Addressing Alzheimer’s Stigmas

When a loved one starts to lose his or her memory, it can be a struggle for the entire family. The person who has been the head of the family may soon fade from the person they once were, leaving their loved ones to wonder what will come next. The stigma associated with Alzheimer’s disease has a significant negative impact on the lives of people with the disease and their caregivers. Around 25% of dementia patients hide their diagnosis, and 40% say they have withdrawn from many everyday activities according to recent studies. There are many negative public images and stereotypes associated with dementia, which contributes to a lack of engagement with people who have this condition. Many people with dementia experience social isolation due to withdrawal from friends and other important people in their lives.

Many misconceptions about Alzheimer’s exist. It is widely believed that Alzheimer’s and dementia are a normal part of aging. This is not true. It is a disease that develops from a wide variety of risk factors. Many people also believe that all Alzheimer’s patients become violent and aggressive. This only happens with some patients and is typically the result of a deep sense of confusion and fear. Another misconception is that people with Alzheimer’s can’t function or enjoy activities. Stigma around Alzheimer’s disease exists, in part, due to 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 impact Alzheimer’s disease research. The U.S. government funds Alzheimer’s research at lower rates than other diseases, even when the cost of caring for people with Alzheimer’s disease is significantly higher. Stigmas and stereotypes are significant obstacles to the well-being and quality of life for those with dementia and their families. Here are some examples of the stigma those with Alzheimer’s may experience:

  • A diagnosis may test friendships. Friends may refuse to believe the diagnosis or withdraw, leaving a feeling of abandonment or isolation.
  • Relationships with family may change. Family members may not want to talk about the disease or may avoid interaction all together.
  • Others may approach the care partner to inquire how one with Alzheimer’s is doing rather than approaching the individual directly.
  • The reaction of some friends and family to the diagnosis may prevent the person with Alzheimer’s from seeking help from others.

Fighting Alzheimer’s stigma is necessary to maximize the medical treatment, social support, and overall quality of life of people with the disease.  With proper assistance, people with Alzheimer’s can enjoy meaningful activities and maintain positive relationships.

What can you do to reduce Alzheimer’s stigma?

  1. Be proactive. Watch your loved ones for changes in memory and behavior, and be honest with yourself about those changes. Denial doesn’t help. If you suspect that a loved one is starting to experience cognitive changes, seek a medical diagnosis as soon as possible so that they can get appropriate treatment and your family can plan for the future.
  2. Focus on acceptance of the person with Alzheimer’s and understanding of their disease. Remember that frustrating loss of memory or difficult changes in behavior are the fault of the disease, not the person. Learn everything you can from dementia experts and online resources so that you can modify your expectations of the person and learn to respond in the best ways to any challenging behaviors or situations.
  3. Remain engaged with the person with dementia. Continue to treat them as an adult, and talk to them rather than around them. Don’t fall into the trap of treating a person with dementia like a child. Make an effort to include them in family visits and celebrations, and help them continue to access the activities they love. Positive social interactions will help them feel safe and comfortable, which will reduce negative behavioral expressions and maintain the best possible quality of life despite the disease.
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