Dealing With the Shame and Stigma of Alzheimer’s Disease
September is World Alzheimer’s Month, a fitting time to explore the topic of dementia and how it affects not just the person with the disease but the whole family as well. Sadly, there is shame and stigma attached to Alzheimer’s disease, a big concern of people living with Alzheimer’s as well as their care partners. Those suffering from the disease say they are misunderstood due to the myths and misconceptions others have about Alzheimer’s. If you or a loved one is in hospice in San Francisco and elsewhere while dealing with Alzheimer’s disease, this week’s article is for you.
Fighting the Stigma
Stigma: this is defined as the use of negative labels to identify a person with a disability or illness, says the Alzheimer’s Association. Stigma surrounds Alzheimer’s disease mainly because of the lack of public understanding and awareness of the disease. Such a stigma prevents people from:
- Getting proper medical treatment when they display troublesome symptoms
- Getting an early diagnosis — or any diagnosis at all
- Living their best lives while seeking treatment
- Making plans for the future
- Gaining benefits of available treatments
- Forming a support system
- Participating in clinical trials
Stigma and lack of awareness can be devastating for those suffering from Alzheimer’s, but it can also impede the progress of research. With the government funding Alzheimer’s research at much lower rates than it does other diseases, the cost of caring for Alzheimer’s disease is, in turn, much higher.
The stereotypes surrounding the disease represent big obstacles to experiencing the quality of life those with dementia deserve. Perhaps you have experienced these signs of stigma after your diagnosis:
- An Alzheimer’s diagnosis tends to test friendships. Sometimes your friends or family members will refuse to believe the diagnosis and consequently withdraw from your life. You may be left with feelings of abandonment or isolation.
- Relationships with your family can change, as they may not want to talk openly about the disease. They may also avoid interactions with you because they don’t know how to deal with it or what to say.
- You may find friends and family members prefer to talk to your care partner to ask questions rather than pose those questions directly to you or asking how you’re doing.
- The reaction you receive to the diagnosis can prevent you from seeking help.
Tips for Overcoming the Stigma
Here are some ways in which you, as the one with dementia, and close family members, can help overcome the stigma and shame associated with the disease.
- Be open and direct: Engage others in discussions about Alzheimer’s and what can be done in terms of prevention, better treatment and a cure for the future.
- Give the facts: Share accurate information in order to dispel misconceptions about Alzheimer’s. You can share anything from pamphlets to online links — anything that helps others understand the facts of what you’re going through.
- Maintain a connection: Seek support for the disease through continued outings with friends and family, support groups, and counseling. It’s important to stay connected with a network of support.
- Don’t get discouraged: Don’t be discouraged when you encounter denial of the disease from others, or feel shamed by others. Use this time as an educational opportunity.
- Raise awareness: Use your voice to help raise awareness, end the stigma of Alzheimer’s and advocate for additional support and research.
End the Shame and Blame
Having Alzheimer’s is nothing to be ashamed of. You did nothing to deserve it so you don’t have to hide. But still, people, especially those newly diagnosed, feel they have to whisper about their disease and keep the diagnosis close to the vest in shame. Many times, a diagnosis is not publicly known, or even known among family members, until something alarming happens, such as getting lost, getting in a car accident or making a big financial mistake.
A recent study found that one in four people hide their Alzheimer’s diagnosis from others. In contrast, think about how differently you would handle getting a cancer diagnosis. You would be much more likely to share this news in order to start getting support and fighting the good fight. Not so with Alzheimer’s. Shame and blame are the two main reasons why so many people hide their diagnosis.
Unlike a condition that only affects the physical body, dementia is associated with words like “crazy,” “insane,” and “senility.” As a result, words like humiliation, distress, and dishonor are used when reflecting on how the person with dementia feels. In addition to shame, many people feel guilt for developing the disease, as though it is their fault that they are becoming a burden on loved ones. They may say such things as “I should have taken better care of myself ” or “If only I had exercised more.” Yes, lifestyle habits can affect the risk of Alzheimer’s, but some people get Alzheimer’s despite being healthy and fit.