In his 1971 best-selling solo, “Imagine,” John Lennon encourages his listeners to imagine a world at peace without barriers, borders, or divisions. I attended the Dementia Action Alliance (DAA) Conference held in Atlanta June 25-27. The theme was “Re-Imagine Life with Dementia.” This motto set the tone for the workshops, interactive learning sessions, and special interest groups.
I was particularly moved by the Monday morning plenary panel discussion. The five panelists are active advocates and either Advisory Council Members or Board Members of the DAA. All are living with a diagnosis of some form of neurodegenerative disorder. They spoke from the heart about their day-to-day experiences. In the hope that it opens your mind and heart as it did mine, I’d like to share their answers and discussion to three of several main questions posed by the commentator, Dr. G. Allen Power.
Questions: How do you live with a chronic disability? What are your biggest challenges?
Brian LeBlanc, diagnosed with younger-onset Alzheimer’s in 2014, explained that there are many hurdles to overcome. There are zigs and zags in an hour, a day, a week as he often can’t remember how to do things. He asked the audience to picture themselves driving down a road and encountering a thick fog. You put on the brakes and creep through. Then you may go another five miles or so until you hit another fog bank. He goes through this on a daily basis, sometimes twenty or thirty times. There are days when the “fog” lasts all day.
Paulan Gordon, living with vascular dementia, noted that her loss was progressive. She went through the grieving process each time she was at a point of not being able to do some things any more, like driving, cooking, her hobby of reading novels. She felt isolated until she finally got to the point of acceptance. She found a sense of purpose as a mentor and a whole new world opened up for her.
Robert Bowles, a pharmacist for forty-two years, felt like “a convicted felon.” He came to the realization after his diagnosis of dementia with Lewy bodies (DLB) that he had two choices: to give up or to live. He decided to become a mentor for dementia cafes and encourage others. “My diagnosis simply gave me a different venue to do the things that I had tried to do all my life – to make a difference.”
Phyllis Fehr mentioned that she was a nurse. In 2010, at age 54, Phyllis received a diagnosis of mixed dementia in the form of early onset Alzheimer’s and Lewy body dementia in 2012. She had to grow to re-trust herself. She knew that she had to make a difference and so joined advocacy groups. The support of her family has made a big difference. Phyllis hopes that her grandchildren will educate their peers about the disease.
Susan Suchan has fronto-temporal disorder/primary progressive aphasia (FTD/PPA). She explained that it feels at times like she is walking in tar – as the tar gets thicker, communication becomes more problematic for her. She worries that others will not understand her.
Question: What was your experience when you received your diagnosis?
Brian reported that the doctor never looked at him or his wife. She asked, “Does he have Alzheimer’s?” The doctor paused and then said that Brian had early onset dementia. The couple sat there for two minutes crying before the doctor said, “I’ll be right back,” and left the room. When he came back to them, he gave Brian a prescription for Aricept and Namenda and told them to come back in three months. He didn’t have anything else to offer but a prescription. Brian was 54 at the time. (Younger-onset Alzheimer’s is also known as early onset Alzheimer’s.)
Phyllis knew something was wrong throughout three years of waiting and roadblocks. Then after testing, the neurologist looked at her husband and said, “She’s got Alzheimer’s, but is doing well. Come back when she can’t dress herself.” She eventually found a neurologist who was supportive and put her on a medication patch that helped her. Phyllis wants to educate doctors how to give a diagnosis.
Robert noted that one of his daughters diagnosed something was wrong with him two years’ prior to the “official” diagnosis of dementia with Lewy bodies (DLB). He went through eighteen months of hell and depression. Robert told the audience that it is important to find a doctor who will listen to you about your symptoms and not rush to diagnosis. Like so many others with this disease, Robert received a number of incorrect diagnoses ranging from depression, to heart disease, to Parkinson’s disease before he finally heard the words “Lewy body dementia.” DLB symptoms are similar to those of Parkinson’s disease.
Susan knew something was wrong when she began experiencing balance problems and was frequently falling over. She realized she had to get help when she felt “trapped and lost” inside a shower stall. She consulted with a general practitioner who began tests. Susan was enthralled with the testing process, ruling out what she didn’t have. The audience laughed when she said she was fascinated that she didn’t have syphilis. However, she was anxious during the testing process for fear that they would tell her she was psychotic or schizophrenic. Her diagnosis came back as fronto-temporal dementia. A doctor told her that he was so sorry she had a pacemaker, that she would consequently live longer than she would want to.
Paulan reported that it was her daughter who documented her symptoms and took the list to a psychiatrist. This doctor diagnosed that Paulan was suffering from depression and anxiety. Following more extensive testing, the doctor handed her a fourteen-page report and coldly told her, “Here it is.” She wrote an e-book about her experiences. It is available on Amazon.
Each panelist spoke of the importance of finding meaning and purpose in their everyday life. They did not allow dementia to define who they are. In fact, for many of them, having dementia brought about a higher purpose. It was clear to me that all of them want to be seen as “whole” persons. In their own ways, they have learned to thrive. They look for opportunities to share their experiences with others in the hope that talking about dementia will change people’s misconceptions.
Can we re-imagine dementia? Robert Bowles can: “I dream of the time when there is no stigma about having dementia. I dream of better education and understanding about dementia for care partners. Individuals with dementia can still do lots of things. We need support to find our new purpose and develop strategies for living with our condition well.” (Taken from DAA’s website)
This is the challenge for our society– that a diagnosis of dementia not be a “death sentence.” It means inclusion and reasonable accommodations on the job for employees, in housing, and medical care. It requires advocacy and collaboration in our communities, our businesses, our churches, our neighborhoods. How can we re-imagine dementia in our own families and homes?
Here are core principles that the Dementia Action Alliance offers to get us started. These were posted by Deborah Shouse on DAA’s website:
Person-Centered Dementia Values and Principles
- I am a person living with dementia. Spend time getting to know me and relating to me as a person with a unique background, life history, interests and capabilities.
- Help me stay connected to what is important to me. Although aspects of my personhood may become increasingly hidden, I am still here.
- A reciprocal relationship is important to me. Autonomy, choices, dignity, privacy, self-determination are fundamental to my well-being.
- Support my holistic emotional, social, physical, cultural, sexual, and spiritual dimensions.
- Promote my personal growth and development. Help me continue to experience purpose, meaning, relationships and enjoyment in my daily life.
- Partner with me, utilize my strengths, and provide the right amount of support and opportunities I need to achieve my goals.
- Some dementia symptoms may interfere with my communication. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.
I hope I’ve done justice to the personal stories that the five panel members willingly shared during the DAA conference. It is also my hope that, in the not too distant future, John Lennon’s lyrics will ring true throughout the world for those living with dementia and their care partners.
“You may say I’m a dreamer
But I’m not the only one.
I hope some day you’ll join us
And the world will live as one.”
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Check out the Dementia Action Alliance’s (DAA) website to find out what you can do to advocate for persons living with dementia by going to: http://daanow.org/what-you-can-do/.
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Listen to Susan Suchan, one of the panelists, share her dreams in this three minute YouTube video: https://www.youtube.com/watch?v=U5qWuHMi0Sg.
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Paulan Gordon describes her symptoms of vascular dementia in this five-minute “Dementia Mentors” video: https://vimeo.com/111343974.
To buy the Kindle version of Paulan Gordon’s book, Vascular Dementia, An Inside Perspective, go here: https://www.amazon.com/Vascular-Dementia-Inside-Perspective-Paulan-ebook/dp/B01CR8UIDG.
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I’m eager to hear your thoughts about how you “re-imagine” dementia. You can e-mail me at: Vicki@CaregiverFamilies.com. Thank you!