Combatting Alzheimer’s Disease Stigma

adult Asian daughter with her mature mother leaning on each other and being affectionate sitting on sofa at home.

With more than six million Americans living with Alzheimer’s disease and more than 11 million providing unpaid care, the impact of dementia is huge. Between 2000 and 2019, while death from heart disease was declining, death from Alzheimer’s disease increased 145%.

But that doesn’t mean people want to talk about it. The Alzheimer Society of the United Kingdom found that half of the people they surveyed put off seeking a diagnosis that might result in dementia. Neary two-thirds (62%) felt that dementia diagnosis would mean that their “life is over.” Much of that fear is rooted in misinformation, such as fearing a diagnosis would mean immediately stopping independent activities including walking alone and driving.

What is dementia and Alzheimer’s?

Dementia is a general term for losing memory and other cognitive (mental) abilities to the point where it interferes with daily life. Alzheimer’s disease is the most common cause of dementia, impacting memory, thinking and behavior. It is not a normal part of aging. Thinking and remembering may slow down, but serious memory loss and confusion is not a normal part of the aging process. (One of the earliest symptoms is not being able to remember newly learned information.) Alzheimer’s worsens over time and has no cure.

The many myths and misconceptions about Alzheimer’s builds barriers beyond seeking diagnosis and care. Misunderstanding the reality of dementia may damage the support system those diagnosed may need and rely on. Friends may not want to engage while family may not know how to engage. Others may ignore the diagnosed altogether. The stigma hurts those living with dementia from realizing a good quality of life.

How do you overcome the stigma?

It’s important to combat the stigma so everyone touched by Alzheimer’s can experience their best lives, whether a person is diagnosed with it or a loved one is. The Alzheimer’s Association National Early-Stage Advisory Group, which is made up of people in early stages of the disease, recommends five ways to deal with the stigma and raise awareness after a diagnosis.

  1. Be open and direct. Start the conversation about Alzheimer’s and the need to improve prevention and treatment—and hopefully find a cure.
  2. Share facts. Accurate information about what Alzheimer’s is and looks like is the key to changing how people feel about the disease (and other dementias). The Alzheimer’s Association has free online resources here so you can learn the facts at your own pace.
  3. Find support and stay connected. Meaningful relationships and activities are critical. These can include family, friends or any network that helps you stay engaged.
  4. Don’t get discouraged. People may deny the disease or not listen to the facts. That is not a reflection on you. You can continue to find opportunities to educate; click here for how to help family and friends adjust to your “new normal.”
  5. Be the change. The most powerful voice comes from you. You can help by becoming a leader, advocating with your elected representatives, advancing research by participating in a clinical trial, and raising funds through local events and activities.

The Alzheimer’s Association is terrific place to start any of the above activities.

Alzheimer’s kills more people than breast and prostate cancers combined. But it wasn’t too long ago that cancer was whispered and wrapped in stigma. With time—and facts—that changed. It can with Alzheimer’s too.

Sources: IlluminAge with information from the Alzheimer’s Association and the Alzheimer’s Society (UK).

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