Alzheimer's Group Has Tips to Cope with Negative
Perceptions of Dementia
World Alzheimer’s Report finds negative perceptions
of people with dementia; Alzheimer’s Association’s has tips for facing
this stigma; it’s World Alzheimer’s Month
Alzheimer's Association National Early-Stage Advisor Myriam Marquez is
advocating for a cure and living life to the fullest.
Sept. 25, 2012 - Seventy-five percent of people
and 64 percent of caregivers believe there are negative associations for
those diagnosed with dementia in their countries, according to survey
fielded by Alzheimer’s Disease International and published today in the
World Alzheimer Report 2012: Overcoming the Stigma of Dementia.
The report was released on
Alzheimer’s Action Day
as part of
Month activities engaging people in the cause and raising
awareness about the disease.
Association Early-Stage Advisors, men and women from across
the U.S. living with the disease, and their caregivers developed tips on
how to cope with the stigma surrounding Alzheimer’s based on their
“The Report reveals that people with dementia and
their care partners often feel disconnected from society, and sometimes
even by their own friends and family members,” said Beth Kallmyer, MSW,
vice president of constituent services at the
Association. “The misconceptions and stigma create
unnecessary barriers to progress such as improving care and support
services and increasing funding for research.”
In the current Report, nearly one in four people
with dementia (24 percent) who responded to the survey said they hid or
concealed their diagnosis, citing stigma as the main reason. They
expressed concerns that their thoughts and opinions would be “discounted
and dismissed,” and that they would be “treated more positively” if they
did not reveal their diagnosis.
The authors noted that social exclusion was a
“major theme” with 40 percent of people with dementia in the survey
reporting they have been avoided or treated differently because of their
dementia. Respondents said their friends and family “say they don’t know
how to behave ‘normally’ around me anymore,” and many have “drifted
A survey respondent with dementia from the U.S.
said: “It’s very interesting to see how people close to me act. It’s
almost as if they are afraid of bringing up the subject. Being a cancer
survivor, I know that I was constantly asked how I was doing while I was
going through treatment. With Alzheimer’s, no one asks.”
The report found that when people with dementia are
able to make new connections, it is often with people in similar
circumstances. Sixty-six (66) percent of survey respondents who have
dementia said that they have made friends who are connected to dementia,
often finding each other through community-based support groups, online
chat or bulletin boards, or through Alzheimer associations.
“People with dementia, especially in the early and
middle stages, can take part in many everyday activities. They have the
same needs as everyone else for social interaction and engagement in
meaningful activities, even in the later stages of the disease. We
encourage people living with Alzheimer’s or another dementia to be
involved in making decisions that affect them for as long as they can,
to help maintain their autonomy, dignity and self-esteem,” Kallmyer
In response to the Report and to honor of
Association is unveiling tips for coping with stigma created
by people living with the disease. Current and former members of the
Alzheimer’s Association National Early-Stage Advisory Group developed
these tips based on their personal experiences:
● Be open and direct. Engage others in
discussions about Alzheimer’s disease and the need for prevention,
better treatment and an eventual cure.
● Communicate the facts. Sharing accurate
information is key to dispelling misconceptions about the disease.
Whether a pamphlet or link to online content, offer information to help
people better understand Alzheimer’s disease.
● Seek support and stay connected. It is
important to stay engaged in meaningful relationships and activities.
Whether family, friends or a support group, a network is critical.
● Don’t be discouraged. Denial of the disease
by others is not reflection of you. If people think that Alzheimer’s
disease is normal aging, see it as an education opportunity.
● Be a part of the solution. Advocate for
yourself and millions of others by speaking out and raising awareness.
The Alzheimer’s Association also recently launched
a social networking community designed specifically for people with
Alzheimer’s disease and caregivers. After becoming a member (at no
cost), ALZConnected users can connect and communicate with people who
understand their challenges, pose questions and offer solutions to
dementia-related issues and create public and private groups organized
around a dedicated topic.
The Report released today includes 10
recommendations to enable governments and societies to tackle stigma,
including encouraging greater public education. Nearly half of the
survey respondents pointed to increasing education and raising awareness
about Alzheimer’s and dementia as a much-needed, high priority action.
Other recommendations are to provide more opportunities for people with
dementia to share their experiences and ensure that they are included in
In addition to the survey results, the World
Alzheimer Report 2012 includes essays by people with dementia, care and
social science researchers, and legislators, and multiple examples of
“best practice” programs from around the world, including:
World Alzheimer’s Month 2012
Month, and the Alzheimer’s Association is encouraging
everyone to “Go Purple.” Visit
to learn ways to “Go Purple,” including:
● Wear purple on Alzheimer’s Action Day,
Friday, Sept. 21. Purple t-shirts, hooded sweatshirts and a
limited-edition CJ Free bracelet benefiting the Alzheimer’s Association
● Turn Facebook purple using an END ALZ graphic
as your profile picture.
To learn more about Alzheimer’s disease and
overcoming stigma, call 1-800-272-3900 or visit
More about the ADI World Alzheimer Report Survey
ADI states, “the World Alzheimer Report 2012: Overcoming the Stigma of
Dementia shares results from a worldwide survey conducted with people
with dementia and [caregivers] on their personal experiences of stigma.”
The anonymous online survey was conducted in June 2012 and completed by
more than 2,500 people with dementia and caregivers from 78 countries.
2,068 responded in English; 519 responded to versions of the survey in
Spanish (282), Greek (94) and Chinese (143).
According to ADI, of the 127 (6%) of respondents
with dementia in the English language survey, most reported that
diagnosis (or discovery of dementia) had occurred within the last five
years (51%). Sixty-one percent (71) of respondents indicated they were
female and 39% (46) male. Diagnoses included Alzheimer’s disease (55%),
vascular dementia (12%), mild cognitive impairment (10%), and fronto-temporal
dementia (7%). The largest group of respondents with dementia indicated
they were between 63 and 72 years of age, with a little over half of the
participants (56%) being at or over age 65. Individuals with dementia
responded from 13 countries including Australia, Canada, Finland, United
Kingdom and the United States, with the U.S. having the most at 55%.
ADI acknowledges that the survey respondents were
not a representative sample noting, “results from the survey indicate
that a majority of participants completed secondary education or above
with nearly 50% of participants in the English, Chinese and Greek
surveys completing college or graduate school. This indicates that
survey respondents are a select group of people with dementia and
informal careers with a mostly high level of education. In addition,
over half of respondents in all four surveys also participate in
programs with Alzheimer’s organizations, societies, support groups or
ADI, an international federation of 78 Alzheimer
associations around the world, including the Alzheimer’s Association
(U.S.), has produced an annual World Alzheimer Report since 2009,
previously covering topics including global dementia prevalence and
global cost of dementia care.
Association is the world’s leading voluntary health
organization in Alzheimer care, support and research. Our mission is to
eliminate Alzheimer’s disease through the advancement of research, to
provide and enhance care and support for all affected, and to reduce the
risk of dementia through the promotion of brain health. Our vision is a
world without Alzheimer’s. Visit
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