The Stigma Attached to Alzheimer’s Disease

Seventy-five (75) percent of people with dementia 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. 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 away.”

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.

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