21 Sep 2012

Globally, people with dementia still face significant social stigma, leading to feelings of isolation and marginalization. This is the conclusion of the World Alzheimer Report 2012, released today by the umbrella group Alzheimer’s Disease International (ADI). The report, which focused exclusively on stigma, is freely available for download. ADI surveyed about 2,500 dementia patients and caregivers in more than 50 countries, with dementia patients making up less than 10 percent of the total. Of the respondents with dementia, about half had Alzheimer’s disease, and almost half were under the age of 65. Those surveyed reported that stigma remains a major concern. Three-quarters of those with dementia and two-thirds of carers said that other people perceive those with dementia negatively. About 25 percent of dementia patients conceal their diagnosis, and 40 percent said they no longer take part in many activities of everyday life.

ADI’s report emphasizes the importance of better educating the public about dementia and increasing awareness of the disease. Report coauthors Mary Mittelman at NYU Langone Medical Center, New York City, and Nicole Batsch, King’s College London, U.K., also encourage people with dementia to speak out about their experiences. In a press release, Batsch was quoted as saying, “Stigma remains a barrier to making progress in all other dementia initiatives, such as improving care and support for people with dementia and family carers, and funding for research.” The findings agree with the results of an international survey of physicians commissioned by Eli Lilly and Company and released September 19, which also identified stigma as a pressing issue (see ARF related news story).—Madolyn Bowman Rogers.