World Alzheimer Report 2012

Overcoming the stigma of dementia

World Alzheimer Report 2012
Overcoming the stigma of dementia
Nicole L Batsch
Mary S Mittelman, DrPH, NYU Langone Medical Center
Alzheimer’s Disease International
Nicole L Batsch has 16 years’ experience in developing ageing and dementia
programmes across the US. Her expertise encompasses many disciplines including
developing a literacy programme for seniors, family carer interventions, a hospitalbased senior wellness centre, dementia staff training for home care and care homes
and initiatives for people with early stage dementia living in the community. One
programme was internationally disseminated based on its successful researchoutcomes. She recently served on the board of the American Society on Aging.
Ms Batsch is currently a PhD Candidate at King’s College London in the Institute ofGerontology focusing on dementia.
Mary S Mittelman received a Doctor of Public Health in psychiatric epidemiology
and an MS in biostatistics from Columbia University School of Public Health. Dr
Mittelman is Director of the Psychosocial Research and Support Program of the NYU
Comprehensive Center on Brain Aging and Research Professor in the NYU Langone
Medical Center Department of Psychiatry. For more than 20 years, she was Principal
Investigator of the NYU-Spouse Caregiver Intervention study, which has won many
awards internationally. In the past few years, Dr Mittelman has made a commitment
to disseminate research findings and to collaborate with community organizations to
implement evidence-based psychosocial interventions.
Published by Alzheimer’s Disease International (ADI), London. September 2012.
Copyright © Alzheimer’s Disease International.
Essay authors
Kees Blankman
Michael Ellenbogen
Nori Graham
Lynda Hogg
Peter Mittler
Peter Piot
Michael Splaine
Myrra Vernooij-Dassen
Andrew Watt
Essays are the words of their respective authorsand each author retains the copyright of their essay.
Acknowledgements
Federico Ortiz-Moreno, Victor Riega Garcia, Athens Alzheimer’s Association and
Alzheimer’s Disease Chinese for translating the survey and responses.
Suzanne Hardy for assisting with analysis of the survey data.
Alzheimer’s Association (US) for support with reviewing this Report.
All of the people with dementia and carers who completed our survey, and those that helped to publicise it.
Design: Julian Howell www.julianhowell.co.uk
Cover photo: © Barbara Kinney, used with permission from the Alzheimer’s Association, USA
Nutricia for their kind support in supporting the distribution of this World Alzheimer Report 2012

overcoming the stigma of dementia

Alzheimer’s Disease International

World Alzheimer Report 2012

Overcoming the stigma of dementia
Nicole L Batsch
Mary S Mittelman
Alzheimer’s Disease International1

2

Alzheimer’s Disease International: World Alzheimer ReporT 2012

PrefaceS

ymptoms of dementia are perceived differently in different parts of
the world. This includes considering dementia as a normal part ofageing, mental illness, something metaphysical linked to supernaturalor spiritual beliefs or as an irreversible disease of the brain. It is very
important that there is better public awareness and understanding to
reduce the stigma associated with dementia. This can happen only withwell developed and executed political and public campaigns to support
a societal shift towards acceptance and inclusion of people affected bydementia.
Low levels of understanding about dementia lead to various
misconceptions resulting in perpetuation of stigma which is prevalent inmost countries at various levels. People with dementia are often isolated,or hidden, because of stigma or the possibility of negative reactions fromneighbours and relatives to behavioural and psychological symptoms.
The idea that nothing can be done to help people with dementia often
leads to hopelessness and frustration.
Urgent action is required to improve the understanding of dementia andso reduce stigma. It is with this aim that Alzheimer’s Disease International(ADI) has produced this report on stigma to coincide with World
Alzheimer’s Month 2012.
Overcoming stigma will help tremendously with achieving ADI’s vision of
an improved quality of life for people with dementia and carers.

Dr Jacob Roy Kuriakose
Chairman
Alzheimer’s Disease International

3

overcoming the stigma of dementia

Contents
Foreword 5
Chapter 1: Background
Background 7
Defining stigma 8
What do people with dementia say about stigma and life
chances? 9
What about the carers? 10
Stigma and old age 11
Dementia compared to other conditions 11
Dementia and mental illness 12
Stress-related stigma 12
Reducing stigma 12
Reducing stigma through information 13
Media and stigma 13
Public policy and future directions 13
References 13
Chapter 2: Survey results
Survey methodology 21
Survey respondents 22
Survey results: People with dementia  24
Concealing the diagnosis 24
Being treated differently 24
Avoiding friendships and close relationships 25
Awareness of dementia 27
Stigma about people with dementia 28
Coping with stigma 29
Reducing stigma 30
Inclusion in everyday life 30
How to include people with dementia 31
Survey results: Carers  33
Concealment 33
Being treated differently 35

Friendships with people not connected and connected
to dementia 38
Friendships with people affiliated with dementia 39
Understanding dementia 39
Stigma about people with dementia 40
Stigma about carers 41
Coping with stigma 43
Reducing stigma 43
Including people with dementia in everyday life 45
How to include people with dementia in everyday
life 47
References 48

Chapter 3:
Examples of programmes to reduce stigma
People with dementia speaking out 55
Dementia-friendly communities 57
Dementia experiences 60
Outreach programmes 61
Promoting earlier diagnosis 62
Art and physical activity and dementia 63
Summary 65
References 65
Chapter 4: Conclusions and recommendations
Conclusions 72
Statistics 72
Understanding and impact of dementia 73
Stigma and ageing 73
Learning from other areas 73
Summary 73
Recommendations 74
A world without stigma … how would it look? 75

Essays
The realities of Alzheimer’s and overcoming stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . Michael Ellenbogen 15
Overcoming stigma is the first step to beating Alzheimer’s disease and dementia  . . . Peter Piot 17
Stigma reduction in government plans  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Michael Splaine 19
Mind games – smoke and mirrors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lynda A Hogg 49
On stigma  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Andrew Watt 51
Enhancing legal rights for people with Alzheimer’s disease by improving quality . . . . . Kees Blankman 53
Stigma: a personal view . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Nori Graham 66
What can we learn from the disability movement?  . . . . . . . . . . . . . . . . . . . . . . . . . . . Peter Mittler 68
My career with stigma and dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Myrra Vernooij-Dassen 70

4Alzheimer’s Disease International: World Alzheimer ReporT 2012

Peru Memory and health screenings for the general public are frequently
conducted as part of awareness-raising campaigns in the developingworld

Hungary The Hungarian Alzheimer Society worked with the Red Cross
and Rotaract and coordinated the turning off of the lights on Budapest’s
Chain Bridge for one hour to mark World Alzheimer’s Day in 2009

Australia Large-scale efforts in developed countries, like Alzheimer’s
Australia’s 2011 Fight Dementia campaign, encourage mass public
involvement to promote key messages

China World Alzheimer’s Day on 21 September is the largest coordinatedinternational effort to disseminate information to the publicSouth Korea Support groups for carers, such as South Korea’s ‘Loving
our wife’ group, enable the exchange of experiences and creation of new
friendships

Dominican Republic Sharing messages through the media can increase
public knowledge and awareness while demonstrating solidarity for the
cause

Hong Kong SAR China Enjoyable public events hosted by national
Alzheimer associations in partnership with other local groups can beeffective at drawing communities together

Sri Lanka Memory Walk was developed in the USA by the Alzheimer’s
Association and is now a popular annual event in many countries aroundthe world

5

overcoming the stigma of dementia

Foreword
Alzheimer’s Disease International (ADI) has released
three previous World Alzheimer Reports:• In 2009 on the global prevalence and impact ofdementia• In 2010 on the global economic cost of the disease• In 2011 on the benefits of early diagnosis andintervention.
We also worked with the World Health Organization(WHO) on their report Dementia: a public health priority,
which was released in April 2012.
We estimate that there were 36 million people living withdementia worldwide in 2010, increasing to 66 million
by 2030 and 115 million by 2050 1. Nearly two-thirds
live in low and middle income countries, where the
sharpest increases in numbers are set to occur as elderly
populations increase.
We estimate the global cost of dementia in 2010 at $604
billion 5. This is 1% of global GDP and it is likely thatthese costs will increase in proportion to the numberof people with dementia. In lower income countries thecost of health and social care may go up more rapidly, asawareness and demand for services increases.
The WHO Dementia report estimates there were 7.7
million new cases of dementia in the year 2010, or one
new case every four seconds 3. That is already threetimes as many as HIV/AIDS (2.6 million per year 4).
Assuming that incidence will increase in line withprevalence, since global ageing is driving both numbers,
by 2050 the incidence will have increased to 24.6 million
new cases annually. The average annual increase
between 2010 and 2050 will be 16.15 million. This means
we will have 646 million new cases in these 40 years on
top of the current 36 million, unless there is a cure or atreatment that delays the onset or progression of thedisease.
682 million people will live with dementia in the next
40 years! That is significantly more than the populationof all of North America (542 million) and nearly as muchas all of Europe (738 million) 5.

Our healthcare and financial systems are not prepared
for this epidemic. Dementia is the main cause of
dependency in older people 1, and we will not haveenough people to care for these large numbers ofpeople with dementia. Globally, less than 1 in 4 people
with dementia receive a formal diagnosis 6. Without
a diagnosis, few people receive appropriate care,treatment and support.
Looking at this data, it is apparent that there is an urgent
need for action. There is no time to lose! But not enoughis being done. Research funding from public sourcesin high income countries is at a level of 10% of current
cancer research 7.
Stigma is something which causes an individual to
be classified by others in an undesirable, rejectedstereotype. Misconceptions of dementia and the people
who are affected by it are a problem around the world.
Stigma prevents people from acknowledging symptoms
and obtaining the help they need. It causes individuals
and organisations to behave in ways that are unhelpful,emphasising the symptoms of dementia rather than
supporting the abilities that people with dementia have.
At ADI, we believe it is a barrier to improving dementia
care and furthering research. As Professor Peter Piotsays in his essay in this report, ‘Overcoming stigma is thefirst step to beating Alzheimer’s disease and dementia’.
To learn more about the stigma of dementia and open abroader discussion about it, we have carried out a survey
among the experts: the people with dementia and theirfamily carers. We asked a number of people directly
affected by the disease or working in the field to write
essays and we reviewed relevant literature. We brought
together good examples of projects and activities aroundthe world that we believe can reduce stigma. We hopethat this World Alzheimer Report 2012 will encourageothers to join us in identifying and eliminating stigma,
and, in turn, improve the lives of people with dementia
and their carers.
Marc Wortmann
Executive Director
Alzheimer’s Disease International

1

Alzheimer’s Disease International. World Alzheimer Report 2009. London : Alzheimer’s Disease International, 2009.

2

Wimo, A and Prince, M. World Alzheimer Report 2010: The Global Economic Impact of Dementia. London : Alzheimer’s Disease International, 2010.

3

World Health Organization. Dementia: a public health priority. Geneva : World Health Organization, 2012. ISBN 978-92-4-156445-8.

4

UN Joint Programme on HIV/AIDS. Global Report: UNAIDS Report on the Global AIDS Epidemic: 2010. 2010. ISBN 978-92-9173-871-7.

5

Continent. Wikipedia, The Free Encyclopedia. [Online] 29 August 2012. [Cited: 30 August 2012.] http://en.wikipedia.org/w/index.php?title=Continent&oldid=509759408.

6

Prince, M, Bryce, R and Ferri, C. World Alzheimer Report 2011. London : Alzheimer’s Disease International, 2011.

7

National Institutes of Health. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) FY2011. NIH Research Portfolio
Online Reporting Tools (RePORT). [Online] 13 February 2012. [Cited: 20 August 2012.] http://report.nih.gov/categorical_spending.aspx.

6

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Chapter 1

What is dementia?
Dementia is a syndrome that can be caused bya number of progressive illnesses that affectmemory, thinking, behaviour and the ability toperform everyday activities.
Alzheimer’s disease is the most common typeof dementia. Other types include vasculardementia, dementia with Lewy bodies andfrontotemporal dementia.
Dementia mainly affects older people, although
there is a growing awareness of cases that start
before the age of 65. After age 65, the likelihoodof developing dementia roughly doubles every five
years.
A more detailed overview of dementia can befound in the World Alzheimer Report 2009,
available from www.alz.co.uk/worldreport

The World Alzheimer Reports
This report is one of a series that ADI has
published. Each report covers a different topic.
The World Alzheimer Report 2009 contains acomprehensive global study of the prevalence of
dementia and looks at levels of mortality, disability,strain on carers and dependency. The report also
includes an overview of what dementia is andexamples of good national dementia plans andhealth service responses.
The World Alzheimer Report 2010 provides
the most comprehensive picture yet of the
global economic impact of Alzheimer’s disease
and dementia and includes an estimate of theworldwide cost of dementia, including direct
medical costs, direct non-medical costs and costs
of informal (family) care.
The World Alzheimer Report 2011 looks at thebenefits of early diagnosis and intervention, basedon the first-ever systematic review of the evidenceon early diagnosis and early intervention for
dementia.
The reports are available free fromwww.alz.co.uk/worldreport

Background
Dementia is not the first illness andlikely will not be the last where theconversation and debate around stigma
will be necessary. Everyone talks about
the stigma of dementia, but it can be
described broadly and on multiple levels.
Particularly on a global level, what it means
to have dementia can change from thegovernment policy level to regional andorganisational levels to the family andindividual level. Understanding the causes
and potential solutions at each level isimportant.
Government and non-governmentorganisations in some countries havebeen working tirelessly to pass laws aimed
at eliminating discriminatory practices
such as making people with dementia
eligible for disability schemes. Regionalorganisations within countries have worked
with local governments to improve accessto services and delay entry to residentialcare, most of the time by trying to reduce
stigma amongst family carers and healthand social service professionals throughincreased education and regulations.
At the heart of this report are theindividuals with dementia and their familycarers. Each faces and experiences stigma
differently.

7

overcoming the stigma of dementia · Chapter 1: Background‘Stigma is an attribute, behaviour or reputation
which is socially discrediting in a particular way:
it causes an individual to be mentally classified
by others in an undesirable, rejected stereotype
rather than in an accepted, normal one.’ 1
Identifying stigma is important because 36 million people
have dementia worldwide and – despite the best efforts
in early diagnosis, treatments, care and support being
offered by countries around the world – we all struggle
with the same basic issue: stigma prevents people fromacknowledging symptoms and obtaining the help theyneed to continue to live a good quality of life.
Through this report, we hope to:• Provide background on stigma and dementia• Share results from a worldwide survey conducted withpeople with dementia and carers on their personal
experiences of stigma• Highlight best practices in the field of dementia andmake recommendations which could help reduce
stigmaWe have also included a selection of essays from thosewith expertise or experience relevant to the topic. In
preparing this report, we found that the literature on
stigma in dementia was very limited, and we hope thatthe publication of this World Alzheimer Report 2012 will
stimulate discussion, research, and action to reduce thestigma of dementia.

BackgroundIn the past, in most industrialised countries, the generalperception of people with dementia was that they
were a burden on society and should be locked away
in institutions. In the 1990s, the first drug treatments
became available. They were not curative, but began toprovide symptom management. Additional treatments
are still being developed, while a search for a cureremains the ultimate goal. In lower income countries,
drug treatments remain largely unavailable and, in many
places, people with dementia are still locked awayfrom society, whether in institutions or hidden by family
members.

STIGMA STIGMA STIGMA STIGMA STIGMA

1900s

1990s – 2000s

futureLocked away
and forgotten

Medicalisation throughdiagnosis and drug
treatment

Non-medicalisation
and acceptance insociety
Eventual cure

There is now greater public awareness of dementia
but not of its causes or progression. Most people areunaware of the fact that dementia is caused by a medical
disorder and that the symptoms of dementia are theresult of physical damage to the brain. This leads toinaccurate assumptions about its effects on the person
and his or her family and negative stereotypes about
how a person with dementia will behave. While publicawareness of the existence of dementia has increased,that has not, as yet, led to a greater acceptance ofindividuals who are coping with dementia.
By discussing stigma, are we further stigmatising people
with dementia by separating them out or providing alabel? To eventually reduce stigma, society first needs toidentify the causes; the false beliefs that lead to it. How
does stigma affect the lives of people with dementia andcarers? After a period of identification of the reasonsfor the problem, resources can be allocated to provide
solutions. In the end, solutions create less of a need forpeople to be singled out as they have the necessary
support and become a normalised part of society.
Several governments have developed national policies
or dementia strategies to aid progress in research,
provide support for people with dementia and carers,
and address the health and financial impact of dementia
within their countries. The national policies also include
directives toward stigma reduction, pointing to stigma as
one cause of the gap between prevalence estimates andnumbers of people with a diagnosis 2. As less than 50%
of people with dementia are formally diagnosed 2, stigma
is certainly one probable cause. These government
policies share the common goal of reducing stigma,
although there are many differences in approaches being
funded and tested 3.
National reports in both the US and the UK indicate that
Alzheimer’s and dementia are among the most feared
diseases associated with getting older. The fear ofgetting a dementia diagnosis is greater than the fear ofdeveloping cancer, heart disease, diabetes or stroke 4.
Plans that exist in France, Australia, Wales and Englandacknowledge that ‘lack of knowledge’ is a cause of
stigma and therefore their stigma reduction plans focus
on increasing community awareness 3.
Scotland’s national dementia plan includes ‘overcoming
the fear of dementia’ as one of its plan’s five key goals.
The plan seeks to improve access to diagnosis byproviding general practitioners with information andresources 5. The Scottish plan also includes ‘treating
people with dignity and respect’, especially in careand health services. In addition, the government is
actively including people with dementia and carers in
the development of policies. Finland’s plan ‘will promote
positive attitudes towards people with dementia in orderto guarantee their basic human rights, including the rightto self-determination’ 6.
Several countries including Australia, England andScotland have higher education degrees in dementia
as a speciality, not only within clinical training in8Alzheimer’s Disease International: World Alzheimer ReporT 2012

psychiatry, nursing or neuroscience, but also within thesocial sciences. Special training for future dementia
care specialists through higher education elevates thecredibility of the discipline.
In ‘Dementia: a public health priority’, a report by theWorld Health Organization (WHO) to which Alzheimer’s
Disease International (ADI) contributed, the findings led
to the conclusion that:‘Dementia is a global public health challenge. A rangeof actions is required to improve care and services forpeople with dementia and their caregivers. These actions
include advocacy and awareness raising, developing andimplementing dementia policies and plans, health systemstrengthening, capacity-building, supporting caregivers
and research. The actions need to be context-specificand culturally relevant.’ 7
For the WHO report, a survey was conducted of ADI’s
member organisations to identify country-level stigma
practices as seen by people working in the field ofdementia care. This World Alzheimer Report 2012 aims totake the survey done for the WHO report one step further
by adding the voices of people with dementia and carers
who are living with the impact of stigma every day. Moreinformation about our new survey and a comparison of
the results will be shared in chapter 2.

Defining stigma
The wide variety of ways stigma is defined generates
confusion and affects the target populations for stigma
reduction plans. The Oxford English Dictionary defines
stigma as a ‘mark of disgrace associated with aparticular circumstance, quality, or person’ 8. Renownedsociologist Erving Goffman discusses stigma in termsof what he calls ‘spoiled identity’, meaning that astigmatised person has become disqualified from fullsocial acceptance. The stigmatised person’s character
becomes suspect and he or she is in essence viewed
by others as less than human. Goffman defined stigma
as an attribute, behaviour, or reputation which is sociallydiscrediting in a particular way: it causes an individual
to be mentally classified by others in an undesirable,
rejected stereotype rather than in an accepted, normal
one 1.
The concept of stigma has also been refined to include
self-stigma, public stigma and courtesy stigma or stigma
by association. Self-stigma refers to the internalisationof ideas and the reactions of those personally targetedby a stigma. Public stigma refers to the reactions oflay people towards a stigmatised individual or group.
Finally, courtesy stigma or stigma by association
includes the emotions and beliefs of those surrounding
the stigmatised person, including family members andprofessionals 9 10. These types of stigma feed upon andinteract with each other.
Link and Phelan produced a road map that encompasses
the many definitions of stigma 11. They suggest stigma
only exists if: ‘labelling, stereotyping, separation, status

Box 1.1 Defining Stigma‘Mark of disgrace associated with a particular
circumstance, quality, or person’ Oxford dictionary 8‘Stigma is an attribute, behaviour, or reputation which
is socially discrediting in a particular way: it causes
an individual to be mentally classified by others in an
undesirable, rejected stereotype rather than in an accepted,
normal one’ Goffman 1‘Stigma can be seen as an overarching term that contains
three important elements: 1) problems of knowledge(ignorance), 2) problems of attitude (prejudice), 3) problems
of behaviour (discrimination).’ Thornicroft 14‘Stigma results from a process whereby certain individuals
and groups are unjustifiably rendered shameful, excluded
and discriminated against.’
WPA, WHO 15‘We apply the term stigma when elements of labeling,stereotyping, separation, status loss, and discrimination
co-occur in a power situation that allows the componentsof stigma to unfold.’ Link and Phelan 11

loss, and discrimination co-occur in a power situationthat allows the components of stigma to unfold.’ This isan excellent description of the experience of people withdementia in their encounters with their carers, healthcare
workers, the media, governments, and society.
Despite the benefits of diagnostic labels, such labels
often serve as cues to signal stereotypes. The negative
consequences of labelling appear to arise through two
processes. First, when an individual is diagnosed with aneuropsychiatric disorder such as Alzheimer’s disease,the person and those around him or her assumes that
cultural ideas associated (often wrongly) with people withmental illness (for example, incompetent, dangerous) arepersonally relevant, which fosters a negative self-image.
Second, these personally relevant cultural meanings
transform into expectations that others will reject them,and these expectations can trigger defensive behaviours
aimed at preventing that rejection 12 13.
Measuring the impact and degree of stigma has been
problematic. Thornicroft identifies how to measurestigma through measuring discrimination of people
with mental illness. In Shunned, he describes threeimportant elements of stigma: 1) problems of knowledge,
2) problems of attitude, and 3) problems of behaviour 14.
Measuring behaviours through identifying discriminatory
practices and experiences of rejection and avoidancehelps lead us to actions that can be taken to reduce
discrimination.
In the 2002 consensus statement, ‘Reducing Stigma
and Discrimination Against Older People with Mental
Disorders’, the WHO and World Psychiatric Association(WPA) define stigma as ‘resulting from a process
whereby certain individuals and groups are unjustifiably

9overcoming the stigma of dementia · Chapter 1: Background

rendered shameful, excluded and discriminatedagainst’ 15. By bringing public attention to the outcomesof shame, exclusion and discrimination, this definition
examines those that do the stigmatising rather than thetarget of stigma. Let us take an example of the stigma of
dementia put forward in the report: ‘In both developed
and developing societies, a dementia diagnosis may be
used to exclude individuals from some forms of care,e.g. emergency resuscitation, in-patient units, nursing
homes.’ 15 Link and Phelan also define what they call ‘thedistribution of life chances’, the degree to which domains
such as earnings, housing, health and life itself are
affected by stigma 11.
By looking at the variety of definitions of stigma,
and identifying how people with dementia are being
discriminated against and who is doing the discriminating(or has the power to control discrimination), we can begin
to make recommendations to create a better quality oflife for diagnosed individuals and their carers.

Box 1.2 Autobiographies of People with
Dementia
1 Dancing with Dementia: My Story of Living Positively
with Dementia – Christine Bryden
2 Losing My Mind: An Intimate Look at Life with
Alzheimer’s – Thomas DeBaggio
3 When it gets dark: An Enlightened Reflection on Life
with Alzheimer’s – Thomas DeBaggio
4 My Journey into Alzheimer’s – Robert Davis
5 Alzheimer’s Challenged and Conquered? – Louis Blank
6 Just Love Me: My Life Turned Upside-down by
Alzheimer’s – Jeanne Lee
7 Don’t Bury Me … It Ain’t Over Yet – Charles Schneider
8	Through the Wilderness of Alzheimers: Guide in Two
Voices – Robert and Anne Simpson
9 Living in the Labyrinth: A Personal Journey Through theMaze of Alzheimer’s – Diana Friel McGowin

What do people with dementia say
about stigma and life chances?

10 Who Will I Be When I Die? – Christine Boden (Bryden)

Particularly in a report on the stigma of dementia, wevalue the voice of the person diagnosed. The voices ofpeople with dementia are an integral part of the story
unfolding about stigma and these individuals should be
intimately involved in helping to reduce it. An argument
could be made that listening to the voices of people
living with dementia would help clarify what happens toa person with this condition. It is unfamiliarity and lack ofknowledge that causes fear. Fear exists on both sides;in the general perception of society, but also in people
with dementia who are fearful of the reactions of others.
Many people with dementia have a sense of shame andinadequacy and low self-esteem. They perceive theirstatus within society has been reduced as a result of thediagnosis 16.
There is a growing body of work that suggests thatstigma promotes social exclusion and reluctance toseek help 17 18. The stigma associated with dementia
leads to stereotyping of all people with dementia assomehow falling into one undifferentiated category. Moreunderstanding is needed of the symptoms of dementia
at different stages of the illness, that the symptoms
change over time, and that, especially in the early stages,
the person can do many of the things he or she used

11 Alzheimer’s From the Inside Out – Richard Taylor
A point to note is that all of these accounts are written bypeople diagnosed with younger onset, that is, diagnosed
under the age of 65. We did not find any autobiographies ofpeople diagnosed after the age of 65. Possible explanations
for this could include stigma, generational attitudes, lessinterest in writing about or advocating for themselves
or limited diagnostic sophistication early in their disease
process (that is, lack of a diagnosis until the middle stages,
if at all).

to do. In the middle and later stages, activities can beadapted for the person to participate and experienceenjoyment. This lack of understanding contributes todepersonalisation of the person with dementia and a lackof sympathy and understanding of the individual needs ofthose with the illness.
In the early stage of dementia, this stereotyping inevitably
leads to devaluing the potential contribution of theperson with dementia in conversation, which results inless interaction and an eroding of the relationship of theperson with dementia and family members and friends.

Reducing stigma

Moreunderstanding
and awarenessLess negative
connatations

Societal
empathy

Reducedfear

Reducedstigma10

Alzheimer’s Disease International: World Alzheimer ReporT 2012

In all stages, the stigma associated with dementia also
leads to a focus on the ways in which the person is
impaired, rather than on his or her remaining strengths
and ability to enjoy many activities and interactions withother people. This deprives the person with dementia of
the companionship of family and friends; the resulting
isolation and lack of stimulation causes disability beyond
that caused by the illness itself.
We believe that more understanding and awarenessof the personal perspective would reduce negative
connotations, lead to societal empathy, reduce fear andtherefore reduce stigma. As more people are diagnosed
earlier in the disease process, and are cognitively able toshare their own experiences, the literature will continue togrow in this area.
People with dementia are rarely included in academic
literature. However, the number of publishedautobiographies is growing. In an online search on
Amazon.com in June 2012, for example, 272 resultsappeared from searching ‘alzheimer’s autobiographies’.
Most of these included autobiographies of carers, butthere were eleven books written by people with dementia(See Box 1.2: Autobiographies of People with Dementia).
First-hand accounts, the first of which was publishedby Robert Davis in 1989 19, of the experiences of people
with dementia are moving and powerful:‘I want to be the voice for all those victims who lost theirability to communicate even before anyone knew what
was bringing on all these devastating changes. Many ofthese victims were written off by their families as crazy,‘fallen from grace,’ or depressed. I want to shout, ‘Be
gentle with your loved ones. Listen to them. Hear theirwhispered pain. Touch them. Include them in activity
meaningful to them. Help them stay in touch with God.
Let them draw from your strength.’
Alzheimer’s organisations are also active in collecting
information directly from people with dementia andcarers. In the Out of the Shadows report by the
Alzheimer’s Society (UK), the researchers were primarily
interested in finding out if there were any perceived
benefits from receiving an early diagnosis. Their finding,through interviews with people with dementia and carers,
was that early diagnosis is important and valuable. Many
people felt after an appropriate diagnosis they could
begin to understand, adjust and cope. The participantsalso provided feedback on how doctors can make thediagnostic process better for individuals in the future 20.
In 2008, the Alzheimer’s Association (US) publishedfindings from nationwide meetings where over 300
people with dementia were active participants. The
report concluded that people with dementia want society
to focus on their remaining abilities and want to maintainindependence as long as possible. They wish not to be
defined by decline and limitations and had suggestions
during the meetings for improving relationships, helping
others understand how to communicate with a personwith dementia and how to keep them engaged in thedaily life of their communities 21.

The subject of stigma dominated the meetings.
‘Many people reported a hesitation in admitting they
had Alzheimer’s disease for fear of negative public
perceptions about the disease and its potential forcausing social isolation. The potential stigma had aneffect in the other direction as well, inspiring somepeople to want everyone to know they were living with
Alzheimer’s disease. So, while some felt like hiding theircondition, others felt a sense of relief to be able to sharewhat they were experiencing.’
The following are selected quotes from the report 21:• ‘When people say “dementia” or “Alzheimer’s”,
everybody thinks you’re going to die.’• ‘The general public’s attitude toward Alzheimer’s insome instances is not very nice. In fact, excuse myexpression, but I’d have to say it sucks. But it does
because we let it.’• ‘There is a stigma that goes along with the disease.
Many people are worried about sharing the fact openlythat they have this disease because of the negative
stigma. I heard someone whisper the other day, “My
father has Alzheimer’s.” I just gave him a big hug andsaid, “You don’t have to whisper – shout it out loud.”’• ‘I’m not ashamed of having Alzheimer’s. All myneighbors are aware I have a problem and there’s noridicule, no stigma, and so I wish we would get it outof our minds that we’ve done something; that we needto go under the table and hide.’This positive attitude of people who have received anearly diagnosis is inspiring and growing. At ADI’s 2012
annual conference in London with over 1500 delegatesfrom 60 countries, an educational track was specificallydesigned, planned and delivered by people withdementia. Thirty people with dementia participated atthe 2012 conference from Australia, Canada, Finland,
Germany, Hungary, Japan, Tunisia, the UK and USA.
People with dementia serve on advisory committees tolocal, national and international Alzheimer’s organisations
including those in the UK, US, Netherlands, Australia,
Germany, Alzheimer Europe and ADI. Sometimes theyquote the motto from the disability movement ‘nothing
about us without us’.
As people continue to be diagnosed earlier in the disease
process, the number of years someone will be able tolive well, speak on their own behalf, make decisions
about the future and actively participate in society will
increase. As disease symptoms progress, the personwith dementia will need more support to stay active andengaged, but it is still possible. This report will further
demonstrate the opportunities for people with dementia.

What about the carers?
As the ones primarily responsible for future care needs,
family carers face a long road from helping to manage
the person’s independence in the early days to providing
hands-on care in the later stages of the illness. Carers

11

overcoming the stigma of dementia · Chapter 1: Backgroundare the champions of dementia care, maintaining theconnection and dignity for the person with dementia.
Caregiving is a physically, emotionally, financiallydemanding role that changes throughout the illness andmuch support is needed to help the carer during thistime.
The concept of stigma by association reflects the factthat stigma affects not only people with the stigmatisingmark, in this case dementia, but also often extends
to those around them, including family members. As
an individual’s cognitive capacities change, support
is needed and most often provided by a family carer.
Families face many problems including being afraid tobring memory loss issues to the attention of the person
who has them. Moreover, some of the symptoms ofthe middle stage of dementia, such as agitation andincontinence, inappropriate clothes or dishevelment
can be embarrassing to family members, who isolatethemselves and the relative with dementia to avoid
having to expose themselves to the reactions they
anticipate from those outside the family. The personwith dementia’s symptoms (for example, poor self-careand incontinence) are often regarded as evidence ofneglect 22. Also, to the extent that individuals attempt to
avoid social interactions with people with dementia, theirfamily carers may be inadvertently excluded as well.
Stigma by association is particularly important in
Alzheimer’s disease because the carer plays such avital role in the well-being of the person with the illness.
Stigma by association can lead to emotional reactions
such as shame, embarrassment and guilt and responses
such as decreased caregiving and concealment 23 24.
Furthermore, stigma can add significantly to theburden felt by family carers 25. The effects of stigma by
association can be particularly difficult for older spousecarers, who traditionally may have relied on their partners
for personal value or a sense of identity, or were more
comfortable in social situations being a part of a couple.
They may withdraw and become isolated, losing the
support that could lessen the challenges of caring forsomeone with dementia.
We believe that the stigma associated with dementia is
one of the barriers to carers’ utilisation of community
services and obtaining support from family and friends.
Moreover, many people find the acceptance of help or
care to be inherently stigmatising. The reaction of thecommunity (healthcare institutions and providers, and thegeneral population) to people with dementia undoubtedly
reinforces negative self-concepts (stigma by association)of family carers. If we can find ways to help carers tomodify their own attitudes about the illness and theirperceptions of the attitudes of others, we can facilitate
their ability to access social support. Reducing theimpact of stigma may enable carers to acknowledge theirrelative’s illness and increase the likelihood that they will
accept and receive the benefits of formal and informal
support, thereby reducing depression and burden.

Stigma and old age
The stigma of dementia is made more severe because
dementia is generally a disease of old age. Older age
is also stigmatised, and considered to be a time ofincreased vulnerability and dependence. ‘Despite theefforts launched against other forms of stigmatization,
ageism continues to represent the most sociallycondoned and institutionalized form of prejudice in theworld today’ 26. Stigma directly impacts older adults inthe areas of driving, maintaining employment, and theability to consent to medical procedures 27.
The stereotypic attitudes towards older adults suggestthat it is unusual if they are not cognitively impaired or
physically frail. Comments like ‘She is spry for her age’, or‘She is sharp for her age’, or ‘she still has all her marbles’,are made by well-meaning people in admiration of what
they consider to be unusually good functioning for anolder person. Thus old age itself confers a stigma basedon the assumption of the inevitability of the association
between age and decline.
Since the general expectation is that people will suffer
cognitive decline with age, neither they nor their relatives
are motivated to seek medical evaluation to determine
the cause of the decline. In addition, the shameassociated with being in the devalued group leads many
people to avoid finding out whether they are, in fact,members of that group. This stigma leads many people
with dementia to avoid discussing the illness with theirprimary care physicians until the symptoms are so severethat it is apparent to everyone. Physicians are reluctant todiscuss cognitive symptoms with their patients becauseof the stigma associated with it and the sense that
‘nothing can be done.’ This attitude is shared by many
health care professionals, who are reluctant to give theirpatients a stigmatising label. Stigma has been identified
as a major barrier to seeking a diagnostic evaluation 28.
Moreover, stigmatic beliefs of primary care physicians
and therapeutic nihilism lead them to avoid evaluating
cognitive function until the illness is so apparent that it
cannot be ignored 29.
An important consequence of the stigma associatedwith old age in general, and dementia in particular, is an
assumption of incapacity to make decisions. We believethat this assumption can lead to a premature loss ofautonomy, and dignity, which in turn fuels the loss of selfesteem associated with stigma and dementia.

Dementia compared to otherconditions
Stigma has long been considered within contexts ofother diseases and conditions. There is much to learn
from how stigma has been overcome or is continuing to
be confronted in cancer, HIV/AIDS and mental health.
Thousands of research articles over a 30 year period
have been published; first by identifying stigma, next byconducting awareness campaigns and lastly by changing

12

Alzheimer’s Disease International: World Alzheimer ReporT 2012

laws to reflect the individual rights of people coping withthese conditions.

of dementia and mental illness is compounded by themisuse of the term ‘demented’ to mean ‘crazy’.

In ‘Stigma and its Public Health Implications’, Link andPhelan reason that not all medical conditions are treatedequally with regards to social significance. They compare
the implications of hypertension and bone fractureswith those of incontinence, AIDS and schizophrenia 30.
Although they do not include dementia in their example,
based on what we know about dementia, the pervasive
public fear and the stigma experienced by individuals
with dementia and carers, dementia could certainly fall
into the latter category. The degree to which individual
lives are impacted by the stigma of dementia has yet
to be fully evaluated. Even in this report, the questionsof degree are not covered. In most studies only ‘one
circumstance’ (such as AIDS) is compared to only‘one outcome’ (such as isolation) 30. But the results ofstigma on most conditions, including dementia, are far
more complex. Multiple outcomes such as avoidance,isolation, reduced quality of life, low self-esteem,
depression, loss of income, and loss of independence,just to name a few, are felt by those who are stigmatised.

In some cultures, the shame of both mental illness anddementia is so overpowering that those affected are
hidden from the view of all but those who care for them
directly. Traditional spiritual beliefs about the cause andnature of dementia, and associated concerns about theeffect of a person’s dementia on the marriage prospectsof younger family members, were found to be notuncommon in South Asian communities; and there waspressure in two groups studied to ‘keep things in thefamily’ and not expose to public scrutiny what was seen
as private 32.

Let us take diagnosis as an example. The 1970s were
the first time cancer patients were told of their diagnosis.
Before that, it was seen as in the patient’s best interest
not to tell them. The assumption was that a disease
with no known cause or cure was essentially a death
sentence and the person would live a better quality of life
if they did not know they had cancer 31. It has only been
about 5-10 years since people with dementia began to be
told about their own diagnosis. Possible causes include
lack of diagnosis early enough for the person withdementia to understand its impact, therapeutic nihilism
by physicians as previously mentioned and the pervasive
myth that dementia is a normal part of ageing. To be fair,there may be reasons not to tell a person with dementia
about their diagnosis, including a person’s own denialof their symptoms, or lack of awareness about their
symptoms. It is important for people to have the right tounderstand the cause, nature and prognosis of their own
disease to help enable them to prepare for the future.
Studies indicate that most people with dementia wish to
be told of their diagnosis 2. In addition, a generation ofpeople who have cared for parents or grandparents withdementia are recognising their own symptoms earlier andtaking the lead in finding out the cause.

Stress-related stigma
There is a parallel between dementia and Link andPhelan’s model of stress-related stigma of people withother disease conditions. ‘The stress associated withstigma can be particularly difficult for those with diseaseassociated stigma. Not only are they at risk to develop
other stress-related illnesses, but the clinical courseof the stigmatised illness itself may be worsened andother outcomes affected, such as the ability to workor lead a normal social life.’ 30 This is particularly true
for people with dementia in the early stages who retain
many abilities – including the ability to work (although
not necessarily in their pre-illness capacity) and lead anormal social life. Adjustments may need to be made, but
overall these things are possible with reduced stigma.
Link and Phelan specifically note the stress of people
with mental illness that may cause delayed diagnosis
due to the societal view of institutionalisation 30.
Similar outcomes exist for people with dementia.
Institutionalisation may be an immediate concern forpeople with mental illness, but for people with dementia
it may be the fear of future institutionalisation. Negative
stereotypes of locked dementia units in hospitals andcare homes are pervasive. Stories of people promising tonever place their family member in ‘one of those places’
are common and unfortunately, not always realistic.
Some people can live the remainder of their lives athome, but the needs of the person with dementia canaffect the quality of life for the carer and the health ofboth individuals should be considered when making thisdecision.

Dementia and mental illness

Reducing stigma

There has been considerably more research about
stigma and mental illness than about stigma anddementia, perhaps partly due to the widely held belief
that cognitive decline is a normal consequence ofageing. The word ‘dementia’ means ‘mental illness’ tomany people, and the stigma of mental illness is well
documented. Because the symptoms in the middle
stage of dementia can resemble the symptoms ofsevere mental illness, the stigma of mental illness isalso transferred to people with dementia. The confusion

Our aim in this report is to promote an enabling society
for people with dementia in order to reduce stigma. We
need to inform everyone that throughout the illness,
people with dementia can engage, participate andmaintain dignity whether living at home, in the community
or in a care home. Best practices that are helping reduce
stigma at all stages of the disease and through multiple
levels of society must be shared.
Examples of programmes and activities to reduce stigma
are given in chapter 3.

13

overcoming the stigma of dementia · Chapter 1: Background

References
Stigma has been targeted so far through three methods:
information and education, awareness-raising throughmedia, and policy efforts.

1

Goffman, E. Stigma: Notes on the Management of Spoiled Identity.
Englewood Cliffs, New Jersey : Prentice-Hall, 1963. ISBN 0-67162244-7.

2

Prince, M, Bryce, R and Ferri, C. World Alzheimer Report 2011.
London : Alzheimer’s Disease International, 2011.

Reducing stigma through information

3

Alzheimer’s Disease International. National Alzheimer and Dementia
Plans Planned Policies and Activities. [Online] April 2012. http://
www.alz.co.uk/sites/default/files/national-alzheimer-and-dementiaplans.pdf.

4Harris Interactive for MetLife Foundation. What America Thinks:
MetLife Foundation Alzheimer’s Survey. MetLife Foundation website.
[Online] February 2011. [Cited: 14 August 2012.] http://www.metlife.
com/assets/cao/contributions/foundation/alzheimers-2011.pdf.

5

The Scottish Government. Scotland’s National Dementia Strategy.
Edinburgh : The Scottish Government, 2010. ISBN 978-0-75599534-9.

6Alzheimer Europe. National Dementia Plans: Finland. [Online] 2012.
[Cited: 14 August 2012.] http://www.alzheimer-europe.org/EN/Policyin-Practice2/National-Dementia-Plans/Finland.

7

World Health Organization. Dementia: a public health priority.
Geneva : World Health Organization, 2012. ISBN 978-92-4-156445-8.

8

stigma. Concise Oxford English Dictionary (12th ed.). Oxford :Oxford University Press, 2011. p. 1418.

9

Larson, J.E. and Corrigan, P.W. The stigma of families with mental
illness. Academic Psychiatry. 2008, Vol. 32, 87-91.

While there have been qualitative and survey studies
of stigma associated with dementia, there have beenvery few controlled trials of interventions to reduce thatstigma. One randomised controlled trial conductedin the Asian community found that brief exposure to
information about the symptoms of dementia, in theform of vignettes about people with the illness, led to asignificant reduction in stigma 33. In this study, conductedin Hong Kong, older adults and those who were lesseducated had more stigmatic beliefs than younger, better
educated adults. Those who thought dementia wastreatable had fewer stigmatic beliefs. The authors pointed
out, as did Werner 24, that dementia is considered to be afamily disgrace (stigma by association).

Media and stigma
The stigma of dementia is fuelled by the media depictionof people with dementia in the late stages, when they
are often unable to communicate verbally or care for
their own activities of daily living, such as dressing,
toileting and feeding themselves. Because the media
focuses largely on the late stages of dementia, many
people assume that as soon as the diagnosis is made,the person no longer has the ability to make decisions orcare for himself 34.

Public policy and future directions
Public policy and legal efforts have been more successful
for people with physical disabilities than for those withmental illnesses and dementia. In a recent manuscript,
Benbow and Jolley cite the ethical principles describedin the report of the Nuffield Council on Bioethics 35 andargue that social justice requires normalising dementia
wherever possible, so that people living with a dementia
become a visible part of society and are, where they can,supported to carry on making an active contribution 36.

10 Rüsch, N., Angermeyer, M. C. and Corrigan, P. W. Mental illness
stigma: concepts, consequences, and initiatives to reduce stigma.
European Psychiatry. 2005, 20,529–539.
11 Link, BG and Phelan, JC. Conceptualizing stigma. Annual Review ofSociology. 2001, 27:363–385.
12 Link, BG. Understanding labeling effects in the area of mental
disorders: An assessment of the effects of expectations of rejection.
American Sociological Review. 1987, 52:96–112.
13 Link, B., Cullen, F., Struening, E., Shrout, P., & Dohrenwend, B. A
modified labeling theory approach to mental disorders: An empiricalassessment. American Sociological Review. 1989, 54:400-423.
14 Thornicroft, Graham. Shunned: Discrimination against People with
Mental Illness. Oxford : Oxford University Press, 2006. ISBN 978-019-857098-1.
15 World Psychiatric Association, World Health Organization. Reducing
stigma and discrimination against older people with mental
disorders. Geneva : World Health Organization, 2002. WHO/MSD/
MBD/02.3.
16 Katsuno, T. Dementia from the inside: how people with early-stage
dementia evaluate their quality of life. Ageing and Society. 2005, 25:
197–214.
17 Link, BG and Phelan, JC. Labeling and stigma. [book auth.] CS
Aneshensel and Phelan JC. Handbook of Sociology of Mental
Health. Dordrecht, Netherlands : Kluwer, 1999.
18 Corrigan, P. How stigma interferes with mental health care. American
Psychologist. 2004, 59, 614–625.
19 Davis, Robert. My Journey into Alzheimers Disease. Wheaton, Illinois: Tyndale House Publishers, 1989, p. 18.
20 Alzheimer’s Society. Dementia: Out of the Shadows. London :Alzheimer’s Society, 2008. http://www.alzheimers.org.uk/site/
scripts/download.php?fileID=454.
21 Alzheimer’s Association. Voices of Alzheimer’s Disease: A Summary
Report on the Nationwide Town Hall Meetings for People with Early
Stage Dementia. Chicago : Alzheimer’s Association, 2008. http://
www.alz.org/national/documents/report_townhall.pdf.
22 Graham, N., Lindesay, J., Katona, C., Bertolote, J., Camus, V., &Copeland, J. Reducing stigma and discrimination against older
people with mental disorders: A technical consensus statement.
International Journal of Geriatric Psychiatry. 2003, 18:670–678.
23 Werner, P, Goldstein, D and Heinik, J. Development and validity of
the Family Stigma in Alzheimer’s Disease Scale (FS-ADS). Alzheimer
Disease and Associated Disorders. 2011, 25(1):42-8.
24 Werner, P, Goldstein, D and Buchbinder, E. Subjective experienceof family stigma as reported by children of Alzheimer’s disease
patients. Qualitative Health Research. 2010, 20, 159–169.
25 Werner, P., Mittelman, M., Goldstein, D., & Heinik, J. Family stigma
and caregiver burden in Alzheimer’s disease. Gerontologist. 2012,
Feb;52(1):89-97.
26 Nelson, Todd D (ed.). Ageism: Stereotyping and Prejudice Against
Older Persons. Cambridge, MA : MIT Press, 2004. ISBN 978-0-26264057-2.

14

Alzheimer’s Disease International: World Alzheimer ReporT 201227 Zebrowitz, LA and Montepare, JM. “Too young, too old”:
Stigmatizing adolescents and elders. In T. Heatherton, R. Kleck, M.
Hebl, & J. Hull (eds.). The social psychology of stigma. New York :Guilford Press, 2000.
28 Koch, T, Iliffe, S and EVIDEM-ED project. Rapid appraisal of barriers
to the diagnosis and management of patients with dementia inprimary care: a systematic review. BMC Family Practice. 2010, 11:52.
29 Werner, P and Giveon, SM. Discriminatory behavior of family
physicians toward a person with Alzheimer’s disease. International
Psychogeriatrics. 2008, 20, 824–839.
30 Link, BG and Phelan, JC. Stigma and its Public Health Implications.
Lancet. 2006, 367: 528–29.
31 Holland, JC. History of psycho-oncology: Overcoming attitudinaland conceptual barriers. Psychosomatic Medicine. 2002, 64:206221.
32 Mackenzie, J. Stigma and dementia: East European and South
Asian family carers negotiating stigma in the UK. Dementia. 2006,
5:233–47.
33 Cheng, ST, et al. The effects of exposure to scenarios about
dementia on stigma and attitudes toward dementia care in a Chinese
community. Int Psychogeriatr. 2011, 23:9.1433-1441.
34 Carbonnelle, S, Casini, A and Klein, O. Les représentations sociales
de la démence: De l’alarmisme vers une image plus nuancée. Une
perspective socioanthropologique et psychosociale. Bruxelles :Fondation Roi Baudouin, 2009.
35 Nuffield Council on Bioethics. Dementia and society. Dementia:
Ethical Issues. Cambridge : Cambridge Publishers Ltd, 2009.
36 Benbow, SM and Jolley, DJ. Dementia: stigma and its effects.
Neurodegenerative Disease Management. 2012, 2(2): 165-172.

overcoming the stigma of dementia · Chapter 1: Background

The realities of Alzheimer’s
and overcoming stigma
Michael Ellenbogen
Alzheimer’s disease and other forms of dementia affect more than 35 million
people worldwide today. An astonishing fact is that today someone in the world
develops dementia every 4 seconds. By the middle of the century more than 115
million people will be affected by the disease if we do nothing.
My name is Michael Ellenbogen, and I am living with Alzheimer’s andtrying to make a difference. I was previously a high-level manager in thetelecommunication industry. In 2008, I was diagnosed with younger-onset
Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my firstsymptoms at age 39. Losing my job and not being able to work had a huge
impact on my life as I was a workaholic. I am now an Alzheimer’s advocate anda spokesperson for the Alzheimer’s Association (US) as a member of its national
2012 Early-Stage Advisory Group.
I am so frustrated, because no one realizes how seriously disabled I am. If I had
a loss of limb or some other visual ailment, it would make people realize. I don’t
want them to feel sorry for me or pity me, I just want to be understood. So many
people say you do not seem to have Alzheimer’s, and that frustrates me. Let metell you what it’s like to live with this debilitating and progressive disease.
Imagine for one minute that your friend, relative or family member has
Alzheimer’s and has to deal with the following issues. When I go shopping andlook at items, most of them never really register in my mind, even though I
see them clearly. I have trouble making decisions, because I question whether
I am making the right one. I can no longer enjoy my favorite hobbies, because
it requires processing skills that I no longer have. I went from being a gadget
person, to being threatened by technology that I no longer can use. This is what
I deal with and so much more.
I go to a happy affair only to be tortured by the noise and surrounding
conversations, because of the loudness that cannot be filtered out. If people try
to speak with me in a public setting where there are many other conversations,
I just don’t understand what they are saying. This is because all of the people
speaking come in at the same volume level. All the words run together, and it
sounds like a foreign language.
I went from being extremely proactive to becoming much less active andmotivated. I leave things around the house and don’t put them away, because I
don’t know where they go or feel I may not know where to retrieve them again.
One moment I am nice and another I may fly off the handle. I can no longer
write or speak like I used to. My friends slowly become distant and usually speak
to my wife. I do realize this.
I worry every day about the challenges ahead. Or even worse, I am losing mymind and see it happening, but I cannot do anything to change the course.
People always say ‘if I can do anything just let me know.’ If I take them up
on that offer, they back out of their commitments. I have become extremely
surprised by the lack of public commitment to my pleas for support of
Alzheimer’s disease. While some may be sympathetic in the moment, there
appears to be little follow-through. This is very upsetting, because I feel as
though it affects me personally as well as the millions of others living with thedisease. I was always there for others when they needed it and now I feel alone.
Michael Ellenbogen is living with
Alzheimer’s and trying to make adifference.

While many people just coast through the day, I have to use 110% of myprocessing skills to do most things, which increases the stress and frustration.
The worst part about this disease is knowing that I am doing all these things
wrong and have no way to control or stop it, and it’s only getting worse as the

15

16

Alzheimer’s Disease International: World Alzheimer ReporT 2012

days go by. I used to save lots of money by doing so many things around thehouse. Now I have lost the drive, determination and skills needed to do those
things. Many times I hurt myself trying or make things worse.
I cannot begin to explain how it tears me up inside to see my spouse struggling
to do the things that I once was capable of doing and know I cannot do athing to help. I realize that one day I may no longer be able to drive and thisdevastates me. I see my wife becoming stressed, depressed and overwhelmed,
but caregivers know it will only continue to get worse. Sadly, they keep tellingthemselves that they can do it all even when we know they will need help.
I, the patient, see it definitely. My wife is on the road to hell, and she does noteven realize it yet, because she is so busy trying to block it all out. The worst partabout all this is, I have not even reached the worst stage. That scares the hell outof me.
I have been so surprised by the stigma associated with this disease. It comes atyou from all angles. People think they know what Alzheimer’s is, but they don’t.
I see this not only from people living with dementia but many media healthcorrespondents, physicians and organizations that are geared to helping thosedeal with the disease. I have learned that I do not want to share my diagnosis
with people I meet until they get to know me. If I was to tell them upfront, I
would be treated so differently, which I have learned. I kind of see this disease
like HIV used to be. The people who have it are so afraid to let others know,
including family. I do not get it. We did nothing wrong to get this disease,
and we need to speak up to let our voice be heard. We did nothing and no one
should be ashamed of having it. I feel so much better when I share it with others
than when I try to hide it.
Because of my frustration with the existing environment for people withdementia, I realized change was needed. I decided to use my few skills left to
advocate. I have spent some of my last few years being on television, radio,
newspapers, many blogs and working with many politicians. I also had an
opportunity to speak at all of the public sessions to develop the first U.S.
National Alzheimer’s Plan. I did all this on my own. But that was not enough,because I ran into so many people who just did not want to get involved. I am
now a volunteer for the national Alzheimer’s Association Early-Stage Advisory
Group. If there is something I want you to walk away with it’s that you can makea difference, but it will take persistence. Write a letter to your public official orreach out to local support organizations to create needed programs and services.
Your voice and your story are powerful tools. Please get involved.
The simple truth is, if you have not been touched by this devastating anddebilitating disease yet, consider yourself extremely lucky. Sadly, it’s just a
matter of time before it touches you. It is my hope that my actions today may
prevent future generations from suffering with this disease. So give yourself
piece of mind and do something today. I hope that what I am doing will allow
me to leave this world knowing that I did everything possible to make that next
generation have a fighting chance. There are no excuses for not wanting to help.
The human cost factor is too high, and we are all accountable to do something.
There are many organizations out there like ADI and the Alzheimer’s
Association that can help you. The Alzheimer’s Association got me started inmany ways with my new journey. It not only helped me, but it also had helped
my wife as my caregiver. The Association has a website with many resources atwww.alz.org. I encourage you to reach out today if you have not already. I would
also encourage you to educate yourself.
Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer’s Month.
I wear a purple Alzheimer’s bracelet every day. And for those living with
Alzheimer’s, stop focusing on what you cannot do and join me in the battle toadvocate. We still have so much to give, and we need to use our skills at our own
speed. There is nothing to be ashamed of. I, and your loved ones, are counting
on all of you �overcoming the stigma of dementia · Chapter 1: BackgroundOvercoming stigma is the firststep to beating Alzheimer’s disease
and dementia
Peter Piot
Throughout history, we have defined ourselves in contrast to others who must
be despised or feared, kept away, isolated or incarcerated. Lepers, ‘witches’,
heretics, and, of course, the mentally ill, have all been stigmatised by therespectable folk who define and police social norms. Persecuted and pushed tothe margins of society, these outcasts can be either ignored or dramatised as
morality tales.
During a long career in infectious diseases, I have worked closely withstigmatised groups including sex workers, homosexuals, immigrants, drug users
and HIV positive people. It has made me reflect long and hard on how we treatsuch vulnerable groups, and how stigmas must be overcome in order to treat
disease and create healthier as well as more just societies.
Social scientists such as Freud, Foucault and Mary Douglas have written
extensively on stigma, taboo, ritual purity and uncleanness. The word itself
is of ancient origin, and signifies visible marks of shame, although it also,paradoxically, refers to the divine wounds of the crucifixion. Disease has long
been associated with stigma, such as the visible signs of infection.
Of course, from a health perspective, some of this makes sense. We have evolved
to react with disgust to disease, decomposition, filth and excrement, and at asocial level to be wary of strange people, behaviour and ideas. But we have also
evolved the capacity for rational reflection, and even as we take steps to protect
ourselves, our families and communities, we must resist the temptation tocreate scapegoats or blame victims.
In my experience, stigmatisation leads to a socially sanctioned ignorance andunwillingness to engage with real issues. This is not only unjust, but often getsin the way of efforts to understand and tackle epidemics and other health issues.
In the early 1980s, AIDS emerged among gay men in the USA, but in myclinic in Antwerp for sexually transmitted diseases, I was seeing the same
syndrome among heterosexuals of African origin. It was only when our paper
was eventually published by The Lancet that the medical community acceptedthat it was not just a ‘gay plague’. Decades later at UNAIDS (the Joint United
Nations Programme on HIV/AIDS), we struggled with official denial in South
Africa, Russia and China, but also in the West, where governments and drugs
companies refused to believe a global treatment programme could be effective.
Sometimes, perhaps perversely, I think we actually need more stigma, in thesense of social and moral pressure to change harmful attitudes and behaviour –stigma of denial and inaction.

Professor Baron Peter Piot is
Director of the London Schoolof Hygiene & Tropical Medicine
and Professor of Global Health.
He was formerly Under Secretary
General of the United Nations andfounding Executive Director of
UNAIDS.

From Antwerp to Congo, and Kenya to Calcutta, I have repeatedly seen at
first hand the tragic consequences of poverty, exploitation, prostitution anddisease. These situations are so desperate that it is tempting to give in to despair.
However I have been privileged to work with heroic health workers, carers andsupport groups, and throughout my career have tried to use medical science
to alleviate suffering and help communities and improve their lives. In thesecircumstances, the moral imperative is not to judge, or to make excuses, but toact, to organise, to advocate and persuade those in power to do the right thing.
Today we face a rising tide of non-communicable diseases, including obesity,
diabetes, heart disease and mental illness. Alzheimer’s disease and other forms
of dementia (and I know there are important distinctions here) are particularly

17

18

Alzheimer’s Disease International: World Alzheimer ReporT 2012problematic, not only because they are increasing rapidly, but because thestigma is to some extent invisible.
People diagnosed with mental health problems suffer from stigma in verypractical ways – they are discriminated against in employment, housing andwithin the community. Fear of this stigma and of being shunned by family,
friends, neighbours and in the workplace prevents sufferers from seeking help.
There are around 36 million people with some form of dementia in the world
and this is expected to at least double over the next 20 years, making it oneof the largest neglected global health challenges of our generation. The global
economic cost of dementia is estimated at over US$600 billion, and Alzheimer’sSociety research suggests that in the UK, one in three people over 65 will diewith dementia. This is not something any of us can afford to ignore.
What we must learn from the AIDS movement is that it takes a lot of work,
coalition-building, campaigning and lobbying to change attitudes. Much timeand effort were spent trying to overcome bureaucracy and official denial – andstigma attached to AIDS victims. The red ribbon effectively turned this stigma
into a powerful symbol for a worldwide movement. The activists were vital inputting moral and political pressure on governments to act both locally andglobally.
This is never easy. AIDS forced us to confront the tremendous complexities ofhealth and disease, and of global politics. Although virologists rapidly elucidated
the nature and workings of HIV, and developed anti-retrovirals, it requireda massive international effort to slow the spread of HIV and make treatment
available to those who most need it – and this struggle is still not over.
By investing now, we will save later. Having a global action plan to defeat
dementia is the first step to making a difference to millions of people. The action
plan proposed by ADI will call on leaders of the world’s nations to commit to:1 Invest in research and coordinate research efforts with other countries
2 Educate the public and health practitioners to ensure they recognise the signsof dementia. Provide information, support and access to treatment to ensure
people can live well with dementia
3 Record diagnosis rates in their own countries to create an accurate picture ofdementia
4 Conduct coordinated studies on the economic and social impact of dementia
5 Develop and share health strategies to help people reduce their risk ofdeveloping dementia.
Many countries are developing good programmes, but there is a long way to go
to change attitudes.
Despite the obstacles, I think we can be cautiously optimistic. My experiencehas taught me that it takes a lot of energy and dedication to build coalitions that
actually get things done on the scale that is needed. It is therefore all the more
important that we work together to communicate our vision and the value of
our work to mobilise the resources required to sustain our achievements so far
and meet the serious challenges ahead.
A century ago, a politician from America, New York Senator Chauncey Depew,
had something to say that might be relevant here:‘Follow the path of the unsafe, independent thinker. Expose your ideas to thedangers of controversy. Speak your mind and fear less the label of ‘crackpot’
than the stigma of conformity. And on issues that seem important to you, standup and be counted at any cost.’
We are all mortal and we are all prone to diseases which affect our brains aswell as other organs. There is nothing to be ashamed of: let us take our stigmas
and beat the dogmas of despair novercoming the stigma of dementia · Chapter 1: Background

Stigma reduction
in government plans
Michael Splaine
Several national Alzheimer or dementia plans touch on stigma. In England,
it was noted in the national plan that it took roughly three years before apatient reported dementia-like symptoms to their physician. Similar patternsof behaviour and concerns were noted in every one of the national plans that
we have reviewed. Across cultures, each national plan recognised stigma asa significant barrier to accessing diagnosis and treatment for dementia and afactor that lead to social isolation. While the overall goal of stigma reduction
was presented across national plans, there were variations in recommendations
for methods to translate the goal into action.
To attain a baseline understanding of the general public’s knowledge, bothFrance and Australia’s national plans to reduce stigma began a public survey.
For Australia’s Community Awareness Program, a ‘dementia literacy’ survey
would be administered to attain a baseline understanding of the publicawareness of dementia. Measure 37 of France’s national dementia plan,‘studying disease knowledge and attitudes’, was issued through state funding,approximately 100,000 euros, by the Ministry of Health. The objective was to‘raise the public’s awareness of Alzheimer’s disease, the patients’ cause and thatof their families, in collaboration with the patients’ associations’. A qualitative
study was to be conducted, through use of a survey, to evaluate non-specialists’level of knowledge and attitudes about Alzheimer’s disease. Further surveys
would be issued throughout the implementation of France’s national plan tomonitor the development of the general public’s attitudes and knowledge. The
data would then be released with the goal of both increasing awareness andacceptance of dementia in the general population as well as inspiring regional
initiatives.
The most significant commitment was made in Australia’s Key Priority Area3, ‘Information and Education’, which structured a Community Awareness
Program that is based upon key messages promoted by the AustralianGovernment and States and Territories. Stigma reduction was addressed in
France’s national plan in Measure 42, ‘making the fight against Alzheimer’s
disease a priority for the European Union during the French presidency.’
Although no specific budget was given towards Measure 42, it provided astrong opportunity to establish Alzheimer’s disease as a priority on the national
agenda while carrying the unique media pull of France’s term as president of theEuropean Union.

Michael Splaine runs a small
advocacy and government
affairs consulting firm based in
Washington, DC. Prior to starting
his firm, Mike worked in the Public
Policy Division of the Alzheimer’s
Association (US). In his role as
ADI’s Policy Adviser, Mike is
responsible for a project tracking
national Alzheimer plans, and isactive with ADI’s World HealthOrganization strategy group.

Conveying key messages and increasing community awareness, via programs
and campaigns, was the most common approach to stigma reduction acrossthe national initiatives of France, England, Australia, Norway and Wales.
Ignorance, stemming from a lack of knowledge about dementia, often translated
into feelings of shame and guilt for individuals and carers of dementia patients.
Informational campaigns and programs would help target those uninformed
about dementia and ultimately, ideally, reduce the social withdrawal associatedwith diagnosis.
In their plan, the Welsh Assembly Government aimed to raise awarenessthrough inclusion of dementia in health campaigns, communication ofdementia issues through professional, paraprofessional and lay led networks andbulletins to health colleagues as well by updating voluntary organisations thegovernment funded.
Norway’s national dementia plan, with its Initiative 4.5.2, constructed a 4-year
action plan for informational and educational campaigns aimed to increase
openness in dialogue and social settings about the reality and challenges of

19

20

Alzheimer’s Disease International: World Alzheimer ReporT 2012

dementia. Informational measures would be developed from the plan to makeinformation provisions to the local government more accessible.
England’s National Dementia Strategy, under Objective 1, ‘improving public andprofessional awareness and understanding of dementia’, called for development
and delivery of a general public informational campaign. The key messages ofEngland’s national campaign were to promote preventative decisions about
healthy lifestyle choices, stress the benefits of timely diagnosis, reduce social
exclusion and discrimination, reduce anxiety while promoting understanding
and to stress that dementia is a disease not a normative process of aging.
Further, ‘what’s good for your heart is good for your head’, would be utilised as astrong prevention slogan throughout the campaign.
Scotland’s national initiative made distinctive recommendations to conquer
negative stigma associated with dementia through research and publications.
In 2008, the Scottish Government established the Dementia Clinical Research
network, with over 1 million euros in funding. One objective of the research
network is educating the general public to help negate the stigma associatedwith dementia, an example of which is establishment of a research volunteer
registry that now has significant numbers of unaffected people enrolled. In
addition to research initiatives, the Scottish Parliament’s Cross-Party Groupon Alzheimer’s disease published a Charter of Rights for People with Dementia
and their Carers in Scotland. The document was based on the recognition
that a great stigma existed about individuals with dementia and that people
with dementia and carers often experience discrimination and isolation. The
document established that individuals with dementia and their care providers
have the right to participate in the decision making process, are accountablefor human rights and freedoms, can be free from discrimination, and should
consider themselves empowered to access all levels of care and have the fullrange of legal human rights regardless of diagnosis. The central messages tothe publication were similar to that of the other national campaigns; however
Scotland’s production of a ‘framework’ document could be a strong template fordisseminating information in other national plans.
The US National Plan to Address Alzheimer’s Disease includes an investmentof $8.2 million over two years, beginning this year, to support public awarenessand to improve public knowledge and understanding of Alzheimer’s disease(Goal 4).
More information and links to all of the plans mentioned can be found atwww.alz.co.uk/alzplans n21overcoming the stigma of dementia · Chapter 2: Survey results

Chapter 2

Survey results
ADI conducted an anonymous online
survey in June 2012 of people withdementia and family or informal carers
about their experiences of stigma. Over2,500 individuals from 54 countries
responded, including 2068 who responded
in English and 519 who responded toversions in Spanish (282), Greek (94) andChinese (143). In this report, we provide a
description of the results through a global
lens, focusing on the common themes,
rather than describing the data for eachcountry separately.
The primary goal of the survey was torecord individual experiences of stigma by
people with dementia and family carers
from a global sample.

Survey methodology
The survey was conducted over the Internet using
SurveyMonkey. With this method, we were able to reacha large number of people with dementia and carers who
are active on discussion boards, in chat rooms andonline in general. ADI’s ‘I CAN! I WILL!’ participants, theAlzheimer’s Association’s (US) online discussion boards
for people with dementia, the Dementia Advocacy
and Support Network International (DASNI), and theScottish Dementia Working Group have regular active
participation with each other online. Through the survey,
we learned that there is a Facebook network of carers
from at least five Spanish-speaking countries. Although
online recruitment limits participation to people withcomputers, the more highly educated, and active
participants of groups and programmes designed forpeople with dementia and carers, the information gained
provides valuable insights into the issues related tostigma and its impact on people with dementia and theirfamily members.
The survey was accessible to all visitors to the ADI
website and the SurveyMonkey link was emailed
to contacts within the Alzheimer’s field, social careorganisations, support groups, and faith-basedorganisations around the world. In turn, these contacts
further distributed the link to their constituents and social
networks within their countries.
In addition to the demographic questions about thesurvey respondents, the key questions were selected
and adapted from two previous surveys. In one,Thornicroft and colleagues developed and validated atool for the International Study of Discrimination andStigma Outcomes (INDIGO) called the Discriminationand Stigma Scale (DISC) to measure the stigma anddiscrimination experienced by people with mental
illness. The questions in this tool measure experienced
stigma in three ways: 1) positive discrimination (that is,
being given preferential treatment because they werementally ill), 2) negative discrimination and 3) anticipateddiscrimination. In the INDIGO study, the authors usedthe DISC in 27 countries with 732 participants withschizophrenia in face-to-face interviews 1. Four of the
DISC questions were used almost verbatim and a seriesof questions related to unfair treatment of people withmental illness were combined into a single generalquestion about being ‘avoided or treated differently’. A
follow-up question included multiple choice answers withcategories of possible discriminators. In the DISC survey,
each category of discrimination was a separate question.
Positive, negative and anticipated discrimination werealso separate. In this survey, we asked more generally
whether the respondent experienced a type of stigma
or discrimination and asked for additional comments or
examples.
The tool was also adapted to meet the needs of
respondents with cognitive difficulties and to enable thesurvey to be conducted through SurveyMonkey. One of
the modifications to assist people with dementia in easily

22

Alzheimer’s Disease International: World Alzheimer ReporT 2012answering questions was to change the DISC 5-pointanswer scale to yes, no, or don’t know answers. The
English survey was tested with several individuals withdementia and some modifications were made before
it was publicised. Room was left for respondents toprovide a narrative with their answers. All questions inthe survey were optional and participants were instructedthat they could stop at any time.
In the second survey, conducted by the WHO in
partnership with ADI, ADI member associations andother professionals were asked their opinion in an online
survey. We included 10 of these questions and asked
people with dementia and carers about their opinion ofdementia knowledge of political leaders, the media andthe general public in their respective countries. They
were also asked how people with dementia could bebetter included in everyday life 2. Similar modifications
were made to these questions. By combining someof these questions with the questions from DISC, we
obtained a broad picture of stigma and discrimination as
viewed and experienced by people with dementia andcarers themselves.

Cultural adaptations
Through support from ADI members, the survey was
also translated into Spanish, Chinese and Greek. Aftercompletion, the qualitative responses were translatedback into English before including them in this report*.
Portions of the Chinese and Greek analysis were unable
to be completed prior to publishing this report and will be
published at a later date.

Survey respondents

Number of respondents

People with dementia
Carers

2000

1500

1000

500

0

EnglishSpanishChineseGreek

In all, 2068 people responded to the English survey.
After filtering for ‘persons with dementia’, ‘carers’
and the ‘other’ category, 127 (6%) were respondents
with dementia from 14 countries and 1716 (83%) werefamily or informal carers from 47 countries; 225 (11%)
individuals were disqualified. In the Spanish survey, 7(3%) were people with dementia and 211 (77%) werefamily or informal carers from 16 countries; 56 (20%)
were disqualified. In the Chinese survey, 10 people withdementia and 106 family or informal carers responded;
21 individuals were disqualified. In the Greek survey, 13
people with dementia and 74 family or informal carers
responded; 6 were disqualified†.
In total, people from 54 countries participated; however,results in this report will be aggregated, combining somecountries regionally or categorising by language dueto the low number of responses from most countries.
It should be noted that as respondents selected
themselves after hearing about the survey from a variety
of sources, these are not representative samples of eachcountry’s population of people with dementia or family
or informal carers. This report does not intend to sayanything about cultural differences between countries.
This report aims to raise issues as described by people* Limitations of the translated surveys included the limited amountof time available in which to conduct the translations and lack ofresources available for a formal translation process. In all cases,
the translations were conducted by staff or volunteers of ADI or
its member associations. Unlike the English survey, the translated
surveys were not tested. We received reports that care providers
assisted their constituents by either verbally translating the English
survey into local languages while interviewing people with dementia
and carers and some respondents were assisted with the data
entry onto the survey platform if they did not have access to orcapabilities to use a computer.

† People were disqualified if they indicated they were not a personwith dementia or a family or informal carer. The most common
reason for people being disqualified was that they indicated thatthey were health care professionals working in the dementia fieldsuch as doctors, nurses, social workers or other (paid) carers.
Others were disqualified because they indicated their family
member with dementia was deceased and some did not identify
themselves as a carer, for example, because they were not a close
relative.

23

overcoming the stigma of dementia · Chapter 2: Survey results

Respondents with dementia

Respondents by language andgeographic locale
Percent of total people with dementia
and carers
Urban

Suburban

Rural

English

37%

46%

17%

Spanish

78%

13%

8%

Chinese

88%

6%

6%

Greek

82%

14%

3%

English survey

Location of people with dementia
United States
United Kingdom
CanadaFinland
Australia

Level of education
Percent of total people with dementia
and carers

Other
No answer

CompletedsecondaryCompletedcollegeCompletedgraduate
degreeEnglish

14%

25%

20%

Spanish

19%

31%

8%

Chinese

19%

42%

10%

Greek

30%

19%

29%

Connection to services and programmes
Percent of total people with dementia
and carers
Participate in Do not participate Have madefriends with
programmes/
other people
Do notwith dementia
know about
or carers
programmes
English54%

42% / 4%

67%

Spanish55%

37% / 7%64%

Chinese50%

31% / 15%

51%

Greek

74%

23% / 3%58%

with dementia and family or informal carers through theirown words or the essence of their words as translated.
Results from the survey indicate that a majority ofparticipants completed secondary education or above
with nearly 50% of participants in the English, Chineseand Greek surveys completing college or graduate
school. This indicates that survey respondents are aselect group of people with dementia and informal carers
with a mostly high level of education.
In addition, over half of respondents in all four surveys
also participate in programmes with Alzheimer’sorganisations, societies, support groups or day centres
and in the English, Spanish and Chinese surveys havemade friends with others connected to dementia in someway. This further qualifies the group of respondents asmostly connected to services and programmes. In the
future, it would be interesting to survey individuals notconnected to programmes, as they are likely to be moreisolated and possibly more affected by stigma.

Of the 127 (6%) of respondents with dementia in
the English survey, most reported the diagnosis (ordiscovery of dementia) had occurred within the last five
years (51%) or six or more years (33%). In the Spanish,
Chinese and Greek surveys, the respondent numbers
are too low to analyse. Therefore, most of the results
will be summarised from the English survey with somenarratives included from the other language surveys
for people with dementia. Respondents with dementia
have mild dementia as the nature of the survey would
prevent the participation of people with dementia withmore significant cognitive impairments. Some individual
responses were collected from service providers whointerviewed people with dementia individually andentered their comments. If an individual was unable toanswer, the service provider indicated that in the survey
narrative.
In the English survey 61% (71) of respondents indicatedthey were female and 39% (46) male. Diagnoses reported
in the English survey included mild cognitive impairment(MCI) (10%), Alzheimer’s disease (55%), vasculardementia (12%) and fronto-temporal dementia (FTD)(7%).
To the question In what year were you born? the largest
group of respondents with dementia in the English survey
indicated they were approximately aged between 63 and72 years of age; born between 1940 and 1949 (38%), witha little over half of the participants (56%) being at or over
the age of 65 (born 1947 or before).
Individuals with dementia responded from 13 countries.
The largest percentages of respondents indicated theircountry of residence was Australia, Canada, Finland,
United Kingdom and the United States, with the UnitedStates having the most at 55%.

24

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Survey results

People with dementia
Highlights of the survey results are shared in this reportand some comparisons are offered where the number of
respondents is large enough.

Concealing the diagnosis
To the question Have you concealed or hidden
the diagnosis of dementia from others? 59% of
the respondents with dementia in the English survey
reported not concealing or hiding their diagnosis fromothers. In analysing the themes, people reported thatthey became more open over time. At least twelve
individuals said that being open helps others.
“If you are asking why I don’t hide the fact that I havedementia, it is simple. I have it. If others know it, they
are more apt to accept and understand.”
Person with dementia, USA“We told our adult children right away – and told all of
our friends, with whom we meet socially and for our
regular music events.”
Person with dementia, USA“I made two resolutions on my way home after
receiving word. The first was: This will not be asecret!”Person with dementia, USA“It is easier to admit to explain evident limitations
produced by disease.”
Person with dementia, USA

Of the 24% that indicated they did conceal or hide theirdiagnosis, they cited stigma as the main reason.
“In most circumstances I have found that
if I have disclosed that I have dementia,
my thoughts, opinions, conversations are
discounted and dismissed.”
Person with dementia, USA“I don’t want people to think I’m stupid.”
Person with dementia, New Zealand“I didn’t [hide it] at first, thinking I could change
people’s idea of what a person with Alzheimer’s
disease was like. That we weren’t all helpless. But I
live alone in an apartment community now and I findin this conservative area people regard me much
more positively if I don’t reveal the nature of myillness. I tell those who have a real need to know.”
Person with dementia, USA“Have told my adult children. My husband knows,
my sisters know, my doctors know. Most others areunaware. I am afraid of their reaction, [for example]
my landlord. I appear so normal much of the time(unless you are with me a lot) that I do not think mostpeople would even believe there’s anything wrong
with me.”
Person with dementia, USA

In addition, special issues arise for people who are
diagnosed under the age of 65. A person with young
onset dementia from Scotland ‘did not want their children
to be bullied at school, so delayed going public until they
were older’.
Another person with dementia from the USA ‘Kept it frommy co-workers. My boss and her boss are the only ones
I told’.
Eight individuals indicated that they felt their diagnosis
was their ‘own business’ and not for others to know
about. Five people shared that they themselves still havenot accepted their own diagnosis. Keeping in mind the
low number of respondents in the Chinese survey, 7/10
people said ‘yes, they have concealed the diagnosis’
citing:“Neighbours, the village leaders do not know. People
who know that I am suffering from dementia will nottreat us well.”
Person with dementia, China“This will affect the neighbours’ view of my family.
They may mistreat us.”
Person with dementia, China

Being treated differently
There were two related questions Have you been
avoided or treated differently because of thediagnosis? and Have you been avoided or treateddifferently because of the diagnosis by any of
the following? The second question listed spouse,children, other family members, friends, neighbours,social groups, health care professionals, and by people
in everyday interactions (grocery, retail, restaurants,
post office) as examples. Respondents in the English
survey were evenly split between yes (40%) and no (40%)
answers to the first question, citing themes such asawkwardness or people changing behaviours around theperson with dementia. Specific examples were providedof how family, friends and others treat the person
differently. Of the 20% of individuals remaining, 10%were unsure or did not know if they had been avoided
or treated differently and the rest left the questionunanswered.
“Friends, family are uncomfortable and say
they don’t know how to behave ‘normally’around me anymore – they didn’t really give ourrelationship a chance to move forward.”
Person with dementia, USA“People not speaking [to me]; accused by friend oflying.”
Person with dementia, UK25

overcoming the stigma of dementia · Chapter 2: Survey results

English Survey
Have you been avoided or treated differently
because of the diagnosis?

Person with dementia, Australia“Some people who were friends have ‘drifted away.’”Children

Person with dementia, USA

Everyday interactions“My children avoid me – are not supportive.”

SpousePerson with dementia, USA

Social groups

To the question Have you been avoided or treateddifferently because of the diagnosis? a respondent
in the Spanish survey indicated ‘yes’ and made thefollowing statement:

Health care professionals
Neighbours
Other family members“They call me by my nickname which is Moncho, but
in diminutive, i.e. now they call me ‘Monchito’.”

Friends

Person with dementia (name changed for anonymity)

Have not been0“‘Came out’ straight after diagnosis, writing or
contacting over 150 friends, and received less than 5
responses.”

10

20

30

40

%

“If I make a mistake, my wife tends to see it as
Alzheimer related (e.g. forgetting to move the car
before market day).”
Person with dementia, UK“It’s very interesting to see how people close
to me act. It’s almost as if they are afraidof bringing up the subject. Being a cancer
survivor, I know that I was constantly asked
how I was doing while I was going throughtreatment. With Alzheimer’s, no one asks.”
Person with dementia, USA

In the follow up question, this person indicated thatneighbours treat him differently and added:“I don’t know if it is a different way but what I feel[sad about] is that they call me ‘Monchito’ [ito is adiminutive so this would be like ‘little Moncho’ inEnglish] instead of Moncho as they used to call me
before. They are all really good people but I feel thatthey treat me like a child.”
In the Chinese survey, a respondent shared anexperience about health care professionals:“The doctors here always say that the disease cannot
be treated, treatment is only a waste of money. We
have to go to big cities to see doctors.”
Person with dementia, China“Upon diagnosis [people think] that you have lostyour intelligence and you no longer have any of theknowledge you have attained over the years. [People]
no longer ask your advice on anything. [They] talk to
the person you are with and not you. People can overprotect you which robs you of your independence
much quicker. It should be a gradual process that is
ongoing and care should be adjusted to the changes.
People avoid conversation once you start showing
you are having a word or thought retrieval problem.”Person with dementia, Canada

Social exclusion was also a major theme. For example,
more than 59% of the individuals who answered thesecond question Have you been avoided or treateddifferently because of the diagnosis by any of thefollowing? indicated friends were the social contacts
who were the most likely to avoid or lose contact withthe person with dementia. Respondents felt that theirchildren avoided them the least of all.
“Some of my friends have moved on as I can nolonger be a part of what I used to do.”
Person with dementia, UK

It’s important to note, however that 40% of respondents
in the English survey said they have not been avoided
or treated differently, citing that ‘Friends and family havebeen extremely supportive at all times’ and ‘Treateddifferently in a very positive way. Many helpers andsupporters’. There were not enough responses frompeople with dementia in the Spanish and Chinesesurveys to report a percentage.

Avoiding friendships andclose relationships
To the question Have you stopped yourself fromhaving a close relationship with anyone since thediagnosis? 70 (55%) of people with dementia said ‘no’.
There were very few narratives. Therefore, the following
comments may not be indicative of the feelings of theother individuals who said ‘no’.
“I have not had the opportunity. Many relationships
haven’t happened by reason of benign neglect.”
Person with dementia, USA26

Alzheimer’s Disease International: World Alzheimer ReporT 2012

“Met lovely people through diagnosis and became
friends.”
Person with dementia, UK“It is more difficult now, though, because I no longer
am able to drive, etc.”

Friends connected with dementia% 70
60

Person with dementia, USA

Of the 33 (26%) that said ‘yes‘, most indicatedmaintaining relationships was too difficult. Others said
that people do not understand them or they are notseeking new relationships because they do not want tobe a burden.
“At some point I have to disclose that dementia is
my constant companion, it ALWAYS changes therelationship which soon falls to the wayside. It does
help if the person is educated with dementia, but still
most are not ready to go down that road with yet
another person they care for.”
Person with dementia, USA“I have difficulty looking after my own needs socannot maintain others’ needs e.g., friendships.
Going to the gym is getting more difficult to sociallyinteract.”
Person with dementia, UK“Friends – I can’t talk to them without stuttering.”
Person with dementia, New Zealand“Initiating dating relationships is now extremely
difficult. Further, I stay away from some social eventswith good friends because I feel I would be a burden.
Recently, I declined an invitation to a nephew’s
wedding because I felt my being there would detractfrom the enjoyment of my relatives in this celebratory
event.”
Person with dementia, USA“I am single and the relationship I was in ended fairly
quickly. At that time I could not see taking it to thenext level so I ended it.”
Person with dementia, Canada“I have been hesitant to start potential new
friendships since the diagnosis because I am
afraid that they might notice mistakes on mypart and think it strange i.e. language mistakes
when talking sometimes. And I would not wantthem to know of my MCI, as I feel strongly thatthey would then either treat me differently or
would opt out of our friendship altogether. So I
do not seek new friendships.”
Person with dementia, USA“I only make friends with other diagnosed dementia
people.”Person with dementia, Australia

In the Spanish survey, a respondent who indicatedstopping herself from having close relationships said,

50
40
30
20
10
0

Yes

No

Friends not connected
to dementia

Yes

No

Friends connected
to dementia‘We used to go out very often with a married couple but
now we do it sporadically.’
In the Chinese survey, a person said, ‘I am afraid to tellothers that I have dementia. Therefore, other people arealways impatient toward me, and sometimes make fun ofme’. Another person said, ‘My family wanted to harm me’.
In making friends since the diagnosis occurred, 47% of
people with dementia in the English survey report they
have made friends with both people not affiliated todementia in any way, 32% said ‘no’ and 3% said ‘don’t
know’. Of those that have made friends with people
affiliated with dementia (that is, another person withdementia or carer), 66% said ‘yes’, 18% said ‘no’ and 2%
said ‘don’t know’.
If they have an opportunity to make friends with people
not connected to dementia, they find those friendships
through their faith-based activities, in a senior residenceor other living arrangement with other people, andwith neighbours. Some cited maintaining their existing
friendships.
“Neighbour – she helps me with knitting.”
Person with dementia, New Zealand“Some very loving and understanding neighbours
who take me as I am.”
Person with dementia, UK“Only 1 person. I met a young girl who I believe wasabout 21 years old. We have spent hours talking
over the years and have become part of eachother’s family. I was there for her wedding and am
now awaiting the birth of her first child. We haveacknowledged to each other that we have eachchanged our path since meeting each other. This is a27

overcoming the stigma of dementia · Chapter 2: Survey resultsvery unique person as most people avoid any close
relationships.”
Person with dementia, Canada

For individuals making friends with people connected todementia, they find each other through support groups,
online or through organisations such as Alzheimer
associations.
“Alzheimer’s support group. Walking group and cafe
outings.”
Person with dementia, New Zealand“Online only. Because I live in a rural area, there areno support groups for people with younger onset.”
Person with dementia, USA

Is there awareness of dementia amongst people
in general, political leaders, media in the country
where you live?
The majority of comments to these questions centre
on a true lack of understanding of what people withdementia need and what it takes to keep them active insociety. People with dementia said they felt that politicalleaders do not care unless their own family is affectedby dementia. People that commented also felt thatmedia attention is growing but much of it is a negative
view of a person with dementia in a care home or in thelater stages. Some pointed out the language used in the
media such as ‘sufferer’ and ‘victim’ and hope to see thelanguage change.
“People have heard about it but the majority does
not know what exactly this illness is. I think they arescared and do not know how to behave. It is easierto ignore things and the people with the illness. In my
opinion it won’t change unless they will be educatedbut change will only happen if the government iswilling to do something but they clearly are not.”“Most exceptional to my well-being were the people
connected with the Alzheimer’s Association ‘Early
stage’ memory group.”
Person with dementia, USA

In the Chinese survey, two comments were provided,
both by people from China. One person said, ‘I do notknow whether other people I am talking with suffer fromdementia’. Another said, ‘[I] know a few patients and ask
how they are treated and what medicine they are taking’.

Person with dementia, Hungary“They take far too gloomy and negative a view of it –people didn’t want to talk about cancer in the past,
today it’s dementia. They’re surprised to meet people
like me – and there are quite a few of us – who don’t
conform to the stereotype.”

Awareness of dementia
The majority of respondents (55%) are from the UnitedStates; however, we can see a connection between
the opinion people with dementia have about negative
opinions about dementia within their country with what
they say about the awareness of people in general,political leaders and the media.

Person with dementia, UK“People seem only to have a cursory understanding
but do not understand the specifics of the various

Is there awareness of dementia amongst people in general,political leaders, media in the country where you live?

Do you think there arenegative associations about
people with dementia in the
country where you live?

% 80

% 80

70

70

60

60

50

50

40

40

30

30

20

20

10
0

Yes

No

Don't
know

People in general

Yes

No

Don't
know

Political leaders

Yes

No
Media

Don't
know

10
0

Yes

No

Don't
know

Negative association
about people with dementia

28

Alzheimer’s Disease International: World Alzheimer ReporT 2012

types of dementia and the resulting differences insymptoms.”
Person with dementia, Australia“I think that those who do have some understandingof what dementia is, think of it only in terms of
the late form of dementia – quite advanced – andassume that all people with a dementia diagnosis
are like that, severely affected. And I think that a
lot of people, if not most, do not understand what
dementia means at all.”
Person with dementia, USA“Political leaders do not really care, unless someone
close to them is afflicted with dementia.”
Person with dementia, USA“The Scottish Government is getting the message
although the financial situation can be difficult tomake things better.”
Person with dementia, UK“They are aware of the cost of care, but haveabsolutely no awareness of the need to makeaccommodations for the complexity of life for people
with dementia so they can remain in the mainstream.”
Person with dementia, USA“Increasingly, but that doesn’t necessarily bring
services or resources or prevent serious humanrights abuses in services. Leadership can be
expressed by ‘driving up standards’ something which
politicians do for children but not for the elderly (withor without dementia).”
Person with dementia, UK

For how dementia is perceived by the media:“Although it is not always a good awareness it can be
negative and they don’t show people trying to makethe best and live a good quality of life with dementia
but the SDWG [Scottish Dementia Working Group]
are trying at every opportunity to change that.”“The media still portrays dementia as one thing: endstage Alzheimer’s disease. There is little awareness ofother types of dementia or of stages of Alzheimer’s.
There is such a climate of fear that most people are
in denial about symptoms in themselves and/or loved
ones and do not get tested at early stages when
medication might ameliorate some symptoms.”
Person with dementia, USA

In the Spanish survey, a respondent commented about
political leaders, ‘I believe they all have an awarenessof what dementia is, but to actually be concerned to dosomething, that’s a different thing.’ And said, ‘The media
is aware of what is dementia is, and there has even beena program that focused on the subject but it is in general
an issue of little interest, rather the topic is indifferent to
the media both TV and press and radio’.

Stigma about people with dementia
To the question In your opinion, do you think there arenegative associations (i.e. stigma) about people whohave dementia in the country where you live? over
75% of the respondents with dementia said ‘yes’ and 42
people identified negative examples about people withdementia in their country. The most common negative
association was the feeling of being discounted or
marginalised by others (28%). The lack of understandingof what to do when having a conversation with a personwith dementia or how to involve the person more wasalso a common theme (24%); 14% recognized fear inothers. And, the reinforcement of the theme of avoidance
by friends appeared a few times in answers to this survey
question. Five people indicated they had not experienced
negative associations in the narrative section.
“No question. I think there is a perception that thedisease is a personal short-coming.”
Person with dementia, USA“They think I’m stupid and can’t talk properly.”
Person with dementia, New ZealandPerson with dementia, UK“It’s getting better. More people with dementia arebeing asked for their opinion and some interviewers
are even willing to wait or listen to the answer.”
Person with dementia, UK“Stereotype of late stage old person in nursing homeis all that is shown when dementia is mentioned –never positive images or only a few and counteracted
by the usual negative ones.”
Person with dementia, Australia“They only comment on things which they think will
benefit their careers and don’t listen when you say
we are not sufferers. Ten minutes ago I watched a
TV programme Secret Millionaire, which frequently
mentioned dementia sufferers. They didn’t have aclue.”
Person with dementia, UK“People think that those with dementia are crazy,mentally unglued and unstable and, therefore, areto be avoided because how would you know how
to communicate with them anyway? And wouldn’t
it be so awkward and embarrassing to have to bewith them at all? Many people are afraid of dementia(could I get it myself, even?) and want to stay as far
away from people with it as possible. It terrifies them.”
Person with dementia, USA“My cognitive abilities are still fairly high. However,when I have difficulty remembering words or am slow
in my responses, I sometimes encounter impatience,people trying to find my words for me, exasperation,and so forth. My uncle had Alzheimer’s and I
remember that his children became embarrassed to29

overcoming the stigma of dementia · Chapter 2: Survey results

In your opinion, do you think there arenegative associations (i.e. stigma)
about people who have dementia
in the country where you live?
Discounted
Lack ofunderstanding
Fear
Not Experienced
Avoidancesometimes a slow progression before they will
see the symptoms, that they then can identify as‘dementia’.”
Person with dementia, Australia“I think I was very lucky in having life
experiences that gave me these skills to workon and develop and change as the diseaseprogresses. I was also the primary care partner
for my father who had vascular disease. I
believe this gave me great insight into myown journey and made me realize some of thethings I did well and some of the things thatwere not done well at all.”
Person with dementia, Canada

go out to restaurants with him because they did notknow how his behavior would be.”Person with dementia, USA“I just consider it the problem of the person who holds
the opinion – rather than mine. But if encountered
too often, it saps morale. I belong to other groups
that are minorities locally but this is one where mycompetency is in question.”
Person with dementia, USA“I was asked to resign from my job the day I notified
my manager of my diagnosis (the day after diagnosis).
I finished work that day.”
Person with dementia, Australia

In the Chinese survey, a respondent shared, ‘Other
people will not show enthusiasm, show patience to you,or they may lie to you’.

Coping with stigma
To the question Do you have personal skills andabilities to cope with stigma? 59% said yes, 12% said
no and 28% said they did not know. In the narratives,
people with dementia described that it’s a skill thatdevelops over time, having friends helps them getthrough, and some people indicated turning to their faithfor support. The majority of people who wrote narratives
indicated that becoming educated about the disease isboth helpful and helps them educate others. The otherkey theme from this question revolved around learning
how to adapt to lost skills.
“I think my skills have developed over time, getting
beyond the initial scare (‘you will probably beinstitutionalized within 3 years’ – 12 or more yearsago) finding kindred friends, realizing that lost skills
can be replaced – bolstered with others, that manyof the outcomes of dementia can be embraced andenjoyed … Reading a great book and enjoying it
yet again and again with a ‘deja vu’ atmosphere ofpleasure.”
Person with dementia, USA“I try to inform people when possible about dementia
and the different types that affect those with themdifferently so they can understand how we’re allfunctioning on different levels within the disease… explaining that it is a degenerative disease and“I’ve armed myself with information about
Alzheimer’s by reading lots of books andarticles. I think information and knowledge isthe best defence against stigma.”
Person with dementia, USA“I am able to help allay the initial fears people haveabout my diagnosis when I first talk to them about
it because I can keep the conversation going andlet them know that although I have this disease – I
am doing okay and coping the best I can. When you
first tell people you have dementia – they don’t knowwhat to say … if you (the people with dementia) areable to keep the conversation going – the situation
will be much more comfortable.”
Person with dementia, Canada

Even though there were many positive responses to thisquestion, people with dementia are very much awareof the difficulties of their situation, recognizing there
are good days and bad days and some are ashamed ofhaving the condition.
“I have my faith; that is the only thing that sustains me
at times.”
Person with dementia, USA“I am very, very ashamed of having dementia.”
Person with dementia, Zimbabwe“It depends on whether I am feeling good about
myself on that day.”
Person with dementia, USA

30

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Reducing stigma“Raising of awareness in media, education andamongst health professionals.”
Person with dementia, UK“More information to the public regarding this issue.
Most people are afraid to ask a patient and thus keepin the dark about dementia.”

What do you think can be done
to reduce stigma?
Number of responses

Person with dementia, USA

50“Dollars for research on diagnosis, medication andeventually a cure. Not for me but maybe for mychildren and others.”

40

Person with dementia, USA“Education and awareness programmes; dementia
symbol – just like a wheelchair symbol, where someof the staff in shops, banks, taxis, etc. have hadsome training or education in dementia.”

30
20

Person with dementia, Australia“Persons with dementia should be treated as normal
persons.”10

Person with dementia, Finland0

Education/awareness

Media/
celebritypresence

Government &organisational
supportResearch

To the question What do you think can be done to
reduce stigma? 49 people indicated education andawareness was a priority. Having media attention thatwas more positive was indicated by 27 people and 6
individuals indicated more support from governments
and organisations was important.
“Increase public awareness by all media to show theabilities of sufferers particularly in the early stages
and those with younger onset.”
Person with dementia, Australia“To reduce the fear, to have more of an understandingof dementia that I am still a person with feelings andthat because I have this diagnosis I am still a humanbeing that just needs a little more attention but not tobe condemned to a nursing home.”
Person with dementia, Australia“Education, change the ‘look’ of dementia – it is
not always the doddering helpless old person in awheelchair, in a rest home being attended, being acomplete burden to family.”
Person with dementia, USA“Showing more positive media stories ofliving well with dementia. Showing people
with dementia using their strategies to live
life to the best, coping with the physical andemotional social impacts of this disease.”
Person with dementia, UK“We need to see more people on TV with dementia
in early stages. People like Glen Campbell and Pat
Summitt in US have really helped. Also, programs
that pair children with dementia patients are
wonderful for breaking down stigma.”
Person with dementia, USA

In the Spanish survey, someone from Venezuela said,‘Improve social programmes and research as well as
training, humanization. Improve the facilities in places
where the diseases are addressed’.
And, another person said, ‘Talk about this disease, sothat people know that no one is free [from being affected]
and that it can touch anyone’.
Several respondents in the Chinese survey provided
comments. One person thought it was important to keep
dementia concealed. Another indicated that with the helpof local organisations, stigma could be reduced. And
another indicated ‘the government is clearly concerned’.
One person commented, ‘Dementia and cold are
diseases, but the cold was soon healed, others do nothate. Once dementia is cured, others will not hate aswell’.

Inclusion in everyday life
To the question Are people with dementia includedin everyday life? 34% indicated they feel people areincluded citing they themselves are doing many things
like playing golf, and volunteering. 40% indicated thatpeople with dementia are not included and mentioned
issues like access to programmes, transportation needs
and stigma remaining as the main barrier. Some feltthat for the person with dementia to be included ‘it’s
up the family’; in other words, does the family support
the individual with dementia in getting out of the house.
People who limit themselves from participation in31

overcoming the stigma of dementia · Chapter 2: Survey results

Are people with dementia includedin everyday life?

Yes
No
Don't know

for people like me, who are already living with early
Alzheimer’s. They could!”
Person with dementia, USA“Not always. I would still like to be on boards but
because of my diagnosis [am] not able to be. Even
though I have younger onset at the early stage[it] does not mean that I do not have ideas andsuggestions that could help an organisation addresssome of their issues and be involved in strategicplanning.”
Person with dementia, USA

Some interesting positive examples came out as well:everyday life said things like, ‘I don’t know as I havewithdrawn myself from such social activities’. And,
‘Bottom line is I am ashamed of it’.
Some mentioned that it might depend on the stage of
dementia and abilities and how other people have alack of understanding about engaging with people withdementia:“I can only go on my own experience and would
have to say yes, they are. But again I am in the earlystages, and what happens when dementia is moreadvanced I cannot say.”
Person with dementia, Australia“It is hard to say it can be a post coded lottery
depending on where you live life is busy and not
really a friendly place for people like me who need aslower pace [and] more time when society today isfast and time is something that is limited.”
Person with dementia, UK“There are facilities and various designated places forpeople with dementia but the general public appear
to have little knowledge of it or of how to approachand talk to the dementia patient.”“It depends on their age and their living
circumstances and what you consider‘everyday life’. Are people in care facilities
living ‘everyday life’? Are people locked in
offices for 50 hours a week living everyday
lives? Are those of us retired with disability
living everyday lives? Yesterday I tutored an
unemployed woman. Today I’m at home doing
the laundry is that everyday life?”
Person with dementia, USA“Varies tremendously on the attitude of the person
who has the disease, their care partners and thestage they are in.”
Person with dementia, USA

How to include people with dementia
In order to improve the degree to which people withdementia are included in everyday life, we asked How
can people with dementia be included in everyday
life? Many suggestions were offered around themesof community involvement or change culture (30),
education and awareness programmes (15), government,or organisational services (9). Media involvement was
mentioned by 4 people and 3 people mentioned they

Person with dementia, USA“I think they can be, but choose not to bebecause they cannot handle some of thesituations. People don’t consider what we
as patients feel and go through in certain
situations.”

How can people with dementia be includedin everyday life?
Not possible

Person with dementia, USA

Many people identified stigma as a barrier and said:“[I] tend to be isolated and meet only in groups ofothers with dementia. This is good as people can feelsafe, but bad as they miss out on a lot of everyday
community life.”
Person with dementia, UK“We’re not there yet. For example, the city’s senioradult community centers do not yet have programs

Media involvement
Government/
organisational service
Education
and awarenessCommunity involvement/
culture change
0
5 10 15 20
Number of respondents

25

30

32

Alzheimer’s Disease International: World Alzheimer ReporT 2012

did not think it was possible due to dementia being a
progressive condition.

“Ask them, encourage them, enable them.”

Community involvement and culture change“Hard to say; everyone is different. Some may want to
be involved with activities; others may feel that they
are doing enough at home. Treat the person withdementia as a person. If they are treated as a ‘patient’
they will act as a patient (that is, as if they are sick).”“To be treated as they are not going to catch what
I have, or to minimize what I have so I want to be
included.”
Person with dementia, Australia

Person with dementia, USA

Person with dementia, Canada“Not to be ignored and written off by mental healthteams as ‘no hopers’ but finding things that they cancontribute to.”
Person with dementia, UK“Recognition that someone with dementia is still ahuman being and should be treated with dignity andrespect and included in everyday activities wherever
possible when desired.”
Person with dementia, UK“Making it easier to live at home with family members,
including social workers and other help and financial
help prior to hospice.”
Person with dementia, USA“The problem is not having them included out ofpoliteness while they really would rather not see you.
We no longer have friends.”
Person with dementia, USA“Treat us like normal people. We’re still here,
just a little slower, and sometimes confused.”

Education and awareness“By making others aware of the disease so it’s sociallyacceptable.”
Person with dementia, USA“Education, education, education, awarenesscampaigns, and symptoms treated as disabilities.”
Person with dementia, Australia“A better understanding by the public [of] what anindividual with dementia goes through.”
Person with dementia, USA“More publicity. More demonstrations of thecapabilities of people with dementia and their carers.”
Person with dementia, UK

In the Spanish survey, it was important for one person
to continue to have purpose within the home, ‘Do small
tasks at home (hand a dish, cutlery, put away paper)
which is what I do in my house, always under the control
of my wife or the caregiver’.

Person with dementia, Canada

What did we learn from people with dementia?
The people with dementia who
participated in this survey arecourageous, candid and haveshared meaningful contributions
about how they can be better
treated by society. We learned
that people with dementia areaware that other people are afraid
to talk to them. They would like to
be included in conversations. For
some people with dementia it isacceptable and encouraged to ask
about their memory loss.
People in the survey havesuggestions for how you canbetter communicate with them;as the person with dementia bestknows his or her own limitations.
Survey respondents mentionedthat crowded places are loud anddistracting. It may be difficult forthe person to have conversations.

Some will ask for help rememberingwords they forget, and some prefer
you not correct them, but insteadunderstand the meaning of theirmessage.
People with dementia also shared
how disheartening it is that people
avoid or ignore them. Others,
whether family, friends, strangers
or health professionals tend toaddress their carer and no longer
include them in the conversation.
While people with dementia areaware of their own limitations,they would like their social circles
to adapt and accommodate totheir new level of abilities. One
example from the survey was thegentleman who mentioned hestill enjoys playing golf with his
friends however keeping score has
become less important as he isundoubtedly aware that he can nolonger do so.
People with dementia also shared
the fact that they feel moreisolated and withdrew from regular
activities, either because they
could not keep up or because
they wanted to protect theirfriends from having extra burden.
Friends will need to take more of
the initiative for the person withdementia. Providing transportation,
maintaining visits in the home, andproviding social opportunities werementioned by people with dementia
in their examples.
We must listen to what people withdementia say, and act on it. We
have based recommendations of
this report on their responses (seechapter 4).

33

overcoming the stigma of dementia · Chapter 2: Survey results

Survey results

CarersPeople with dementia and carers participated in the same
survey. Carers had two additional questions that included
relationship to the person with dementia and level ofassistance with daily tasks. For carers, only results from theEnglish and Spanish survey narratives have been analysed
to date. The Greek and Chinese surveys will be analysed for
future publication.
In the English survey, 1716 of the respondents indicatedthat they were carers. 86% (1402) were female, 14% (227)
were male. The most common relationships to the personwith dementia reported were child 778 (48%) and spouse
439 (27%). In addition, 53% said the person they care forwith dementia was diagnosed 1-5 years ago, and 35%
said diagnosis was 6 or more years ago. 7% (119) provide
no assistance, 16% (256) provide a little assistance, 31%(491) provide some assistance, 32% (514) provide a lotof assistance and 13% (215) provide total assistance tothe person with dementia. In the Spanish survey, 211
respondents were carers, with 84% (162) female and 16%(31) male. The relationship to the person with dementia waschild for 123 (63%) respondents and spouse for 27 (14%). In
addition, 45% said the person they care for was diagnosed
1-5 years ago and 39% said 6 or more years ago. 4% (7)provide no assistance, 6% (11) provide a little assistance,
22% (41) provide some assistance, 43% (81) provide a lotof assistance, and 26% (49) provide total assistance to theperson with dementia.
The majority of carers in the English survey were born
between 1950 and 1959. The oldest of the carers wereborn in 1921 and the youngest born in 1995. In the Spanish
survey, the majority of carers were born between 1960 and1969.
Carers in the English survey responded from 47 countries.
Over 63% of the respondents were from the United States
and the next largest percentages were from Europe (11%),
Canada (10%), Asian countries (4%), and Australia/New
Zealand (3%).
Carers from 16 different countries responded to the Spanish
survey. Spain was the single country with the highest
proportion of respondents at 33% followed by Uruguay with
9%, other Latin American countries and also the US.

Concealment
In the English survey, the majority of respondents (78%)
to the question Have you concealed or hidden the
diagnosis? said ‘no’, 11% said ‘yes’. The themes fromthe narratives included carers becoming open over time.
Most felt that it was necessary to discuss the person withdementia’s symptoms with others. Some reported not
accepting the diagnosis themselves and over 50 carers
indicated that by being open about the diagnosis, theyreceive more help and are able to help other people going
through similar situations.
“Initially I (as daughter) considered the symptoms of
my mother’s dementia as my mother’s personal andHave you concealed or hidden the diagnosis?
% 100

80

60

40

20

0

Yes

No
English

Don't
know

Yes

No

Spanishprivate business. Later in the process I became more
open and willing to share experiences with othercaretakers.”
Carer, Aruba“At first I did. Then later, I could not and there wasno point. I was worried about keeping my own job
more than anything else. I still am. I do not talk about
what I live with at work for fear they will think I cannot
handle my position.”
Carer, USA“My husband (the diagnosed) was very open withpeople from the beginning and even called former
co-workers to tell them what the ‘problem’ hadturned out to be. Since he was so open, I followed
his lead. I did not tell everyone in my place ofbusiness immediately as I thought I would need their
good will later on. As my husband progressed andrequired more attention and planning, I advised those
I work closely with, and all have been extremely
considerate of the challenges and my need to planfor business trips and extra hours.”
Carer, USA“We tell everyone that my spouse has dementia or
memory problems. We don’t feel it’s a stigma. It’s nodifference than when we told people he had a stroke,or heart failure. It’s a medical condition. He’s early inthe disease. Forgets a lot of details, but can easily
hold a conversation.”
Carer, USA“I believe it is important to engage as much as
possible with those that understand this illness,to learn and to share for increased knowledge,

34

Alzheimer’s Disease International: World Alzheimer ReporT 2012

appreciation, enhancing compassion and caregiving effectiveness.”want non family persons to drive her anywhere in casesomeone sees her with a caregiver.”

Carer, Canada

Carer, Canada“I have been very open and honest about her
diagnosis to others because I believe it helps others
understand her sometimes inappropriate behaviour.”“My father chose to not tell my mother that she had
Alzheimer’s. We and the doctor told her she had ‘shortterm memory issues.’ She was once told she had
Alzheimer’s – she went ballistic for about two hours …
and then, mercifully, forgot. My father didn’t tell Mom’sfriends of the actual diagnosis … but they all knew
something was wrong.”

Carer, USA

Similar to respondents with dementia, carers mentioned
stigma as the reason for not disclosing right away,
but other things happen later on that require them toshare the diagnosis. Others felt that it was their family’sbusiness and that sharing was not appropriate.
“I have been open with the diagnosis but the rest of
my family has not openly shared. Only in times ofneed do they discuss it with people outside of ourfamily.”Carer, USA“Mom and Dad were very good at hiding what
was happening. Then Dad left on a trip and I wascompletely shocked at how much Mom could not doherself. This was 2 years ago now. Her doctor did not
notice anything until this year because she just getsvery quiet when we are away from home. She did
not want to be medicated (we talked about it in the
beginning when she could still make decisions) so wehave not had it diagnosed.”Carer, USA“In the beginning, I was ashamed and didn’t tellfriends and neighbours. I tried to cover up myhusband’s mistakes.”
Carer, Netherlands“At first, we did not openly talk about it as my motherwas sensitive to the issue. Now that she doesn’tcomprehend much, we may quietly mention the word
(Alzheimer’s) to others who we meet.”
Carer, USA“At first I was unable to talk about the disease without
getting upset and I felt people thought my husband
was stupid or I was a domineering wife. I therefore
hid the diagnosis for a few years.”
Carer, UK

Families face many challenges when decided whether
to hide the diagnosis from others. The considerations
include whether the person diagnosed wants his or her
diagnosis discussed, whether the family carers haveaccepted the diagnosis and how others may react.
“Some family members didn’t want to know about thediagnosis – preferred to think parent was just getting
old.”Carer, Australia“She doesn’t like to talk about it. For the first few
months, she was living in a private care home anddid not want anyone to know about it. She doesn’t

Carer, USA“Because I knew my mother’s social and former
professional friends would treat her differently, I
concealed the diagnosis. I wanted her to be her for as
long as possible.”
Carer, Canada“I have alerted neighbors and those that come in contact
with her that she is having memory issues but have notcome right out and told them she has Alzheimer’s.”
Carer, USA“We have only told family, pastor, and medical caregivers.
He is still active as a musician and doesn’t want thediagnosis to interfere with his playing in public. He
hasn’t told old and close friends so that he won’t betreated any differently.”
Carer, USA“I have a lot of responsibility in my job; I do notwant anyone to blame my personal issues on job
performance. When I need to let my bosses know (ampractice manager [of] large medical group) I will let themknow. [I] do not want special treatment.”
Carer, USA“My wife is very self-conscious about her problem
and feels that it makes her less of a person, so, out of
respect for her, I do not generally discuss it. However,close friends have picked up on it and asked me, so
I have spoken with them confidentially. As a caregiver
it is a problem for me to keep this ‘secret’ because it
is quickly obvious that all is not well with my wife. It isalso obvious that all is not well with me since I am notgenerally available for any activity that keeps me awayfrom her for more than a couple of hours. In addition,
we used to travel extensively and that has come to acomplete and obvious halt.”
Carer, USA

To the same question in the Spanish survey, 78% (170) of
carers said ‘no’ and 8% (15) said ‘yes’. The themes wereslightly different than those in the English survey. There was afeeling that since dementia is not the person’s fault, disclosure
is okay. A few people said that disclosing depended on how
the person with dementia reacts. The person with dementia is
not always aware of his or her own memory issues or does notseem to want to discuss it.

35

overcoming the stigma of dementia · Chapter 2: Survey results“Only my immediate family know about it. I have kept
it hidden from all non-relatives.”“We aren’t included in ‘couples’ activities that weused to be part of.”

Carer

Carer, USA“It took me a year to accept my mother had
Alzheimer’s.”
Carer, Spain“I think everyone should know the state of health of
my mom, it helps to make my care more complete
since all contribute or bring something in a given
time.”
Carer, Colombia“My father only knows that mom is losing her memory
because of her age, but in general, the family doesn’twant to hear anything about Alzheimer’s disease.”
Carer, Argentina“My mom does not want neighbours and friends of
my dad know about it.”Carer, Costa Rica

Being treated differently
To the question Have you been avoided or treateddifferently because of the diagnosis? 50% (862)
carers in the English Survey said ‘no’ and 28% (487)said ‘yes’. Of the individuals that said ‘yes’, 165 reported
social exclusion as the most frequent thing happening tothem and the person they care for. People mentioned not
being included in invitations to social outings and family
gatherings, that friends have stopped calling and visiting,and that friends and family do not communicate withthem any longer.
“People in the retirement community where we live
prefer not to sit at a table with us in the dining room.”
Carer, USA

120 people shared examples of other people’s behaviourchanging around them such as people being awkward,
or not knowing what to say to the person with dementia.
There were also 25 people who reported being treatedpositively in the narratives. Six carers indicated they had
been treated differently at the workplace.
“When we go to church, sometimes people who
would have come to the table where we sat no longer
do that.”Carer, USA“Some friends are gone and some have become
closer.”Carer, Denmark“People are withdrawing from my husband because
they don’t know what to say. However, some family
members are becoming more helpful.”
Carer, USA“Much less support at work to be able to juggle
work and life as compared to others who havechildren to care for. Work doesn’t ‘forgive’ aseasily when you’re a caregiver for a parent.”
Carer, USA“When I moved my mother in with me rather than anursing home my siblings were pissed. I cared for mymother at home until she passed about three weeks
ago. When I took early retirement from my job three
years ago to provide full-time care, my co-workers
echoed my siblings’ opinion that she should be in anursing home. No one visited much before she was
bedridden; and after – no one; save my two sons.”
Carer, USA“Long time friends and family no longer call or visit.
They have stopped all interaction as though thedisease is contagious. They say ‘they can’t bear tosee him like this’.”
Carer, USA“Family members do not want to visit because she
isn’t ‘the same’. One has actually said she isn’t their
Mom anymore.”
Carer, Canada

In the Spanish survey, 14% (25) of carers indicated ‘yes’
they had been treated differently and 77% (140) indicated‘no’. Although the number of respondents that provided
narratives was only fifteen, almost half (47%) reported
social exclusion as the way in which they were treateddifferently. Other carers reported they did not like seeing
the person with dementia treated like a child or looked
at differently, that they themselves were treated with pityand family members withdrew from responsibilities.

“Some people act as if he’s no longer alive and don’t
ask me how he’s doing.”“The brothers of my mother don’t believe the disease
and have broken off the relationship with me.”Carer, Canada

Carer, Spain“Friends have given up inviting me out socially, as I’malways busy with Mum – or too tired to go out!”“The family did not take responsibility and the friends
were gone.”

Carer, UK

Carer, Uruguay“Other teenagers did not understand and theychose to leave me because I was sad.”“Not avoided. But a different treatment, yes: wecherish her the most.”

Carer, Denmark

Carer, Costa Rica

36

Alzheimer’s Disease International: World Alzheimer ReporT 2012English Survey

Have you been avoided or treated differently?
% 70

Have you been avoided or treated differently
by the following?
EnglishSpanish60

Spouse/partner

50

Children
Health care
professionals

40

Social groups

30

Everydayinteractions

20

Neighbours

10

Other family
members0

Friends
Awkwardness

Socialexclusion

Medicalprofessional

Positive
examplesHave you been avoided or treated differently by thefollowing? In the English survey, among the carers whocommented that they have not been treated differently,
66 people explained they have been supported in caring
for their relative or friend with dementia. Those thathave been avoided they indicated several reasons suchas the increased care tasks were too much for somefamily members (10), feelings that other people have asignificant lack of understanding about what caring forsomeone with dementia is like (88), and some indicatedthat there is less socializing for themselves and theperson with dementia (81). Thirty-three people indicatedthat stigma was the reason people avoid or treat themdifferently.
“Some family members felt he should have been ina long term facility because of total care required.
A tennis group wanted him to stop playing tennis,
others were afraid of him getting hurt or hurting
someone.”Carer, Canada“It’s very painful for me, that my mother has been
diagnosed with Alzheimer (severe degree), andshe was hospitalized in [the] psychiatric system[for] 3 months. I was home from work 3 weeks
with depression and unable to take care of myresponsibilities. People do not know how to react!”
Carer, Denmark“It’s odd because those closest to you who seem tounderstand will leave you out of an event, thinking
you cannot handle it instead of talking to you about
it. And then family will put more and more on you andnever say ‘thank you’ and threaten to withdraw their
help if you react negatively to them in any way. It’s a

Have not been
0

10

20

30

40

50

60 %

lose-lose situation. Only my mother appreciates myhelp.”
Carer, USA“I found it particularly difficult talking togovernment departments, banks and otherinstitutions as they are unaware how tocommunicate effectively with us.”Carer, UK“His family was in denial forever it seemed. They
blamed me having him on medication for his
behaviour. ‘Get him off all that medication and hewould be fine’ … they have told many others. As longas I met all his needs (hygiene, financial affairs, etc.
they thought all was well). He was incontinent andthey also felt I was seeking attention, by making thatstatement!”
Carer, Canada“At times we were not invited to dinner parties as the
person having it thought it would not ‘be fair to myhusband to put him through the embarrassment’.
Well he was never embarrassed by his illness but
other people were.”
Carer, New Zealand“The hardest group to deal with has been mymother’s siblings. At first, they were angry
at us for taking control of her finances, andthought we were making some kind of power
move for her money. Now that they realize what
the disease actually is, it is very awkward. In
addition, they are now relying on us to help
explain everything/ counsel them … insteadof being able to be there for us, as caregivers.
Instead of being the ones we could lean onwhen things get really hard, we are actually37

overcoming the stigma of dementia · Chapter 2: Survey results

the ones having to be there for them, as they
process the reality of the disease.”
Carer, USA

Have you stopped yourself from having a close
relationship with anyone since the diagnosis?

Reactions regarding health care professionals also cameout in the themes of the narratives:% 60“Health care professionals are the worst; because she
had Alzheimer’s disease, many were reluctant to treat
her properly for other illnesses. Also nursing staff
were ridiculous in that I had to justify my mother’s‘odd’ behaviours so that she would not be deemed
as a ‘bad’ or ‘dangerous’ person.”

50
40
30

Carer, Australia“Sometimes it feels that GP [generalpractitioner] and some other health care
professionals discard other ailments thatarise because of the dementia due to the factthat my father is in a very advanced stageof the disease and because he no longer
communicates.”
Carer, Australia“Sometimes being treated differently is not bad – I
have been given great treatment because people
know my father has dementia and people try tohelp with that situation. Dad was kicked out of anassisted living (the dementia ward) because he
was aggressive. I would have thought they would
have known how to handle someone with dementia
since it was a dementia ward. He was also kickedout of a dementia adult day center (connected withan assisted living) because ‘he needed too muchattention.’ It is disheartening to me that places thatcall themselves dementia wards are not able tohandle dementia patients that aren’t in the severe
stages of just sitting around and looking at one
another.”
Carer, USA

In the Spanish survey, 68% (102) of carers reported they
had not been treated differently by specific individuals. Of
those that had, they listed other family members as thehighest percentage (24%), followed by friends (13%) andneighbours (11%). Although there were only 30 narratives,
they included comments about receiving little or no help
for the increased care tasks, a lack of understanding,the person with dementia being treated differently anda case of abuse by health care professionals. Only 4people had described being supported by others.
“All the people in my environment have treated mevery well; I have never been avoided or treated in adifferent way.”
Carer, El Salvador“Neighbours and some family members believed thatas you cannot [take care of yourself] you have to die.”
Carer, Spain

20
10
0

Yes

No
English

Don't
know

Don't
know
Yes

No
Spanish“All people left my mom when she got ill. They did notwant to see how she deteriorated. In the year nobody
called me to see how she was.”Carer, Argentina“The different treatment has been really positive. The
closest people have been very outstanding to helpin everything they can. And also taking into accountthat my husband is in the early stages.”
Carer, Colombia“My friends only regretted it and I did not see themagain, maybe I withdraw from them, by the priorityof arriving home. […] Not […] even a call from them… in particular my mother’s friends from the Church
thought of my mother as ‘mad’ they did not visit her… Indeed, I felt isolated, little social support … today I
am building my network of friends who are related todementia.”
Carer, Venezuela

Have you stopped yourself from having a close
relationship with anyone since the diagnosis? In the
English survey, 23% (388) of carers indicated they havestopped themselves from having close relationships;
however 54% (927) had not stopped themselves. We
still have much to learn from carers who are isolated andstruggling to maintain relationships. In narratives, 171
carers indicated they do not have time or it is too difficult
to maintain relationships due to the responsibility ofcaring for the person with dementia continuing the themeof isolation and exclusion from society of both carers
and people with dementia. In addition, the theme of lackof understanding was pervasive as 55 carers indicatedpeople just do not understand what it takes to care forsomeone with dementia.

38

Alzheimer’s Disease International: World Alzheimer ReporT 2012

“As a caregiver, it is difficult to maintain outside
relationships with friends due to caregiving demands
and supervision of the person with dementia. Also
your world centers around caring for your spouseand you lose your interest in broader issues todiscuss with others. Caring for a person withdementia becomes very insular and isolating. You
eventually only talk about life in the dementia world
because it is so consuming. Friends/family not livingin that world may be sympathetic but don’t want tohear about the constant challenges of caregiving andthe losses associated with progressive dementia.”
Carer, USA“I have not stopped myself from having close
relationships purposely, but definitely have lostfriendships just because I have been at times
too overwhelmed or depressed to keep intouch with old friends.”
Carer, USA“I do not hide or ‘sugar coat’ anything for anyone. I do
not attend functions or go for coffee etc. with people
I used to know since I have found they do not want
to hear the truth and are very uncomfortable beingaround me. At this point I really crave someone totalk to and be close to. My wife is not able to carry aconversation about anything and has lost any type ofclose contact. I think I need a hug :-)”
Carer, Canada“Since I need to me be with my spouse mostof the time I am not working, I no longer havethe time for outside relationships, which isunfortunate since I need them more than ever.”
Carer, USA“I do not have time to talk on the phone, much less goout with someone. I am a part time college student
but may have to drop my classes because I cannot
leave my mom alone. My plans of resuming a normallife after my twins graduated from high school have
not worked out like I planned. I am confined to thesefour walls, doctor offices and hospitals. No income
and very isolated. I wish I had someone in my life.
Maybe I would not be so overwhelmed and so alone… invisible.”
Carer, USA“Nobody wants to be burdened with my problems in
caring for my spouse with dementia. Besides, they
do not understand, and then they feel they have to
make suggestions, which are TOTALLY unrealistic!
Makes me furious and cry.”Carer, USA

In the Spanish survey, 39% (67) of carers have stopped
themselves from close relationships; 57% (99) havenot. Similar to the English survey, Spanish-speaking
carers indicated they have no time or it is too difficult
to maintain relationships, they have lost friends, or they

stopped a relationship with someone who has treatedthem unkindly.
“From the moment of diagnosis and also because I
look after my mother, I don’t have time to maintainrelations and I had to stop doing many activities.”
Carer, Spain“In my case for not having help; I had to move awayfrom friendships and groups such as going to church(Catholic practitioner) and from my work (I’m ateacher); the level of […] care that my mom requires
takes a lot of my time; although […] she has been
diagnosed not long ago (6 months) she has periodsof severe agitation and lack of control, I have to sortand manage her medicines, unfortunately in this area
where we live there is no assistance in occupational
therapy so I’ve had […] to investigate and put into
practice what I have been learning.”
Carer, Venezuela“As a family caregiver, I have no time to interact withfriends and friends all have withdrawn because
I devote myself more to take care of my mother,although there is a professional carer that takes myturn when I go to work.”
Carer, Chile“I think that the presence of my mother in my house at
the beginning of the diagnosis was not good for myrelationship with my husband.”Carer, USA“I think that my life turned to support my parents andto cope with the illness of my mom and my parents
that made withdraw from all.”Carer, Costa Rica

“I believe that there are people [friends] that go away
because as caregivers, we hardly go out. But those
who really matter (our children and some relatives)
are there. I always say that the relationship close with
God […] is the most important.”
Carer, Venezuela

Friendships with people notconnected and connected todementia
In the English survey, 43% (732) of carers report making
friends with people who are not connected with dementia
in some way since the diagnosis, for example, they
do not have dementia or do not care for people withdementia; 34% (578) have not made friends. Most citea support system through their current friends, withneighbours and in their current social networks. In
addition, many people report making friends throughtheir faith organisation or volunteering. A couple of carers
indicated they are afraid to make new friends for fear of
rejection.

39

overcoming the stigma of dementia · Chapter 2: Survey results

Friendships with people affiliatedwith dementia

Have you made friends with people affiliatedwith dementia?

In the English survey, the majority of carers (55% or943) have made friends with people who are affiliatedwith dementia in some way, meaning other carers or
persons with dementia. Only 23% (409) have not madenew friends. Carers describe locations where it is easier
to meet friends in the same boat, so to speak, such as
meeting other carers when they visit their relative in thecare home or making friends with the other residents
when they visit their own relative. Over 130 carers
reported making new friends with other carers andpeople with dementia through Alzheimer’s organisations,
support groups and online. Twenty-three peopleindicated they have become friendly with professionals
who work in the dementia field.

% 70
60
50
40
30
20
10
0

Yes

No

Don't
know

Yes

English

No

Don't
know

SpanishIn the Spanish survey, 51% (85) of carers reported
making friends not connected to dementia; 46% (77)reported not making friends. Carers indicated that it was
important to maintain their current relationships and thatpeople who are comfortable with older people tend to be
more sympathetic to their situation.

In the Spanish survey, 65% (112) of carers indicated they
have made friends with people who are connected todementia; 33% (58) had not. The themes in the narratives
are similar to the English survey with people meetingother carers through organisations or support groups.
A number of people described online social networking,such as Facebook, as being a way to connect with new
friends who also care for their relatives with dementia.

Understanding dementia
Do people/political leaders/media understanddementia in your country? In the English survey, themajority of carers (60%, 850) felt that people do notunderstand dementia within their respective countries;
32% (460) of carers reported people do understandEnglish survey

Do people/political leaders/media understand dementia
in your country?

English survey
Do you think there are negative associations(ie: stigma) about people who have dementia
or carers in the country where you live?

% 70

% 70

60

60

50

50

40

40

30

30

20

20

10
0

Yes

Don't
No know

People in general

Yes

Don't
No know

Political leaders

Yes

Don't
No know
Media

10
0

Yes

Don't
No know

Negative association
about people
with dementia

Yes

Don't
No know

Negative association
about carers

40

Alzheimer’s Disease International: World Alzheimer ReporT 2012

dementia. Among the 344 written narratives, 41%(142) of carers reported limited awareness amongst
the general population and 43% (147) reported agreat misunderstanding of dementia, Alzheimer’s
and other related illnesses. Carers felt people havesome knowledge or some awareness, but felt it was
not enough or sometime not accurate and based on
stigmatic beliefs of what dementia is. A few carers said
they wanted ADI to know they feel organisations aretrying hard to change this.
With respect to awareness amongst political leaders,
44% (626) of carers in the English survey felt politicalleaders are not aware of dementia; 36% (509) indicatedthey thought political leaders are aware. In the 299
narratives, 71 carers indicated that awareness of politicalleaders is not enough, with 38 people reporting a lackof understanding of the real issues faced by carers andpeople with dementia. Carers mentioned that politicalleaders may be aware of the growing numbers, but
not of the financial toll the disease imparts on families
individually. They also felt that if political leaders did haveknowledge, it was either due to a personal experiencein the leaders’ own families or important to them during
an election campaign. Twenty-seven carers felt politicalleaders just do not care about the issue.
“Among some, but not enough of them! We still do
not have a national Alzheimer strategy in Canada
and we probably would have one if enough politicalleaders knew more about dementia.”
Carer, Canada“They don’t take actions. They talk about respect andhelp but I expect more.”
Carer, Aruba“Yes, but I question how serious they are in
addressing the issues. In Australia, we havean aging population so this is seen as anopportunity to make money by placing these
individuals into care, often requiring the family
to sell the family home.”
Carer, Australia“There is some awareness but the politicians certainly
haven’t addressed the issue in any in-depth way.
We’re on our own.”
Carer, USA“In America, most of the political leaders are wealthy
and have access to great insurance and medical
benefits so I feel that their family members withdementia/Alzheimer’s are undoubtedly in state-ofthe-art assisted living facilities and/or have skilled
home caregivers.”
Carer, USA“Alzheimer’s disease is still the disease we sweep
under the carpet.”Carer, USA

In the English survey, carers report more awarenessamongst the media – 58% (828) people said ‘yes’ to thisquestion; 32% (460) said ‘no’. In the 306 responses tothe narratives, 45 carers indicated they recognize thatmedia awareness is growing. However, many carers (41)reported that they still see a great misunderstanding of
the facts of dementia and its impact on families. Thirtynine people felt much media attention is either focusedsolely on drug research or is still negatively represents
dementia. Twenty-five people noted the celebrity facesthat have helped normalize dementia such as Ronald
Reagan, and Pat Summitt (a famous basketball coach) in
the US and Terry Pratchett in the UK.
“There is starting to be more awareness but weare a long ways away from where we need tobe.”Carer, Canada“There is awareness, but not enough. I think it isgetting better. When my husband was diagnosed
almost 9 years ago with early onset Alzheimer’s, I
called elder care and several other organisations
and they wouldn’t even talk to me because he wasyounger than 60 years old. It was very frustrating.
The Alzheimer’s Association where we lived atthat time also had no programs for early onset
Alzheimer’s. It was a very lonely place to be for a
caregiver. I still get the comment that ‘He doesn’tlook like he has Alzheimer’s’. How is one with
Alzheimer’s supposed to look?”
Carer, USA“There seems to be more coverage of Alzheimer’sand dementia in the media but I don’t know if ittranslates to more awareness, rather it seems thatthey put a story in the news when there is a major
conference or announcement of a celebrity being
diagnosed.”Carer, USA

Stigma about people with dementia
Do you think there are negative associations (i.e.
stigma) about people who have dementia in the
country where you live? Even though media attention
is growing, the majority of carers (64% or 892) stillrecognize a negative association about people withdementia within in their respective countries; 21% (296)felt there was not a negative association and 15% (212)
were not sure. In the 324 narrative responses, 99 people
felt a lack of understanding, 70 carers shared examplesof the person with dementia being discounted by being
made fun of, being ignored even though present, treatedlike a child or talked over, and 60 carers indicatedavoidance as another way in which people demonstrated
negativity towards a person with dementia. Thirty-sevenpeople commented that a person with dementia is seen
as having a mental illness or ‘crazy’.

41

overcoming the stigma of dementia · Chapter 2: Survey results

Negative associations about
people with dementia
Lack ofunderstanding
Discounted
Avoidance
Mental illness/‘crazy’Fear
Old person’s
disease“On disclosure of her diagnosis my wife was asked toterminate her employment and she finished work onthat day.”“When my husband does ‘odd’ things whenin public, people look at him strangely. For
example, in the grocery store he didn’t gothrough the check-out as directed and others
were waiting. The person behind me wasletting out audible sighs. I turned to her andapologized, saying that my husband has
Alzheimer’s. Her attitude, and the check-out
person’s, changed completely. I used the word
‘Alzheimer’ because it seems to be more easily
understood than ‘Dementia’.”
Carer, Canada“I think a lot of people believe that people withdementia cannot function anymore in our society.
[Dementia] is however a gradual process, andespecially in the beginning, my mother was still able
to do things and to understand what people said
about her to us.”Carer, Netherlands

Carer, Australia“We still hear about people with dementia
whose friends drop away because of fear or
misunderstandings about dementia. They areawkward or uncomfortable about how to act aroundthe person or his/her spouse, so they reduce
their social interactions. My mother, however, wasfortunate to have solid friends, who were all strong intheir religious beliefs, who stayed with her and Dadduring the entire journey from diagnosis until she
entered long-term care.”Carer, Canada“There is some stigma here in so far as it is not easy
to take the person anywhere … Facilities are limited –scarcity of disabled toilets; transport is difficult.”
Carer, Australia“There is an apathy. People just don’t seem to beinterested in people with dementia. They are notsufficiently educated in the dementias.”
Carer, Australia“Absolutely. They are no longer regarded as humanbeings especially by nursing and medical staff asthey are seeing a ‘diminished’ state of the person
who I love. In other words, they do not see theperson that I do as I have the history with him andnot them.”
Carer, Australia“I found many health care personnel – especially in
ER [emergency room] and in patient units have little
understanding or respect for older adults – especiallythose with dementia. They try to chemically or
physically restrain them instead of understanding theneed to walk around. They ‘medicalize’ the condition
instead of looking at ways of supporting the patient’s
independence and autonomy and sense of self.”
Carer, Canada

Stigma about carers
Do you think there are negative associations about
people who care for people with dementia in the
country where you live? In the English survey, 60%(842) of carers indicated they did not think there were
negative associations about carers in their respective
countries. Of the 24% (336) that did, their narratives
indicated that they too feel avoided or discounted inaddition to the person with dementia. Thirteen carers
shared examples of hostile reactions they receivefrom others including being treated negatively in theworkplace. They feel there is a lack of understanding
and appreciation about the time and costs associatedwith caring for a person with dementia. Not just financial
costs, but the expectation that giving up their own lives isan acceptable expense in society. A theme of martyrdom
was used or implied 19 times as a way that people
respect the carer’s sacrifices, but some carers indicatedit was not their desire to be martyred. Other examples
include siblings and others making the carers feel likethey were making excuses for themselves or the personwith dementia by not participating in previous activities.
Being treated with pity was a common theme, as was
unsolicited advice from family, friends and strangers. The
most common unsolicited advice reported by the carers
in the survey was to place the person with dementia in acare home. Requests of better support for carers werealso a theme.
Do people/political leaders/media understanddementia in your country? In the Spanish survey, 64%(113) of carers indicated that people do not understanddementia in their respective countries; 27% (48) said
that people do understand. Similar to the English survey,
carers indicated there is lack of understanding of thedepth of taking care of a person with dementia.
“There is no awareness, or understanding of the
population and the community in general, because

42

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Spanish survey

Spanish survey

Do people/political leaders/media understand dementia
in your country?

Do you think there are negative
associations (ie: stigma) about people
who have dementia or carers in the
country where you live?

% 80

% 80

70

70

60

60

50

50

40

40

30

30

20

20

10
0

Yes

Don't
No know

People in general

Yes

Don't
No know

Don't
No know

Yes

Political leadersMedia

there are no programs by State or culture for thehealthy elderly with dementia at a population level.”
Carer, Venezuela“People don’t know much of disease until their family
suffers from it.”Carer, Costa Rica

“The general concept of dementia that we have is thata person who has some type of dementia is crazy.”
Carer, Costa Rica

“Not as it should be; not only in my country, aroundthe world, I think that there is much ignorance
and shame. Especially by relating dementia withmadness.”
Carer, Venezuela

With respect to awareness amongst political leaders,a greater number of carers (75% or 132) in the Spanish
survey indicated that political leaders in their respective
countries are not aware of dementia. They reported
that there is no aid or financial assistance for people
in their country and that political leaders have little,
if any, understanding about the disease. If they haveknowledge, a lack of action is felt. Also similar to theEnglish survey, carers pointed out that if a politicalcandidate has personal experience with dementia in thefamily, he or she is more likely to be aware.

10
0

Yes

Don't
No know

Negative association
about people
with dementia

Yes

Don't
No know

Negative association
about carers“Except in cases that they have the experience of afamily member. It is not considered as a public healthproblem.”
Carer, Uruguay“Not yet, but I think that they will be paying more
attention to this issue soon.”
Carer, Chile“I have personally requested economic support andother things, and for my Grandma to receive suchsupport she needs to be completely abandoned
and neglected by us to receive this assistance!! As
I said at the beginning for many years I cover all theneeds of my grandmother, from diapers, medical, etc.
Right now I have a difficult situation because I have
no work and there is no one who will help one in this
aspect.”Carer, Costa Rica

A difference between the English survey and the Spanish
survey is awareness amongst the media – 61% (107) of
carers felt that the media does not have an awarenessof dementia and only 30% (53) felt the media did. Of
those that did, they felt it was not enough or limited andthat Alzheimer’s organisations encouraged what media
existed. Some carers provided examples of the media’s
lack of understanding and their inappropriate use of theword ‘crazy’ when referring to people with dementia.
“The media is aware of what is dementia and there
has been even a program that focused on the43

overcoming the stigma of dementia · Chapter 2: Survey results

subject but it is in general an issue of little interest,
rather the topic is indifferent to the media both TV
and press as a radio.”

What do you think can be done
to reduce stigma?

Carer“As I said before, they always say that [people withdementia] are crazy, that they are people who arelosing their ability in their brain.”
Carer, Colombia

The majority (53% or 93) of carers felt there are negative
associations about persons with dementia in theirrespective countries; 28% (49) did not feel this way and
20% (34) were unsure. Of the 49 narratives, 14 cited
examples of others thinking the person with dementia is
crazy or has a mental illness or that the person is drunk.
Eleven carers said people with dementia are avoided,
abandoned or invisible in their society. Ten carers said
people with dementia are mocked, or seen to no longer
have function or treated like children. Overall, carers
identify a lack of understanding about what dementia is,and what is involved in caring for someone with dementia
and people are hidden away for fear of bringing shame tothe family.
In the Spanish survey, 60% (105) of carers indicatedthere is not negative association about carers in theirrespective countries; 23% (41) indicated there is and17% said they were unsure. Similar to the English survey
themes include avoidance, pity, being discounted as
the carer, unsolicited advice and accused of making
excuses.
Carers sensed that people in general feel that they areworthy of recognition as many devote themselves to theperson with dementia.

Coping with stigma
To the question Do you have personal skills andabilities to cope with stigma? 67% (928) of carers in
the English survey said yes, 14% (189) said no and 19%(269) said they did not know. In the narratives, carers
described that it’s a skill that develops over time, having
friends helps them get through, and people indicatedturning to their faith for support or that their love for the
person with dementia gets them through. Many carers
in this study reported having either previous personal
experience by caring for other family members or
professional qualifications that augment their knowledge
about the disease and help them cope. Deflection wascommon as well. Carers reported simply not caring what
other people think. Another key theme was that of ‘gooddays and bad days’.
In the Spanish survey, 53% (90) of carers reported they
have skills and abilities to cope with stigma; 25% (42)did not and 22% (37) were unsure. Common themes
included education about the disease helps, andone must have resilience and patience. Similar to theEnglish survey, faith is important and love for the personwith dementia. Some carers reported that the personwith dementia did not choose to have this disease

EnglishSpanish

% 70
60
50
40
30
20
10
0

Education & AwarenessMedia

and therefore, it is not their fault. For those that did
not feel they have abilities, depression was cited as aconsequence, and sought counselling.

Reducing stigma
There were 945 responses to the question What do you
think can be done to reduce stigma in your country?
Carers in the English survey reported education,
information and awareness activities (648) were the mostimportant task for countries.
“Continue educational efforts about dementia and callfor a national strategy in the same way that cancer
is now getting much more financial support andeducation than it used to 20 years ago.”
Carer, Canada“More information, more support from the government
and the media.”
Carer, Aruba“Raising awareness about Alzheimer’s disease.
Involving and showing activities of people withdementia. Helping caregivers to accept the
new conditions and that Alzheimer’s disease isa disease.”
Carer, Iran

“We can educate general public, [and] students byconducting awareness programmes about dementia
and giving training to the caregivers.”
Carer, India“More opportunities for young people to meetolder persons with dementia in settings thatencourage evocation of their strengths …
Public education programs could do more in
the way of teaching the general public how to44

Alzheimer’s Disease International: World Alzheimer ReporT 2012

talk with people with dementia, how to findtheir strengths, what obstacles to be aware of.
Many people are bewildered by how to respondto people who do not talk ‘normally’ and so
may shy away from trying to engage them.”
Carer, USA“More education and awareness for the public of what
this disease is and how to accept and deal with it. My
husband is met with stares and looks when he is in
public and displays symptoms, for the general public
has no understanding. I have heard ‘what a weirdo’,
instead of knowing he can’t help his behaviour.”
Carer, USA“Better awareness by the general public. Focus on
the positives of what the person can do – there is alife after dementia diagnosis!”
Carer, Australia“Improved knowledge and understanding of dementia
and improved support programs for people affectedby it. It is likely that dementia will affect more people
with an aging population, but it appears that little isbeing done to address the obvious needs.”
Carer, USA“A free workplace training package that would
sensitize people to the plight of dementia, that could
be delivered in-house by all organizations. It would
have to be free as most organizations wouldn’t pay
as they don’t see it as a priority.”
Carer, Canada“Mandatory education at all levels of education. A
couple of classes/short films/discussions each year.
And as more families consolidate to care for older
family members, applicable problem-solving courses
are essential … creative problem solving that willserve not only those caring for those with dementia,
but ripple out into careers and life in general. I believein the power of creative problem-solving, starting
early-on.”Carer, USA“Awareness of the disease and helping people
understand the warning signs. Assisting
those with dementia to seek out about theirexperience to enlighten others. Educating
health care professionals about the diagnosis
and the benefits of giving the diagnosis.
Acknowledging Alzheimer’s disease and otherdementias as chronic illnesses. Formallysupporting family caregivers in their caregiving
roles with policies and financial support.”
Carer, Canada

Media was also seen to have an impact by 21% (201).
Many carers reported having celebrities visible is helping
the cause. Survey respondents also suggested thatgovernment and organisations have a role in reducing
stigma 10% (96), in addition to policy 4% (37) andresearch agendas 3% (32). Over 20 people sharedspecifically they feel that financial support is seen as
a commitment to helping families care for people withdementia at home versus ‘sending people away’ tonursing homes because that is where the majority offunds currently provide assistance. Thirty-nine people
reported that reducing stigma is unnecessary.
“More people need to be informed of what dementia
is and how it affects people. Some people may
not even know that young people are also affected.
There could also be more media awareness.”
Carer, Australia“Education of the general population and having
positive role models portrayed in the media.”
Carer, Canada“More information in media, for example, commercialsthat talk about dementia and the effects, the effects
on families, emphasizing its a disease.”
Carer, Canada

Dementia, poverty and stigma
A number of people mentioned in the survey that they face serious financial problems because they have losttheir jobs due to having dementia or caring for a family member. From the population based research done by
the 10/66 Dementia Research Group, we know that 6-30% of carers cut back or cease paid work in order tocare*. Financially supporting carers can give them status and recognition for their role, as well as helping theirfinancial situation. Reducing stigma could lead to greater sympathy for people with dementia and their carers andunderstanding that they should be valued by society.
There may be a parallel with the situation of people with disabilities, at least in higher income countries, who
campaigned for inclusion in society and were given some financial support. This happened as societies became
more open to including people with disabilities. Some European countries, including the Netherlands, UK and
Germany, now offer some financial support to dementia carers for the time they spend in caring for their loved
ones.
* World Alzheimer Report 2009, p55

45

overcoming the stigma of dementia · Chapter 2: Survey results

In the Spanish survey, 115 carers responded. The largest
number of people (74) also said education, information
and awareness initiatives are the most important to
reducing stigma. Similar to the English survey, carers
mentioned providing education early in schools andputting education in health centres so people see it
during check-ups. There was also a theme of having
more services available outside of major cities where
it is possible stigma could be more prominent than inlarger cities. Fourteen people reported assistance withthe costs of caring for someone with dementia fromgovernments would reduce stigma as the investmentof government money would legitimize the cause. 11
carers wanted to specifically see the creation of respiteor support centres where people with dementia could
go during the day so families can work and care for their
loved one. Twelve individuals felt media initiatives would
be helpful.
“Inform, deliver talks at all levels: families, students,
health workers, reach the media, authorities, startworking with children.”
Carer, Mexico“Promote healthy ageing, have a vision of positive
experience and for health professionals andauthorities to prepare better.”Carer, Venezuela“To start support groups, where participants canbenefit from the experiences of others and focus onthat this is a disease like any other.”
Carer, Panama“More education in the primary and secondary school
population.”“Talk more about it, programs on television, makeinformative campaigns.”
Carer, Spain“I don’t think it’s something easy. It is important[…] [to educate] the population about what is thisdisease and its variant symptoms from one moment
to another, [what] being with people [with dementia][…], from one place to another, [or one] situation toanother [is like]. Only with information that reaches
the entire population can [stigma] be reduced and I
think we need a generational change.”
Carer, Spain“Provide abundant information on the symptoms ofthe disease and its development, because in somecases people who are in the early stages can beproductive and functional. The information helps todefeat the stigma.”
Carer, Puerto Rico

“Raise awareness and educate about it, from anearly age, so the respect and support for thistype of disease becomes part of the culture.”
Carer, Venezuela

Including people with dementia ineveryday life
In the English survey, the majority of carer respondents(660, 49%) felt people with dementia are not includedin everyday life, while 33% (439) do feel people withdementia are included. Key themes that were identified
from 294 narrative responses included the stages ofdementia being an indicator of how included someone

Carer, Costa Rica

“To inform about the symptoms of the illness andnot to allow trivialisation of the illness through things
like stupid comments or using reference to illness toinsult someone.”

Are people with dementia includedin everyday life?
% 80

Carer, Mexico“Communicate. Raise awareness. Educate. To
legislate. Train (the medical profession should betrained to advise and support family members of
the patient). Economic aid to solve the cares of thepatient. Flexibility on the job (schedules, licenses,etc.), family caregiver for the patients.”
Carer, Uruguay“Designate more financial resources from theGovernment to the training of personnel in thetreatment of patients with Alzheimer’s disease, as
well as specific support assistance centres.”
Carer, Spain“First of all create a policy regarding this disease andespecially support to families involved with patients.”
Carer, Chile

70
60
50
40
30
20
10
0

Don't

Yes No know
EnglishsurveyPWD

Don't

Yes No know
EnglishsurveycarersDon't

Yes No know
Spanishsurveycarers46

Alzheimer’s Disease International: World Alzheimer ReporT 2012

with dementia could be (64) and that the family is mostly
responsible for ensuring the participation of the personwith dementia in society (64). Fifty-four individuals
shared concerns about access issues such as lack oftransportation, and living in rural areas without services
and 49 carers referred to stigma as a barrier to everyday
participation.

“It is so hard to take out someone with
Alzheimer’s into public. It is overwhelming forthe person suffering from the disease, andpeople do not want to slow down and help/talkto people with Alzheimer’s.”
Carer, USA“To some degree – could be more if more activities
were dementia friendly – technology can be helpful
here. In my county, the office for aging distributes
GPS bracelets, allowing people to live in thecommunity longer without fear of getting lost.”“In nursing home facilities, these patients are left tosit in hallways or in their rooms. They need programs
and places they can be brought to during the day toassist families while they are working or at school.
Personally, we don’t trust the state assistanceavailable.”

Carer, USA

Carer, USA“The invitations and facilities are just not available.”“It depends on the skill set of the people around
you and who you surround yourself with. Family
members who cannot afford engagement activities
are either stressed, overwhelmed, or cannot find thetime to provide their love one services. Money is afactor as well.”Carer, Australia“Many carers I’ve met describe how friends stop
visiting when their spouse acquires dementia. My
parent’s friends have tried to stay in touch but they
are all very old now or dead so his social circle has
reduced and it’s almost impossible for him to form
new friendships due to features of the illness suchas short term memory loss. I take him out weekly
and some people in the shops remember himfrom when he was well and still speak with him butothers are finding it difficult to cope with things likeaccommodating his wheelchair or being resilient withhis awkward behaviours. Some places are beaut[great] though and seat us where it’s nice but also
won’t bother other customers – this attitude enables
us to have nice outings still.”
Carer, Australia

Carer, USA“In some ways, not in others. For example, somechurch congregations are willing to accommodate
the person with dementia, whose behavior does not
impact others during a service. Others are not.”Carer, USA“They lose friends with their behaviours and carers
often don’t share what is going on on a day to day
basis for fear of being judged for how they handle thestress or fear of losing friends, or because they are
depressed and have burnout.”
Carer, Canada“Good question. I think that many caregivers aresecluded at home, fearful of what the general public
might think.”
Carer, Canada“With more and more transactions/interactions
occurring on computers and using pin cards forpayments, people with dementia cannot function.
My mom cannot pay with a credit card or debit card(can’t understand the process or pin codes), she
can’t count cash, she drives little (and will soonstop) so she’s isolated unless her family helps her.
Purchasing groceries and meal preparation is difficult
making proper nutrition a challenge. She can’t telltime so has trouble knowing when to get up, when
to be ready for an appointment, etc. without a lot ofcoaching. She has essentially lost her independence
in a short time and she’s not even a severe case.”
Carer, Canada“People are placed in nursing homes generally. It is
harder and harder for families to afford taking care offamily members with dementia while trying to workand provide for their families.”
Carer, USA“They are neither included or excluded. They suffer insilence. Their families suffer in silence. There seems
to be an ‘out of sight, out of mind’ mentality in thiscountry toward those who have dementia and theircaregivers.”
Carer, USA

In the Spanish survey, 71% (118) carers reported thatpeople with dementia are not included in everyday life,
while 16% felt that they are. Themes from the narratives
were similar to those from the English survey. Some
carers said stigma remains the barrier that prevents
people with dementia from being a part of society.
Others commented about the stage of the illness beinga barrier and lack of access to services or resources toenable the person to live a more integrated life. Family
assistance was also cited as the primary means by which
the person with dementia would be able to be included.
“Lack of resources. There are many architecturalbarriers.”
Carer, Spain“When on rare occasions any of his other sons visit
my mom, when talking to her, they do not address

47

overcoming the stigma of dementia · Chapter 2: Survey results

How can people with dementia be includedin everyday life?
SpanishEnglishEnglish PWD“More awareness about dementia, such as educating
people to talk TO someone in the room who
has dementia, rather than ABOUT them. Again,
education is key to increasing people’s comfort levels
with persons who have dementia.”
Carer, Canada“Age friendly environment/culture and dementia
friendly environment/culture.”

Depends on
Stage

Carer, Egypt“As long as possible keep them busy and active inhousehold chores and seeing friends.”

Media

Carer, Australia

Government &organizational
programmes“The government and public transportationcompanies act as a leading role to build more publicaccess for the disabled and elder people whoneed walking aids (including regular appraisals andmaintenance). Education – starting from primaryschool.”Education &awareness
Community
Involvement

Carer, Hong Kong SAR China

0

10

20

30

40

50

“Special programs designed to consider where thepatients are and to encourage creative activities.”
Carer, USA

her, they don’t know what to do, they do not include
her, as if she does not exist.”
Carer, Chile“Fund more family carers so the dementia
sufferer is more comfortable being included
because of the increased confidence provided
by the family carer.”“They are segregated from society.”

Carer, Australia

Carer, Mexico“By inviting them to cultural and social programs andeducating care givers and care takers.”“If it is in the primary stage or second, you can, butthen it is no longer possible.”
Carer, Costa Rica

How to include people with dementia
in everyday life
In the English survey, there were 752 responses tothe question How can people with dementia be
included in everyday life? Community involvement orchanges to the culture were mentioned by 315 carers
as ways to include people with dementia in everyday
life. Government or organisational programmes weresuggested by 227 individuals and education andawareness programmes cited by 140. Sixty-five people
noted that they did not think this was possible due to theseverity of a person’s condition.
“The government needs to appropriate
resources for local Alzheimer’s associations
to organize events just for Alzheimer’s disease
patients who live with their families. The
current practices to appropriate resources forthe general elderly population do not work forus.”
Carer, Hong Kong SAR China

Carer, India“There needs to be a feeling of compassion
instilled in the community … NOT PITY.”
Carer, Australia“They can be taken out for a drive, to the shops, toa plant nursery, for a walk. Even though they havedementia and they forget what they have done they
can still enjoy outings.“
Carer, Australia“Provide more help for the caregivers in theirown home.”
Carer, Canada“Making special accommodations for people withdementia … start with public awareness, then buildon that with special measures at public events. I
would love to take my Mom for ‘part’ of the Royal
Canadian Mounted Police musical ride, but it’s justsuch an ordeal with parking and seating, not tomention the cost. Everything I do with her costs
double when you include my cost. Entertaining mymother is incredibly expensive and I don’t want tojust sit around and visit all the time … she does that
24/7 at the nursing home.”
Carer, Canada

48

Alzheimer’s Disease International: World Alzheimer ReporT 2012

“Unfortunately you need money to get a taste of
everyday life. As money becomes scarce and savings
etc. dry up your everyday life slips away. Financial
stability would allow more interaction in public life.”“Through spaces and groups with greater
understanding and education that enables them toplay in what they can do.”Carer, Costa Rica

Carer, Canada“They have no place in this selfish and consumer
society.”“Workplaces could continue to employ people
in some capacity with diminished responsibility
rather than people becoming unemployed themoment they get a diagnosis.”

Carer, Spain“To go to these places to have fun as doing exercises,
crafts or simply talk. Here the cost of these places isvery high.”

Carer, Australia“Look and treat them like normal people. Allowthem to at least try before you tell them thatthey can’t do anything.”

Carer, Costa Rica

“Through more medical resources, social plans andintegration of these families with economic andpsychological support towards the same.”

Carer, USA

Themes were similar in the Spanish survey. Of the
107 carers that answered this question, 39 indicatedgovernment or organisational support is needed, 23
reported that community involvement or a culture change
would help people become more integrated and 18
carers said that people should live their lives and not be
prevented from participating in everyday life. Other carers
mentioned that help for families should be a priority
and that the lack of resources, particularly financial is abarrier to allowing people with dementia to participate ineveryday life more fully.

Carer, Argentina“That there would be more therapies and more official
centres for them not private, because not everyone
can afford paid centres. In this manner they could
maintain themselves more actively for a longer time.”
Carer, Spain“Use the experience of life they have had to share withchildren and young people in social programs.”
Carer, Puerto Rico

“Establishing support centres, where you can practise
activities with people who interact with them and do
not feel excluded or disabled from the rest.”“Starting with recreational programmes,
cognitive stimulation programmes and alsosocial groups.”

Carer, Chile

Carer, Mexico“Programs of inclusion, several sectors:
Government, churches, health institutions.”
Carer, El Salvador“To do and have daily home centres, to train carers
and support the family, including our relatives withdementia to events, trips … ”

References
1

Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M, INDIGO
Study Group (2009). Global pattern of experienced and anticipateddiscrimination against people with schizophrenia: a cross-sectional
survey. Lancet 373(9661):408-15

2

World Health Organization. (2012). Dementia: a public health priority.
Geneva: World Health Organization.

Carer, Venezuela

What did we learn from carers in the survey?
Carers want and need help andsupport with taking care of theperson with dementia – from otherfamily members, from friends, andfrom society.
Being a carer is isolating due
to the 24 hour responsibilities
of caring for the person withdementia. Family and friends needto take the initiative to assist thecarer in successfully maintaining
relationships with them.
Programmes and supports are
expensive. Carers have little timeand few financial resources toutilise what resources do exist to
help the person with dementia stay
integrated in society.
Carers are often criticised forthe quality of care they provide;

their lack of engagement inprevious activities and the timethey give to the person withdementia is underestimatedand underappreciated. Better
understanding of what carers
require to maintain theiremployment, their mental healthand their social networks is needed.

49

overcoming the stigma of dementia

Mind games –smoke and mirrors
Lynda A Hogg
My name is Lynda Hogg and I was diagnosed with Alzheimer’s disease in 2006.
I became involved with various groups, initially to learn more about the illness,then subsequently to try to make a difference. I wanted to illustrate the value of
people with dementia still being involved in society, as it was sad to see people
excluded and isolated because of an illness.
Stigma is a terrible thing whether real or perceived. Sometimes people withdementia think they are being stigmatised and this can be denied by otherpeople but if someone was to search their conscience they would probably findin some instances that indeed they did stigmatise, because they were not wholly
accepting of a person after diagnosis.
Labels can become so frustrating, as instead of being Jim, John, Lucy or Ann,
you suddenly morph into a person with dementia first, followed by your nameand other qualities. It’s as if the rest of a person has vanished into thin air, neverto return. In my experience, it is at the point of diagnosis or shortly afterwards
that stigma begins to appear. It is as if friends and relatives can accept and beamused by someone’s foibles prior to this and can warmly comment that they
are getting eccentric as they get older. However, once dementia is diagnosed, it
is as if a line has been crossed and some people don’t want to be associated withsomeone with an illness affecting the brain. I have noticed that some people
whizz straight to the end of the illness, as if their friend or relative was about
to arrive there with no pathway in between. I don’t know why this happens but
ignorance of how the illness progresses may play a part, so education is the key.

Lynda Hogg is a Council memberof Alzheimer Scotland and a
Board member of Alzheimer’s
Disease International. Lynda
was diagnosed with Alzheimer’s
disease in 2006. She previously
worked at Heriot-Watt University,
Pharmacy Research Unit, studying
doctors’ prescribing habits andafter that moved to the Scottish
Pharmaceutical General Council
in a complex administrative role
which involved working withpharmacists to provide a wide
range of information and responses
to queries.

My friend Dorothy experienced stigma after her mother was diagnosed with
Alzheimer’s disease. Prior to diagnosis, her mother had been doing a lot of odd
things, such as serving tinned fruit with a main meal. Dorothy’s sisters were all
married with families but Dorothy was single and stayed with her mother. Afterdiagnosis, the sisters all contributed in some way to her mother’s care, which
was very helpful. Dorothy worked full time and her mother went to a day centre
each day within a hospital and she has nothing but praise for the care received
there. However, all her mother’s friends stopped coming to the house. The houseused to be the hub where all they all met for coffee and a chat but it just ended.
No explanation was given or asked for; it was like a clock had stopped never tobe wound again. Dorothy probably felt it more than her mother, especially astime passed. Without dialogue between people at the time, it is not possible
to know now if the friends’ reaction was to the diagnosis, or how the illness
manifested itself in Dorothy’s mother and now it had a name. As the friends
were still happy to visit prior to the diagnosis, it does appear that the diagnosis
of Alzheimer’s disease triggered the stopped visits. It could be that people now
had a reason - as they saw it - to stop coming. Dorothy felt the people could have
kept coming, staying only for a shorter time if need be.
More recently, another dear friend of mine related the story of how her father
was treated by friends. Her father Charles was diagnosed with a mixed dementia
last year. He used to have his own bakery business but retired some years ago.
He was very keen on golf and walking and this was how he mainly filled his
spare time. Charles was having problems at home misplacing things and he got
so that he did not want to go to golf as it was too difficult. He said it made hishead too busy, having to talk to his fellow golfers on a round and concentrateon the game. He also complained that even before he left the house he became
exhausted getting ready and by the time he got to the car, he could not bebothered driving to the course. In a short time he stopped golfing and driving
and this was before diagnosis. However, his wife Mabel was a great card player

50

Alzheimer’s Disease International: World Alzheimer ReporT 2012

and they used to play every Wednesday afternoon at the house of a friend andhis wife, Alexander and Margaret. They had all been friends for years, were all
now retired and this became a ritual. They always enjoyed their time there andfound the friendship very relaxing. Charles still managed to play cards witha little help from his wife. Charles and Mabel shared the diagnosis with theirfriends and continued to visit their home each Wednesday for card games.
About a month later, Margaret started going out on the Wednesday and was
not there in the afternoon. Alexander made a lame excuse for Margaret each
week, such as shopping, dental appointments, or a chiropodist visit. Charles
and Mabel thought this strange, as this had never happened before in theirlong friendship. Although Charles had been diagnosed with a mixed dementia,
he was still the same person as before - a very alert and capable gentleman.
He noticed as the weeks went on that Alexander would get a telephone callwhen they were there, always about the time they were due to leave andAlexander always said it was a wrong number. Charles eventually queried thisand Alexander, although flustered, told him the truth. Now that Margaret
knew what was wrong, she did not want to keep up the friendship. Although
she felt sympathetic, Charles asking the same questions had started to get her
down. He usually missed the toilet when he used it and there was a wet floor
to clean. Margaret knew she was being a coward but she just could not face theafternoons anymore. She felt that Charles would be better off at a day centre
with people with dementia. Yet, the repetitiveness and missing the toilet had
been happening before diagnosis and had been tolerated, so instead of knowing
what was wrong being a bridge to acceptance, it was a pathway to stigma. The
friendship ended.
Although in some respects Alzheimer’s disease and other dementias are known
about, due to a great deal of awareness raising, stigma can still exist. In bothmy illustrations there would have needed to be a lot more communication
between everyone involved. Even if there had been, I’m not too sure if thefriendships could have been salvaged. Perhaps with Dorothy’s mother but withCharles, Mabel, Alexander and Margaret, I think the friendship was broken
when Margaret decided to remove herself from the situation each week. I think
it would have been far better to have a discussion between all four people andfor them to be open about their feelings. Surely something could have been
worked out. Alexander and Margaret could have visited Charles and Mabel andleft when they thought it was appropriate. Also Charles would be using his own
toilet, so Margaret would not have the problem she did not appreciate in her
own house.
It is so unfortunate that being diagnosed with an illness can cause suchproblems. Personally, I am all for openness but I can understand why somepeople choose to keep the diagnosis to themselves or a few close family
members. Encouraging more people to be open in theory should reduce stigma
and I know of many instances where it has. People need to be accepted for who
they are. It always astounds me that it can be friends who turn away, as if they
are somehow tainted by association. People with dementia are normal people;
they just happen to have an illness.
I would like stigma to disappear from all our lives n

51

overcoming the stigma of dementia

On stigma
Andrew Watt
There are few things more frightening than the thought of losing your mind.
Losing those last shreds of awareness that tether you to your life and the people
around you. If you’re lucky this notion will remain just that, a fear. An abstract
thought that acts to occasionally cajole you into exercising more or eating
better. But for others, a diagnosis of Alzheimer’s disease or dementia can turnthis fear into a reality, taking a healthy mind and slowly stealing it away as they
watch it happen 1. There are currently an estimated 36 million people livingwith dementia worldwide 2. Thirty-six million people quietly slipping awayfrom both themselves and the loved ones who surround them. In many cases
these individuals are struggling with more than just their condition alone, they
are struggling with the profound stigma that remains affixed to a diagnosis ofdementia.
The stigma associated with dementia adds an additional burden to the alreadyheavy load carried by all those who are affected. Emanating either externally,
from the wider population, or internally, from the affected individuals andcarers themselves 1, such stigma acts to reduce people affected by dementia‘from a whole and usual person to a tainted and discounted one’ 3.
Until recently my father, Alan, was one of the many individuals living withdementia. He was diagnosed with younger-onset Alzheimer’s disease at the ageof 54, although we would later discover that this diagnosis was complicated byalso having Lewy Body Dementia. The diagnosis changed his life irrevocably,and over the course of nine years he went from being a prominent surgeon to afrail old man as the diseases took their course.
As with most dementias, the deterioration in his cognition did not occur
overnight. However despite this, small changes in his social circles began to
evolve soon after his diagnosis. Whilst a solid few remained, many of his friends,
including those from the medical community, stopped calling. Some madeexcuses but most simply faded away. Before long a similar pattern of desertion
could be seen in my mother’s circle of friends as well as my own and those of mysiblings, leaving us all with a feeling of isolation as the social supports we hadso carefully constructed slowly eroded away. This sort of social stigmatisationand isolation are commonly reported by people affected by dementia, withmany relationships waning despite cognitive faculties remaining largely intact.
It remains hard to know whether the shift in friendships arose from my own
issues in dealing with the diagnosis or whether my friends had lacked theknowledge of how to cope during this hard time. In reality it was probably alittle of both. Fear, anger, shame, guilt and a general awkwardness tend to hangheavily over the heads of both those diagnosed with dementia and their carers
in the early stages of the disease, as attempts are made to reconcile the diagnosis
with their everyday lives.
Andrew Watt has worked closelywith Alzheimer’s Australia since
2002 to raise awareness withinboth the Western Australianand Victorian communities.
He has served on the Board of
Directors of Alzheimer’s Australia
Dementia Research Foundation
since 2010 and is currently
undertaking a PhD within the
University of Melbourne where
he is investigating blood-borne
biomarkers of Alzheimer’s disease.

‘People become very clever at being able to avoid you. It becomes a very lonely
experience for many years.’
Carer‘Once diagnosed, friends soon disappear; they find it hard to see the decline inyour loved one, and then once they have died, the carer has to start and makea new life and sometimes [new] friends’
Carer 4In many ways, the early stages of dementia are the forgotten years. With only
minor adjustments, diagnosed individuals are often able to retain a sense of
normality in their daily lives. In his initial years with the disease, my father wasable to continue enjoying the travel, films and friends in much the same way
as he had prior to his diagnosis, albeit with a slight increase in help from thosearound him. He even acted as a member of the Consumer Advisory Committee

52

Alzheimer’s Disease International: World Alzheimer ReporT 2012

for Alzheimer’s Australia (Western Australia) for over a year, passing on his
insights on life after a dementia diagnosis. Despite this, I am ashamed to admitthat a great deal of the stigma levelled at my father during this time emanatedfrom me. In the early stages, it was easier to talk through him or not talk to him
at all; to adjust to the loss that was to come rather than watching the diseaseslowly take its course. The heady mix of anger, guilt, shame and sorrow that
his diagnosis had instilled in me resulted in my losing sight of who he was as aperson, seeing instead the disease that would eventually claim his life. I lost ayear to those wasted emotions. A year in which my father’s mind remained clear
but in which my fear and shame kept him at arm’s length. In the end though it
just took time; to adjust to the diagnosis and to realise that the time we could
still share was more important than my own concerns.
As carers we are not immune to the stigma that continues to surround dementia
and at times find ourselves perpetuating these notions rather than acting tohalt them, particularly within those early stages. However, as time passes andour awareness grows, we are better able to see those affected by dementia as theindividuals they are rather than the condition that afflicts them. Equally, it isimperative that we strive to challenge the stigma of dementia which pervades
the wider community by ensuring that accurate representations of the condition
are presented and an open discourse is established. Perhaps then the burden of
dementia can in some small way begin to be reduced n
1 Alzheimer’s Society, Dementia: Out of the Shadows, 2008: London.
2 Alzheimer’s Disease International, World Alzheimer’s Report 2011, M. Prince, R.
Bryce, and C. Ferri, Editors. 2011.
3 Goffman, E., Stigma: Notes on the management of spoiled identity 1963, Englewood
Cliffs, N.J.: Prentice-Hall.
4 Alzheimer’s Australia NSW, Addressing the stigma associated with Dementia, 2010.

53

overcoming the stigma of dementia

Enhancing legal rights for people
with Alzheimer’s disease byimproving quality
Kees Blankman
One of the effects of Alzheimer’s disease is the growing loss of capacity. People
with Alzheimer’s disease find it more and more difficult to take care of theirown legal and financial interests. This requires a legal framework that upholds
a delicate balance between supporting people with Alzheimer’s disease andrespecting their decisions on the one hand and creating forms of representationand proxy-decision making for them on the other hand. International
conventions, recommendations from the Council of Europe and domestic
legislation as such cannot realise a tailor made solution for every situation. But
they can facilitate the process of reaching this solution, introduce safeguards
and remove barriers. As the international convention on the rights of persons
with disabilities formulates in the fourth paragraph of article 12: ‘… measuresrelating to the exercise of legal capacity … are proportional and tailored to theperson’s circumstances …’
For legal experts and lawyers involved in contributing to this legal framework,
the main concern must be to respect the rights and preferences of people
with Alzheimer’s disease. Introducing and applying additional provisions ofrepresentations such as guardianship measures is part of the delicate balancebut should never have priority over our main concern.
I was fortunate to be chairperson of a group of experts for the Council ofEurope that produced the text of the Recommendation on Continuing powers
of attorney and advance directives that was adopted in December 2009. An
advance directive is a written instruction that specifies what actions you want
to be taken regarding your healthcare if you are no longer able to make thosedecisions. The second paragraph of principle 1 of this Recommendation isof paramount interest and reads: ‘in accordance with the principles of selfdetermination and subsidiarity, states should consider giving those methods[continuing powers of attorney and advance directives] priority over measures ofprotection.’ I fully agree with this principle stating explicitly that guardianshipmeasures are the second best answer for situations of incapacity, and preference
should be given to self-appointed representatives and arrangements. A
recommendation differs from a convention; it does not compel but urges
states to modernise their guardianship legislation and to introduce a systemof continuing powers of attorney. A number of European states have alreadyintroduced such a system including a digital model for a continuing power ofattorney, a national register and safeguards to avoid misuse. The names differ,
but the mechanisms are generally the same whether it is called lasting powers
of attorney (England and Wales), Vorsorgevollmacht (Austria and Germany)or Mandat de protection future (France). Other countries remain behind inproviding an easily accessible legal provision for people with (an early diagnosisof) Alzheimer’s disease to make arrangements for a future period of incapacity.

Kees Blankman is associate
professor of Family Law and
Health Law at the VU University
Amsterdam and substitute judge
at the courts of Zutphen and’s-Hertogenbosch.

There is a lot of work to do for lawyers active in this field. The Dutch parliament,
for example, is discussing a bill on guardianship reform that introduces more
instruments of supervision by the courts and quality requirements for court
appointed representatives with three or more appointments as a guardian.
The proposals deserve support, but the government unfortunately failed to
introduce a system of continuing powers of attorney. Two years ago, legal
professionals started an initiative and came up with a model for a living will
and a register. This model, however, is rather extensive and particularly suitable
for more wealthy people. For financial reasons, this provision is not easily

54

Alzheimer’s Disease International: World Alzheimer ReporT 2012

available for the greater public. It is, for example, twice as expensive as granting
a power of attorney and getting it registered in Scotland. Scotland seems pretty
successful in respecting the autonomy of incapable adults since the number of
powers of attorney exceeds the number of guardianship measures.
Enhancing the rights of people with Alzheimer’s disease does not stop when aconvention or new national legislation has entered into force. I discern several
challenges for the future. Some of them coincide with my personal ambition
both as a researcher, a judge and an advisor of the Alzheimer Center in
Amsterdam. One of the findings of a recent major research project on incapacity
in care situations in the Netherlands is that the assessment of incapacity bothin legislation and in practice is still underdeveloped. Improvement is necessary
and I expect to be involved in drawing up proposals for improvement. Anotherfinding of this study was the lack of a central point of information for guardiansespecially for guardians from the family. The level of quality in some cases
turned out to be low. Courts appoint and fire guardians and sometimes provide
the appointed guardian with brief information, but for non-professional
guardians this is simply not enough. Because of the scope of their powers andthe human rights of the people they represent, a more extensive infrastructureis needed for guardians in which guidance, education, information and perhaps
supervision is available. Improving the infrastructure to my opinion cannot
effectively be achieved by enlarging budgets. Raising public awareness andaffinity are just as important. A side effect of creating a stronger infrastructure
might be tackling the stigma that is still connected with Alzheimer’s disease.
Rights of people with Alzheimer’s disease are also at stake where it concerns
the implementation of guardianship measures. Consider the architects of the
Yokohama declaration. The declaration was accepted as the result of a World
Congress on Adult Guardianship (Yokohama, September 2010) and contains
a number of important principles regarding the attitude, knowledge and skillsof adult guardians. Whether this document will grow into an international
standard of professional guardianship is uncertain, but the first step has beentaken.
The overarching theme seems to be enhancing the rights of people with
Alzheimer’s disease by improving quality, not just in legislation, but also inassessing incapacity, in standards for guardians, and in offering easily accessible
information and support to guardians. Enhancing the rights of people with
Alzheimer’s disease will not result in eradicating the disease but it will certainly
improve the quality of life of a growing number of people in our world novercoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

Chapter 3

Examples ofprogrammes toreduce stigma
There are many misconceptions that build
and maintain stigma associated withdementia, such as the myth that memory
loss is a normal part of ageing or that aperson with dementia can no longer be an
active member of society. These myths
must be dispelled, and an important way toachieve that is education.
Increasing awareness of dementia is a
crucial component of the work currently
being carried out in many countries aroundthe world by Alzheimer associations andother organisations such as research
centres on a national, regional and local
level. A host of successful activities andprogrammes have been coordinated withthe aim of educating the public, informal
carers, care professionals and key decision
makers about dementia.
This chapter highlights some of the efforts
that have been made around the world toraise awareness and reduce stigma. We
have divided them into six categories:• People with dementia speaking out• Dementia-friendly communities• Dementia experiences• Outreach programmes• Promoting earlier diagnosis• Art and physical activity

People with dementia
speaking out

It could be argued that the most powerful meansof reducing the stigma and correcting the common
misconceptions surrounding dementia is for those
who have the disease to be seen and heard morethan they are now. Increasingly, people with dementia
are coming forward to show that an active life after
diagnosis is possible. Networks are forming around theworld, bringing together those living with dementia formutual support and to strengthen the call for change.

The Dementia Advocacy and Support Network
International
The Dementia Advocacy and Support Network (DASN)International was formed in 2000 through an online social
forum. The network of people with dementia from aroundthe world aims to: ‘Promote respect and dignity for persons
with dementia, provide a forum for the exchange of
information, encourage support mechanisms such as localgroups, counselling groups and Internet linkages, advocate
for services for people with dementia, and assist people
to connect with their local Alzheimer’s association.’ A key
focus of the network is empowering people with dementia
to becoming actively involved in their own care andtreatment and to improve the lives of others by speaking
out.
In July 2001, DASN International put forward a proposal to
Alzheimer’s Disease International (ADI) for greater inclusion
and recognition of the needs of people with dementia.
DASN International’s Christine Bryden became the first
person with dementia to speak about her diagnosis at aninternational conference. This landmark presentation took
place at the ADI conference in New Zealand in October
2001 and the inclusion of people with dementia hassince become an essential feature of the ADI conference
programme. In 2003, Christine became the first person withdementia to be elected to the ADI Board of Directors.
More than ten years later, DASN International continues toexist as an online network, bringing together some of themost powerful voices from the field in an effort to ensurethat people with dementia are heard.
http://www.dasninternational.org/

55

56

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Scottish Dementia Working Group

spokespeople at educational events and in the news
media.
The Advisors have played a key role in some of the
Association’s successful advocacy efforts, including
helping to secure the addition of younger-onset
Alzheimer’s to the USA’s Social Security Administration’sCompassionate Allowance Initiative and the creation of
the first US national Alzheimer’s plan. They also createdthe Principles of a Dignified Diagnosis, the first statementof its kind written to improve physician and clinician
interactions with people with dementia. In August 2012,
current and former Advisors developed tips on how tocombat stigma based on their personal experiences,which will be published during World Alzheimer’s Month.

The Scottish Dementia Working Group was formed in
2002 as a national campaigning group run by and forpeople with dementia. Their three key aims are tohighlight the importance of early diagnosis, to improve
nationwide access to post-diagnostic support, and toensure a well-trained workforce in the dementia field.

http://www.alz.org/WAM
http://www.alz.org/about_us_early_stage_advisory_group.asp

European Working Group for People with
Dementia

The Group has gained a strong reputation for providing
inspirational speakers at events and conferences acrossthe world, providing the best evidence that people withdementia can lead an active life after diagnosis. The
Group gives frequent interviews, runs training sessions
for professionals in the field, and has produced threeDVDs, a guide for those who are newly diagnosed and ajoke book.

In April 2012, the Scottish Dementia Working Group
collaborated with Alzheimer Europe and Alzheimer
Scotland to bring together people with dementia fromacross the region to discuss the formation of a European
Working Group for People with Dementia 1. The formationof this group was prompted by Alzheimer Europe who will
allocate a position on their Board for a person nominatedby the group. The Working Group will also act in anadvisory capacity for Alzheimer Europe.

In 2010, the Scottish Dementia Working Group was
involved in the development of Scotland’s Dementia
Strategy. They are now a partner in overseeing theimplementation of the Strategy, with quarterly meetings
taking place with the government to discuss progress.

The initial meeting, which took place in Glasgow,
Scotland, was attended by nine people with dementia
from the Czech Republic, England, Germany, Ireland, theNetherlands and Scotland.

The Group is funded by Alzheimer Scotland, which also
provides support and training. There are currently morethan 140 members making up the Scottish Dementia
Working Group. Similar groups exist in the Netherlands(Kerngroep Dementia), Belgium (the Fighters), Englandand the Czech Republic.

Breaking barriers in Japan

http://www.sdwg.org.uk/

Alzheimer’s Association National Early-Stage
Advisory GroupUSA
The Alzheimer’s Association National Early-Stage
Advisory Group, now in its seventh year, is comprisedof men and women from across the U.S. who provide
their unique insight on the needs of people living with
Alzheimer’s and their caregivers. Their work includes
raising awareness of issues related to dementia,
advocating for increased funding for research andsupport services, and helping the Association provide
the most appropriate programs and services for people
living with early-stage Alzheimer’s and other dementias.
The Early-Stage Advisors meet once a month, serve a
one-year term and, during this time, serve as national

To address the stigma associated with dementia, for the
first time Japanese people with dementia publicly shared
their experiences at the 20th International Conferenceof ADI in 2004. Sixteen people with dementia attended
the event, which included a press conference run by aperson with dementia that generated widespread news
coverage across the country 2.
This conference marked a real turning point for people
with dementia in Japan and paved the way for further
events providing an opportunity for people with dementia
to speak out, including the country’s first People with
Dementia Conference, which took place in October 2006.
At the conference, people with dementia drew up an
appeal outlining how they wished to be treated by various
groups within society 3.

I CAN! I WILL!
The I CAN! I WILL! library was launched in September
2011 as a place for people with dementia, carers andothers within the dementia field to share their ideas forraising awareness and reducing stigma. The website
breaks ideas down into ‘books’ for different audiences

overcoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

including medical professionals, people with dementia
and Alzheimer associations. In addition to adding theirown stories or ideas, visitors to the site can comment on
and rate other stories.
Between 21 September 2011 and 20 May 2012, almost
5,000 unique visitors viewed the site. More than 120
ideas had been posted on the site by May 2012 and an
email subscription tool is available for those who wish to
be informed of new posts.
The I CAN! I WILL! ideas library was developed by
Richard Taylor from the USA who is living with dementia,
in collaboration with Laura Bramly and ADI.
http://www.alz.co.uk/icaniwill

The EDUCATE programme
England
The Early Dementia Users’ Co-operative Aiming to
Educate (EDUCATE) project was developed as acommunity outreach programme for those in the earlystages of dementia in a community in Manchester, UK.
The project aims to improve the confidence of those
who have recently received a diagnosis by providingthem with opportunities for communication about theirexperience with a variety of groups including school
children and social care professionals. An 18-month pilot
project began in 2009 and by April 2012, 20 volunteers
were involved with the project. Group meetings takeplace on a monthly basis where it is decided who will
be presenting to which group. The project is currently
funded by the European Union through their Senior
European Network Support programme 4.

Dementia-friendly
communities
A new trend is emerging following identification of
the essential function of communities to safeguard
the inclusion of people with dementia and theircarers as active and respected members.

Dementia Friendly Communities
Ireland
In 2011, the UK’s Department of Health commissioned
community interest company Innovations in Dementia toseek the views of people with dementia and carers about
the development of Dementia Friendly Communities(DFC). They highlighted five aspects that were consideredmost important in forming such a community: physicalenvironment, local facilities, support services, social
networks and local groups.
Based on the outcomes of this project, the Alzheimer
Society of Ireland hosted internal workshops to review
their activities and discuss improvements that could bemade in-line with the DFC findings. These discussions
culminated in a report, released in March 2012,
outlining the Society’s four key aims: to develop local
support groups and one-to-one support; the on-goingincorporation of the DFC findings into the Society’s work;
the development of guidelines on how to create a DFC for
wider use; and initiation of new services that will assist inconnecting or re-connecting people with dementia with
their community 5.
Implementation of new programmes acrossIreland’s counties has already begun and includes
intergenerational activities and one-to-one support.

Strategy For Excellence In Dementia Care
San Francisco, USA‘It’s not a disgrace…it’s dementia’
In March and June 2012, Alzheimer’s Australia
NSW launched three short films aimed at Assyrian,Cambodian and Croatian communities, providing
information and personal perspectives from carers
in the native language in an attempt to dispel themyths and break down the stigma associated withdementia. The ‘It’s not a disgrace…it’s dementia’short films promote dementia as an illness andnot a normal part of the ageing process. Awardwinning films in Arabic, Ukrainian and Serbianunder the same title were released in 2010. The
series was produced with the support of Australia’s
Department of Health and Ageing and Ageing
Disability and Home Care.

http://www.youtube.com/watch?v=qvLRtZUh8tI
http://alzheimersnswlibrary.blogspot.
co.uk/2012/04/cald-dvds-on-dementia.html

A panel of dementia experts, commissioned by San
Francisco’s Department of Aging and Adult Services,
called for an urgent response to the growing numbersof people with dementia living in the state in December
2009. The panel’s report, 2020 Foresight: San Francisco’s
Strategy For Excellence In Dementia Care, highlighted
14 objectives and 35 recommendations to address the
problem, including the development of policies andpractices to ensure the needs of those with memory
loss were met within communities. It was hoped that
this particular objective would inform, and be informed
by, endeavours to create dementia friendly communities
elsewhere on a national and international level 6.
The project is on-going and focus for implementing
the plan is on education and training, improvements
in housing systems and access, and encouraging the
involvement of people with dementia in their community.
Training has been provided for professionals including
the police, bus drivers and airport security staff.
Discussions are underway between a number of service
providers as to how cost-effective, appropriate housing

57

58

Alzheimer’s Disease International: World Alzheimer ReporT 2012services can be improved or developed for those on alower income.

will contribute to a report prepared for the Prime Ministerin September 2012.

An event, due to take place in November 2012, will
include discussion and review of the work being carriedout for the plan in line with changes to the government’s
care policies and practices. Those involved in theimplementation of the plan, including the Alzheimer’s
Association of Northern California and Northern Nevada
and a new workgroup created for the project, are now
directing their attention towards making the areas in
the community where people with dementia connect
with others ‘dementia capable’, an essential feature of adementia friendly community.

http://dementiachallenge.dh.gov.uk/

The Dementia Challenge
England
As part of the UK Prime Minister’s Dementia Challenge,
launched in March 2012, a Dementia Friendly
Communities Champion Group was formed to fulfil
one of the four key objectives of the Challenge: tohave up to 20 towns, cities and villages taking part in a
programme to become more dementia friendly by 2015.
The Champion Group – which includes industry leaders,
town and city representatives, people with dementia
and carers – will work towards the development of anationwide campaign to raise awareness. As an initial
step towards defining a dementia friendly community andaddressing the common issues currently faced by people
with dementia and their carers in the UK, members of the
public were given the opportunity to share their thoughts
and experiences. The findings from this outreach activity

La Memoria es el Camino
Spanish journalist, Guillermo Nagore, is currently
walking 7,050km across 15 countries as part of anawareness-raising effort created by Confederación
Española de Asociaciones de Familiares dePersonas com Alzheimer y otras demencias(CEAFA). The project, La Memoria es el Camino(The Memory is the Way), began in Spain on 18
March 2012 and is expected to continue until
December when Guillermo reaches Jerusalem.
The trip will incorporate Italy, Croatia, Syria
and Lebanon among other countries and as heprogresses Guillermo will collect stories frompeople with dementia and family carers to sharethrough social media networks.
This activity is organised by CEAFA to raiseawareness of the growing impact of dementia andencourage the Spanish government to develop andimplement a national dementia plan to address
this.
http://lamemoriaeselcamino.com/

Ville Amie Démence
Belgium
Twenty-five cities, municipalities and provinces in
Belgium are already operating as a ‘Dementia Friendly
City’ (Ville Amie Démence) as part of a national network
to improve the lives of people with dementia andtheir carers. The Dementia Friendly Cities Charter,drafted in March 2011, focusses on sensitisation withincommunities, the rights of people with dementia, thedevelopment of appropriate services and action withincities and consultation. Cities that have signed theCharter host and develop a range of activities to ensurethat people with dementia and their carers remain
connected to their community.
La Ligue Alzheimer, the national Alzheimer association
in Belgium, offers training sessions and documentation
to assist those cities who sign the Charter with
implementing their plans. Activities developed for people
with dementia and their carers, which are all free ofcharge, include Alzheimer Cafés, home assistance andintergenerational programmes. ‘The Fighters’, a group for
people with dementia to share their experiences, is also
an important part of this programme.
http://www.ville-amie-demence.be/

War on Dementia
South Korea
As part of their mission to address the rapidly ageing
population and growing numbers of people withdementia, the government of the Republic of Korea
introduced their ‘War on Dementia’ in September
2010. As part of this campaign, the national Alzheimer
association coordinated training programmes in aneffort to raise awareness and reduce stigma. A rangeof measures have been taken, including the trainingof large numbers of people as ‘dementia supporters’.
The programmes were attended by a variety of groups,
from young school children to those working in public
places who are likely to come into contact with people
with dementia. Nursery school children also spend time
playing with residents of nursing homes and a numberof schools offer community service credit to those whowork with people with dementia. Funding for the newactivities and improved services for people with dementia
was generated by a 4% increase in the national healthinsurance payments of all of those living in the Republicof Korea. The association trained 5,000 individuals
as well as a number of other institutions before theresponsibility for implementing the programme wasreturned to the government 7.

59

overcoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

Dementia and Age-Friendly Neighbourhoods
Australia

and information between cities to enable them to become
more inclusive of and accessible for older residents.

Alzheimer’s Australia NSW (New South Wales)developed a discussion paper, launched in July
2011, under the heading Building Dementia and AgeFriendly Neighbourhoods. The paper, one of a series
on dementia-related topics, includes a dementia andage-friendly outdoor design checklist with practicalsuggestions for improving the physical environment
such as pedestrian-only walkways, good lighting andthe use of a dementia symbol in hospitals 8. The paper
was the result of a series of consultations with consumer
committees made up of 60 people with dementia andcarers.

In preparation for the development of the Network, the WHO
commissioned research in 33 cities across 22 countries in2006 to ascertain the opinions of their older residents oneight key areas including respect and social inclusion, social
participation, outdoor spaces and buildings, appropriate
housing, community support and health services. Although
the programme is not targeting dementia specifically, thestigma of old age is connected with the stigma of dementia.
We hope that the consideration, inclusion and respect will
extend to older people with dementia.

The paper calls on governments in New South Wales toincorporate the information within the paper into local
and regional policy documents and planning resources.

As part of the initiative, those cities signed up to the
Network must produce a plan based on two years ofplanning, three years of implementation and a progressevaluation before improvements continue to be made.
http://www.who.int/ageing/age_friendly_cities_network/

Alzheimer and You
Germany
Deutsche Alzheimer Gesellschaft, the national Alzheimer
association in Germany, host a website under the title
Alzheimer and You, aimed at children and young people.
The purpose of the site is to encourage increased
contact between children and people with dementia as
well as to provide dementia-related information that canbe used in schools and support collaboration between
schools and care homes.

Alzheimer Café

The website contains a variety of information, including
advice on how to deal with dementia if a relative isdiagnosed, signposting to counselling services andvolunteering opportunities. A forum is also available forchildren and young people to find the information or
support they may need.
In 2007, as part of the website launch, Deutsche
Alzheimer Gesellschaft ran a contest, Alzheimer & You– Show your commitment, inviting 14-21 year-olds tosubmit a creative piece based on their experiences andencounters with people with dementia. More than 100
entries were received in a range of formats, including
photography, film and paintings.
As part of their on-going efforts towards making
Germany more dementia friendly, Deutsche Alzheimer
Gesellschaft also developed an information pack about
dementia for emergency service workers as well as
those who work in supermarkets and banks. The pack,which gives examples of the daily life of a person withdementia, continues to be used by the association’s
regional branches for training purposes.
http://www.alzheimerandyou.de/

Age-Friendly Cities and Communities
World Health Organization
In June 2010, the World Health Organization (WHO)officially launched the WHO Global Network of AgeFriendly Cities and Communities. The purpose of the
Network was to coordinate the exchange of knowledge

Alzheimer Café Belgium

The first Alzheimer Café® opened its doors in1997 in the Netherlands. In his contacts withpeople with dementia and their families, Dr Bère
Miesen had noticed that talking about the illness,even between partners or within a family wasoften taboo. Knowing that making dementia
discussable, and providing information about
it and its consequences, is very important for
the acceptance of the illness, Miesen thoughtthat it would be good if all those involved could
meet each other in a ‘relaxed forum’ to exchange
experiences and to talk about dementia. And what
better way to describe such a ‘relaxed atmosphere’
than with the word ‘café’? Alzheimer Nederland
adopted the idea and enabled their branches to set
up Alzheimer Cafés including producing a manualand a training programme for discussion leaders.
There are now around 200 Alzheimer Cafés in the
Netherlands, and other countries have successfully
adopted the model.

60

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Dementia experiences
Simulation of the experience of living with thesymptoms of dementia is an effective means of
reducing stigma and raising awareness amongst thegeneral public in a number of countries.

Memory Footprints
CanadaThe Alzheimer Society of Montreal in Canada introduced
their interactive workshop, Memory Footprints, in 2004.
The programme aims to give healthcare workers an
insight into what it feels like to have Alzheimer’s disease
that, in the long term, will support them in considering
alternate interventions and increase their holistic
understanding of the person they care for 9.
A major focus of the project is on the creation of empathy.
Practical activities encourage participants to identify theirpersonal stereotypes associated with Alzheimer’s disease
and recognise the consequences of these perceptions
from the point of view of the person with dementia. The
workshop also encourages the development of skills
for providing person-centred care. Participants are
asked to share their personal strengths, weaknesses
and experiences as a professional carer of people withdementia and set individual goals for the following months.
The workshop is conducted in either English or French.
Those trained include volunteers and healthcare workers
at community organisations, non-profit associations,long-term care facilities, adult day centres, hospitals andtraining conferences. So far, more than 500 individuals
have been trained through the project across three
Canadian provinces and it now forms part of the Society’s
Core Training Program for Health Care Professionals.

Sort Me Out
Singapore
Recognising the potential reach of targeting the generalpublic through social media, Alzheimer’s Disease
Association (ADA) Singapore and advertising agency
Grey Singapore developed and launched Sort Me Out,an innovative application for social networking service
Facebook, in December 2011. The viral campaign aimed
to re-create the experience of memory loss in Facebookusers by encouraging them to install the application
which would then connect with their account andsimulate the gradual erasing of their content, including
friends, pictures and videos. The application reached atotal of 77 countries as well as bringing more visitors to
ADA’s website.

Alzheimer Experience
Ecuador
The Alzheimer Experience campaign took place
in a number of supermarkets in Ecuador on World
Alzheimer’s Day 2011. On the morning of 21 September,supermarket staff re-arranged the stores’ stock, resulting
in shoppers not being able to find what they werelooking for before being informed at the cash registerthat they were part of an activity that aimed to provoke
the feelings people with dementia may experience in asupermarket 10. They were also invited to give a donation
to the cause. This activity, coordinated by Fundación
Alzheimer Ecuador, reached thousands of individuals andall funds raised on the day were channelled back into thework of the Fundación.

Alzheimer Experience
Netherlands
In May 2011, Dutch film company Submarine, supported
by Alzheimer Nederland, launched Alzheimer Experienceto address the misunderstanding, frustration anddifficulty in communication experienced between aperson with dementia and a carer. The educational
programme aimed to close the gap between the personwith dementia and carer’s perceptions of the world byoffering free, interactive, web-based films following the
lives of two people with dementia through all stagesof the disease. The 22 scenes that make up the twohours of film include a choice of perspectives generated
from evidence-based experiences and scene-specificinformation about dementia.
By March 2012, the Alzheimer Experience website hadreceived 166,621 visits with an average of 7.59 minutes
spent on the site. Ninety-four percent of visitors to thesite were informal and professional carers. Discussion
is now underway about disseminating the programmeinternationally.
http://www.alzheimerexperience.nl/

UK ‘Living Well’ campaign
The UK campaign ‘I have dementia, I also havea life’ demonstrated a targeted approach todispelling fears. Targeting a 40 to 60-year-old
predominantly female audience, the campaign –which used television, radio, online and print media– featured people with dementia. The advertising,which aimed to raise levels of understanding, wasdeveloped as a result of qualitative research. The
research, which was conducted with people who
had little or no experience of dementia, showed
what was behind the stigma. It showed greatfear of dementia – fear of getting the condition
and fear of engaging with people with dementia.
The advertising campaign therefore sought to‘normalise’ dementia rather than to ‘medicalise’ it,since the latter could lead to increased fear.

overcoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

Outreach programmes
Recognising the importance of raising awarenessamong communities of all sizes, Alzheimer
associations are conducting outreach programmes
utilising buses and vans as a means of disseminating
information to the public and signposting to local
services.

InfoMobil
Switzerland

Dementia Community RoadshowUKIn partnership with retailer Tesco, Alzheimer’s Society(England, Wales and Northern Ireland) and Alzheimer
Scotland launched the Dementia Community Roadshow
in June 2011. The Roadshow, which aims to reach
100,000 people over a three-year period with threevehicles, stops at Tesco supermarket car parks aroundthe country with voluntary staff from Alzheimer’s Society
and Alzheimer Scotland providing information, advice
and signposting to local services. Members of the public
can also request the Roadshow at their nearest Tesco
car park via an online form on the campaign’s website.
http://www.alzheimers-tesco.org.uk/dementiacommunity-roadshow

Memory Van
Australia

Association Alzheimer Suisse, the national Alzheimer
association in Switzerland, conducted a pilot campaign,
InfoMobil, in Bern in March 2009. The InfoMobil is aconverted caravan containing information handouts,
flyers and brochures on a range of dementia-related
topics. The project aimed to increase public awarenessand break the taboo surrounding dementia.
In May 2010, the campaign was taken further, visiting
12 locations in 26 days following arrangements withsupermarkets, hospitals and local communities. The
InfoMobil was manned by volunteers recruited fromnursing homes, outpatient care, organisations for theelderly, the Red Cross and respite services. As a result of
the campaign, which continued throughout 2011 and into
2012, the association has seen an increase in donations,
volunteer recruitment, and demand for cantonal services
and requests for presentations to be given to healthcare
or charitable organisations.

Alzheimer’s Australia WA (Western Australia) and NSW(New South Wales) both provide a Memory Van service,offering members of the public the opportunity to takepart in a Brain Fitness computer training programme aswell as providing useful information and literature about
dementia. Both vans can be booked for events andfree memory tests are also available in the WA van. The
Alzheimer’s Australia WA Memory Van receives morethan AU$1.5 million under their programme for statespecific activities, including the operation of the Memory
Van and the Dementia and Memory Community Centre.
http://www.fightdementia.org.au/services/communityawareness.aspx
http://www.fightdementia.org.au/western-australia/forthe-community-7.aspx

Muistibussi
FinlandMemory Bus
ScotlandAlzheimer Scotland’s first Memory Bus was unveiledin February 2011. The purpose of the bus is to provide
information and advice to people with dementia and theircarers as well as raising awareness among communities
both in remote, rural communities and towns and cities 11.
The bus travelled extensively throughout Scotland
between May and September 2011, stopping at shopping
centres, car parks, village halls, farmers’ markets andhigh streets to disseminate information.

The national Alzheimer association for Finland,
Muistilliito ry, organised a Muistibussi (Memory Bus) totour the north of the country around World Alzheimer’s
Day in September 2009 and in 2011. The purpose of the
project was to provide information to those living in ruralcommunities with the bus stopping at various public carparks across the region. Staff were available on the bus
to offer advice and information.

61

62

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Promoting earlier diagnosis
Chapter 1 highlights the role that stigma plays inpreventing people with dementia and their carers
from acknowledging symptoms they, or a friend or
family member, may be experiencing. This delays
the help-seeking stage that provides them with
important treatment and support. Earlier diagnosis
enables earlier understanding and better support
for people with dementia and carers, helping tokeep them included in society and enhancing their
quality of life 12. Having a diagnosis also gives people
with dementia the opportunity to speak about theirexperiences and advocate for themselves.
Alzheimer associations in high income countries,
where support services are more readily available,
have conducted nationwide campaigns to combat
stigma by promoting the benefits of earlier
diagnosis.

Brain TourThe Alzheimer’s Association (US) has aninteractive Brain Tour on its website that provides
a straightforward explanation of how the brain
works and how Alzheimer’s affects it, in 15
languages. It is one of the most popular pages
on the Association’s website. The Brain Tour is a
16-slide presentation that destroys the myth that
Alzheimer’s is normal ageing. The Brain Tour isalso available on CD-ROM in English.
http://www.alz.org/braintour

Let’s Face It
CanadaThe Alzheimer Society of Canada conducted an online
survey in 2011 to determine how long after experiencing
the symptoms of dementia people waited before seeking
medical advice. The survey was completed by 958
carers of whom almost half had waited a year before
visiting their doctor and 16% had postponed seeking
help for two years. Three quarters of those surveyed had
wished that they had received an earlier diagnosis. The
campaign, Let’s Face It, encouraged greater recognitionof the warning signs of dementia and sought to reduce
the associated stigma in order for people with dementia
to receive support and treatment sooner in the disease
process.
http://alzheimerletsfaceit.ca/

Know The 10 Signs: Early Detection Matters
USA
In 2008, the Alzheimer’s Association introduced its ‘Know
the 10 Signs: Early Detection Matters’ campaign, aiming toincrease awareness of the 10 Warning Signs of Alzheimer’s
and promote the benefits of early detection and diagnosis.
The campaign launched with a stream of news media
coverage focussed on the message ‘Know the 10 Signs’
being broadcast over a period of two months.
An Alzheimer’s Early Detection Alliance (AEDA) was
formed and more than 1,400 companies have since joined
the Alliance, ensuring their employees are better educatedabout the 10 Warning Signs.
The campaign was funded by a prize of $1.5 million fromthe 2008 Members Project from American Express after
receiving more than 24,000 votes from American Express
card members 13. The 10 Warning Signs continue to be
used widely through the world and for various training
programmes within the USA.
The Association works closely with people living withdementia who are willing to speak out about theirexperiences and the value of early detection.

Reducing stigma in IranA major step towards reducing stigma in Iran
has been taken following successful awarenessraising activities and support groups run by Iran
Alzheimer Association. The association’s day
care centre has become the focus of a number of
television documentaries highlighting the activities
and routines of people with dementia who attend.
While, in the past, family carers have only granted
authorisation for people with dementia to be filmedor photographed from behind or with their hands
and faces blurred, families are now increasingly
willing for their loved ones to be shown actively
participating at the centre. Family carers arealso more open to sharing their experiences aspart of the documents, which are a useful tool incontinuing to de-stigmatise dementia in Iran.

http://www.alz.org/alzheimers_disease_know_the_10_
signs.asp

Worried about your memory?
UKThe Alzheimer’s Society (UK) launched their Worried
about your memory? campaign in May 2008 to raiseawareness of the early signs of dementia and encourage
those who were concerned to visit their doctor. A rangeof materials were made available for order with packs
being sent to more than 9000 GP surgeries in England,
Wales and Northern Ireland periodically over 12 months.
Campaign packs included a CD-ROM to support doctors
in the diagnosis process as well as leaflets, branded leaflet
dispensers and posters for display. An additional booklet
with further information was also made available to orderwith translated versions in ten languages and audiotape
and Braille alternatives 14.

overcoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

Art and physical activity anddementia
Involvement in art and physical activity provides
an opportunity for people with dementia and theircarers to reconnect with their communities with theadditional benefit of showcasing the ability of people
with dementia to still partake in such activities as thedisease progresses. Physical activity programmes
for other community groups that aim to raiseawareness of dementia have also proven to be very
effective.

World Alzheimer’s Day Basketball Challenge
and Interschool Sports Festival
PakistanAlzheimer’s Pakistan organised two sporting events toraise awareness of dementia. The World Alzheimer’s Day
Basketball Challenge, organised in collaboration with the
Lahore Basketball Association, saw young players fromthe Lahore District Basketball Team take on the Don
Bosco Club Team. The activity was a great success andgained national media coverage for the cause.
An Interschool Sports Festival was held in September
2011, bringing together children from a number ofschools to participate in activities while learning more
about dementia and how communities can help toprovide services and support for people with dementia
and their families.

A Chorus for Older Adults
USA
A Chorus for Older Adults with Alzheimer’s disease
and their family members was developed in New York,USA, to investigate the therapeutic qualities of music forpeople with dementia and their families. The project, led
by Dr Mary Mittelman from the NYU Langone Medical
Center, aimed to improve the quality of life of people withdementia and their carers by bringing them together withothers to form a chorus.

On World Alzheimer’s Day, 21 September each year, ahost of awareness-raising events take place across theworld, including Memory Walks, educational seminars
and information stands in public spaces. In 2011,

Memory Walk
Memory Walk® was started by the Alzheimer’s
Association (US) in 1989, and in a few years
became its primary fundraising event. Startingin 1999, ADI promoted the spread of Memory
Walk around the world, with the support of the
Alzheimer’s Association. The first national Memory
Walk in the UK was held in 2003 and many
associations around the world now hold Walksannually for World Alzheimer’s Day.
Memory Walk is an organised walk whereparticipants walk a planned route and aresponsored to do so. As well as fundraising, thepublic walks help to generate awareness – often
branded clothing, stickers and posters are used.
In some countries, the walks have no direct
fundraising element, but are successfully used toraise awareness both among the public that theycome into contact with and additional in the news
media.

The project began in June 2011 with 11 people withdementia and their accompanying family members who
found out about the program through support groups,
the New York City chapter of the Alzheimer’s Association,
the Meet Me at MoMA programme (see below), and the
NYU Alzheimer’s Disease Center. The chorus named
themselves The Unforgettables and rehearsed for 13
weeks before their first concert at St. Peter’s Church in
Manhattan, New York. The concert was well-attended by
the choir’s family and friends as well as members of thecommunity, and received local and national news media
coverage both online and on television.
Although the pilot project has now concluded, the chorus
continue to meet, rehearse and perform in concerts –they just had their fourth concert – and now contributeto the cost of the project. The activity has proven very
effective in not only providing pleasure and improving
the quality of life of the people with dementia and carers
involved, but also assisting in educating the wider
community about the potential of taking part in enjoyable
activities with people with dementia.
http://aging.med.nyu.edu/research/chorus

Museum visits for people with dementia
USA, Israel and France
The Museum of Modern Art (MoMA) in New York,USA, launched their Meet Me at MoMA museum tours
programme in 2006. The tours, which include groups
consisting of approximately 8 people with dementia
and their carers, take place once a month on a Tuesday
when the museum is closed to other visitors. Each tour
lasts around 90 minutes, taking in and discussing fouror five pieces of artwork, and is specifically for those in
the early stages of dementia. Educators at the museum

63

64

Alzheimer’s Disease International: World Alzheimer ReporT 2012

receive training from local chapters of the Alzheimer’s
Association as well as internal training to continually
improve the visitor experience.
The programme has shown clear evidence of a rangeof benefits for both the person with dementia andcarer 15, including improved social engagement withmany participants expressing a desire to extend theirvisit to incorporate more social interaction with others.
Participants reported the pleasure of being able to be in aplace where they didn’t have to worry about stigma. One
person with dementia commented that at the museum,he felt like a person again.
Due to the success of the programme, MoMA’s
educators have conducted training workshops for staff
in more than 50 museums across the USA. A guide formuseums and care organisations wishing to host similar
programmes has also be created.
In response to the introduction of the French National
plan for Alzheimer and related diseases 2008-2012, theMayor of Nice and the Centre of Memory Resources
and Research organised a number of museum visits
for people with dementia and their families as a formof art therapy through which their quality of life could
in improved and they would feel more engaged in theirsociety 16. The project completed a very successful pilot
including tours in five museums and, in 2011, 30 tours in
10 venues took place. Additional art-based activities havenow been introduced, including percussion workshops
and, most recently in June 2012, an innovative activity toencourage the use of the senses in people with dementia
through heritage in food, song and tradition 17.
Inspired by the work in New York, the Alzheimer’s
Association of Israel now host their own museum
tours. The tours currently take place in six museums in
Israel and people with dementia and their families arewelcome to join. The programme operates through day
care centres and other services used by people withdementia.
http://www.moma.org/meetme/

800 kites fly over Monaco
On World Alzheimer’s Day 2011, Monaco’s Alzheimer
association Monegasque Association for Researchon Alzheimer’s Disease (AMPA) coordinated theflying of 800 kites over a 70km expanse of the Côted’Azur. In preparation for the event, and to encourageintergenerational activity, AMPA worked with schools to
conduct paint workshops, allowing children and people
with dementia to work together to design their kites. A
key aim of the event was to reduce stigma by showcasing
the ability of people with dementia to continue to live an
active life after diagnosis 18.

Nationwide Caravan to train Ninchishō (Dementia) Supporters, Japan
In Japan, the word for dementia, Chihō, had been in use for a long period of time. However, the word has beenaccused of carrying contemptuous connotations, as Chi indicates stupidity and hō means idiocy. In 2004, theJapanese government changed the administrative term for the word dementia from Chihō to Ninchishō, meaning
cognitive disorder.
After the change, the government launched a nationwide campaign, Ten years to understand dementia and tobuild community networks, to raise public awareness and understanding of dementia.
At the heart of this campaign is the Nationwide Caravan to train Ninchishō (Dementia) Supporters programme.
This programme provides specialised seminars for the public held at schools and offices and for community
groups across the country. The purpose of the seminar is to encourage individuals not to devote their whole life tocaring for a person with dementia as this is believed to be unrealistic.
By the end of the seminar attendees are expected to have a good understanding of dementia, freeing themselvesfrom any prejudice they may have, and to become supporters and advocates for those living with dementia in theireveryday lives. Those who attend the seminars become Ninchishō (Dementia) Supporters.
Lecturers of the seminar must complete a six-hour training workshop to develop their knowledge enough to beable to deliver the seminar’s content.
During the 90-minute Ninchishō Supporter seminar, attendees learn about the disease itself, how it affects
the lives of those living with dementia and what they should know in order to effectively support people withdementia. Standard text and video materials are used nationwide for the seminars, with variations according to
the attendee groups (for example, schoolchildren).
The seminar covers seven key areas including recognition of the symptoms of dementia, diagnosis and treatment,
the role of each health care professional, prevention, attitudes towards people with dementia, and understandingof the caregiver experience. Over 3.3 million people in Japan had attended this seminar as of March 2012.

overcoming the stigma of dementia · Chapter 3: Examples of programmes to reduce dementia

Summary

References

This chapter has presented some of the efforts toaddress the challenges that stigma presents. Other
campaigns and activities exist in all parts of the world.
These activities can have an impact on the community,
regardless of their size. A small community eventor ongoing support service can lead to heightenedawareness of the issues.

1

Georges, Jean. Giving a voice to people with dementia. Dementia in
Europe: The Alzheimer Europe Magazine. June, 2012, Issue 11.

2

Alzheimer’s Disease International. ADI international conference
breaks new ground in Japan. Global Perspective December 2004.
[Online] December 2004. http://www.alz.co.uk/adi/pdf/gp200412.pdf.

3International Longevity Center Japan. Report from Japan: People
with Dementia Begin to Share Their Experiences and Appeal toSociety. Japan Now. [Online] April 2007. [Cited: 6 August 2012.]
http://longevity.ilcjapan.org/t_stories/0704.html.

It is essential that people with dementia themselves
are not overlooked. Their interests and needs, alongwith those of family carers, belong at the heart of every
campaign. We have seen how successful the growing
networks of people with dementia are, and the difference
that their willingness to speak about their experiences
can make.

4

Alzheimer’s Society. Sharing the Alzheimer’s disease experience.
Living with dementia magazine. [Online] April 2012. [Cited: 6
August 2012.] http://alzheimers.org.uk/site/scripts/documents_info.
php?documentID=1844.

5

Innovations in Dementia and The Alzheimer Society of Ireland.
Report on Creating Dementia Friendly Communities. 2012.

6

Alzheimer’s/Dementia Expert Panel For San Francisco Departmentof Aging and Adult Services. 2020 Foresight: San Francisco’s
Strategy For Excellence In Dementia Care. [Online] December 2009.
[Cited: 6 August 2012.] http://www.ucsf.edu/media/pdf/stories/
Dementia_Strategy_1.pdf.

7

Lee, Sung Hee. Korea’s “War on Dementia” [Presentation]. ADI
website. [Online] March 2011. http://www.alz.co.uk/sites/default/
files/plans/Korea-war-on-dementia.pdf.

8Alzheimer’s Australia NSW. Building Dementia and Age-Friendly
Neighbourhoods. North Ryde, NSW : Alzheimer’s Australia NSW,
2011. http://www.fightdementia.org.au/common/files/NSW/
DementiaFriendlyNeighbourhoodsWebVersion.pdf.

9Guerschanik, Laura and Morrow, Dayna. “Memory Footprints”: AnInteractive Workshop [Presentation]. ADI website. [Online] March
2011. [Cited: 6 August 2012.] http://www.alz.co.uk/sites/default/files/
conf2011/2847-dayna-morrow-memorys-footprints-fighting-stigmathrough-empathy.ppt.

The creation of dementia-friendly communities presents
a huge challenge for any country, but it is encouraging
to note that governments are increasingly eager towork with national Alzheimer associations and othercommunity groups towards the development andimplementation of such schemes. The World HealthOrganization, with their Age Friendly Cities andCommunities initiative, is ideally placed to call for morecountries across the world to commit to this challenge.
However, although the initiative addresses many issues
and makes recommendations that are beneficial to older
people in general, there is a need for further inclusion ofpeople with dementia and their carers.
There is also a need for more awareness-raisingprogrammes – and the resulting stigma-reduction – inlower income countries. This chapter has highlighted
the great ability of national Alzheimer associations
across the world to use the often limited resources
they have available to them to implement a regionalor national campaign to reduce stigma and raiseawareness. However, there is a great need for more
support from governments and collaboration with othernon-governmental organisations, particularly in thedeveloping world, to ensure these projects are developedwith all available resources and ultimately reach theirintended audience.
A number of these projects have shown that change
is possible without the need for additional funding orservices. Existing arrangements can be of great benefit
to people with dementia and their carers if they aresuitably promoted and well-maintained.
A great deal of easily-transferable information alreadyexists in this area and the key now is not only further
implementation, but the sharing and transfer ofknowledge across regions and countries.

10 Maruri Grey Guayaquil and Alzheimer Foundation Ecuador.
Alzheimer Experience. PR Lions | Winners & Shortlists | Cannes
Lions International Festival of Creativity. [Online] [Cited: 6
August 2012.] http://www.canneslions.com/work/2012/pr/entry.
cfm?entryid=14839&award=4.
11 Alzheimer Scotland. Alzheimer Scotland launches its first Memory
Bus. Alzheimer Scotland website. [Online] 24 February 2011. [Cited:
20 August 2012.] http://dementiascotland.org/news/2011/alzheimerscotland-launches-its-first-memory-bus/.
12 Prince, M, Bryce, R and Ferri, C. World Alzheimer Report 2011.
London : Alzheimer’s Disease International, 2011.
13 Alzheimer’s Association. “Alzheimer’s Disease: Early Detection
Matters” Project Receives Most Votes In Members Project From
American Express. Alzheimer’s Association press release. [Online]
14 October 2008. [Cited: 6 August 2012.] http://www.alz.org/national/
documents/release_101408_amexprojectwin.pdf.
14 Alzheimer’s Society. What is the ‘Worried about your memory?’
campaign? Alzheimer’s Society website. [Online] [Cited: 6 August
2012.] http://alzheimers.org.uk/site/scripts/documents_info.php?doc
umentID=879&pageNumber=2.
15 Mittelman, Mary and Epstein, Cynthia. Meet Me at MoMA. [Online]
November 2009. [Cited: 6 August 2012.] http://www.moma.org/docs/
meetme/Resources_NYU_Evaluation.pdf.
16 Métropole Nice Côte d’Azur. Vernissage de l’exposition de Cathy
Greenblat: « A Nice, le musées nous accueillent… ». [Online] 16
September 2010. [Cited: 6 August 2012.] http://presse.nice.fr/
document/07092010-CP-Exposition-Alzheimer-Cathy-Greenblat.
doc.
17 Press Agence Cote D’Azur. Atelier saveurs du cours Saleya
Dans le cadre du projet CALMAN. Culture, Art, Loisirs pour les
Malades d’Alzheimer à Nice. Press Agence Cote D’Azur. [Online]
11 June 2012. [Cited: 6 August 2012.] http://presseagence.com/
lettre-economique-politique-paca/2012/06/11/nice-ateliersaveurs-du-cours-saleya-dans-le-cadre-du-projet-calman-cultureart-loisirs-pour-les-malades-dalzheimer-a-nice-jeudi-14-juin2012-a-14-heures/.
18 Williams, K; Palermiti, F; Ravera, C; Pastor, C; Migliasso, P and
Pesce, A. A unique partnership for an artistic and intergenerational
project involving people with dementia: 800 kites fly over Monaco
and the French Riviera on World Alzheimer’s Day [Presentation]. ADI
website. [Online] March 2012. http://www.alz.co.uk/sites/default/
files/conf2012/oc111.ppt.

65

66

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Stigma: a personal view
Nori Graham
In so many countries, to be old is shameful; to be mentally ill as well as old isdoubly shameful. In so many countries, people with elderly relatives who arealso mentally ill are ashamed and try to hide what they see as a disgrace on thefamily. That is what I mean by stigma. My career in the public and voluntary
sectors has been dedicated to make a difference to older people with mental
illness, especially dementia, and their carers so as to reduce and hopefully
remove such stigma completely.
In the late 1970s I started my professional life as an old age psychiatrist. There
were already a very few role models, such as my first consultant, Professor Tom
Arie, who had demonstrated how much there was to do and how, with grit anddetermination, one could make a change. There was no competition for jobs
as no one wanted to work with older people with depression and dementia.
They were stigmatised. After all, it was accepted belief that there was nothing
one could do to cure or even alleviate what was then seen as an inevitableaccompaniment of the ageing process.
Around this time, excellent epidemiological research identified the prevalenceof depression and dementia both in the community and institutions. Thesestudies made the case for seeing them both as distinct illnesses experienced byonly a small percentage of the elderly population. Clearly neither depression
nor dementia were inevitable accompaniments of growing old. Further, it waspossible to diagnose, treat and offer supportive care to all those affected. I was
appointed to set up a new service for older people with mental illness. It wasan exciting challenge to start up a service from scratch. I worked out what wasneeded and asked for a little at a time until I built up a comprehensive multidisciplinary community orientated service for older people with the full rangeof mental illnesses. As with everything else described in this article, there weremany others who contributed to the achievements that were obtained.
It took patience and close collaboration with everyone concerned, but inparticular the patients, their families, the family practitioners, the other healthprofessionals of all disciplines, academics and managers. They all needed
convincing; the attitudes of many of them were fashioned by the stigma thatthen clouded work with the elderly mentally ill. The service grew slowly but
eventually achieved an international reputation both for the quality of its
clinical work and for its research programmes.

Dr Nori Graham is an
Honorary Vice President of
ADI and a Vice President of the
Alzheimer’s Society (England),and was previously chair ofeach organisation. She is an
Honorary Fellow of the Royal
College of Psychiatrists andEmeritus Consultant in thePsychiatry of Old Age at the RoyalFree Hospital. In 1996, she wasawarded an honorary doctorate
for public services by the Open
University.

Our acute beds were in the teaching hospital alongside medicine, surgery andpaediatrics. That really helped to remove the stigma. Our longer stay and respite
beds for people with dementia were in a lovely small hospital surrounded bygardens in the middle of Hampstead Health – a well-known beauty spot. The
service was opened by the Prince of Wales – a great antidote to stigma there.
Families were proud to visit their relatives in such a setting. We assessed all
new patients in their own homes at the request of the family practitioners andmost people were treated and followed up at home and never needed to comeinto a hospital. We never had a waiting list. The moment a referral was madean arrangement to visit was made. This service was provided by the National
Health Service with no private payments involved. It was available to everyone
and even the most privileged members of the community took advantage of it;
everyone was treated equally.
I am in no doubt that to reduce stigma it is vital that quality treatment and caretake place in quality environments – places any of us or our families would
be proud to be treated in ourselves. Quality services such as these need to
be sensitive and specific to an area’s needs. But given the motivation and theresources they can be developed in any part of any country in the world.

67

overcoming the stigma of dementia

I was then privileged to become Chairman of the national Alzheimer’s Society
here in the UK. In the reduction of stigma, it is vital that people with dementia
and their families are supported and, in addition, empowered to speak in public
for themselves. I see this as the power of an Alzheimer society. During mychairmanship, the Society contributed to a quantum leap in awareness about
dementia by providing a mechanism through which carers could articulate theirneeds and provide guidance to others. The backbones of an Alzheimer society
are the self help groups which share the aim of improving quality of life for bothpeople with dementia and their families. Our success was, I think, largely due tothe fact that we defined our core services tightly, making the dissemination of
information our first priority. The involvement of people with business, political,
academic and professional backgrounds and not just doctors was and remains
key. From a small beginning, the Alzheimer’s Society has become one of the best
known and most highly respected charities in the UK. The development of a
National Dementia Strategy and the recent commitment of our Prime Ministerto make the UK the world leader in dementia care and research has taken us
many steps further on the path to de-stigmatise dementia. The Alzheimer’sSociety aim to create ‘dementia friendly communities’ in which people with thiscondition are positively included into daily life is a natural progression in theenhancement of people’s understanding of dementia.
As a former chairman of Alzheimer’s Disease International (ADI), the umbrellaorganisation for currently 78 national Alzheimer associations, I have beendelighted to see the progress made by countries in the less economicallydeveloped world where the problem of dementia is growing rapidly as every
country starts to have an increasingly ageing population. The recent WHO
report written together with ADI this year will help national Alzheimer
associations worldwide to reduce stigma. The WHO Report together with otherrecent reports by ADI would not have been possible without the outstanding
epidemiological research carried out by Professor Martin Prince in the UK
and an international team of colleagues. They have studied the prevalence of
dementia and caring arrangements in many different parts of the developingworld. Without such information governments would have no data about
numbers and needs for services. With this information, policy makers begin tounderstand dementia is a disease of the brain that, like all other diseases, has tobe recognised, diagnosed and managed as effectively as possible.
So stigma can be reduced in two significant ways. First, high quality effective
services for the diagnosis and management of people with dementia and othermental illness and their carers need to be set up. Second, national Alzheimer
associations need to be established and maintained to raise awareness,
put pressure on governments to achieve policy changes, provide quality
information, bring people with dementia and their families together to talk andshare problems, and encourage well-known people with dementia and theirfamilies to go public to show that they, at least, are not afraid or ashamed.
None of these changes takes place overnight. Every country needs an action
plan with close collaboration between government, professionals and the public
to achieve, maintain and monitor change. Only then will people with dementia
and their families receive the help and support they need and deserve and only
then will the shame that results in stigma be finally eradicated n68

Alzheimer’s Disease International: World Alzheimer ReporT 2012

What can we learn from thedisability movement?
Peter Mittler
I want to suggest that the dementia world should join forces with the disability
rights movement - locally, nationally and internationally.
Ask yourself:
What do you know about the disability movement in your country? Do
organisations for different groups of disabilities work together to lobby
governments to achieve change?
Do people with dementia in your country benefit from legislation and policies
for other disabled people?
Have people with dementia and their care partners in your country consideredmaking common cause with people with other disabilities? Or is dementia
somehow not regarded as a disability because it is associated with old age?
How closely does your national Alzheimer’s society work with other disability
organisations? If so, is the voice of people with dementia being heard?
Did you know that people with dementia are included in the remit of the 2008
United Nations Convention on the Rights of Persons with Disabilities? The
117 governments that have ratified the Convention so far are accountable ininternational law not only to the UN but to their own citizens. Has your country
ratified it? If so, are people with dementia included in its implementation? Arethey and their care partners benefiting?
What does the disability movement have to offer?
The disability movement was launched by people with mobility impairments
but has now broadened to include many others with a wide range of physical,
sensory, mental health and intellectual impairments. Working locally, nationallyand internationally, it has successfully campaigned for basic human rights
and participation in society, as well as access to buildings, public transport,
health care, education, employment, recreation and leisure. Furthermore, it has
consistently opposed all forms of discrimination and segregation, including
institutions, isolation in the community, poor quality care and degrading
terminology and practices. Above all, it has insisted on the right of disabled
people to be heard: Nothing About Us Without Us has been its watchword;
people with dementia and their care partners should find it useful too.
Many years ago, people with intellectual disabilities were not considered able
to speak for themselves. From the 1950s, parents began to form local, national
and international associations to campaign for recognition for themselves andtheir children. Many of them were very successful in influencing governments
to develop services and supports. But as time went on, their sons and daughtersbegan to form parallel self-advocacy associations of their own. Many were
elected or appointed to decision-making bodies, including the UN committeethat spent five years negotiating and drafting the UN Convention.
Thinking globallyPeter Mittler is Emeritus Professorof Special Needs Education at
the University of Manchester,
England, former President of
Inclusion International and a
UN consultant on disability andeducation.

Once the Convention was adopted by the UN, the needs of disabled people
received more priority. All the UN agencies pressed national governments totake action and to make sure that disabled people were included in UN andWorld Bank development projects and funding. This has now been followed by
the excellent global report on dementia prepared by WHO in partnership with
Alzheimer’s Disease International, shortly after WHO published a separate
global report on disability. The whole UN system is currently under pressure to
give much higher priority to dementia as a global challenge.

69

overcoming the stigma of dementia

Most of the articles of the Convention are directly relevant to people withdementia. These include: respect for privacy, home and family, adequate
standards of living and social protection, supported decision-making, accessto justice and equality before the law, freedom from exploitation, violence andabuse.
Health warning
UN reports and supports are invaluable but only if they lead to a better qualityof life and services for people with dementia at national, local and community
levels. Many years of working with the UN have taught me that there is a huge
gap between rhetoric and reality where people with disabilities are concerned
and that the needs of some groups are at risk of being overlooked, particularly
those with intellectual and mental health impairments. People with dementia
and their advocates will need to be exceptionally vigilant and proactive inensuring that their voice is heard and heeded.
The good news is that implementation and action at national and local level aremuch more likely if pressure for change comes from civil society — that means
all of us working in partnership. We can make a start by making sure thatpeople with dementia are included in national and local plans to implement the
UN Convention n

70

Alzheimer’s Disease International: World Alzheimer ReporT 2012

My career withstigma and dementia
Myrra Vernooij-Dassen
As a medical sociologist and a curious person, thirty years ago I wanted to do
scientific research. I was happy to be invited to perform a study on day care fordementia patients. However, I was also a little bit afraid to be confronted withthe problems of dementia patients and their families. I did not feel particularly
attracted to dementia problems; in fact, I preferred to avoid them. Being young
and taking care of my little daughters, it was easy to live in another world.
I started with little knowledge of dementia and shared some common views
about it. At that time, people with dementia were considered not to be awareof their disease. This was a comforting thought. I was unhappy with the firstcolleague who told me that people with dementia were aware of their problems
and condition. However, knowing this opened the door to new approaches. I
decided I had a lot to learn about dementia and the best way to do this was totalk with people with dementia and their families. It took some courage, but
I left my desk and did many interviews. I was lucky that my fellow researcher,Anneke van der Plaats, was a medical doctor working in a day care centre. She
liked to share her daily care experience and we took the time to look at thedifference between practice and theory. Our favourite theoretical models were
the family crisis and family support models of Bengtson and Kuypers. These
discussions shaped my life as a researcher. I become fascinated by studying thesecrets of life as expressed in the confrontation with dementia. How can people
deal with such a disease? What can we learn from them and how can we supportthem? After many discussions we decided to translate Bengtson and Kuypers’
family crisis model into the sense of competence questionnaire, and the family
support model into an intervention to be tested in a randomised controlled trial.
Research focused on problems. You get what you ask for when you use
questionnaires. You don’t get answers to questions that you don’t ask. By asking
different questions, we confirmed the stigma that life with dementia is nothingother than a big problem that should be avoided or solved. Many colleagues who
are trying to find a cure for dementia still have this opinion. Some campaigns
by Alzheimer societies also portray dementia as a disaster. They focus so muchon raising attention for the dementia problem that they overlook the fact thatthey are frightening people and increasing stigma instead of reducing it. Thisfrightens the public and deprives people dealing with the disease of hope.
Prof Myrra Vernooij-Dassen(PhD) is principal investigator in
the Nijmegen Centre for Evidence
Based Practice and director of
Nijmegen Alzheimer Centre in
the Netherlands. She has a chairon psychosocial aspects of carefor frail elderly people. She istrained in sociology and researchmethodology and has performeda large body of research on qualityof care. She is chair of Interdem,
a pan-European researchgroup on detection and timely
INTERvention in DEMentia andis honorary visiting professor of
the School of Health of Bradford
University.

My ‘stigma career’ got a new impulse. One morning a woman unknown to me
came to my room at the university and asked whether I wanted to analyse thediary she was writing about her sister who had been diagnosed with dementia.
This diary opened my eyes to how life could continue despite the disease. The
patient enjoyed having dinner with her sister and visiting historic places. There
were severe problems, but there also was pleasure. The stigma that persons
with dementia had no capacity for pleasure was challenged. Again my view on
dementia changed. I became less frightened. And this was at the right time.
My mother-in law’s behaviour profoundly changed. The family was confusedand did not know what to do. My husband told me that I was now the expert.
OK. I looked at my thesis and decided that we should do what my theoreticalmodel recommended: get a diagnosis and find someone who can communicate
the diagnosis and its consequences. The very skilful psychologist knew how todeal with a family disagreeing about what was happening. He also knew how
to communicate with my mother-in-law. He respected her and strengthened
her dignity, while being quite clear about the situation. He helped her to accept
the situation and to hand over her tasks. This worked very well. It was a goodstart to three years of living with dementia. We had a good life, with her and my71

overcoming the stigma of dementia

father-in-law enjoying the last years of their shared life. The knowledge gained
from the diary and my own study helped us. I was convinced that it was possible
to have a good life with dementia, if you could find the right approach.
This optimism was precious, because there was more to come. My own mothergot the disease. I knew it was possible to talk about dementia. I did once. She
lamented having the disease and was aware of her deficits. We both cried.
Then she stopped crying and said: time for coffee. That was how I knew her.
During the disease, we treated our mother as our mother and, despite all thedifficulties, she continued to be the lovable mother she always had been, untilthe very end, six years after the diagnosis. We took her everywhere she wanted
to go, we told her friends about it and we were often amazed about how well she
was functioning. And how witty she was. My husband once came back from avisit to the cemetery. He told my mother that he enjoyed the quiet atmosphere.
‘These dead people do not say much,’ replied my mother. We enjoyed being with
her and very much appreciated her efforts to continue being our mother.
In my personal life, I owe a lot to my knowledge of dementia and the powerof what we call psychosocial interventions (for example, talking therapies or
education programmes). Not only the research evidence which underlines theirvalue, but this approach maintained the quality of life of my mother-in-law andher family and my mother and her family. I benefited twice.
My career with stigma started with the idea that dementia patients are unawareof their problems and have no capacity for pleasure. This is not unusual. Even
professionals working with dementia patients can have these ideas. My PhD
student, Dianne Gove, studied general practitioners’ perceptions of dementia,
and their perceptions of the public’s perceptions. Perceptions can be changed.
This is an important task for Alzheimer societies. Within Europe, there are
big differences in openness on dementia. In societies with strong Alzheimer
advocacy, like the Netherlands and UK, more openness about the diseasecan be observed than in other societies. Alzheimer societies must use theknowledge gained to fight the stigma attached to dementia and contribute to theemancipation of people with dementia.
People with dementia are neither fully competent nor incompetent. Stigma
ignores competence and causes harm by delaying diagnosis and ignoring
people’s capacity for pleasure and adaptation n72

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Chapter 4

Conclusions andrecommendations
Conclusions
There are important conclusions to draw
from this Report.
The stigma surrounding Alzheimer’s
disease and other forms of dementia is
an important topic and many people are
impacted by it, as shown in both the survey
and essays.

Statistics
The response to our survey was much larger than
expected, with around 2,500 responses from morethan 50 countries, the largest portion coming fromthe USA. Many respondents not only answered thequantitative questions, but also added nearly 300
narratives to elaborate on and explain their responses.
In addition, there were more than 900 responses to thenarrative questions with personal stories that illustrated
experiences, problems and solutions.
Because the survey method provided only for
respondents who were able to use the internet(or secured someone to help them), this is not
a representative sample. However, it is the firstinternational survey of this size on stigma associated withdementia.
The people with dementia who responded were younger
than average: half of them were younger than 65 years.
Just over half of them reported that they have Alzheimer’s
disease; others have vascular dementia, fronto temporaldementia or Mild Cognitive Impairment (MCI). The age
and above average education level of the respondents
may be a reflection of the fact that this survey was
conducted online.
Most carers who responded are female and most carers
are caring for their parents or in-laws. This is reflectiveof previous research - women bear a large part of theburden of this disease.
More than half of the respondents have some connection
to an Alzheimer organisation or service provider. The
people with dementia were very likely to have received
a diagnosis and were aware of available services. Thus,
the people with dementia and carers who answered oursurvey may be less affected by stigma than those who
the survey did not reach.

overcoming the stigma of dementia · Chapter 4: Conclusions and recommendations

Understanding and impact ofdementia
Nearly two out of three respondents, both people withthe disease and family carers, feel that there is little or nounderstanding of dementia in their countries. However,both groups agree that politicians have a slightly better
understanding of the disease than their constituents.
From the survey, it is clear that some families find it
harder to cope with dementia than others. The sameconclusion can be drawn from a number of the essays,
especially those that were written by people withdementia. Many people are not only affected by thedisease itself, but also by the reaction of family andfriends. There is clearly a need for practical, emotionaland financial support.
By overwhelming margins, both people with dementia
and carers believe that within their country there arenegative associations for those diagnosed. Seventy-five
percent of people with dementia responded that there
was negative association, and 64% of carers agreed
that there were negative associations for people withdementia.
Carers, too, confront social stigma. One in four (24%)
carers reported that carers face negative associations.
People with dementia can be treated well, but it does not
happen to the majority of respondents. Fourty percent ofpeople with dementia who responded to our survey do
not feel that they are being treated differently than people
without dementia. Another 40% reported being treatednegatively, including loss of friends and isolation. One
in four (24%) cited stigma as a reason to conceal theirdiagnosis from others.
The issue of financial support is a problem for manyfamilies, as reported in many of the narratives. This
important issue deserves further investigation to uncover
the sources of the problem, and what can be done about it.
People with dementia make friends with others in thesame situation: 66% of survey respondents who havedementia said that they have made friends who areconnected to dementia, and 47% answered that they
have made friends who are not connected to the disease.
However, many comments in the narratives report current
and former friends have pulled away. Thus, people withdementia in this survey may feel relief from stigma whenamong others in the same situation as themselves.

Stigma and ageing
The stigma of dementia is intertwined with the stigma
of ageing, which is an extra barrier for the diagnosis ofdementia. If the assumption is that everyone will become
cognitively and physically impaired as they get old,people who are not impaired will not want to admit theirage, for fear of being stereotyped as being members of
the stigmatised group.

Learning from other areas
We can learn from other disease areas like HIV/AIDSor cancer that campaigning, lobbying and coalitionbuilding are effective at changing attitudes and driving
governments to act. Professor Peter Mittler, in his
contribution to this report, suggests that the dementia
community should join forces with the disability rights
movement, which has successfully campaigned forbetter recognition of the human rights of people withdisabilities, and increased inclusion in society. ProfessorPeter Piot says that we can be cautiously optimistic,
but emphasises the dedication that is needed to build
effective coalitions to get things done on the scale that isneeded.

Summary
The negative perceptions of individuals and society
regarding dementia may lead to the isolation of people
with dementia and their carers, and also reinforce andextend isolation caused by the effects of the disease.
There is a widespread assumption that people withdementia cannot take part in ordinary activities. There isalso a widely held perception that they have no qualityof life or capacity for pleasure. While the symptoms
associated with dementia affect the way a person withdementia interacts with others, and some activities may
be inappropriate as a result, there are many activities,
sometimes with adjustments to take account of thedisability, in which they can participate. Both people
with dementia and their family members will benefit fromcontinuing, whenever possible, to engage in as many
activities as they can. Moreover, people with dementia
should be encouraged to make decisions or partake indecisions that affect them for as long as possible, tomaintain their dignity and self-esteem.

73

74

Alzheimer’s Disease International: World Alzheimer ReporT 2012

Recommendations
With the number of people with dementia increasing
rapidly worldwide (one new case every four seconds,
more than 36 million people with the disease today
and more than 115 million predicted for the year 2050),
the huge economic impact of the disease (global costof $604 billion in 2010 – 1% of global GDP) and nocure likely in the immediate future, societies need to
put much more effort into effective care and support
initiatives. Otherwise, care for people with dementia
will put an unprecedented burden on health and social
systems.
Stigma could be a major barrier to finding solutions forthe problems related to Alzheimer’s disease and otherdementias, including low rates of diagnosis and service
utilisation. Therefore, it is essential to take action todispel lingering myths about dementia to reduce
stigma. We can learn from the recommendations thatpeople with dementia gave in our survey, including:• Talk to people with dementia and their family carers;
actively engage with them and treat them as equals.
Just like a person with cancer or heart disease, ask
how they are doing; ask about their memory loss,
their preferences for communication, and how you
can help them maintain their current lifestyle.
• Each person with dementia is unique and he or she
will have tips for you on what is helpful. Some will findit helpful for you to be mindful that crowded places
that are loud or distracting and may be difficult forthe person with dementia to have conversations.
Some will ask for help remembering words they
forget, and some prefer you not correct them, butinstead understand the meaning of their message.
• Do not avoid the person with dementia and only talkto the carer. Involve the person in the conversationeven if they are less able to participate actively. They
are still human; ignoring a person can be offensive.
• Be proactive in involving a person with dementia in
activities. Some will need rides to social functions tostay active. Without someone initiating, the personwith dementia and his or her carer may become
isolated. Visit, invite the person out, and create
opportunities for social engagement with otherpeople.

of people with the disease, as well as healthcare
professionals. It is important to leverage public
education.
Dementia has a huge impact on relationships. Bothpeople with the disease and carers lose friends andfeel sad about that. But there are some positive
stories as well. A significant number of people in thesurvey feel well-treated and supported. So it canbe done! Support groups and other services run by
Alzheimer associations and other community-basedorganisations provide an opportunity to meet new
people and make new friends and should be madewidely available.
Give people with dementia a voice and let them speak
about their experiences in public. They have proved to
be powerful spokespeople for Alzheimer associations.
Do not assume that it is not possible in your country.
It is important to consider the abilities of the personwith dementia you are working with, and think throughissues such as transport arrangements for them andwhat time of day may be best for them. For more tips
on involving people with dementia as spokespeople,
visit www.alz.co.uk/worldreport2012
The voices and needs of people in the middle to laterstages of dementia are also important. People inthese stages can communicate in a variety of ways
and are often misunderstood and undervalued; moreeducation and support is needed for both informal andpaid carers and in care home settings.
We recommend that every country develops a national
Alzheimer’s/Dementia plan and, in large countries,
even regional plans. Good examples are available,
as well as support from the WHO, ADI and Alzheimer
Europe.These national Alzheimer’s/Dementia plans
should include initiatives aimed at creating Dementia
Friendly Communities. Important elements include:• Attention to physical environment (clear signage)• Access and consideration for dementia in local
businesses and public services• Development of community based services• Creation of local groups such as such as support
groups and memory cafés involving people withdementia• As one survey respondent said, ‘Treat us as normal
people. We’re still here, just a little slower andsometimes confused’.

• Awareness about dementia through local point of
information and educational programmes

Societies do not have enough understanding about
dementia. This includes the friends and relatives

For more information about Dementia Friendly
Communities visit www.alz.co.uk/worldreport2012

overcoming the stigma of dementia · Chapter 4: Conclusions and recommendations

A world without stigma …
how would it look?
There is an urgent need for better training ofprimary healthcare physicians, who are often
involved in making a diagnosis of dementia andneed appropriate training to do so effectively.
Healthcare providers need to adopt specificdementia care philosophies that support
independence and are centred on the personwith dementia. Community and residential carestaff providing front-line services also require
specific training to ensure services are delivered
appropriately to people with dementia.
Public policy and legal efforts to include people
with disabilities in as many activities as possible
should be extended to people with dementia.
More research should be conducted to determine
the most effective ways to counteract all aspectsof stigma. In addition, new interventions that
include people with dementia together with theirfamily members, that provide pleasure to allparticipants and promote community involvement
should be developed and tested.

If there were no stigma, we mightrecognise people with dementia as being
different, but still make every effort toinclude them as members of society.
Physicians would diagnose everyone
who has the disease and tell themthe diagnosis, prescribe appropriate
treatments, and direct them and theircarers to support groups or otherdementia-related services. Whoeveris responsible in each country – thegovernment, health insurers or healthcare providers – would set up appropriate
services for people with mild, moderateand severe dementia and include them in
end-of-life care programmes. This would
save costs to health systems, as lesspeople with dementia would spend theirtime unnecessarily in hospitals or nursing
homes and more time in the community –for everyone’s benefit.

Ten key recommendations
to overcome the stigma of dementia
1 Educate the public
2 Reduce isolation of people with dementia
3 Give people with dementia a voice
4 Recognise the rights of people with dementia and their carers
5 Involve people with dementia in their local communities
6 Support and educate informal and paid carers
7 Improve the quality of care at home and in care homes
8 Improve dementia training of primary healthcare physicians
9 Call on governments to create national Alzheimer’s disease plans
10 Increase research into how to address stigma

75

Alzheimer’s Disease International
Alzheimer’s Disease International (ADI) is the international federation of Alzheimer
associations throughout the world. Each of our 78 members is a non-profit
Alzheimer association supporting people with dementia and their families.
ADI’s vision is an improved quality of life for people with dementia and theirfamilies throughout the world. ADI aims to build and strengthen Alzheimer
associations and raise awareness about dementia worldwide. Stronger
Alzheimer associations are better able to meet the needs of people withdementia and their carers.

What we do• Support the development and activities of our member associations aroundthe world.
• Encourage the creation of new Alzheimer associations in countries where
there is no organization.
• Bring Alzheimer organizations together to share and learn from each other.
• Raise public and political awareness of dementia.
• Stimulate research into the prevalence and impact of Alzheimer’s disease anddementia around the world.

Key activities• Raising global awareness through World Alzheimer’s Month™ (September
every year).
• Providing Alzheimer associations with training in running a non-profit
organization through our Alzheimer University programme.
• Hosting an international conference where staff and volunteers from Alzheimer
associations meet each other as well as medical and care professionals,
researchers, people with dementia and their carers.
• Disseminating reliable and accurate information through our website andpublications.
• Supporting the 10/66 Dementia Research Group’s work on the prevalence andimpact of dementia in developing countries.
ADI is based in London and is registered as a non-profit organization in the USA.
ADI was founded in 1984 and has been in official relations with the World HealthOrganization since 1996. You can find out more about ADI at www.alz.co.uk.

Alzheimer’s Disease International:
The International Federation of
Alzheimer’s Disease and Related
Disorders Societies, Inc. isincorporated in Illinois, USA, and isa 501(c)(3) not-for-profit organization

Alzheimer’s Disease International
64 Great Suffolk Street
London SE1 0BL
UK
Tel: +44 20 79810880
Fax: +44 20 79282357
www.alz.co.uk