Facing stigma is often a primary concern of people living with Alzheimer's and their caregivers. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease.
Stigma is the use of negative labels to identify a person with a disability or illness. Stigma around Alzheimer's disease exists, in part, due to the lack of public awareness and understanding of the disease, preventing people from:
- seeking medical treatment when symptoms are present
- receiving an early diagnosis or any diagnosis at all
- living the best quality of life possible while they are able to do so
- making plans for their future
- benefitting from available treatments
- developing a support system
- participating in clinical trials
Stigma and lack of awareness also impacts Alzheimer's disease research. The government funds Alzheimer's research at lower rates than other diseases, even when the cost of caring for Alzheimer's disease is significantly higher.
Stigma and stereotypes are a significant obstacle to the well-being and quality of life for those with dementia and their families. Here are some examples of the impact of Alzheimer's stigma:
There is a stigma, in that some people "quietly" de-communicate. As such, you usually find out later they don't even talk to you again, unless you cross paths.
- A diagnosis tests friendships. Friends may refuse to believe the diagnosis or withdraw from a person's life, leaving a feeling of abandonment or isolation.
- Relationships with family may change. Family members may not want to talk about the disease, perceive the person as having little or no quality of life, and may avoid interacting with the person.
- Others may approach a caregiver to ask about the person, rather than asking the person directly how he or she is doing.
- In the workplace, employers may not handle the diagnosis well and interactions with colleagues can change.
- Others are afraid that the person with Alzheimer's may act out or behave inappropriately.
- A person with the disease may not seek the help they need to protect against feelings of embarrassment or incompetence.
The following tips are based on the advice and experience of current and former members of the National Alzheimer's Association Early-Stage Advisory Group, which consists of individuals in the early stage of the disease who help raise awareness about the disease.
Deal with Stigma Directly Shirley Sillman, wife and caregiver for Bob Sillman, who was diagnosed with younger-onset Alzheimer's in 2007, shares thoughts and advice about dealing with the stigma attached to Alzheimer's. Read the Q&A and share your tips.
- Be open and direct. Engage others in discussions about Alzheimer's disease and the need for prevention, better treatment and an eventual cure.
Learn more: What We Know Today, Participate in Research
- 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.
Learn more: What is Alzheimer's?, Understanding Dementia, Alzheimer's Publications
- 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.
Learn more: ALZConnected Online Community, Find a Support Group
- Don't be discouraged. Denial of the disease by others is not reflection of you. If people think that Alzheimer's disease is normal aging, see it as an education opportunity.
Learn more: Alzheimer's Myths, Brain Tour, Facts and Figures
- Be a part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness.
Learn more: Alzheimer's Association Advocacy, Join Us
Working together, we can take steps to overcome stigma around Alzheimer's disease.
- Advocate. Speak up for the rights and needs of those facing Alzheimer's.
I have spoken out about the disease. I have been in newspaper and magazine articles, and on TV trying my best to erase the stigma that comes with the disease.
- A person with Alzheimer's
- Sign up for weekly enews. Get tips on managing daily life with the disease, plus updates on advances in Alzheimer's treatments, care and research.
- Join the movement. Help to raise funds and awareness to fight Alzheimer's through the Alzheimer's Association Walk to End Alzheimer's.