Alzheimer's Association
Facing stigma is often a primary concern of people living with Alzheimer's and their care partners. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease.
"If we're going to find a cure, and we're going to get the research and support that we need behind us, we need to have people coming out and not be ashamed of their diagnosis," says Joan U, a person living with Alzheimer's.
Why we need to fight Alzheimer's stigma
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.
The experience of Alzheimer's stigma
Stigma and stereotypes are significant obstacles to well-being and quality of life for those with dementia and their families. Here are some examples of the stigma you may experience:
* A diagnosis may test friendships. Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
* Relationships with family may change. Family members may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
* Others may approach your care partner to ask about you rather than asking you directly how you are doing.
* The reaction of some friends and family to your diagnosis may prevent you from seeking help from others.