“Forgetfulness is just part of aging.”
“Everyone makes financial errors sometimes.”
“Her cooking doesn’t taste like it used to.”
So often, fear and misconception play into the stigma associated with Alzheimer’s disease and other types of dementia. Learning to identify stigma and counteract it when it sneaks up on you is an important way to help advocate for your loved one living with Alzheimer’s.
What is stigma?
Stigma is a set of negative and often unfair beliefs about another person. Alzheimer’s can carry many myths and misconceptions about the symptoms including:
Loss of memory
Loss of independence
Belief that no quality of life exists
The end of a loved one as he or she was known
Fear of what others might think if they were to interact with him
Fighting the stigma of Alzheimer’s is important because the negativity can make the disease worse. People who feel stigma often:1
Refuse to see a doctor early for fear of getting a “bad” diagnosis
Refuse to accept an Alzheimer’s diagnosis and delay early treatments that can help slow the disease
Withdraw, avoid, or isolate themselves for fear of appearing different with friends and loved ones
Avoid making necessary plans for the future
Fail to ask for help when it is needed
Stigma also keeps friends, coworkers, and family from understanding and helping the person maintain the best quality of life possible as memory, independence, and personality traits change. Perhaps worst of all, stigma may cause a person to assume they have Alzheimer’s disease when they really have a less serious, more easily treated condition.2
What you can do to fight stigma
You can fight the stigma of Alzheimer’s disease and other types of dementia in several ways.
Educate yourself so you can educate others
Symptoms can vary widely among people with Alzheimer’s. A diagnosis does not mean an immediate loss of independence or decision-making ability. Educate yourself and others on how the symptoms may appear and change over time. Facts help fight fear and misunderstanding.1,3
Focus on quality of life
Your loved one’s need for social engagement and opportunities to be active or creative does not disappear with this diagnosis. To maintain quality of life, continue involving and including your loved one in things that bring them joy.
Help your loved one continue to be the person they once were and feel more comfortable with the person they are becoming. Some ideas include singing or listening to favorite songs, going for drives or out to eat, crafting, or attending a concert. Whatever they enjoyed doing before the diagnosis is important to do now.
Maintain a social circle
Too often, those living with Alzheimer’s are isolated, particularly if they have reached the point of needing institutionalized care. Take time to visit yourself and engage with them at their level and show them they are loved. You can also encourage others to visit, and encourage new friendships in their new living space. The need to feel affection from other people continues even when other cognitive abilities disappear. Studies also show that socialization can help decrease the symptoms of dementia.3
Be open about your life now
Many times, people do not want anyone to know when a loved one receives an Alzheimer’s diagnosis. It can feel embarrassing to acknowledge the changes occurring in someone’s brain when he or she cannot perform to societal expectations in public. Too often, there is a desire of wanting to hide the diagnosis and the person from the world.
Hiding plays into the stigmatization of Alzheimer’s disease and other forms of dementia. Honesty about a diagnosis helps reduce the stigma because:1,3
It raises awareness of the disease
It decreases stereotypes (i.e., that only happens to “really old” people)
It encourages earlier evaluation when warning signs first appear
Increased visibility can encourage greater funding for research and treatments
Engage with the community by asking a question, telling your story, or participating in a forum.
Alzheimer’s Association. Overcoming Stigma. Available at: https://www.alz.org/help-support/i-have-alz/overcoming-stigma. Accessed on 10/28/19.
Jolley DJ , Benbow SM. Stigma and Alzheimer's disease: causes, consequences and a constructive approach. Int J Clin Pract. 01 Mar 2000, 54(2):117-119. PMID:10824368. [https://europepmc.org/abstract/med/10824368]
“A Place for Mom: Dementia Care Guide.” Trusted Senior Living Advisors. Available at: http://web28.streamhoster.com/apfmdev/dementia-guide.pdf. Accessed 10/11/2019.