I have just returned from the first Dementia Action Alliance Conference: Re-Imagine Life with Dementia in Atlanta and I feel strongly compelled to share my experience. Frankly, I can’t think of a better way to wrap up Alzheimer’s and Brain Awareness Month. The Dementia Action Alliance is an organization that was formed to give a voice to those living with dementia and those who partner with them. You can read more about their mission here.
The conference was the first of its kind; a gathering of those living with dementia in all of its forms: their care partners, vendors of supportive products, researchers, and then the professional types, who often refer to ourselves as “experts” (more on that later). It was a really cool mix of people; all passionate about the same thing, changing the narrative around what it means to live with dementia. The conference was bookended with two panel presentations by some truly remarkable people. I will refer to them and their work below, and suffice it to say, they are five very powerful voices speaking truth on living with dementia. These five people were willing to share their experiences so that the rest of us could learn more.
To honor them and all the work they put in, I want to try to share with a greater audience some of what I learned, or was reminded of:
1. People living with dementia are far more organized than we are. I attended a session with two panelists on “Using Compensatory Strategies for Living with Dementia” and their “hacks” for keeping things straight completely blew me away. Laurie Scherrer offered some fantastic tips for traveling. Truthful Loving Kindness explained how she and her sister created a portable cloth chalkboard for her husband to write reminders on.
2. The power of human connection trumps the tragedy narrative of dementia every time. Silver linings are often found in relationships with peers who are living with the same challenges. All of the panel members spoke of the unexpected connections and bonds that have formed as a result of knowing others living with dementia and a few said that they wouldn’t trade that in for anything. Check out Dementia Mentors for more on the power of “dementia mentoring” and connecting with others.
3. Symptoms of dementia can come and go. Of course I knew this intellectually, but to hear the descriptions of the panel members, I was reminded that just because someone has been diagnosed with one or more symptoms of dementia, does not mean those symptoms are present for that person all the time.
Panel member Brian LeBlanc, who is most famous for his tagline, “I have Alzheimer’s, BUT it doesn’t have me,” painted an incredible picture of the disease. He said it’s like driving down a road and going through patches of very dense fog and being lost, but then also going for many miles on that same trip when the road is clear and sunny and no help is needed. He also powerfully said, “I’m not suffering, I’m struggling.”
Another panelist who lives with Primary Progressive Aphasia spoke of her dementia as being like “walking in tar.” As the tar gets thicker and communication becomes more problematic, the look on people’s faces becomes more important as a cue to what is being communicated.
4. Life with dementia includes the person with the symptoms but also the people and supporters living around the person as well. Human care partners and non-human supportive helpers are all necessary to cope with symptoms. One panelist told us that technology is playing a huge role in supporting life with her symptoms of dementia. “My iPad is my back-up brain,” and another said she uses her smart phone constantly to capture reminders for herself. Low-tech helpers were also featured with several service-dogs in attendance and signs at each table that could be waved at speakers reminding them to “slow down” or cut background noise.
5. Doctors need to learn how to deliver the dementia diagnosis. Four out of five of the panelists told stories about botched encounters with physicians that were incredibly hard to hear. The “go home and get your affairs in order” speech is all too often the norm. Research confirms that physicians dread, and in fact avoid, delivering this news. Most of the conference attendees agreed (especially the physicians in attendance) that the panel discussion should be used for educational purposes. For more on physicians’ issues with dementia, read this NPR report.
6. A small group of well-intentioned folks can start a revolution. Living a life with purpose and meaning is absolutely possible with dementia and in fact, sometimes the dementia itself brings a higher purpose. I was struck but not surprised by the intensity with which each panelist spoke of the importance of finding meaning and purpose in their everyday life. It is important to all of us. The purpose doesn’t always have to be advocacy or mentoring others with dementia, but for the five panelists it certainly has. Their focus has become fighting for individuality and a continued role for all people living with dementia in a world that is quick to marginalize those with cognitive differences. Someday, I know we will look back and realize that this conference was in fact the Shirtless Dancing Guy.
I want to personally thank the members of the Dementia Action Alliance Advisory Council: Robert Bowles, Phyllis Fehr, Paulan Gordon, Brian LeBlanc, and Susan Suchan for your wisdom, energy, bravery, humor and truth. As the true experts on living with dementia, you helped us all to Re-imagine Life with Dementia!