World Alzheimer Report 2019

World Alzheimer Report 2019

Attitudes to dementia

Author: Alzheimer's Disease International

Contributors: We would like to thank the large number of contributors involved in this world report, including the survey translators, from 32 countries, without whom this would not have been possible.

The views expressed in the essays, case studies and programmes to reduce stigma are those of the authors.

Attitudes to dementia survey: London School of Economics and Political Science: Dr Sara Evans-Lacko, Jem Bhatt, Asst Professor Adelina Comas-Herrera, Dr Francesco D'Amico, Dr Nicolas Farina, Sophie Gaber, Prof Martin Knapp, Maximilian Salcher-Konrad, Madeleine Stevens, Emma Wilson.

Expert essays, case studies, and programmes to reduce stigma: (Alphabetical order)

Dementia Australia Sue Baker Prof Sube Banerjee Dr Linda Barclay Dr Anna Brorsson Dr Zoe Cashin Su-Yuan Chan Asst Prof Adelina Comas-Herrera Olivier Constant Prof Colm Cunningham Dr Stephanie Daley Walter Dawson Dr Nicolas Farina Rosa Ma Farr?s Prof Cleusa Ferri Sophie N. Gaber Nouha Ben Gaied Dr Serge Gauthier Dale Goldhawk Howard Gordon Dr Nori Graham

Dr Wendy Grosvenor Birgit Heuchemer Jayme Hill Berrie Holtzhausen Prof Kristen Jacklin Shiva Krishnamurthy Pippa Kelly Maryna Lehmann Asst Prof Christopher Lind Christine Maddocks Victor Madrigal-Borloz Dr Fabiana da Mata Prof Elaine Mateus Dr Etuini Ma'u Andre Mauritz Pare Meha Sarah-Jane Meyer Princess Nouf bint Muhammad Mar?a Cecilia L?pez Murga Dr Christine Musyimi Elizabeth Mutunga

Prof David Ndetei Prof John Oetzel Dr Deborah Oliveira Prof JB Orange Guadalupe Ponce Ozuna Jim Pearson Silvia Perel-Levin Dr Jaewon Phee Karen Pitawanakwat Mario Possenti Rangimahora Reddy Glenn Rees Prof Nicolas R?sch Dr Hamed Al Sinawi DY Suharya Ruth Stone Kate Swaffer LiYu Tang Sarah Tilsed Lawrence H Yang Jessica Young

Translators: (Alphabetical order)

ARDSI (Alzheimer's and Related

disorders Society of India)

Nancy Kalaba

Alzheimer's South Africa

Joost Martens

Muriel Rason Andriamaro

Prof Elaine Mateus

Bulga Bulganchimeg

Nilanjana Maulik

Susanne van den Buuse

Elizabeth Mutunga

Sophie Gaber

Tuan Nguyen

Konstantinos Gkikas

Meera Pattabiraman

Major Gopalakrishnan

Katarzyna Pogorzelska

Stefania Ilinca

Mario Possenti

Sebastien Kabacinski

Anastasia Psoma

Faraneh Kaboli

Aditya Putra

Thankane Raditapole Narendhar Ramasamy Isabelle Salameh Susanna Saxl Alexandra Shchetkina Dr Hamed AL Sinawi LiYu Tang Petra du Toit Huali Wang Noriyo Washizu Peach Wattana Jackie Wong

Published by Alzheimer's Disease International (ADI), London. September 2019. Copyright ? Alzheimer's Disease International

Suggested citation: Alzheimer's Disease International. 2019. World Alzheimer Report 2019: Attitudes to dementia. London: Alzheimer's Disease International.

Design: David O'Connor ? daviddesigns.co.uk

Due to the diverse nature and number of contributors to this report several key phrases are used interchangeably, including: Carers / caregivers / care providers / care partners Healthcare practitioners / healthcare providers / healthcare professionals

World Alzheimer Report 2019

Attitudes to dementia

Partners & donors

ADI would like to thank our corporate partners and donors: Anonymous Foundation Helen Daniels Bader Fund, A Bader Philanthropy Biogen Boehringer-Ingelheim Janssen Lundbeck International Neuroscience Foundation Roche Otsuka America Pharmaceutical, Inc. Mary Oakley Foundation The Van Otterloo Family Foundation

ATTITUDES TO DEMENTIA

5

Contents

Survey infographic

8

Foreword

10

Executive summary

13

CHAPTER 1

What is stigma?

17

CHAPTER 2:

Attitudes to dementia survey results

21

Appendix 1: WHO Regions map and World Bank Income Groups 2019-2020 66

Appendix 2: Forest plots for country comparisons

70

CHAPTER 3

Expert essays

3.1 Stigma: a personal view 7 years on. Dr Nori Graham. Honorary Vice President of ADI and a Vice President of the Alzheimer's Society (England), previous chair of each organisation; Honorary Fellow of the Royal College of Psychiatrists and Emeritus Consultant in the Psychiatry of Old Age at the Royal Free Hospital; honorary doctorate public services to the Open University. 88

3.2 Stigma, dementia and age. Silvia Perel-Levin, International Longevity Centre

Global Alliance (ILC GA) representative to the UN, Geneva; Chair, Geneva NGO

Committee on Ageing

90

3.3 Thinking more deeply about dementia friendliness. Dr Linda Barclay,

Philosopher at Monash University, Australia specialising in disability and justice

and Glenn Rees, Chair, Alzheimer's Disease International

92

3.4 The role of the media: Help or hinderance? Pippa Kelly, UK. Journalist,

dementia blogger, public speaker

95

3.5 Stigma in 2019; you must be joking! Dale Goldhawk, Vice Chair, Alzheimer's

Disease International & veteran advocacy journalist

97

3.6 Alzheimer's disease, stigma and disclosure. Prof Nicolas R?sch, Ulm

University and BKH G?nzburg, Germany

98

3.7 The costs of dementia: advocacy, media and stigma. Adelina Comas-

Herrera, Assistant Professorial Research Fellow, London School of Economics

and Political Science

100

3.8 Women as carers: gender considerations and stigma in dementia care.

Dr Nicolas Farina, PhD, MSc, BSc, Research Fellow in Dementia, Centre for

Dementia Studies, Brighton & Sussex Medical School

102

3.9 "What Matters Most"; Conceptualising cultural aspects of stigma of

Alzheimer's disease and other dementias. Lawrence H Yang, Department

of Social and Behavioral Sciences, New York University; Department of

Epidemiology, Columbia University

104

3.10 Alzheimer's disease in the lived experience of Lesbian, Gay, Bisexual,

Trans and Gender Diverse (LGBT) persons. Victor Madrigal-Borloz.

Senior Visiting Researcher at the Harvard Law School Human Rights Program

and United Nations Independent Expert on protection from violence and

discrimination based on sexual orientation and gender identity.

106

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