Alzheimer's Stigma Causes Isolation, Delays Diagnosis

In March 2017, the Alzheimer’s Association released the results of a study that found that most people believe that if they were to develop Alzheimer’s, they would face discrimination. Said Maria C. Carrillo, Ph.D., who is the chief science officer for the Association, “The unfortunate stigma associated with Alzheimer’s may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life.” She added, “We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments.”

When a person has Alzheimer’s disease or another condition that causes memory loss and thinking problems, early diagnosis helps both the person and their family to access the best possible care and treatment, and to plan for the future. Yet, say experts, only half of seniors with Alzheimer’s have been formally diagnosed, and only 25 percent of people who are experiencing memory problems bring up the topic with their doctor. This is partly a matter of human nature—it’s easier to be in denial about things that worry us. But another major factor is that people fear the stigma that is so often associated with Alzheimer’s disease and related conditions.

This stigma not only prevents patients from getting a prompt diagnosis, but also has a serious negative impact on their subsequent quality of life. According to a study from Alzheimer’s Disease International (ADI), almost half of all people with dementia said they felt excluded from everyday life, and over half reported that some of their friends and family members began to avoid them after the diagnosis.

Many family caregivers, too, said they experience the effects of this prejudice, reporting that friends and family avoided them, and didn’t want to talk about their loved one’s condition.

Said study author Nicole Batsch, a Ph.D. candidate at King’s College London, “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 report reveals that people with dementia and carers feel marginalized by society, sometimes by their own friends and family members. What they want is to be treated like normal people with a focus on their abilities and not on their impairments. Bringing light to these issues will help improve the quality of life for people with dementia and for their carers.”

Caregivers whose loved ones have dementia, and professionals who serve their needs, see how the stigma associated with memory loss creates a distorted picture. Myths and misconceptions abound. For example, many people assume that people with dementia are miserable. Yet a recent study from the University of Kentucky found that almost half of people with early-stage dementia displayed an improved outlook on life. Study author Dr. Gregory Jicha noted, “The common stereotype for this type of diagnosis is depression, denial, and despair.” Yet his study, he said, “suggests that positive changes in attitude are as common as negative ones.” Jicha found that the people he studied expressed an appreciation and acceptance of life, lessened concern about failure, and strengthened relationships.

The stigma also causes people to assume that dementia causes a person to “disappear”—when in reality, people with dementia are unique individuals who continue to participate in the community and who thrive on social interaction and engagement, even as the disease progresses.

It’s time for a change, and change is possible, say many experts and many people who are living with memory loss. People with dementia and their allies are working to improve the attitudes of the public. More public programs and resources seek to support and meet the needs of people with dementia, and to create opportunities for people with and without memory loss to interact in ways that break down barriers.

A group of people in the Alzheimer’s Association national Early-Stage Advisory Group offered these suggestions about how people with memory loss can help combat the 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 remain engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.
• Don’t be discouraged. Myths about the disease are not a reflection on you. See this as an education opportunity.
• Be a part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness.