Social stigma associated with dementia and Alzheimer’s disease places burdens on patients and their families that may interfere with early diagnosis and treatment, negatively affect social support and care at home or in a facility, and even undermine research efforts.
The World Alzheimer’s Report here found that 75% of people with dementia and 64% of caregivers believe that negative associations exist, and many have experienced at least one.
"One of our most basic key findings is that people with dementia wanted to be treated as human," Nicole Batsch, the report’s primary author, said in a teleconference announcing the report. "These people are not being treated with dignity and they sense that. They are marginalized, excluded from society, and not respected for the wisdom and experience they have accumulated over the years."
Alzheimer's Disease International, an umbrella group that supports Alzheimer’s associations around the world, commissioned the survey, which included responses from more than 2,500 people affected by the disease, including 2,068 to the English-speaking version of the survey. There were 127 responses to the English-speaking survey from Alzheimer’s patients.
"We think this is the largest, and maybe even the only, online survey with [patients] participating," Ms. Batsch, a doctoral candidate at King’s College, London, said during a teleconference. "Most of those who did take part are already connected with some kind of support program, so the results don’t necessarily reflect the experiences of those who are not. But we think those people may be more stigmatized."
The survey was available in 54 countries and was translated into four languages: English, Spanish, Chinese, and Greek. About half of the entire survey population had completed college or obtained a graduate degree, indicating that the cohort represented a "select group."
Most of the respondents (59%) said they had concealed the diagnosis from other people, citing a fear of social stigma as their reason for silence. A number had withheld the information because they feared losing their jobs, while others were concerned about being judged by their community and family. Half also said they had experienced such reactions after revealing the diagnosis, with 60% saying they had been treated differently because of it.
Both patients and caregivers described a number of reactions to the condition. A frequent complaint of patients was being ignored as others spoke to their companions instead of directly to them. A Spanish-speaking man said his family changed his given name to a diminutive form, revealing that they no longer thought of him as a competent adult.
Some Chinese respondents said that physicians seemed to give up on them or their loved one because "treatment is only a waste of money."
Many physicians do, in fact, engage in stigmatizing behavior, Ms. Batsch wrote.
"Physicians are reluctant to discuss cognitive symptoms with their patients because of the stigma associated with it and the sense that ‘nothing can be done.’ ... 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."
Some have a more altruistic reason for avoiding the discussion, she said. "This attitude is shared by many health care professionals, who are reluctant [because they fear] to give their patients a stigmatizing label."
A 2010 literature review found a number of themes running through physicians’ problems with discussing dementia, she noted. Dr. Tamar Koch, a senior clinical researcher at University College, London, found 11 studies addressing the issue (BMC Fam. Pract. 2010;11:52).
"The main themes from the qualitative studies were found to be lack of support, time constraints, financial constraints, stigma, diagnostic uncertainty, and disclosing the diagnosis," Dr. Koch wrote. Physicians demonstrated divergent levels of disease knowledge, support services, time constraints, and confidence in their ability to discuss the issue.
The survey highlights an important problem for primary care physicians, who are on the front lines of Alzheimer’s diagnosis and treatment, Ms. Batsch wrote. "There is an urgent need for better training of primary health care physicians, who are often involved in making a diagnosis of dementia and need appropriate training to do so effectively. Health care providers need to adopt specific dementia care philosophies that support independence and are centered on the person with dementia."
Important lessons can be drawn from the stigma attached to HIV/AIDS, which hamstrung research for years, perhaps unnecessarily setting back treatment progress, Dr. Baron Peter Piot wrote in the report. For decades, the global community failed to focus on the disease, dismissing it as a "gay plague," wrote Dr. Piot, director of the London School of Hygiene and Tropical Medicine, and a professor of global health.