 The original plan was slowed down due to the original project initiator ’s retirement and structural changes in the administrative office, which is a common reason for delays. 29 Jurk, Charlotte ( 2013 ) : Bewertung Berichte. Wiesbaden, p. 2. 30 This dialogue shows how sometimes, we can totally miss the interests and needs of the people affected, or how there are very different opinions on the extent to which such meetings are useful. 31 In Germany, people receive different amounts of care benefits depending on which care level they are accorded, based on how much assistance / care they require.

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People in the community living with dementia – the programme 32 I do not mean to downplay dementia. However, people repeatedly report that their relationship to a parent has improved because of dementia. Similarly, people living with dementia may say that they perceive and live their lives much more intensely because of dementia. 33 Statement by Richard Taylor, Frankfurt, Germany, 15 April 2011. http ://www.demenz-support.de / wir_wollen_mitreden / statement_taylor [14 February 2015]. See also : Taylor, Richard ( 2007 ) : Alzheimer ’s from the Inside Out. Health Professions Press. 34 Particularly in regards to the total number of people affected, and to services for everyday life. 35 The projects in question are the Ontmoetingscentrum and the Multifunctioneelcentrum de Edelsteen in Amsterdam and in Sonnweid in Wetzikon in Switzerland. 36 Cf. Weyerer, Siegfried ( 2005 ) : Gesundheitsberichtserstattung des Bundes. Volume 28. Altersdemenz. Robert-Koch-Institut. It can also be accessed at http :// www.demenz-leitlinie.de / index.html [4 August 2014]. 37 Drzezga, Alexander ( 2014 ) : Frühdiagnose des Morbus Alzheimer. In : Deutsches Ärzteblatt. Vol. 111, Issue 26. p. 986. See also Draper, B., Peisah, C., Snowdon, J., Brodaty, H. : Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimer ’s & Dementia : The Journal of the Alzheimer ’s Association. 2010, pp. 75–82. 38 We age from the moment of our birth, and by the time we are 20 or 25 years old, we already begin to exhibit mental and physiological changes. Perhaps, although this is a deliberate exaggeration on my part, we might one day say that this, too, is a ‘ really early stage ’ of senile dementia ? 39 Cf. Schwalen, Susanne und Hans Förstl ( 2008 ) : Sechs Fragen zur Alzheimer-Demenz : Wissen und Einstellung in einer repräsentativen Bevölkerungsstichprobe. Neuropsychiatrie 22. pp. 35–37. 40 Bittrich, Dietmar ( 2007 ) : Ich werde lächeln … Endstation Erleuchtung – oder vielleicht doch nicht ? Der Autor sinniert über die abnehmende Gedächtnispräsenz des alternden Ichs. Kolumne-Spuren, Winterthur / Schweiz. Saturday, 9 June 2007. 41 Investing into elderly care is openly advertised as a good business decision, and there are even cases in which ‘ investors ’ that were formerly part of the red-light scene turn to building and managing care homes. Combining these areas might even open up new opportunities for making a profit, but talking about this would go too far here. 42 Stolze, Cornelia ( 2011 ) : Vergiss Alzheimer. Die Wahrheit über eine Krankheit, die keine ist. Köln, p. 7. 43 Cf. Radebold, Hartmut ( 2014 ) : Die dunklen Schatten unserer Vergangenheit. Hilfen für Kriegskinder im Alter. Stuttgart. 44 Cf. Trivedi, Bijal ( 2012 ) : Food for thought : Eat your way to dementia. New Scientist.

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Verena Rothe 45 Cf. Langemak, Share ( 2013 ) : Wie Aluminium Nervenzellen in den Tod treibt. http ://www.welt.de/114269537 [29 July 2014]. 46 Cf. Spitzer, Manfred ( 2012 ) : Digitale Demenz. Wie wir uns und unsere Kinder um den Verstand bringen. München. 47 Frances, Allen ( 2013 ). Saving Normal : An Insider ’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. Harper Collins. 48 Cf. Glaeske, Gerd, et al. ( 2013 ) : BARMER GEK Arzneimittel-Report, Berlin. 49 This is said to be the case amongst the Native American Choctaw. 50 Cf. DeSS orientiert 1 / 08 – Demenz weltweit : Eine Krankheit im Spiegel von Kultur( en ). http ://www.demenz-support.de / Repository / dessjournal_1_2008_ demenzweltweit.pdf [13 April 2015]. 51 Without discussing the degree to which specific activities are or are not useful, they are, of course, another way of earning money, creating needs, and finding ‘ research objects ’. 52 Understandably, thoughts like these are expressed again and again. 53 For example, the model project Demenz – Entlassung in die Lücke ( ‘ Dementia – discharged into the gap ’ ) in Hesse is concerned with the interface between emergency care hospitals and outpatient care. It is organised by the Diakonisches Werk Gießen, a Protestant social welfare organisation, with academic consultation from Dr Andrea Newerla. The project aims to improve the situation of people with dementia in the city and region of Gießen via various approaches, and in co-operation with various actors. Sensitising the public is one particularly important facet in making the inhabitants of Gießen more aware of the topic of dementia, and perhaps achieving a change of perspectives towards a dementia-friendly community. See http ://www.diakonie-giessen.de / de / demenz-modellprojekt.php 54 See chapter 4.5. 55 Jurk, Charlotte ( 2014 ) : Menschen mit Demenz in der Kommune. Wiesbaden, p. 19. 56 Action and understanding are also important regarding people with early-stage dementia who are still doing paid work. The third part of this book will look at care in more depth. 57 The German ‘ Schützenvereine ’ are rifle associations in which shooting is closely linked to honouring local traditions. 58 See the section on symbolic action and raising public awareness. 59 See the section ‘ E xperiences make a difference ! ’. 60 Available at http ://www.bosch-stiftung.de / content / language1/downloads / ­ Broschuere_Framing.pdf ( German ) and https ://www.kbs-frb.be/~/media / Files / Bib / Publications / Older / PUB-2060-Framing-and-reframing-UK.pdf ( English ). [13 April 2015] 61 In fact, we received feedback during the calls according to which projects were

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People in the community living with dementia – the programme worried that applying to the funding programme might prove disadvantageous for them because differences regarding responsibility for certain areas might arise once they shared their application with the local authorities. This also demonstrates thinking – and acting – in terms of competition between municipalities and projects. 62 See, for example, Pinl, Claudia ( 2013 ) : Freiwillig zu Diensten ? Über die Ausbeutung von Ehrenamt und Gratisarbeit. Nomen Verlag Frankfurt. 63 http ://www.angehoerigenberatung-nbg.de / index.php ?id=1057 [14 February 2015] 64 Cf. Stadt Arnsberg 2011. You can find a ( German-language ) manual for communities by the Arnsberger Lern-Werkstatt Demenz at www.projekt-demenz-arnsberg.de. 65 See e. g. Hauptbericht des Freiwilligensurveys 2009 – Zivilgesellschaft, soziales Kapital und freiwilliges Engagement in Deutschland 1999–2004–2009. TNS Infratest Sozialforschung, Munich 2010. 66 Hartz IV is part of a series of reforms to Germany ’s unemployment benefit system. The term ‘ Hartz IV ’ is used particularly to refer to long-term unemployment benefits. 67 See The Scottish Dementia Working Group http ://www.sdwg.org.uk. 68 Jurk, Charlotte ( 2012 ) : loc. cit., p. 22. 69 In one case, a private individual was supported with a small sum of money by her local government in order to advance activities in the home town of her mother with dementia as well as try out to what extent an individual can effect change with small sums. However, the great majority of this sort of funding is restricted to entities with legal personality. 70 The project Gaben und Aufgaben demenzsensibler Kirchengemeinden ( ‘ Gifts and responsibilities of a dementia-sensitive church community ’ ) in Cologne also realised this : ‘ The extent to which it will be possible to produce sustainable long-term solutions based on the processes started in this project is a crucial question. For this purpose, the individual activities have been prepared and implemented not only with the local senior pastors, but also with part-time staff and volunteers. This was done in order to increase the number of key persons in charge and strengthen local multipliers from the start. The concept proved to be successful, and we hope that it will continue to be a foundation upon which we can continue to enhance basic sensitivity and awareness in the respective communities without an external project structure. ’ 71 Jurk, Charlotte ( 2013 ) : loc. cit., p. 4.

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BETWEEN REFLECTION AND CONCRETE ACTION GABRIELE KREUTZNER

‘ What we need is sobriety: pessimism of reason and optimism of will ’ Antonio Gramsci

1. Aktion Demenz – how far have we come ? We have come through more than eight years of a ‘ different ’ approach to challenges and infirmity in old age, and particularly to impairment of a cognitive character. What has been gained by our efforts ? What has Aktion Demenz achieved ? Manifestations of success in the form of raised ‘ like ’ thumbs have not been, and are not, our thing. Funds have not allowed for an accurate review and documentation of each and every report on the subject of dementia-friendly communities that has appeared in newspapers, weeklies and other local mouthpieces. Whatever time was available to us has been ( and is ) devoted to more essential tasks. In any case, the effectiveness of Aktion Demenz cannot be expressed in a form or to an extent suitable for public-media attention. The question of what has been achieved is a tricky one all right. It seems inevitable for this question to stoke the vision of linear progress, of things secured for all times which can no longer be rolled back. Yet the everyday experience is quite different : whenever a risky situ241

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ation for a group branded as ‘ other ’ ( as in the case of people with dementia ) has been defused successfully, some new crack appears elsewhere, and another set-back looms. Apart from that, the question concerning impacts might lead people to imagine that Aktion Demenz has sought to reach a predetermined goal, or predetermined results, or a measurable outcome. However, Aktion Demenz was and is about something else : about getting involved with the realities of life, about an open process of providing impetus, about exploring new questions, about communicative action and negotiation and about open-ended change. How to judge what has been achieved ? Where did we stand at the time ? In reflecting on such questions, one ’s own memory frustrates with proper regularity – as a reliable support it is only of limited use. It plays tricks on us, by rearranging, distorting, and masking details that do not fit an established pattern. This is where documents may offer reliable safeguarding. In Reimer Gronemeyer ’s press statement on the association ’s founding in May 2006, one sentence gets to the heart of the endeavour ’s central and continuous intention : ‘ [ ] Aktion Demenz sees its task as creating more sensitivity to this issue [i.e., dementia, gk] on the part of the public, and as opening up new paths. ’

Admittedly, the term ‘ sensitivity ’ is open to a variety of interpretations. In the early days of Aktion Demenz, the term suggested, among other things, a clear turning away from an operative conception of education or awareness-raising in the sense of announcements ( or, somewhat more cautiously expressed, of communication ex cathedra ), of findings and technical matters, primarily of a medical or health-related nature. Sensitization was to aim at communication, particularly at non-hierarchical exchanges and interaction. ‘ Meeting as equals ’, thus sounded the often-cited, but all too seldom achieved, orientation of communicative activities. On this point, however, we do not want to anticipate. It can be a long way from the will to innovate to its implementation in concrete actions. Indeed, we did not start with a detailed program, and the precise way of proceeding with regard to our initiative was still wide open. In its dialogue with the Robert Bosch Foundation, the new organization ’s freshly appointed governing board had agreed on possible thematic priori242

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ties for its involvement in the coming years. In the already mentioned press statement, the topic of ‘ dementia-friendly communities ’ was actually cited first, although at that time it was not assigned any leading rank among the work priorities adopted. As an umbrella label under which all efforts of Aktion Demenz were to be grouped, the ‘ dementia-friendly community ’ evolved as such only after the decision to make this our first topic. This happened in the summer of 2006, and implied opening up a whole new and pristine field – one that could be used to spell out, implement and further develop those initial positions that emerged from the initiative workshop Gemeinsam für ein besseres Leben mit Demenz / Together for a better life with dementia. 1.1 Perspectives and positions On the occasion of the association ’s founding, Aktion Demenz defined the initiative ’s intentions which, in retrospect, sound somewhat unidimensional. They were based on a series of consensual positions that had been elaborated during two years ’ work in the thematic workshops of the Robert Bosch initiative. This laid the foundation for the joint action that showed itself to be sustainable. Based on the press release issued at the association ’s founding, it is possible to paraphrase those positions that were perhaps the most important ones : 1. For social, cultural, and economic reasons, we need a new societal approach to the issue of dementia, and a different ‘ comprehensive care and integration ’ of those affected by the condition. 2. It is time to search for alternatives to the existing practice of providing appropriate support. The concept of mere service provision with its one-dimensional conception of the person in need of care / support in the exclusive terms of a user-consumer is both a dead end and unsustainable. Like everyone else, people with dementia need others in order to remain in touch with life ( as we put it today ). 3. Civil society is the magical word that designates the new point of departure. Less abstractly, and expressed with a motto coined at a later point in time : ‘ Dementia concerns all of us ! ’ This suggests that dementia is an assignment for society as a whole, and as such it should 243

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4.

5.

6.

7.

8.

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also be understood as a challenge by each and every citizen of either gender. For Aktion Demenz, this meant ( and means ) that we must stimulate a willingness to act – both among experts and citizens of either gender. Aktion Demenz intervenes to encourage and strengthen both civic and volunteer involvement. The ‘ one-sided, pathological image of dementia ’ must be overcome. It must make room for a kind of thinking which equally recognizes, respects and considers the phenomenon ’s social, medical, and civic dimensions. If undertaken successfully, this can support the development of a ‘ new culture of dealing with dementia ’. The development of such a new culture relies on innovations within civil society with regard to caring for those who live with the condition. In this respect, the concern is on finding new ways. On the other hand, however, there is also a focus on looking for already existing alternatives both in contexts of daily life and in institutions. In any case, or so was the assessment then, the ingenuity and inventiveness of citizens of either gender must not be underestimated. This does not mean, however, that the responsibilities, set and codified by society, should be set aside. Once again : the intention is societal renewal, and with regard to the civil-society side, an expansion of perspectives, actors, and of possibilities for action. It is also about possibilities of new joint actions on or between different levels, or between actors who otherwise would not be necessarily in contact with one another. Whenever it is unavoidable to remove people with dementia from their familiar surroundings in order to cater to their welfare in a different ( institutional ) setting, we must explore new paths characterized by a new joint action of those affected, their relatives, experts, and civically committed persons as ‘ equals ’. Formulated ex post facto, it is not about instrumental action. Rather, it is about jointly exploring new life opportunities with those who can no longer live their lives as they used to, based on their own capabilities and energies and those of their familiar social context. It is also about providing the necessary portion or degree of supportive care. It is equally desirable, and worth promoting, that ‘ citizens of either gender become involved with the issue of dementia, even though they

Between Reflection and concrete Action

themselves or their relatives are not directly affected by the condition. ’ Finally, thus the founding declaration, we face the task of inventing ‘ new networks of friendship ’ in our so-called postmodern society, and with it to reinvigorate and strengthen one ’s own ( those of citizens of either gender ) capacities in the social sphere. 1.2 The first steps : interconnections Whereas the second part of this book is devoted to a detailed presentation of the promotional program Menschen mit Demenz in der Kommune ( People with dementia in the community ), that account must be completed here to the extent that this program would have never come to pass without the first successful steps taken by Aktion Demenz . Thus the promotional program, and the developments associated with it, have antecedents that are significant for an understanding of the path traveled towards their implementation. With regard to the question as to where the efforts for a better life dealing with dementia in situ have led so far, Aktion Demenz remains constantly at the center of attention, and yet it never stands there alone. When in the pages that follow activities and efforts by other organizations and connections are mentioned, this is not to credit their merits to Aktion Demenz , but rather because developments occurred precisely because of a flow of interconnected activities. In general, the function of Aktion Demenz was, and is, largely one of providing impulses, and, wherever possible, of facilitating the expression of viewpoints or positions differing from the prevailing ones. At least in part, this function is owed to the fact that Aktion Demenz is only a small citizens ’ group. Moreover, it is one which has not always and everywhere been understood adequately in the fields of practice related to the issue of dementia. As mentioned, Aktion Demenz stepped in with the intention of sensitizing to the issue of dementia. ‘ Sensitizing ’ is a concept that originated in the realm of photography where it denoted an increase in the sensitivity of photographic film material. In the figurative sense, its use by Aktion Demenz suggested more sensitivity and, thus, more emotional responsiveness to those affected by dementia-induced changes. We must not forget that in Germany, this was the time in which the person-centered approach began to question the claim to exclusive validity of the biomedical perspective in the field of 245

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dementia. Therefore, the call for more sensitivity first meant ( and means ) the insistence on perceiving and recognizing the individual with dementia as a human being and a person who has to live with the condition instead of seeing only the disease and the deficits associated with it. More sensitivity meant, in the second place, to increase awareness of the distinctive features of people changed by dementia, and to perceive these features as resources, which, in our hypercognitive society, are often underestimated if not totally disavowed. Finally, sensitizing, or more sensitivity, meant paying greater attention to the reality that people with dementia are citizens, and therefore are fellow humans endowed with rights and duties. There is, therefore, a societal and civil obligation to ensure the respect of these rights. All these dimensions of more sensitivity towards people with dementia and their concerns found their accurate expression in the motto of the initiative workshop Gemeinsam für ein besseres Leben mit Demenz ( Together for a better life with dementia ). This objective and its implications were then to be brought to the public and into public awareness as Aktion Demenz. At the outset, however, there was little on hand with which to draw this public attention, at least not in media form. What proved to be actually helpful was to make use, at the outset, of similar local efforts that were started at the same time. In parallel to the initiative workshop of the Robert Bosch Foundation, and using a combined staff, a small team of committed citizens ( most of whom active in cultural and social areas of their mutual communal context ) were involved in the design of a dementia campaign in the city of Ostfildern ( ca. 37,000 inhabitants, with six relatively autonomous city districts ), located near Stuttgart. This campaign took place between October 2007 and May 2008 under the title of Wir sind Nachbarn ( We are neighbors ), and met with great resonance, locally as well as beyond. The dementia campaign in Ostfildern was not only one of the first relevant local actions, but it was also an especially successful example of this form of public-oriented intervention. This was so because, there, they succeeded in an outstanding way and within a time-restricted effort, to spark off a debate on dementia that included the overall community, and to keep the flame burning. The local activists had prepared themselves for the campaign over a long time and with great meticulousness, and they consciously positioned the campaign as part of a long-term expansion of their efforts in the com246

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munity. In other words, no blind activism, but a rather well thought-through way of proceeding. We must also be aware, however, that this campaign was conceived, organized, and executed in a communal setting that for many years had devoted special attention to the topic of old-age assistance or geriatric care ( to use the introduced, though not particularly felicitous, technical term ). The local situation also included, with regard to resources, a comparatively lucky location vis-à-vis the support of a foundation active in the field of dementia and with ties to the city. This privileged local setting ( which in no way diminishes the merit of the actors ) helped to advance a climate in which the professional commitment of motivated citizens of either gender to older people reliant on support – in particular those with dementia – could find an outlet, and where a solid reserve of volunteer commitment could be built up and promoted. Under far less favorable circumstances, Aktion Demenz tried its first steps in the direction of a dementia-friendly community in Giessen. Here, Aktion Demenz initially amounted to the combined efforts of Reimer Gronemeyer and Verena Rothe. The beginnings were not exactly promising : in the communication with the mayor and the municipal administration, one initial experience was that the issue of dementia collided with the sleek, youthful-dynamic wishful image of an ambitious university town. Unimpressed by this, they ventured forth, together with students ( from a relevant Gronemeyer seminar ), with the campaign Weißt Du noch ? Knoten im Taschentuch ( Do you still remember ? A knot in the handkerchief ) in the city ’s pedestrian zone and, thus, into the local public scene. Additionally, visions were elaborated as to what Giessen might, and should look like, so that people with dementia, and those who accompany them, can lead better lives. This occurred at the level of exchange and of concrete collaboration, in the context of a town hall meeting ( a day ’s event with interested citizens ). Owing to the less favorable local preconditions, the developments in Giessen are a good example of how existing weaknesses or local disadvantages can be overcome by available strengths ( in this case, motivation, commitment, a certain continuity of action, successful cooperation ). The dementia campaign conducted by Gronemeyer, Rothe et al. in Giessen generated, in the form of a spin-off, the Initiative Demenzfreundliche Kommune – Stadt und Landkreis Giessen (Initiative for a dementia-friendly community – City and District of Giessen). To this day, this local merger pursues, actively and inde247

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pendently, the objective of sensitization and of raising greater awareness and willingness to act. More sensitivity and openness to the issue of dementia – this was also the aim of local workshops organized by Aktion Demenz which, among o­ ther goals, were designed to boost regional and interregional networking on a selective and exemplary basis. In this respect, a special focus was, above all, on the so-called new Federal States ( Tr : ex-GDR ) with their particular historical and social conditions, and on the wish to devote special attention to this region, despite a lack of local institutional roots. The first, instructive trial runs occurred in 2007 in Luther ’s city of Wittenberg ( Sachsen-Anhalt ), where Aktion Demenz was able to gather experience with a mentality marked by other historical antecedents. This was followed in 2008 by an initiative workshop in Rauischholzhausen ( Hesse ), and by a further one in 2009 in Berlin. A significant milestone in the development of the campaign was the polemical publication Demenz und Zivilgesellschaft ( Dementia and Civil Society ) by Reimer Gronemeyer and Peter Wißmann. The book appeared in 2008 and met with great resonance in circles concerned with dementia and with improving the situation of those affected by the condition and of those who accompany them. It also created the background against which the rather more practical efforts of Aktion Demenz were ( and are ) to be understood. Can we in any way conceive of where we stood intellectually in those days of local public discussions ? Any ‘ objective ’ attempt in this respect would be as much presumptuous as it would be futile. Maybe personal recollections might trigger comparative retrospective analyses. The first remembrance goes back to the year 2002 and to an event when Demenz Support Stuttgart GmbH ( my professional ‘ home ’ ) celebrated its inauguration. Following the opening ’s official part, the participants, who stemmed mainly from the professional side of the field of dementia, were invited to a small ceremony in our newly rented offices. There, a pair of panels on the walls invited contact and comments. On one of the panels was the question : ‘ What do you wish for, should you ever become demented ? ’ As it turned out on the day after the event, only one answer was given to this. This was expressed rather tersely : ‘ A bottle of red wine every day ! ’ For a circle of professionals closely involved with the issue, this was a remarkably meager yield, which led ( and leads ) one 248

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to assume a strong personal distancing, if not as much as a denial, in relation to an affliction that lies in one ’s own future. Then, a clearly different, second memory snippet : in the course of the dementia campaign in Ostfildern ( 2007 / 08 ), a public inquiry asked community members what was most wanted if personally affected. On this ­occasion, the question was answered many times and with a rare consensus : with the wish for an understanding social setting, sympathetic towards one ’s person, and in a position to take in and accept one, just as one is, at the particular point in time. This is not to claim any kind of progressive line between the two moments. It is more a matter of a tendency associated with the idea of dementia-friendly communities that has asserted itself in crescendo since the days of the campaign in Ostfildern in many places and in entirely different connections. Thanks to the central message of the campaign at that time ( ‘ We are neighbors ! ’ ), and to the new experiences and encounters that were facilitated in Ostfildern in part via unusual actions, a climate was created whereby the potential of being personally affected by dementia could be thought about and articulated. The potential, too, for each person to arrive at the point of thinking of the essential aim of a ‘ dementia-friendly setting ’ in and of itself, through personal discovery and formulation. ‘ Dementia-friendly ’ : that would be, nay, that is a setting where I am accepted and respected in my special mode of existence, a place that stands before me, neither hostile nor indifferent. A place where I am welcome, with my strengths and my weaknesses. A place in which one is ready to struggle quite tangibly, through innovation and in full knowledge of all too frequent failures, to achieve a civil attitude and a humane conduct – precisely towards those who have to rely to a special extent on such an attitude and its observance in everyday practice. Utopia or an achievable social environment ? It is, in any case, a guiding vision which comes a considerable step closer to reality through constant and persistent action and negotiation. 1.3 ‘ Aufbruch ! ’ ( ‘ New Beginning’ ), Esslingen am Neckar ( 2008 ) A milestone on the journey towards a better life coping with dementia was, and is, without a doubt the event Aufbruch !( New Start or New Beginning) ( subtitle : In our community : together for a better life with de249

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mentia ) which took place in November 2008 in Esslingen am Neckar. For Aktion Demenz, this key event would have been beyond its means without Demenz Support Stuttgart as a cooperating partner, since our citizens ’ initiative was, above all, not equipped even in terms of staff for such an organizational challenge. The Alzheimer Society of Baden-Wuerttemberg also collaborated as yet another partner. On this occasion, what was established successfully was the working principle of cooperation with local partners ready for involvement as a basic premise – not always easily adhered to – for the activities of Aktion Demenz. Together and with the assistance of a whole series of committed individuals from the initial ­Robert Bosch initiative, it was decided to embark on the venture of orga­ nizing a large event on a hitherto unknown theme in Esslingen. Not forgotten is the worry : is there enough content for the theme, given the sparse initiatives so far ? In general, will there be enough people whose interests have been catered to so that the objective in the great city auditorium will not seem defeated from the start ? Will the participants accept Nothing is stronger than an idea whose time has come. the format of the contents and the chosen forms of communication ? Still, the event managed to cope with unreasonable demands such as an interview and exchange session with about 20 persons ( which turned out to be fascinating ). The event also offered a few unusual items for that time, such as an agitprop play, an authors ’ discussion in an intimate setting, and a dance in the conference hall. The worries were unfounded : the efforts were rewarded, and the Aufbruch ( New Start ) was true to its name and sent a ‘ signal of hope ’ ( thus Thomas Klie, member of Aktion Demenz ’ executive board ). What was the reason for this success ? Was it the activists ’ considerable efforts and enthusiasm ? Certainly, in part. Or was it that by meeting in Baden-Württemberg, Aktion Demenz chose a setting with a strong civic tradition in matters of civil-society involvement and volunteering ? All of this may have played a role ( a lthough participants came from many parts of Germany, and even from Austria and Belgium ). Surely the most important reason was and is, however, that in the circles of committed professionals and volunteers from the fields of the community, social action, 250

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and dementia, the time was ripe for this step – as the retrospective interpretation has it. Aufbruch ( New Start ) gave expression, at the right moment, to various impulses, such as the wish and the will of committed professionals and ­volunteers to proceed against the stigmatization and marginalization of people with dementia. The event also articulated the demand for a better approach to the issue of dementia in terms of assigning tasks throughout society. There was an additional impulse, which, as the event urged, should be addressed in the immediate vicinity. What Aufbruch ( New Start ) also made perceptible, and as has been repeatedly confirmed later on, were – and are – the power and the immense readiness for involvement on the part of numerous people who are active in the domains of social affairs, aging, and health care in cities and local jurisdictions. Over and over again, I ( as well as others ) have come across reports on, or references to, health-care professionals who are voluntarily involved in their own field in their spare time because, as in response to an omen, this way they can finally act according to their vision or perceptions. This is a paradox of a special kind : precisely in the social fields, where bad working conditions, high rates of sick leave, and great frustrations are to be found, and where people are most severely worn-out, it is also here that apparently an amazing potential energy and commitment can be found. Perhaps it is a unique feature of this particular section of frontline care. Or, possibly, a peculiar feature which, with the sociali­zation of a new generation of professionals, may wither away or gradually disappear. In any case, a phenomenon to which we shall return at a later juncture. The two days in Esslingen sent a signal of hope and of change. At its bottom line, the message conveyed by the Aufbruch ( New Start ) was this : when it comes to improving the lives of people with dementia and to the way in which we cope with the condition in our communities on the level of the community, what actually could be done and achieved goes far beyond our ordinary thinking. For Aktion Demenz, the event ’s success was an important confirmation of being on the right path. Within the circles and network concerned with the issue, news traveled very fast : something new, exciting, and surely important, too, is happening here. Another important point emphasized by the Aufbruch ( New Start ) was that it revealed the might of true stories and personal narratives. With the 251

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latter ’s help, the goal of creating dementia-friendly communities came one step closer to being reached, and also acquired an unmistakable face. Two stories told on this occasion seem particularly worthy of being preserved and diffused, which is why they are granted space at this point. A hospitable inn, a taciturn guest Here is what Herta Eisfeld told us : ‘ You asked me what I need to cope with in my daily life with my husband, who has lived for many years with dementia ? Well, I can tell you : a lot. But what exactly must be coped with greatly differs in the various stages of the disease. At the time when my husband was still very active, it was very important for me that the whole locality was involved. I am quite active as a volunteer, and from that I know a lot of people in my small community. So I went out and made an agreement with the local inns : we agreed that when he came, [as] he could no longer talk by then, he would be served the day ’s lunch and a glass of red wine. I left our telephone number there, because he was no longer able to handle paying his bill. This worked fine until one day a new waitress worked day who didn ’t know my husband and my agreements with the inn. As a result, when my husband wasn ’t served his lunch, he went up to a lady and, without much ado, he took away her beer and schnitzel, and ate it up. This was the end of a quite successful strategy and cooperation. Actually, the local eateries were quite helpful, and so were the local merchants who knew him and brought him back, the policemen [...] I myself was amazed about how friendly people dealt with us. And also about how much helpfulness we encountered. But then, at the point when it came to organizing care and looking after him, that was different and much harder, because there the market has been swept clean, and it is quite difficult to find good people. [...] I also have ... I have many contacts, a network, I have been, for more than 20 years, in the bedside watch – I do volunteer work in a nursing home – I already did this before my husband got sick, and I ’m still doing it. 252

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I know many people there, who also visit him. This setting is still there. His own circle [of friends] has crumbled away. These were keen competitive sportsmen, they couldn ’t put up with it. My circle, which was quite socially oriented, that ’s still holding up. ’

When Herta Eisfeld told the story of her husband, she had been caring for him for fourteen years. She was, and still is, a tirelessly committed person, and, among other activities, she is active on the governing board of the Alzheimer Society of Baden-Wuerttemberg. Handbags Gabriele Post, manageress of a department store branch, reports : ‘ We have a woman work colleague, long since retired, who worked for us for many years. The center of her life is actually our subsidiary of Karstadt ( Tr : department store chain ). She visits us, at least three to four times a week she is with us. She needs this, that ’s the pleasure she has. She then also shops, excessively, and always the same – in this case especially handbags that she buys. The work colleagues know her, of course – well, this is where the subject of openness is so important ... Of course, we take back the handbags, because it is pointless that handbags pile up at home. But buying them is her pleasure, she comes to us very often, she shops, our colleagues know her and we know about it, but we have also discussed the matter with her relatives. The relatives came to us, and therefore the subject of openness is so important, to talk about it. We have said : OK, let ’s face it and find joint solutions. I am, of course, glad when I sell a lot, but it ’s of no use when coming to us is the only pleasure a former work colleague has, the pleasure to once again be in contact with the department store, to watch life in the store, and, of course, to shop. We try, of course, to see to it that our sales ladies are in on it ahead of time, but we are quite pragmatic and say to her relatives ‘ no problem, just come every two or three weeks, and let ’s take everything back again ’, it ’s not an issue at all. But it is important to know about it.

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We are a service-oriented business, and when talking to customers, service includes precisely to touch on what we can do for them. And if this is an issue, then it ’s important and we discuss it. Of course, we also have trainings, on what is our distress, what happens on the sales floor. And of course we can ’t impose the training from top down, but it comes rather from the customers : What do they expect from a branch, from a department store, from the economy ? And here we must listen. And this we do, and then we will of course step in as well. In this respect, the colleagues deal with it quite openly – they even request it. They ask me, we discuss it, how do we handle things like that eventually, so that all of us also have a bit of security, some firm ground on which to base our actions. Because for a sales person it ’s not always so simple to decide, can I accept this return and so on ... No, they request it, they come to us, we discuss it, and we want it to be the practice on the sales floor as well. ’

1.4 And that ’s how it went on The Esslingen Aufbruch ( New Start ) produced a whole series of concurrent developments : The city of Esslingen was inspired by the Aufbruch ( New Start ). Having taken to heart the advice of the activists from the neighboring municipality of Ostfildern, the city set out thoughtfully. With an eye on the goal of clarifying for the city ’s citizens what might be publicly effective actions regarding the issue of dementia, a workshop on the future was planned and implemented. In this context, a coordinating group with citizens ’ participation was created. The group conceived a dementia campaign entitled aus. gedacht- ich, du, er, sie Esslingen denkt weiter ( thought.out- me, you, he, she Esslingen thinks ahead ). The basic planning principle was openness to a broad range of ideas and approaches. Simultaneously, however, the coordinating group set great store, by the sustainable effectiveness of the campaign, and on the inclusion of as many societal groups and layers as possible. A persuasive concept, an exemplary implementation – with these, the city of Esslingen ’s application was also persuasive later, in the context of the call for tenders Menschen mit Demenz in der Kommune ( People with dementia 254

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in the community ). In October 2010, barely two years after the Aufbruch ( New Start ) conference, the launching event of the Esslingen campaign was held. After the successful campaign, the efforts continued : the city of Esslingen is on its way. The idea spreads beyond the borders, primarily in the German-speaking countries

Word about Aktion Demenz had already spread even beyond borders and good contacts had been set up with an initiative in the Austrian region of Vorarlberg. The team there had asked permission to adopt the name ‘ A ktion Demenz ’ and with proper permission founded Aktion Demenz Vorarlberg in 2007. The good relationships established then proved to be permanent and functional to this day. There still is practically no major event of Aktion Demenz as well as of Demenz Support Stuttgart to take place without several committed persons from this region. In 2012, Aktion Demenz Vorarlberg was awarded a European prize for its dementia campaign which had been based on the concept of dementia-friendly communities. Esslingen am Neckar becomes a pioneer of the idea of dementia-friendly communities. From Belgium, the King Baudouin Foundation was a guest at the Aufbruch ( New Start ) conference by arrangement of the Robert Bosch Foundation. Both Foundations are members of EFID ( European Foundations Initiative on Dementia ). Taking its cue from the positive response to the promotional program People with dementia in the community, EFID launched its first Paneuropean tender styled Living well with Dementia in the Community in 2012. ‘ Dementia as a social challenge ’ – leap to the EU level ?

Motivated by the Aufbruch ( New Start ) in Esslingen, the King Baudouin Foundation provided new impetus for increased civil-society commitment to people with dementia in Belgium. Together with other actors, the Foundation also undertook the effort to raise the issue of dementia to the level of 255

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EU ‘ summit meetings ’ during the Belgian EU Council presidency the second half of the year 2010. Within the framework of a high-level EU conference, ideas were exchanged over a good approach to dementia in society. Among the speakers and discussants were also persons who live with dementia. Thus, among others, James McKillop, long-serving chairman of the Scottish Dementia Working Group, whose work had also been described as part of the Aufbruch ( New Start ) conference, took on an active role at the EU conference. Something new is on the way : self-articulation by people with dementia

The cooperating partner Demenz Support Stuttgart, in the context of its own working priority Hearing the Voice of People with Dementia, took up the developmental trend of ( political ) self-representation and self-articulation by people with dementia, a trend that had become somewhat visible at the Aufbruch ( New Start ) conference. Within the team of Demenz Support, this resulted in research and investigations throughout Germany. In actual fact, this finally led to the publication Ich spreche fuer mich selbst ( I speak for myself ), and also to the conference Stimmig ! Menschen mit Demenz bringen sich ein ! ( It ’s Only Fitting ! People with dementia get involved ! ) For the first time in Germany, people living with dementia-related changes stepped into the public spotlight in such a prominent way and with such strong attention from the media. Aktion Demenz participated in the two day conference as a cooperating partner. A city gets going : the Mannheim campaign Vergiss mein nicht ( Forget me not ), 2009

In Mannheim, Aktion Demenz together with the Geriatric Psychiatry Forum and additional partners, ventured unto new ground, possibly supported by an additional boost from the Aufbruch ( New Start ) – although already set on this course previously. With a wide range of events, the coalition partners sought to raise the issue of dementia in the city via the campaign Vergiss mein nicht ( Forget me not ). The motto ‘ Dementia concerns us all ’ indicated the main civic thrust. The numerous participating groups and actors had opted for an unusual approach – a converging march as a kick-off, a concert 256

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on the evening of the opening ceremony with the Mannheim blues-and-rock singer Joy Fleming, a streetcar publicity action, as well as a wide variety of other cultural offerings and briefings. The events were spread throughout the city and to the various city sections : each event organizer was directly responsible for the financing, execution, and contents of his / her part of the program. Aktion Demenz was present as an external cooperating partner. Together with the city ’s Office of Social Planning and the Geriatric Psychiatry Forum and under the auspices of the City of Mannheim, we supported the jointly designed overall program. Participants of the opening march and events included residents of both genders from several Mannheim nursing homes. It is also worth mentioning – because it has indeed remained so far unique – that the Mannheim campaign involved motivated persons with high-level competence and qualifications who, at that time, were looking for ( paid ) employment. This was made possible by the limited duration of the campaign and the city ’s administrative structure combining the fields of labor and social affairs within one department. Next to the voluntary commitment of professionals from health care and other social domains, it was these active supporters who made an essential contribution to the campaign ’s success. With this special feature, the Mannheim campaign points to the range of opportunities, so far not yet exhausted, that are basically available to a municipal administration, and which, when used in a fair, imaginative and responsible way, can be transformed into a win-win situation. For Aktion Demenz, Mannheim offered the opportunity to gain experience with the implementation of the goal of a dementia-friendly community in a large urban context. The campaign ’s driver and our direct interlocutor was the city ’s Office of Social Planning which also coordinated the Geriatric Psychiatry Forum. This network of committed structures and persons from the professional field ( health-care and support, social affairs ) celebrated its 15th anniversary in the year of the dementia campaign. For the Forum, the Forget Me Not campaign also had surprises in store. In the end of the campaign, Forum members who had spent many hours toge­ther in formal exchange and discussion sessions for years, reported that collaboration during the campaign had led to simpler and appreciably more informal communication in the normal workday and across institutional boundaries, and to faster and non-bureaucratic mutual support whenever an emergency situation demanded it. It is hard to wish for a more welcome side effect. 257

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Ultimately, there was much reason for the city and the campaign coalition ( including Aktion Demenz ) to be satisfied with the results of their efforts. Figures are at best insufficient indicators of success, and yet : the ten-day action program involved more than 5,000 people, and the local press had played its part and provided current reports. Last, but not least : the efforts in the matter of a dementia-friendly Mannheim did not end with the last day of the campaign. Thus, still during the same year, an event for staff of the local public transport took place dedicated to the subject of sensitization or skill broadening and in the context of a collaboration with the local University of Applied Science. Also in 2009, the committed sport and dance instructor Alexander Gipp gave a dance performance with a group of people with dementia at the Mannheim Christmas market. The older dancers of both genders, who swayed to Saturday Night Fever and to other popular hits on the stage, were frequently greeted with a smile by passing visitors. Did those pedestrians notice that they were watching a special group of dancers ? In actual fact, this did not matter fundamentally : the important thing was for them to be there and to take part. It was a precious bit of normality experienced firsthand, made possible by the action of a committed person. The experience acquired in connection with the Mannheim activities also includes, however, that contacts which had developed over the long months of preparation, began to fade out after the collaborative work within the campaign came to an end. This was not so much due to flagging interest as much more to a change of staff in the Office for Social Planning. Walter Werner, the long-serving leader of this office, retired shortly after the end of the campaign. The interim phase which usually results from such a break meant that further activities in Mannheim faded from view within Aktion Demenz. This is as regrettable as it is widespread. The world of activists in the field of dementia is, however, still of sufficiently manageable size so that our paths are bound to cross again eventually. Installation of an auxiliary engine : the program Menschen mit Demenz in der Kommune ( People with dementia in the community ) ( 2009 – 2016 )

Finally, another important actor that profited from the Aufbruch ( New Start ) and its great success was the promotional program People with dementia in the community. The program ’s contents as well as its implemen258

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tation and achievements are presented in detail in Part 2 of this book, and need no further comment. What should be pointed out, however, is the good cooperation between the donating institution ( Robert Bosch Foundation ) and Aktion Demenz as an initiative of civic engagement. Indeed , such a productive working together is neither a matter of course nor a workaday routine. Of course, the program ’s overall conditions were marked by the Foundation ’s rules of the game and established practices. Although the wording may sound somewhat technocratic, it is at this point fully justified as a statement of quality : the joint development and implementation of the program qualifies as a successful example of co-production. 1.5 Sensitization in the initial phase of Aktion Demenz : an interim reflection By now, the concept of sensitization can be found almost anywhere when it comes to the issue of dementia and the aim of improving the living conditions of those affected by it. In the present rhetoric of proposals and presentations, sensitization has become part of today ’s basic linguistic equipment. Stating this clearly also suggests that such a concept must be constantly clarified in its particular historical and social context. Thus, the process of sensitizing must be understood as subject to historical changes – something which must always be defined more accurately within the framework of a given situation. Crucial for the success of the focus on ‘ sensitization ’ in the initial phase of Aktion Demenz was the enthusiasm of committed professionals and volunteers for shifting dementia, from its shut-off existence as a ‘ pariah ’ issue, to the center of society and squarely into the middle of the community. Without this positive response, without the sensitivity to the issue of dementia already present within the circle of committed professionals and volunteers, this development would not have been possible. With regard to an interested public, it was a matter of breaching the existing partitions consisting of stigmatisation, fear, shame and denial that surround the issue, and which to date had kept it from the public debate. Or at least inflict a few initial fissures or partial openings on these partitions. Similarly significant for the efforts to raise awareness, if given varying weightings, was the motto ‘ Gemeinsam für ein besseres Leben mit Demenz ( Together for a better life with dementia ) ’. Presumably not all who are involved in Aktion Demenz will interpret the statement that it is possible to 259

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live better ( than now ) with dementia as meaning that it is possible to live well with dementia. The consensus can, however, be inferred in relation to the following position : as a society we live better with dementia, or alternatively we cope better with this phenomenon, if we break up the existing compartmentalization, and if we open up to this – certainly uncomfortable, and partially disturbing – issue as well as to the people affected by the condition. Concerning the objective of sensitization, the motto Together for a better life with dementia includes, then as now, the realization that the dominant attitudes and stands are a part of the problem, and therefore it is a matter of changing them so that they become part of the solution. Sensitization also meant a softening of the defensive attitudes, in society as well as with individuals, vis-à-vis grappling with the issue. It also implied the attempt to relaxing the powerful assumptions and pre-set positions regarding dementia. Furthermore, sensitization meant, and still means, working towards a receptiveness to new perspectives, which includes a willingness to alter one ’s attitudes and stands. ‘ Attitudes change when experiences change ’ : this guiding principle was fundamental to the topic of sensitization within the practical discourse of the dementia issue. In this sense, the early campaigns, as well as the local initiatives funded later on ( plus the considerable number of non-supported ones ) provided initial opportunities to gain additional and new experience, for example via the various aesthetic and cultural entry points chosen by the activities and projects. Other opportunities were provided by direct encounters with people with dementia in the context of common activities ( e. g. painting sessions, a request concert, a party, etc. ). ‘ Attitudes change when experiences change ’ : this guiding principle derives from a reflection on the effectiveness of the campaign Erinnern – Vergessen : Kunststuecke Demenz ( Remembering – Forgetting : Dementia Art Works ) initiated by the local theater in the city of Moers which preceded Aktion Demenz 1 . In the reflections on the basic ideas behind this intervention by the Moers city theater, which are still relevant and worth perusing, Klaus Bremen ( then Secretary of the Society for social projects, Equal Welfare Federation of North Rhine-Westfalia, campaign activist ) bridges the essential gap between one ’s own immediate experience and the ‘ permanent achievement of a committed civil society ’. In my view, this emphasis on the significance of the local, and of the concrete and immediate lo260

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cal happenings, represents an important common denominator of Aktion Demenz and the approach used by the actors in Moers. The dimension of one ’s own immediate experience, and of the debate with others concerning this same experience, has an unmistakable quality and lends outstanding significance to concrete actions on the spot. In this specific context, sensitization also means the instigation of a process of ‘ producing ’ a committed society and of implanting evolving new attitudes into concrete action. The above is the one – basic and essential – dimension of the sensitization process with regard to the issue of dementia aspired to by Aktion Demenz. However, the immediate happening in concrete places – Ostfildern, Giessen, Mannheim, Esslingen, etc. – also provided nutrient matter for a second development essential to the goal of raising awareness – that is to say for changes in ways of addressing, or not addressing as well as of representing or not representing the issue of dementia in the popular media. Indeed, the role of the media in a socially significant process of debate is a broad, complex, and controversial area of controversy. ‘ There is little probability that our society and we ourselves will create a new and different image of old age, of aging or of dementia in the public structures of editorials and talk shows. This kind of publicity, with its ever changing themes and related fragmentation of related experiences, remains mostly far removed from the experiences and the regional realities of civil society ’ 2 

There is a lot to this assessment by Klaus Bremen. At the same time, we must not lose sight that media offerings represent indispensable means for creating and propagating an atmosphere that is receptive, or at least more receptive, to an issue. Also, we must keep in mind that the possibilities of communicating and debating on the issue of dementia via the media, but beyond the mainstream ones, remain a largely unexplored terrain for innovative, change-oriented treatment of the subject. The debate over dementia-friendly communities fed the germination and growth of this media material. If we try to answer the question of where we have arrived with our efforts in favor of dementia-friendly communities, then the role of media representations and their evolution must be considered.

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1.6 Sensitization as media attention : dementia in the German media Since the early days of Aktion Demenz, the public image of dementia, along with the latter ’s representation in the media, has undergone some changes. Those ideas and representations which for a long time have predominated the scene have not disappeared. But in the meantime they are being juxtaposed by a series of competing layouts, images, drafts and mental constructs. Without being able to substantiate this quantitatively, I dare to claim that today the issue of dementia in its various media representations, its ­specific genres and formats, has a stronger presence in the media than was the case in the initial days of Aktion Demenz. In this respect, a stronger presence not only means a quantitative growth, but also – beyond the media ’s own internal standards – a certain broadening with respect to diversity and c­ omplexity. This is not at all a matter of claiming a simple and linear causal relationship between the activities of Aktion Demenz and a change of the media ’s politics of representation. It can be rightly said, however, that the efforts underta­ ken in connection with the issue of dementia-friendly communities, together with their accompanying measures, made a not insignificant contribution to this change. There is no such thing as a ‘ zero hour ’ in the realm of media representations. It is feasible, however, to determine a striking moment in media reporting as a starting point for our review. At the end of 2007, issue 49 of the weekly magazine Stern was primarily devoted to the themes of dementia and Alzheimer ’s. Several persons on the governing board of Aktion Demenz found the title story by Frank Ochmann particularly disconcerting. The great oblivion, as the title ran, came up with a heavy dose of ultra-negative images and representations of people with dementia. The cover of the issue showed the head of a woman in close-up with hard-to-guess age features. There was an eraser on her forehead, having already left clear traces of its action behind. Here is a sample from the title story : ‘ For many, it is the worst possible end : losing life, long before death. Even today, about a million dementia sufferers [in Germany, gk] have gone into a twilight, and each year there are more and more of them. And even a century after the discovery of Alzheimer ’s disease, there is no cure in sight. ’ 262

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Members of the Aktion Demenz executive board wrote a letter to the editor which referred in no uncertain terms to the title story ’s connotations as having violated the rights and dignity of those affected by dementia. The letter pointed to the responsibility of author and editors in this respect. In the letter of reply, it was stated that the reporting in the magazine issue was, on the whole, considered as ‘ balanced ’. In addition, the magazine saw itself unable to understand the criticism of the article’s preconceived notions, and the reference to the latter ’s damaging effects. Both the title story and the exchange of letters suggest that the Stern editors involved with the issue upheld the notion of an autonomous individual ( white, male, middle-class ) as conceived primarily from the realms of cognition and reason. In accordance with the logic of this conceptual design, it was inevitable that the dementia-induced changes could only be perceived as outlined in the title story. Shortly afterwards, it was publicly revealed that the well-known Tuebingen professor of rhetoric Walter Jens had been diagnosed with Alzheimer ’s disease. On this occasion, the tone struck by Stern was a somewhat more moderate and subtle one ( thus in an interview with Arno Luik, who knew Jens personally from his student days ). However, this was not a departure from the distinction between ‘ mind ’ or ‘ intellect ’ on the one hand and pure ‘ biology ’ on the other which characterizes the texts in Stern from that time. When perceived as an attack on the mind or intellect as the ‘ crown ’ of human subjectivity, dementia can only be conceived, within this mental construct, as the ultimate catastrophe. In order to oppose the negative effects of such pervasive and powerful pre-conceptions, EFID ( the European Foundations Initiative for Dementia ) published a paper entitled ‘ I am still the same person : an invitation to communicate differently about Alzheimer ’s disease and related illnesses ’ in 2012 3 . The publication ’s basis was a study carried out by a team of Belgian communications and media experts. In its introduction, the paper refers to the widespread image of dementia which, according to the authors, hurts many people – primarily those who live with the difficulties and impairments described by this very image. Yet from now on and, in order to be right in a German context, a plural should be used instead of the singular : many of the images and preconceptions concerning dementia and of those who live with the condition which are current in society, have the potential to do considerable damage. The great merit of the study is that it identi263

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fies such preconceptions, and reveals their negative impacts. With regard to the Stern issue of 2007, but also to debates that are currently flaring up again, one preconception ( communications researchers speak of a ‘ mental construct ’ or a ‘ frame ’ [Tr : of mind ) that has emerged as particularly influential is the notion that dementia amounts to the total loss of that which makes us human. ‘ Within this frame of mind, which is widespread in our society, dementia is viewed as a disease that robs people of their minds, and with it of what constitutes our human existence and our identity. This particular conception of being human corresponds to the classical dualistic approach of Descartes, which separates body from soul [or perhaps we should rather say or think ‘ mind ’ as it is cognitively conceived, gk]. Whereby the soul [or the cognitively conceived ‘ mind ’] is superior, which is made clear by the famous saying ‘ I think, therefore I am ’. In the context of this conception, the demand for assisted dying is also to be considered a ‘ solution ’ – as an ultimate triumph of the cognitively conceived mind. Within this framework, metaphors such as ‘ great black hole ’, ‘ final spiritual short circuit ’, ‘ vegetable ’, and ‘ living dead ’ are often used for people with dementia or for the condition itself. ’ 4 

Against this background, it seems valid to say that the title story in Stern marks a particular stage in dementia-related media presentations and a historical phase in which the representation of the mental state of dementia is almost consistently associated with an unequivocally negative connotation. Aktion Demenz, with its activities, publications, and committed communicative work with interested media actors, has contributed its share to breaking up this representation ’s unlimited dominance. In the second half of 2009, Ruediger Dammann and Reimer Gronemeyer published ‘ Ist Altern eine Krankheit ? Wie wir die gesellschaftlichen Herausforderungen von Demenz bewaeltigen ’ ( ‘ Is aging an illness ? How we can meet the challenges posed by dementia ’ ). This book represents one of several, almost simultaneous, attempts to oppose the medicalization of the dementia phenomenon. It is also an attempt to advocate dementia-friendly communities as a potential solution path. The publication ’s appearance produced, among other consequences, a surge in inquiries at the Aktion 264

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Demenz office in Giessen on the part of media representatives who wanted to know where they could inspect a dementia-friendly community in Germany. A second significant development, for the media ’s opening up to other images and conceptions of people with dementia, was the substantive division of labor that occurred, after the Esslingen Aufbruch ( New Start ) conference between Aktion Demenz and conference partner Demenz Support Stuttgart. Whereas Aktion Demenz concentrated on the aim of raising awareness, on ‘ changes in the heads ’ or on modifying attitudes, as well as on the view of dementia as a social challenge ( besides implementing the promotional program ), Demenz Support applied itself to bringing into sharper focus aspects that were addressed in Esslingen, such as self-articulation, self-representation, and self-determination together with the situation of those directly affected. The domains of sharing and of feeling integrated represented, and still represent, terrain to be explored by both organizations, although in part different aspects were, and still are, being taken up, emphases placed, and detailed sub-themes defined. One crucial decision in favor of advancing more adequate and diverse dementia-related media representations by Demenz Support Stuttgart was to search for groups or individuals throughout Germany who were ready to speak in public as to what it means to live with dementia. The results of this search ( which included glances at other countries ) were published in January 2010 under the title ‘ Ich spreche fuer mich selbst. Menschen mit Demenz melden sich zu Wort’ ( I speak for myself. People with dementia speak out ) 5 . At the same time ( January 2010 ), the conference ‘ Stimmig ! Menschen mit Demenz bringen sich ein’ ( It ’s only fitting ! People with dementia get involved ) took place in Stuttgart. The event ’s convenor and organizer was Demenz Support Stuttgart; both Aktion Demenz and the Alzheimer Society of Baden-Wuerttemberg participated as partners. For the first time in Germany, people with dementia were right at the center of a conference addressing their role and situation and took on the part as central actors. They served as principal speakers on the podium and were present in the hall as members of a group of early onsetters who had risen to speak in a small book published just before the conference. Christian Zimmermann, a Munich-based former entrepreneur and one of the first Alzheimer activists in Germany, had taken on the role of the session ’s patron. In addition, several paintings which he 265

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had produced after his diagnosis were displayed at the conference ’s evening gathering in a downtown club. Shortly after the Stimmig ! ( It ’s only fitting ! ) conference, the first 2010 issue of the magazine Spiegel Wissen came out in February. Under the title ‘Die Reise ins Vergessen. Leben mit Demenz’ ( Journey into oblivion. Life with dementia ), the editors in charge Annette Bruhns and Beate Lakotta provided a crucial counterpoint to the prevailing positions à la Stern magazine with their comprehensive and thorough treatment of the issue. Through contacts in the run-up to the issue, both journalists were supported in their research with references and by mediating access to important interview partners. The Spiegel issue, which featured a broad range of dementia-related topics, offered a differentiated picture of the issue of dementia. Among the contributions was a detailed article on Aktion Demenz and on the objective of creating dementia-friendly communities, for the writing of which Annette Bruhns had done intensive research. The discussions during the preliminary work for the issue enabled Aktion Demenz to gain insights into the extremely varied dimensions required to be taken into account for writing, on the one hand, for an informed audience ( the ‘ dementia scene ’ ) and, on the other, for a popular ( knowledge ) magazine. As was learned, the sales-oriented breakeven point for a popular magazine such as Spiegel Wissen was about 120,000 copies. The soundness of the topic notwithstanding, the journalists hinted repeatedly at their concern as to whether the dementia issue would interest a large enough audience. The response to the issue that followed showed that this worry was unfounded. An indicator of the great demand was, among others, the publication in October 2010 of contributions to the Wissen issue in book form by the publisher Deutsche Verlagsanstalt under the title Demenz. Was wir darueber wissen, wie wir damit leben ( Dementia. What we know about it, how we live with it ). Besides the numerous and differentiated textual contributions, the Spiegel issue also seduced with its visual layout. One of the central, innovative contributions was a detailed discussion with the members of the then Munich Group of People in their Early Stages of Dementia ( among them Christian Zimmermann and Helga Rohra, who, at that time, still appeared under the pseudonym of Helen Merlin ). The interview was supplemented by a series of very stylish portraits, which were printed in the dark brown of sepia photography, as a commentary on the seriousness of the issue. This starkly 266

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contrasted with the much brighter picture chosen for the issue ’s cover provided by photographer Michael Hagedorn ( which showed two elderly people in a boat ). By then, Hagedorn had already made a name for himself in dementia-related circles with his photographs; in 2009, he was able to mount a mobilization campaign in Berlin styled Konfetti im Kopf ( Confetti in the head ). All in all, the Spiegel issue offered a broad public a differentiated image of dementia, as well as a socially and culturally oriented understanding of the issue. In Germany, the year 2010 became the year of break-throughs in media representations of dementia over and above the print domain, which served to place alternative viewpoints next to the then dominant, thoroughly negative image that tended to dehumanize those affected. Another example, which is directly connected to the Stimmig ! ( It ’s consistent ! ) conference is the TV feature Alzheimer ohne Scham. Ein Mann stellt sich seiner Krankheit ( Alzheimer without shame. A man faces his disease ) that the regional ( and public ) TV channel Suedwestrundfunk broadcast late in the evening of March 20th, 2010, as part of the series Menschen unter uns ( People among us ) 6.  In it, author Thomas Klatt drew a half-hour portrait of Christian Zimmermann, which also documented Zimmermann ’s role at the Stimmig ! ( It ’s only fitting ! ) conference. Also in March, issue 9 of Spiegel magazine carried an interview, several pages long, that Beate Lakotta conducted with Richard Taylor in Texas. Taylor was also one of the principal speakers at Stimmig ! ( It ’s only fitting ! ) in Stuttgart. Also, another Stimmig actor made her media debut at that time : Helga Rohra, a Munich woman with a diagnosis of dementia and prospective dementia activist, was a guest on a nationwide late night program ( the Markus Lanz talk show ) on May 26th, 2010. This was the first live appearance of a person living with a dementia diagnosis on German TV. 7  It is neither possible, nor expedient for our purpose, to trace further developmental stages in the representation of dementia and particularly of those directly affected. With the latest developments in the film medium, the dementia issue has even progressed to a box-office hit : according to a Facebook post on 14th March 2015 by Til Schweiger ( Tr : the well-known German film actor, director and producer ), his film Honig im Kopf ( Head full of honey ) had lured by then 6.33 million spectators into the movie theaters, which made this film by far his most successful one. 267

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Thus, dementia has, in the meantime, arrived at the mainstream media ’s center stage. And there ’s more to it than that : many of the reflections – employed at the initiative workshop Together for a better life with dementia in order to alter perspectives – were used by Til Schweiger to stage scenes, with his unerring instinct for striking effects of appeal to a broad public taste. Nevertheless : has the sum total of the events that have actually occurred and those that have been mediated or staged by the media since 2006, led to a greater sensitivity to the issue ? This question is not, as it might seem, as easy to answer in the affirmative in the final reckoning. What may be helpful for an assessment of where we stand, by now, after a closer scrutiny in matters of sensitivity, are the results of a representative survey ( 1,795 participants ) from the year 2013, results which should have not lost much of their topicality since then. 8  The survey investigated, among other items, pro-social attitudes towards dementia and those affected by it, as well as other, emotional responses that are rather more to be classified under negative indicators. Under the heading of ‘ pro-social attitudes ’ are the 82 percent of those polled who indicated feelings of compassion towards people with dementia. Eighty-three percent agreed with the statement of ‘ sensing a need to help ’, and almost 60 percent claimed to react to people with dementia with sympathy. What is more revealing than bare numbers, however, is that the pro-social attitudes investigated are 20 percent higher than in comparison with other social groups with psychiatric problems such as people with schizophrenia or depression. Overall, the authors suggest there is tolerance and a positive attitude towards people with dementia, which, in their view, ‘ was perhaps not to be expected to this extent ’. More difficult are the findings with regard to the negative emotional reactions to people with dementia. Almost 25 percent of those polled confessed to feelings of fear towards this circle of people; 38 percent admitted to feelings of insecurity, and 46 percent identified a feeling of unease as pertaining to them. For the authors, these partial findings are, therefore, grounds for reflection as to why in particular fear can contribute demonstrably to stigmatization and social distance towards those affected, and to shame and concealment on the part of those affected by dementia. To these indications or hints by the authors may be added further reflections which have the effect of watering down what, at first, was promising to 268

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be the wine of a positive conclusion. Thus, within the category of ‘ pro-social ’ predispositions, the attitude of compassion is mentioned among others, but this attitude cannot be judged as wholly positive without further ado. Compassion can be helpful if it means a willingness to make donations. As a good basis for becoming an advocate for ‘ my ’ fellow citizen affected by dementia, or for devising forms of civic solidarity, compassion is, however, of hardly any use. In matters of sensitization, by now there are still unanswered questions, such as to appropriate forms of sensitivity in the sense of receptiveness and open-mindedness to new ideas or perceptions. The poll confirmed the finding produced by other studies that ‘ contact and encounters with those affected are correlated with a reinforcement of positive responses and fewer resentments ’ 9. As it turned out, with the younger persons polled ( to age 40 ) and with people without experience or contact with people with dementia, feelings of insecurity and fear were more pronounced than with persons with experience in dealing with this group of people. In this regard, empirical evidence validates not only the positions but also the orientation of concepts and actions of Aktion Demenz, in the sense of supporting encounters and change through direct experience and its related learning processes through communicative negotiation. Perhaps even more importantly, the opinion survey underpins the significance of direct experience, which is as vital as indispensable for a civil society that is constantly in ‘ living construction ’, and yet, at the same time, materializes in a specific and concrete setting. 2. Towards a different way of looking after? 2.1 Provision – concern – care : first steps towards clarifying concepts As mentioned at the outset, the intention of strengthening awareness with regard to the dementia issue was stated side-by-side with the plan to find alternatives to the dominant mode of ensuring support and care for people with dementia. The hope was that this could lead the way towards a different mode of care, to a kind of comprehensive care ( ‘ Umsorgung ’ ) for those at the center of the attention. It was also hoped that such new paths might help to bring about some departure from the predominant handling and conception of ‘ Versorgung ’ ( provision or supply ). 269

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Why should the concept of provision / supply of services be so controversial ? Why is the ‘ mind-set of provision ’ so problematic ? This collision with the concept of provision – which for a long time I could not adequately justify – has been with me from the start of my involvement with the dementia issue. At first, the search for demonstrable reasons for this conflict was inconclusive, which made acting in the field of dementia not easy( ier ). The switch from the German to the English language adds new intricacies to the attempt to adequately convey the troubles with the term Versorgung ( provision / supply ) felt by me, but also by others within Aktion Demenz. So I should try and explain more precisely what was and is the concern behind this unease caused by a term. The German language does not know of an equivalent term to the English Care which in a nutshell implies and rings with the various and multifaceted aspects and dimensions of this vital aspect of human life and existence. In contrast, the various terms covering certain dimensions of the phenomenon under concern in the German language add up to a rather fragmented picture. Whenever it seems essential to recall that there is an overall idea, a holistic concept behind the variety of differing concerns and practices, the English term Care is used by and in the discussions concerned with the subject matter in Germany. Now, the particular trouble with Versorgung ( provision, supply ) derives from the fact that the word holds the status of a generic term in expert as well as in public discussions. In the field of dementia care, you cannot get around the concept of care provision. It is as good as ubiquitous, as for example in the design of health-care research or in the debate over various forms or settings of care. Yet, on closer inspection, the term care provision actually represents a black box. Even the otherwise often helpful on-line encyclopedia PflegeWiki ( Tr : an English version, NursingWiki, was operational 2006 – 2011 ) cannot get past a tautology : ‘ The provision of care to sick or handicapped persons is a comprehensive task that is accomplished jointly by various professional groups ( in particular the paramedical and medical professions ). The task includes medical care, housekeeping, nursing, rehabilitation, supply of medicine and objects of daily necessity, and everyday as well as legal support. Depending on the country, this term as a professional concept can assume a special significance within the overall health-care domain. ’ 10  270

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Pray tell, however, what is the core or essence of this ‘ comprehensive task ’ ? What does care provision mean ? In my first attempt of finding answers, it seemed impossible to come up with any substantial results. So another thought was that it might be helpful to start with Care as a holistic concept and with pinpointing its characteristics. For one, the general term Care ( just like the German term Sorge ) implies the notion of ‘ a disquieted state of uncertainty, apprehension, and responsibility ’ ( as, for example, Webster ’s New Collegiate Dictionary puts it ). Yet, more importantly, Care carries the notions of interest and concern, and of a positive inclination ( ‘ to feel interest or concern ’; ‘ to have an inclination ’ ). Thus, it seems justified to assert that based on these connotations, Care, among other things, rings with positive perceptions and signifies an attitude. This is one key insight. A second one, which cannot be deduced from linguistic analysis, is that the concrete activities linked to care and caring tend to be downgraded and considered as less valuable in comparison to activities tied to the field of production. This, of course, is where the international feminist Care debate has made its valuable contributions. What does this tell us with regard to our opposition against the term Versorgung ( provision /supply ) ? Let ’s skip over the presentation of an elaborate investigation of the term ’s history and development and simply look at its basic result : Versorgung is a concept which has been cleared from the very meanings and connotations pointed out in our examination of the term Care. Versorgung ( provision /supply ) is a concept purged from human perception and attitude. It is a strict and rational procedure carried out within a given ‘ system ’ ( e. g. that of the state or the health care system ). Versorgung is a version of care delivery developed in the context of modern industrial societies, based on scientific insight and techniques. Versorgung looks for efficiency and performance. It is an effort in the context of a system made up by beneficiaries, and the implementation of the results of ongoing negotiations between the stakeholders that determine the system ’s framework. Versorgung/provision of care services is also an operation where those in need have the least input on the kind of service or support provided for them. In that respect, Versorgung is the result of the complex negotiations between stakeholders about the amount and kind of allocation given to a specific group of beneficiaries in need of support. It is a transaction which does not care about the individual and his or her individual needs. 271

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Skeptical as this may sound, it does not suggest a flat-out repudiation of the concept of Versorgung / provision altogether. There certainly are situations and occasions when such an operating mode is needed : for example when the task is to cope with natural, ecological or other major desasters, assaults or other calamities. But these are temporary situations where securing the survival of major portions of people is given priority over individual needs. However, Versorgung does not differentiate between such exceptional circumstances and the continual, everyday duty of taking care of needy persons. To sum up : the concept of Versorgung ( provision / supply ) combines measurement, planning and allocation ( by the state or some other kind of ‘ system ’ ) with the calculation of needs ( for goods, energy, etc. ), performance, and demands. Central to this is also the assignment ( of what will be provided ) to a particular category of people ( e. g. those in need of long-term care ) on the basis of meeting predefined criteria, as well as the regulation of the access to services established for a specific category of people according to a priori negotiated / determined criteria. What is crucial is ‘ the system ’ and its categories, and its capacity to allocate, not the person of either gender, and his or her personal needs. In its historical development, Versorgung /provision is thus a concept that is closely intertwined with an apparatus or system. Versorgung / provision is a procedure that is decoupled from human relationships, and from human actions. In its decided technocratic characteristics, Versorgung knows no empathy, no esteem, and, above all, no reciprocal relatedness. In sum, Versorgung / provision stands in glaring contradiction to all that constitutes the core of care, and, with regard to people with dementia ( as with all others who are confronted with an impaired old age ) to what seems essential : relationship, relatedness and interaction. It is to be hoped that all this demonstrates why resistance to the concept of provision has good reasons, and why criticism of the concept is justified. Recognizing people affected by dementia as persons, encountering them as human counterparts, and drawing them into the whole of society insofar as it is in some way feasible and clearly desired by them – perhaps this way gets to the heart of the program that was, and is, tied to the approach of Aktion Demenz against the ‘ mind-set of pure service provision ’. Whereby it is understood that recognition, solidarity ( in order to rely on an unfashionable, yet in no way obsolete, concept ), esteem, and integration of people affected 272

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by dementia can manifest themselves through a wide range of different attitudes and practices. When addressing an English-speaking audience, however, it is likely that readers will have no problem to relate to our opposition to the concept of Versorgung /provison. Yet, they may be less convinced with regard to our criticism of the ‘mind-set of pure service provision’. In order to make this argument more comprehensible would actually require the unfolding of a long and quite complex story. Since this is not feasible in the context of this contribution, we have to be content with some explanatory references. First of all, it seems reasonable to hypothesize a consensus according to which care-related activities and practices can and do take many forms which are not mutually interchangeable. As the German scholar Ute Gerhard has put it : ‘ Care may be practiced as the personal and private care of others, of next of kin, out of personal inclination or moral obligation, but also as a professional activity. It includes remunerated as well as unpaid caring activities, whereby time and kindness, and the quality of dedication and of human sympathy cannot be calculated in terms of money and salary. This does not mean, however, that for this ‘ plus-value ’ appropriate, appreciative wages should not be paid. On the other hand, owing to this social surplus, caring as a social, even as a ‘ democratic practice ’ as Joan Tronto puts it, is essential and indispensable for societal cohesion and for the common welfare ’ 11 

Thus, care and the practices of providing and receiving care must be understood to be vital to the well being and prospering of a given society. Here, it must be taken into account that due to their specific backgrounds and historical developments, contemporary societies rely on considerably different kinds of logic with regard to the formation of their respective welfare regimes. This particularly applies to the various regimes across Europe. Ana­ lysis provided by feminist work suggests that we have to account for considerable differences. For one, the UK and Scandinavia systems are based on a logic ( or logics ) that allows to deduce social transfers and welfare from the receiver ’s status as a citizen and, thus, from universally defined civil rights. By comparison, the German system ’s history and development does not allow for such a deduction. Again, this is not the place to go into the German system ’s peculiarities. Suffice it to state that the German law holds 273

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nothing on which to base such an argument 12 . Put differently, the German law says nothing about the status of care – with regard to giving and receiving care – as a social right. Another major problem which we cannot dig into here is that German legislation after the second World War has constructed care in terms of a division of labour between the family and the State where the latter only comes in when the former is no longer able to fulfill its tasks. While we have seen some changes in the past decades in that respect, the German system still firmly belongs to the type of welfare regimes that heavily rely on the family ’s capacities for care giving. This, obviously, gives rise to major problems in times of high mobility caused by the search for an adequate job, changing gender roles and relations, new patterns of living ( increasing single households, particularly with regard to elderly people ) and of practicing social contact and interaction. Apart from the important question of rights ( and granted that the issue of rights does not necessarily provide an overall solution ), there is also the question whether services are the answer to the complex challenges of care. There can be no doubt that good services, catered to the needs of those on the receiving side, are an essential ingredient of a better mode of caring. This leaves us with at least two questions : ( 1 ) How can we turn such services into a reality ? and ( 2 ) If we will be able to do so, will this be enough to bring about the much needed change and improvement ? The attempt to answer question number one must be delegated to some other occasion. With regard to the second question, this is what this book is trying to answer by pointing to countless ways of showing concern. This is the bottom line of the argument : We need to reinvent our social interaction and cohesion, we need to reinsert a good portion of social cohesion into our daily lives, we need to improve our support of those in need in the community. It is time to turn to and practice a new way of life in which giving and providing care is given its appropriate place. In closing, I would like to point to one example which may convey the spirit and direction needed in order to build up this new way of life. In the summer of 2014, I visited one of the initiatives which had particularly impressed me by their ideas, the personal encounters with their representatives of either gender, and through shared debates in various meetings and workshops. My request made by e-mail to spend a day as a ‘ rapporteur ’ and ‘ witness ’ on site was accepted. The experience and impressions gained by this 274

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visit have been assembled in a report which is added below in order to enrich the reflections and aspects alluded to earlier with a concrete example. 2.2 On the reinvention of neighborly interactions – an exploration 13  Late summer, 2014, regional train to eastern Allgäu ( Bavaria ). The program indicates a visit at NUZ, or the Association for Neighbourly Support and Provision for Old Age through Time Donations. I should get off at Pfronten-Ried, or so it says in the e-mail. Ried is one of the 13 locations or villages that form the municipality of Pfronten ( 8,000 inhabitants ). And here I already spot her in front of the tiny rail station : Veronika RistGrunder, first chairperson of the NUZ. We know each other from workshops of the program People with dementia in the community. The people of eastern Allgäu had taken part in 2010 – 2011 as one of the projects funded. 14  In 2014, the association received an award from the European Foundations Initiative for Dementia ( EFID ) 15 ; a high and well-merited honor bestowed on NUZ. However, I shouldn ’t get ahead of myself. It is not by chance that this exploration tour should fall on a Tuesday. This way I will be able to experience live and in action the latest of the NUZ involvements : Saltenanne. This is the name of both the new engagement and its location. Translated into literary German, it means ‘ the house of the old Nanne ’. In concrete terms : a small groundfloor apartment that NUZ has rented at the end of last year. Where previously the landlord ’s mother lived, the association has now available two rooms, including kitchen and bathroom. Saltenanne is something like the public ‘ living room ’ of NUZ. Here, since January 2014, and always on Tuesday afternoons, a Hoigarte has taken place. For outsiders : a Hoigarte is a convivial, informal get-together ‘ where older people come together, to listen to one another, to hoigarte together, to offer mutual support and, if, necessary, to find advice and assistance as well ’ 16 . Civic commitment : blind spots in the dominant view. Much is written and talked about the involvement of volunteers. The glaring imbalance that is looming in this area in matters of gender is, however, hardly ever broached as an issue. In classical volunteering, the number of men is notably high primarily where influence and social recognition beckon ( and often reimbursement of expenses is taken for granted ), notably in leading positions of associations 275

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and clubs, and with jurors and lay judges. 17  In the realm of sports and in institutionalized representation of senior citizens, the men, too, are out in front. On the other hand, when it is about children, health and social affairs, where volunteer participation is increasingly much more needed, the participation of men is rather scarce. In these areas, two-thirds of the volunteer involvement are accounted for by women. In self-help groups, as much as 70 percent of the caring and looking-after work is performed by women. 18  To take care, to look after, this is a basic activity within society, which, in the framework of the prevailing cultural logic, is assigned to the sphere designated as ‘ feminine ’. This binary gender logic is seared deeply into the thinking. On the one hand, the prevailing operation of society is still subservient to this logic. On the other, it is clear that this way of thinking and acting is not sustainable in the future. If we only consider the aging of people and the increase in dementia-induced changes asking for humane, every-day useful looking after, the small, casual, neighbourly assistance become much missed or sought-after goods. Which makes the view of the gender gap in the realm of citizens ’ involvement that much more disturbing. Where, then, are we heading with the humane support and the small acts of assistance for those among the elderly who can no longer cope with their daily life, and yet who would like to keep living in the community, in their own surroundings ? Often it is the crooked paths that lead to the better destinations. NUZ can be traced back to many years of volunteer work by enterprising citizens of both genders. To get together in order to shape the situation and one ’s life on the spot with one ’s own powers and according to one ’s wishes, without being patronized ‘ from the top ’ by prescriptions or regulations – this is how the essence of the overall vision could be expressed. At the center was the thought of an expanded neighborhood mutual-help group in the form of a barter circle. Early on, the activists at the time also considered the thought of a type of local grassroot old-age pension scheme. Even then it was thought of saving part of the earnings from the hours worked in the barter circle, and to deposit them in a separate trust account. Thus the members of the barter circle themselves could claim assistance, should they no longer be able to cope entirely on their own with their daily life in old age. The preconditions for the new orientation had been created in 2008, when NUZ reg. assoc. was founded, and the indispensable collaboration with other local institutions was established. The association is explicitly ori276

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ented towards the neighborly, local support of older fellow citizens of both genders, and in case of necessity it offers assistance without direct counterpart obligations or quid pro quo. At Saltenanne, Pfronten-Steinach, Baeckerweg 5. From the outside, a house like all the others in the village. Inside, unadorned coziness. The furniture is old, but not antique. In a corner of the room, the crucifix. The atmosphere, pleasant and quite different from that in the municipal halls and other institutional surroundings, in which most of the publicly supported welfare services are located. However, the place is not at all styled for coziness. No designer has had a hand in the game here. About 25 persons are gathered around the set tables in both living rooms. In one corner, somewhat separated, sits a group of men. It is only at second glance that guitars and accordions are apparent. Among the musicians is Kraini, one of the NUZ activists, who not only plays music, but also composes one or the other verses. One of his works, the Saltenanne song, praises the recent NUZ innovation. He strikes it up, and all sing along. 19  In any case, all are asked to join in, men and women. Everyone can participate, according to his or her abilities or willingness. All can, and no one must. It is also possible to be simply present or join in. And that is the way it is also handled : women members of NUZ, for example, have baked cakes and brewed coffee. Both is served after the musical opening. Almost unnoticeably, the informal gathering ’s strings run together in the hands of Elke Bansa. She is the one person responsible for this particular undertaking. At NUZ, they know when professional know-how is needed. Mrs. Bansa brings to her task much professional competence and experience in the fields of geriatric care and nursing-home work. Quite a few of those present have something to contribute to the discussion she moderates. And, later, almost all join in when it comes to the common card games. Even in the ladies ’ round, which has settled in comfortably to play cards in the smaller living room to the side. NUZ reg. assoc. : Being useful – being needed – belonging – getting help. The municipality of Pfronten is also one of the regular supporters or promoters of the association. From the start, the collaboration has occurred at the proverbial ‘ eye-to-eye level ’, and is perceived by both sides as an enrichment. The way in which Veronika Rist-Grundner, the chairperson, tells of this important interaction, signals unmistakably : here, on both sides, it 277

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is not about paying lipservice. The exchange with the mayoress Michaela Waldmann the following day reinforces this impression that, here, the relationship is practiced on the basis of mutual esteem and trust. Unusually valuable, but in no way everyday humdrum. As an association, the NUZ can accept donations and solicit subsidies. With the help of the funds raised, the services of the activists are underwritten financially, and are performed in Pfronten ’s 13 villages in the social, cultural, and, to a lesser extent, even in the manual trades fields. Rist-Grundner : ‘ We want, in particular, to inspire and encourage older people to bring their experience, talents and capabilities into the local social life ’. This means raising the visibility of assets available on the spot, what people ( can ) contribute – be it of social, cultural, experience- or knowledge-related or of a practical nature. A second, equally important aspect is the mutual relationship : he or she who is active in NUZ, and looks after others, is also doing something for him or herself. And this is not at all meant idealistically : each hour devoted to the NUZ is credited to a time account. Each one who contributes can exchange his or her hours – immediately or sometime in the future – for a task performance or service by others. This giving and taking balance each other out. This also is possible. One of the activists told Veronika Rist-Grundner of a continuing-education course that fascinated him, but was beyond his financial reach. The NUZ chairperson referred the man to the possibility of redeeming part of the hours performed by him. This would have never occurred to him – hence the more overwhelming he found the chance of being able to fulfill his great wish through his involvement with NUZ. Wanted : new hypotheses for socially useful activities. The number of hours that are performed per week for NUZ is generally limited. Which is how the model remains solvent. Those responsible see to it that hours contributed are actually booked. With women, in particular, there is always a great reluctance to receive credit for ‘ just checking that everything is in order ’ as a service performance, so says Rist-Grundner. ‘ That is a matter of course ’, ‘ there is really no need to write this up ’ – in her discussions she runs repeatedly across such expressions. To insist on documenting every hour performed has nothing to do with a petty bookkeeping mentality. It is plainly a matter of rendering visible the oh, so essential activities of looking after and including others. With this attitude, NUZ is steering against an overall 278

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societal tendency, that of systematically rendering invisible the work of caring, which is still a task performed overwhelmingly by women. Or else it is superficially recognized, only to assign it all the more firmly to the lower rungs on the social scale of importance. ‘ Yes, certainly it is important, but just the same a ‘ soft ’ factor ’. This way of thinking is deeply entrenched – even with those who have devoted a major part of their lives to this kind of activities ( ‘ that ’s really nothing ’ ). The fact is, the monetary value of unpaid labor makes up about three-quarters of the regular gross domestic product. 20  In its practical way, NUZ is thus countering the impacts of faulty societal positions : the documentation of services performed is one such safeguard. Which is not to be underestimated, especially with the generation of women who are involved with NUZ. These are often women who are poorly provided for in old age, and who have been left behind alone. They are also threatened with poverty in old age, despite their commitment to others. Being dependent : nothing to it ! Together, in the evening, we review the impressions of the afternoon. How has NUZ actually managed to make a dent into the nationally widespread attitude according to which the family must solve, on its own, everything that concerns it ? How do you set up such a thing here in the countryside, where age-related weaknesses and impairments are possibly even more stigmatized than in the city, or associated with shame ? In this respect, NUZ imparts a remarkable lesson. According to Rist-Grundner ’s observations, the recent population influx, particularly that from the ex-GDR states, has played a not insignificant role. As newcomers in an unfamiliar setting, the ‘ incomers ’ were more reliant on outside contacts, and on interactions beyond the family, than the ‘ natives ’ firmly installed in their relational structures. What may have also been significant was the life experience that was brought in from times of scarcity before the fall of the Wall, when the private exchange of skills, available above and beyond the family, helped secure and maintain the daily existence. Be that as it may, the NUZ shows, as always, that the better attitudes and more sustainable concepts have a future. ‘ It is better to light a candle than to curse the darkness ’ Confucius

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Notes 1 Bremen, Klaus ( 2007 ). Vom allmaehlichen Verfertigen einer engagierten zivilen Gesellschaft. Zu den Grundideen der Kampagne ‘  Erinnern-Vergessen  : Kunststuecke Demenz ’. In : Bremen, Klaus; Greb, Ulrich ( Hrsg ) : Kunstuecke Demenz. Ideen-Konzepte-Erfahrungen : Essen, Klartexte Medienwerkstatt, 13 – 30 ( On the gradual creation of a committed civil society. On the basic ideas of the Campaign ‘Remembering-Forgetting : Art Works Dementia ’ ) 2 Ibid., p. 24 3 De Rynck, Patrick; Rondia, Karin; Van Gorp, Baldwin ( 2011 ). ‘ Ich bin noch immer derselbe Mensch.‘  Aufruf zu einer neuen Art der Kommunikation ueber Demenz. Herausgegeben von der European Foundations ’ Initiative on Dementia ( EFID ) : Uebersetzung und Edition  : Karin Rondia und Baldwin Van Gorp. Deutsche : http :// Fassung erhaeltlich ueber die Webseite der Robert Bosch Stiftung  www.bosch-stiftung.de / content / language / downloads / Broschure_Framing. pdf( Zugriff Mai 2015] ( ‘ I am still the same person. Appeal for a new type of communi-cation concerning dementia ’; available in English from EFID ) 4 De Rynck et al., 2011, p. 19 5 Demenz Support Stuttgart [Hrsg] ( 2010 ). ‘ Ich spreche fuer mich selbst ’. Menschen mit Demenz melden sich zu Wort. Frankfurt / Main : Mabuse Verlag. ( I speak for myself. People with dementia speak out. ) 6 The broadcast was adopted by other regional programs, and transmitted in similar broadcast centers. 7 The book ‘ Aus dem Schatten treten. Warum ich mich fuer unsere Rechte als Demenzbetroffene einsetze ’ [Stepping out from the shadow. Why I am an advocate for the rights of people affected by dementia] appeared in 2012. The text was compiled by Helga Rohra in close cooperation with Falko Priest, who saw himself and made himself available as a ‘ writing assistant ’. The book was published by Mabuse Verlag, and met with a strong response. 8 Christopher Kofahl, Daniel Luedecke, Benjamin Schalk, Martin Haerter, Olaf von dem Knesebeck ( 2013 ). Was weiss and denkt the Bevoelkerung ueber Alzheimer und andere Demenzerkrankungen ? ( What does the population know and think about Alzheimer and other dementia pathologies ? ). In Gesundheitsmonitor. Ein Newsletter der Bertelsmann Stiftung und der Barmer GEK ( Maerz ). Available under http ://presse.barmer-gek.de / barmer / web / Portale / Presseportal / Subportal / Presseinformationen / Archiv/2013 / 131010-Gesundheitsmonitor-Demenz / Gesundheitsmonitor-3 – 2013.property-Data.pdf. 9 Angermeyer, M.C., and Dietrich, S. ( 2006 ), cited in Kofahl et al., 2013, p. 9 10 www.pflegewiki.de. Entry ‘ Versorgung ’ : version of 14.02.2015. 11 Ute Gerhard in an interview with Ute Gerhard and Cornelia Klinger about ‘ Care / Fürsorgliche Praxis und Lebenssorge ( ‘ Care/ Caring Praxis and Care of Life ’ ( 2013 ). In : Feministische Studien. Zeitschrift für interdisziplinäre Frauenund Geschlechterforschung ( 31 ), November, Nr. 2, p. 268.

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Between Reflection and concrete Action 12 See, for example, Gerhard ’s argument unfolded in the contribution cited above. 13 A first version of this text appeared in 2014 under the title ‘ Das Leben selbst gestalten, statt sich von oben gaengeln zu lassen ’ ( Shaping one ’s own life, instead of allowing oneself to be regulated from above ’ ). In : Demenz – DAS MAGAZIN, Heft 23 [Annex demenz. Leben, pp. 1619]. I wish to thank the publishers of the magazine for releasing the text to be included in this contribution. 14 The third and final round of funding by the program ‘ People with Dementia in the Community ’ expired in May 2015. 15 In line with the idea of ‘ dementia-friendly communities ’, the prize ‘ Living Well with Dementia in the Community ’ rewards innovative projects that promote the quality of life of older people and their participation in local life. In March 2014, 10 projects from all over Europe were awarded this distinction. 16 From the flyer for the Saltenanne center. 17 Thus Gisela Notz in her contribution ‘ Unpaid labor ’ to the dossier ‘ Women in Germany ’ of the Federal Center for Political Education. The figures cited by Notz from the survey of volunteers are those that are still valid today. 18 Notz, ibid. 19 May be retrieved under http ://www.nuz-fronten.de / index.php ?id=400#top1 20 ‘ We may well be able to produce cars faster, but not look after the old or raise children faster ’ The economist Mascha Madoerin on the importance of unpaid and paid care-taking and housekeeping work. ‘FrauenRat [Information service of the German Women’s Council], 2/12, pp. 11-14.

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FUNDED PROJECTS Funding programme Menschen mit Demenz in der Kommune (‘People in the Community Living with Dementia’)

Below is a list of all the projects funded as part of the funding programme Menschen mit Demenz in der Kommune ( ‘ People in the Community Living with Dementia ’ ) that was funded by the Robert Bosch Foundation, and supported and organised by Aktion Demenz. The projects are ordered by federal state and alphabetically. ( Place, title, organisation; FC 1 / 2 / 3 refers to the respective funding cycle. ) You can find more information and contact details at : www.demenzfreundliche-kommunen.de, www.aktion-demenz.de

B A D E N -W U E R T TE M B E R G (B A D E N -W Ü R T TE M B E R G) Esslingen am Neckar : ‘ Demenzoffensive : ausgedacht – ich, du, er sie, Esslingen denkt weiter ’ by the city of Esslingen ( FC 2 ) Freiburg : ‘ Menschen mit Demenz in Freiburg und Region ’ by the ‘ Arbeitsschwerpunkt Gerontologie und Pflege ( AGP ) ’ in the ‘ Forschungs- und Innovationsverbund ’ at the ‘ Evangelische Hochschule Freiburg e.  V. ’ ( FC 1 ) Friedrichshafen : ‘ Demenzkampagne Friedrichshafen – LebenTrotzDemenz ’ by the ‘ Deutsches Rotes Kreuz, Kreisverband Bodenseekreis e. V. ’ ( FC 2 ) Grafenau : ‘ Gutes Leben mit Demenz in Grafenau ’ by the ‘ Paul Wilhelm von Keppler-Stiftung ’ and the ‘ Seniorenzentrum Grafenau ’ ( FC 3 ) Leutkirch : ‘ Kultur-Begleitung ’ by the city of Leutkirch ( FC 3 ) Ludwigsburg : ‘ Circles of Support / Unterstützerkreise für Menschen mit Demenz ’ by the ‘ Landratsamt Ludwigsburg ’ ( FC 3 ) Oberndorf : ‘ Kompetenz Netz Demenz Oberndorf a. N. und Umgebung ’ by the ‘ Altenzentrum Oberndorf ’ in co-operation with the ‘ Sozialstation Oberndorf gGmbH ’ ( FC 1 )

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FUNDED PROJECTS

Schwarzwald-Baar-Kreis : ‘ In Bewegung : Let ’s move ! Das bewegt mich ! Ich beweg mich ! ’ by the ‘ Landratsamt Schwarzwald-Baar-Kreis ’ ( FC 2 ) Sonnenbühl : ‘ Netzwerk Demenz Sonnenbühl – ein gutes Leben mit Betroffenen und für Betroffene ermöglichen ’ by a relative ( FC 1 ) Stuttgart : ‘ Demenz : Stadtteile auf dem Weg ’ by the ‘ Evangelische Gesellschaft Stuttgart e. V. ’ and the ‘ Demenznetz Stuttgart ’ ( FP 2 ) Walldorf : ‘ Komm – wir gehen ! Laufender Seniorenbus ’ by the city of Walldorf ( FC 3 ) B AVA R I A ( B AY E R N ) Landkreis Amberg-Sulzbach : ‘ Demenzfreundliche Region Obere VilsEhenbach ’ by the ‘ AOVE GmbH ’ ( FC 2 ) Bamberg : ‘ Demenz-Initiative für Stadt und Landkreis Bamberg … weil Demenz uns alle angeht ! ’ by the ‘ Landratsamt Bamberg ’ in cooperation with the city of Bamberg ( FC 3 ) Garmisch-Partenkirchen : ‘ Forum Demenz – demenzfreundlicher Landkreis Garmisch-Partenkirchen ’ by the ‘ Kath. Kreisbildungswerk GarmischPartenkirchen ’ ( FC 3 ) Ingolstadt : ‘ In dem Netz Ingolstädter Demenz Netzwerk ’ by the city of Ingolstadt ( FC  2 ) Munich : ‘ Inklusion durch aktive Beteiligung ’ by the ‘ Alzheimer Gesellschaft München  e.  V. ’ ( FC 3 ) Nuremberg : ‘ Initiative Demenzfreundliche Kommune Mittelfranken ’ by the ‘ Angehörigenberatung Nürnberg e.  V. ’ ( FC 3 ) Pfaffenwinkel : ‘ Dialog Demenz im Pfaffenwinkel ’ by the ‘ Alzheimer Gesellschaft Pfaffenwinkel e. V. ’ ( FC 1 ) Pfronten im Allgäu : ‘ Einfach dazugehören ’ by the ‘ Nachbarschaftliche Unterstützung und Zeitvorsorge ( NUZ ) e. V. ’ ( FC 2 ) Wunsiedel : ‘ Die Stadt ist eine Familie ’ by the city of Wunsiedel ( FC 2 ) BERLIN Berlin-Friedrichshain-Kreuzberg : ‘ Vernetzung von Angeboten und Akzeptanz für Menschen mit Demenz ’ by the ‘ Netzwerk für ältere Menschen

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( Gerontopsychiatrisch-Geriatrischer Verbund ) ’ with the ‘ Bezirksamt Friedrichshain-Kreuzberg ’ ( FC 1 ) Berlin-Schöneberg : ‘ Vergißmeinnicht ’ by the ‘ Nachbarschaftsheim Schöneberg Pflegerische Dienste gGmbH ’ and the ‘ Theater der Erfahrungen ’ ( FC 3 ) Berlin-Spandau : ‘ DemenzNetz Spandau ’ by the ‘ Bezirksamt Spandau von Berlin, Abt. Soziales und Gesundheit ’ ( FC 2 ) Berlin-Tempelhof : ‘ Kompendium zu Achtsamkeit und seelsorgerischer Begleitung ’ by the ‘ Geistliches Zentrum für Menschen mit Demenz und deren Angehörige; Arbeitskreis in der Evang. Luther-Kirchengemeinde ’ ( FC 2 ) BRANDENBURG Angermünde / Lychen : ‘ Mitten im Leben : trotz Demenz ’ by the ‘ Volkssolidarität LV Brandenburg e. V. ’ ( FC 3 ) Kloster Lehnin : ‘ Geschichten vom Vergessen – Schüler schreiben Texte über Demenz ’ by the ‘ Evangelisches Diakonissenhaus Berlin Teltow Lehnin ’ ( FC 3 ) Kloster Lehnin : ‘ Gemeinsam ein Musical erarbeiten ’ by the municipality of Kloster Lehnin ( FC 2 ) Spremberg : ‘ Demenz gemeinsam leben ’ by the ‘ Volkssolidarität LV Brandenburg e.  V. RV “ Lausitz ” ’ ( FC 2 ) BREMEN Bremen : ‘ Making Memories : Kunstvermittlung für Menschen mit Demenz und Qualifizierung von Pflegenden ’ by the ‘ AWO Bremen Kreisverband ’ and the ‘ Kunsthalle Bremen ’ ( FC 1 ) HAMBURG Hamburg-Eppendorf : ‘ “ Ich kann was tun ” : Lobby für Menschen mit Demenz ’ by the ‘ Ev.-luth. Kirchengemeinde St. Martinus-Eppendorf ’ ( FC 1 )

285

FUNDED PROJECTS

H E S S E (  H E S S E N  ) Darmstadt : ‘ Nicht( s )Überstürzen ! Bewegungsangebot ’ by the ‘ Demenz Forum Darmstadt e. V. ’ ( FC 3 ) Frankfurt : ‘ Hilda-Mobil ’ by the ‘ Bürgerinstitut e. V. Soziales Engagement in Frankfurt ’  ( FP 3 ) Frankfurt : ‘ Demenzfreundliches Quartier ’ by the ‘ Frankfurter Verband für Alten- und Behindertenhilfe e. V., Offene Seniorendienste ’ ( FC 2 ) Landkreis Gießen : ‘ Netzwerk kommunaler Demenzpaten / Demenzfürsprecher ’ by the ‘ Initiative Demenzfreundliche Kommune : Stadt und Landkreis Gießen e. V. ( IDfK ) ’  ( FC 2 ) Hochheim am Main : ‘ Für eine Zukunft mit Demenz ’ by the ‘ Caritasverband Main-Taunus e. V. ’ and the city of Hochheim am Main ( FC 2 ) Holzhausen am Hünstein : ‘ Café Hand in Hand – aktiv mit Demenz ’ by the ‘ Alzheimer Gesellschaft Marburg-Biedenkopf e. V. ’ ( FC 2 ) Kassel : ‘ Kunststücke ’ by the ‘ Diakonisches Werk Kassel / ZEDA ’ ( FC 3 ) Laubach : ‘ Kunst- und Aktionstage Demenz ’ by the ‘ Oberhessisches Diakoniezentrum Laubach ’ ( FC 1 ) Oberursel : ‘ Oberursel bewegt sich – Begegnung und Teilhabe Demenzkranker fördern ’ by the ‘ Caritasverband für den Bezirk Hochtaunus e. V. ’ ( FC 2 ) Wiesbaden : ‘ Blickwechsel : Perspektiven von Kunst und Demenz ’ by the ‘ Bellevue-Saal e.  V. ’ and ‘ Kunst und Begegnung ’ ( FC 3 ) M ECK LE N B U R G -W E S TE R N P O M E R A N I A ( M ECK LE N B U R G -VO RP O M M E R N  ) Greifswald : ‘ Glücken Gedanken ? Lücken in Gedanken ’ by the ‘ Pommerscher Diakonieverein e. V. in Züssow ’ and the ‘ Bürgerhafen ’ ( FC 2 ) Sassnitz : ‘ Wir sind die Anderen – Demenz als Chance im Netzwerk einer Hafenstadt ’ by the ‘ Grundtvighaus e. V. ’ ( FC 3 ) Schwerin : ‘ Demenzfreundliche Kommune Schwerin ’ by the ‘ Stadtverwaltung Schwerin, Bürgeramt ’ ( FC 2 )

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LOW E R S A XO N Y (  N I E D E R S ACH S E N  ) Cloppenburg : ‘ Jeder Mensch ist wertvoll – wie desorientiert er auch sein mag ! ’ by the city of Cloppenburg ( FC 3 ) Goldenstedt : ‘ GOLD – Goldenstedter Offensive für ein Leben mit Demenz ’ by the municipality of Goldenstedt ( FC 2 ) Hohenhameln : ‘ Hand in Hand im Bördeland – Einbeziehung Demenzkranker in das dörfliche Leben ’ by the ‘ Verein Hand in Hand im Bördeland Generationenverein Börderegion e. V. ’ ( FC 3 ) Stadthagen : ‘ Initiative Demenz und Kultur ’ by the ‘ Kommunikationszentrum Alte Polizei e. V. ’ ( FC 3 ) Tarmstedt : ‘ Dorfplatz : Demenz auf dem Lande ’ by the ‘ Samtgemeinde ’ Tarmstedt ( FC  1 ) Westoverledingen : ‘ Schätze entdecken – Medienangebote und Austausch zur individuellen und aktivierenden Begleitung von Menschen mit Demenz ’ by the ‘ Gemeindebücherei Westoverledingen ’ ( FC 2 ) Wilhelmshaven : ‘ Menschen mit Demenz begegnen ’ by the ‘ Mehrgenerationenhaus Wilhelmshaven ’ and the ‘ Ev.-luth. Kirchengemeinde Bant ’ ( FC 2 ) N O R TH R H I N E-W E S TPH A LI A (  N O R D R H E I N -W E S TFA LE N  ) Ahlen : ‘ Integration demenzkranker Menschen mit türkischem Migrationshintergrund ’ by the ‘ Alzheimer Gesellschaft im Kreis Warendorf e.  V. ’ ( FC 2 ) Bielefeld : ‘ Bielefelder Initiative Demenz ’ by the city of Bielefeld ( FC 3 ) Bocholt : ‘ Aktionsplan Demenz ’ by the city of Bocholt ( FC 1 ) Cologne : ‘ Dabei und mitten drin – Gaben und Aufgaben demenzsensibler Kirchengemeinden ’ by the ‘ Alexianer Köln GmbH ’ and the ‘ DemenzServicezentrum Region Köln und das südliche Rheinland ’ ( FC 3 ) Cologne : ‘ Kulturelle Teilhabe für Menschen mit Demenz in Köln ’ by the ‘ dementia+art  e.  V. ’ ( FC 3 ) Landkreis Düren : ‘ Mit uns : Demenzfreundlicher Kreis Düren ’ by the ‘ Kreis Düren : Amt für Chancengleichheit Familie und Senioren ’ ( FC 2 )

287

FUNDED PROJECTS

Dusseldorf : ‘ Auf dem Weg zu einer demenzfreundlichen Kirchengemeinde ’ by the ‘ Diakonie Düsseldorf Gemeindedienst der ev. Kirchengemeinden e.  V. ’ ( FC 3 ) Enger / Spenge im Kreis Herford : ‘ Wir sind Nachbarn – Demenz berührt mit vielen Gesichtern ’ by the ‘ Leben-Wohnen-Begegnen e. V.; Generationen Treff Enger ’ ( FC 2 ) Ennepe-Ruhr-Kreis : ‘ Klar dabei ! Bewusst handeln für Menschen mit Demenz ’ by the ‘ Ennepe-Ruhr-Kreis, Fachbereich Soziales und Gesundheit ’ ( FC 2 ) Gelsenkirchen : ‘ Demenz – ein Thema für Kinder und Jugendliche ’ by the ‘ Caritasverband der Stadt Gelsenkirchen e. V./Horizont ’ ( FC 1 ) Hilden : ‘ Verstehen und verstanden werden – Miteinander Leben mit Demenz ’ by the city of Hilden ( FC 3 ) Krefeld : ‘ Da-Sein ’ by the ‘ Werkhaus Krefeld e. V. ’ ( FC 2 ) Kreis Minden-Lübbecke : ‘ Sport und Talk Minden ’ by the ‘ Leben mit Demenz – Alzheimergesellschaft Kreis Minden-Lübbecke e. V. ’ ( FC 2 ) Münster : ‘ Sozialräumliche Bewusstseinsbildung ’ by the ‘ Gemeindediakonie Hiltrup  e.  V. ’ ( FC 2 ) R H I N E L A N D - PA L ATI N ATE (  R H E I N L A N D - PFA L Z  ) Bitburg : ‘ Zeitlos – Demenz-Offensive Eifel ’ by the ‘ DRK-Bildungswerk Eifel e.  V. ’ ( FC 3 ) Bobenheim-Roxheim : ‘ Menschen mit Demenz gehören dazu ’ by the ‘ Protestantisches Dekanat Frankenthal ( P falz ) ’ ( FC 2 ) Nieder-Olm : ‘ Demenzfreundliche Verbandsgemeinde Nieder-Olm ’ by the ‘ Gemeinnützige Gesellschaft für ambulante und stationäre Altenhilfe ( GFA mbH ) ’ ( FC 1 ) S A XO N Y ( S ACH S E N ) Pirna : ‘ Besser leben mit Demenz ’ by the ‘ Zentrum für Begegnung, Beratung und Bildung e. V. Pirna ( ZBBB ) ’ ( FC 2 ) Radebeul : ‘ Menschen mit Demenz in der Kommune – Radebeul ’ by the ‘ Familieninitiative Radebeul e.  V. ’ ( FC 1 ) Radebeul :  ’Nicht ohne meine Nachbarn – Menschen mit Demenz in unserer Mitte ’ by the ‘ Alzheimer Gesellschaft Radebeul Meißner Land e. V. ’ ( FC 3 ) 288

FUNDING PROGRAMME MENSCHEN MIT DEMENZ IN DER KOMMUNE

Scheibenberg : ‘ EULE – Engagierte Unterstützung lotst Einwohner mit Demenz ’ by the ‘ Scheibenberger Netz e. V. ’ ( FC 3 ) Zwickau : ‘ Vergesslich ? – Halb so schlimm ! ’ by the ‘ Verein Gesundheit für alle e.  V. ’ ( FC  2 ) S A XO N Y-A N H A LT (  S ACH S E N -A N H A LT  ) Wittenberg : ‘ Die Frau, die den Sitzplatz vergaß ’ by the ‘ Theaterjugendclub “ ­Chamäleon ” e.  V. ’ ( FC 2 ) S CH LE S W I G - H O L S TE I N Kaltenkirchen im Kreis Segeberg : ‘ Wir sind Nachbarn – wir machen mit ’ by the ‘ P flegestützpunkt Kreis Segeberg ’ ( sponsoring organisation : ‘ Altern und ­Familie  e.  V. ’ ) ( FC 2 ) Kiel ( Neumünster ) : ‘ Kulturpaten für Menschen mit Demenz ’ by the ‘ Diakonisches Werk Altholstein GmbH ’ ( FC 2 ) TH U R I N G I A (  TH Ü R I N G E N  ) Erfurt : ‘ Integration und Begleitung von Menschen mit Demenz in Erfurt ’ by the ‘ Schutzbund der Senioren und Vorruheständler Thüringen e. V. ’ ( FC 2 ) Gera : ‘ Was vom gestern übrig bleibt – Demenz – Hilfenetzwerk Gera ’ by the Otto Dix city Gera ( FC 3 ) Landkreis Nordhausen : ‘ Würdevoll Altern – trotz Demenz gemeinsam ermöglichen ’ by the ‘ Landratsamt Nordhausen, Fachbereich Jugend und Soziales ’ ( FC 2 )

Funded by the

Supported by

Robert Bosch Foundation

Aktion Demenz e. V.

289

Social Sciences Maik Fielitz, Laura Lotte Laloire (eds.) Trouble on the Far Right Contemporary Right-Wing Strategies and Practices in Europe 2016, 208 p., 19,99 € (DE), ISBN 978-3-8376-3720-5 E-Book: 17,99 € (DE), ISBN 978-3-8394-3720-9 EPUB: 17,99 € (DE), ISBN 978-3-7328-3720-5

Andréa Belliger, David J. Krieger Organizing Networks An Actor-Network Theory of Organizations 2016, 272 p., 34,99 € (DE), ISBN 978-3-8376-3616-1 E-Book: 34,99 € (DE), ISBN 978-3-8394-3616-5

Julia Sattler (ed.) Urban Transformations in the U.S.A. Spaces, Communities, Representations 2016, 426 p., 39,99 € (DE), ISBN 978-3-8376-3111-1 E-Book: 39,99 € (DE), ISBN 978-3-8394-3111-5

All print, e-book and open access versions of the titels in our entire list are available in our online shop www.transcript-verlag.de/en!

Social Sciences Frank Eckardt, Javier Ruiz Sánchez (eds.) City of Crisis The Multiple Contestation of Southern European Cities 2015, 264 p., 29,99 € (DE), ISBN 978-3-8376-2842-5 available as free open access publication E-Book: ISBN 978-3-8394-2842-9

Derya Özkan (ed.) Cool Istanbul Urban Enclosures and Resistances 2014, 172 p., 29,99 € (DE), ISBN 978-3-8376-2763-3 E-Book: 26,99 € (DE), ISBN 978-3-8394-2763-7

Michael Friedman, Samo Tomsic (eds.) Psychoanalysis: Topological Perspectives New Conceptions of Geometry and Space in Freud and Lacan 2016, 256 p., 34,99 € (DE), ISBN 978-3-8376-3440-2 E-Book: 34,99 € (DE), ISBN 978-3-8394-3440-6

All print, e-book and open access versions of the titels in our entire list are available in our online shop www.transcript-verlag.de/en!