CHICAGO — Seventy-five percent of people worldwide with dementia and 64 percent of caregivers believe there are negative associations for those diagnosed with dementia, according to a survey fielded by Alzheimer’s Disease International and published in the World Alzheimer Report 2012: Overcoming the Stigma of Dementia.
The report was released Sept. 21, Alzheimer’s Action Day, as part of World Alzheimer’s Month activities raising awareness of the disease. It can be found at http://www.alz.org/media_current_news_releases.asp.
In response, Alzheimer’s Association Early-Stage Advisors, men and women from across the U.S. living with the disease, and their caregivers developed tips about how to cope with the stigma surrounding Alzheimer’s based on their personal experiences.
“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, vice president of constituent services at the Alzheimer’s Association. “The misconceptions and stigma create unnecessary barriers to progress, such as improving care and support services and increasing funding for research.”
Nearly one in four people with dementia 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.”
Sixty-six percent of survey respondents who have dementia said 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 the Alzheimer’s Association.
The Alzheimer’s Association recently launched ALZConnected (alzconnected.org), 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.
In response to the report and to honor of World Alzheimer’s Month, the Alzheimer’s Association is unveiling the following tips for coping with stigma:
• 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 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 is the world’s leading voluntary health organization in Alzheimer care, support and research. Its 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. Visit alz.org/illinoiscentral or call (800) 272-3900.
From the Sept. 26-Oct. 2, 2012, issue