This past weekend I attended a volunteer recognition reception hosted by the Maine Chapter, Alzheimer’s Association. Bob O’Keefe, from North Waterboro, won the Marilyn Paige Founders Award and Deborah Johnson, from Harrison, won the Robert Stram Award for Advocacy. Volunteers in general are remarkable people, in my opinion, but these two individuals blew me away. Bob, 71, was diagnosed with early-onset Alzheimer’s 4 years ago. Deborah’s husband was diagnosed about 6 years ago when he was in his late 40s. As they shared their stories, I kept wondering how they could do it — handle the moment-to-moment challenges of dementia — and still find the time, energy and courage to increase awareness about this insidious disease and what still needs to be done in terms of research, funding and support.
Bob told me that he is grateful his progress has been slow and thinks a lot of it has to do with staying active, not only with the Alzheimer’s Association, but with other things in his community as well. “I retired in 2007,” he says. “I was an executive with an insurance company. It was about a year and a half later that I noticed I wasn’t remembering a lot of things, sometimes embarrassing things. My father had the disease, my older brother had the disease and they both died with it. I felt I was on borrowed time. Fortunately, I tested pretty high up on the intelligence scale, but my ability to recall was really shot. After my diagnosis, it took me and my wife a week or two to decide we’re not going to go ‘quietly into that good night.'”
When Deborah accepted her award, she said that she and her husband, “have participated in drug trials and research experiments and cooked with coconut oil and sea weed, but for me, the one thing that has made me feel like I was really fighting this terrible disease has been working with the Alzheimer’s Association and meeting amazing volunteers who really ‘get it.”‘
Not everyone dealing with Alzheimer’s and other cause of dementia is able to be as open about the disease as Bob and Deborah. The stigma around dementia is strong, partly because of lack of awareness and understanding about the disease, sometimes even in people dealing first-hand with dementia. The Alzheimer’s Association has an equally strong opinion about why it’s important to fight stigma.
Why we need to fight Alzheimer’s stigma
The following information is pulled directly from the Alzheimer’s Association website.
Stigma prevents 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
Alzheimer’s stigma affects well being and quality of life
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.
Five tips to overcome Alzheimer’s stigma
The following tips are based on the advice and experience of current and former members of the Alzheimer’s Association National Early-Stage Advisory Group (ESAG), which consists of individuals in the early stage of the disease who help raise awareness about the disease.
- Be open and direct. Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.
- Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease.
- Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.
- Don’t be discouraged. Denial of the disease by others is not a reflection of you. If people think that Alzheimer’s disease is normal aging, see it as an education opportunity.
- Be a part of the solution. As an individual living with the disease, yours is the most powerful voice to help raise awareness, end stigma and advocate for more Alzheimer’s support and research.
Deborah and Bob don’t consider themselves brave because they’re willing to share their stories. Talking about the disease is what helps break the stigma. Bob says volunteering at the Alzheimer’s Association changed his life for the better. “I figured if I have it, I have it, but I’m not going to just roll over,” he says. “That’s when I did some research and found the Alzheimer’s Association and I think they saved my life. It’s become my other family. It gives me purpose and everyone is very respectful of what I’m going through. Next year, with their help, I plan to start a support group of my own.”
“There is great power in numbers spreading the word of this disaster known as dementia,” says Deborah. “I am very proud to be just one of the millions fighting to let the world know that there is nothing normal for a family living with Alzheimer’s. We need to end Alzheimer’s now.”
Here at Advantage Home Care, we offer specialized care for people with Alzheimer’s disease and dementia. Our caregivers receive training from Darlene Field, the former director of training and education at the Maine Chapter, Alzheimer’s Association and a recognized expert on Alzheimer’s care. She provides ongoing training courses for all Advantage Home Care caregivers, assists with assessments of Alzheimer’s clients and provides education seminars for family members and friends of Alzheimer’s patients.
If you have any questions or would like more information about our services please don’t hesitate to contact us by email or by phone at 1-888-846-1410 or 207-699-2570.
We also invite you to help break the stigma of dementia by sharing your story in the comment section below or on the Advantage Home Care Facebook page. Thank you.
Our Aging in Place blog is written by Diane Atwood, who also writes the blogs Catching Health with Diane Atwood and mylatestart.com.