Fighting the Stigma of Alzheimer's Disease
A recent report from Alzheimer's Disease International (ADI) focused on negative attitudes about the disease and the impact on people diagnosed with Alzheimer’s, as well as the effect on their families. Among the findings of the report:
- 24 percent of people with dementia try to conceal their diagnosis.
- 40 percent of people with dementia reported being excluded from everyday life.
- Nearly 60 percent said that friends and family members began to avoid them and lost contact with them after the diagnosis.
Caregivers, too, feel the effect of the stigma:
- 24 percent believe there are negative associations about being an Alzheimer’s caregiver.
- 28 percent felt people were avoiding them or treating them differently.
People with Alzheimer’s and their caregivers also reported they had stopped forming close relationships with others because it was too difficult.
The report’s author Nicole Batsch comments, "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." Says Batsch, "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."
ADI made a set of recommendations to tackle the stigma surrounding dementia, including educating the public, recognizing the rights of people with dementia and caregivers, involving them in their local communities and giving them a voice.
The Alzheimer’s Association’s Beth Kallmyer, MSW, confirmed,"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. The misconceptions and stigma create unnecessary barriers to progress such as improving care and support services and increasing funding for research."
Coping With the Stigma
In response to the ADI report, the Alzheimer’s Association released suggestions for coping with the stigma. These tips were created by people living with the disease who were serving as members of the Alzheimer’s Association National Early-Stage Advisory Group. Based on their personal experiences, the group offered these suggestions:
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.
Kallmyer says, "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."
The Alzheimer’s Association offers detailed resources for overcoming Alzheimer’s stigma and recently launched ALZConnected, a social networking community designed specifically for people with Alzheimer’s disease and their caregivers.