At the end of June, I had the opportunity to experience the first ever North American Dementia Action Alliance Conference in Atlanta. This was an amazing event, the best and most moving dementia conference I have ever been to, and it scrambled my brain in the very best way.
The conference organizers included persons with early-stage dementia in their planning. There were many speakers at the conference who also had dementia, who spoke movingly and clearly about horrendous experiences with diagnosis (example: essentially being told by the doctor to “get your affairs in order”, and just prepare to curl up and die) the stigma that accompanies the diagnosis, the despair the ensues, and the long climb back into hope, purpose and connection which now fills their lives.
There were 30 persons who attended the conference who are currently living well with dementia, and doing amazing things. Yes, they run on adrenaline in conference situations and there is another side to their lives that conference goers like me can only imagine, i.e. the utter exhaustion at the end of the day, the confusion that comes and goes, the losing one’s way in a large hotel, the forgetting a portion of what happened this morning.
Here are 10 things I learned:
1. While I am the Dimensions Coordinator for Ebenezer, a large and reputable organization which cares for older people, many of them with
dementia, I am NOT a dementia expert. People who have dementia are the real dementia experts, and we all, including me, need to listen to them more.
2. People with dementia are very smart, especially about dementia. Having dementia is not to be confused with mental retardation. (I assumed that I understood that already, but it was only after hearing this panel of people who happened to have dementia and who were all brilliant, articulate and expressive did I really get it.) People with dementia use their intelligence to compensate, to reach out to others, and to express their truth.
3. People with dementia do not appreciate the automatic assumption that they are “suffering” with dementia. Yes, they may be struggling to stay connected to who they were, but they are not steeped in misery 24/7. As one person very succinctly put it, “I have Alzheimer’s, but it doesn’t have me.”
4. We must change the lens with which we view dementia. Persons with dementia would prefer to be seen as “living with a chronic disability”
rather than “dying from a fatal disease”. We encourage people to give up when we frame it in the latter way. People often have MANY years
left once given a diagnosis. A pronouncement of their “timeline” may not serve them well. No one has a crystal ball.
5. People with dementia are creative and flexible. Many have found ways to compensate for changes in their cognition; they use tools,routines, technology and strategies to support themselves.
6. People with dementia are keenly aware of our response to them; they’re sensitive to the mood on our faces and the look in our eyes. If we are kind and open, and willing to meet the person where they are at, that means the world to them. If we only pity them, or turn away because we don’t know how to respond, that hurts.
7. People with dementia have passion: passion to make a difference in the lives of others with dementia, passion to rise above the fog that sets in, passion to choose to LIVE, passion to mentor others with dementia (see
Dementiamentors.org for more information). Their passion fuels them to live their purpose. They may find that purpose in creating art. One participant at the conference spoke of losing her ability to speak early on in her dementia process. For a time, she was suffering intensely. She felt devastated, and without hope. A smart friend got her into a clay workshop and she started making pots. Now, her sense of purpose is fueled by making astoundingly elegant, museum-quality pots. And by the way, she has completely regained her ability to speak.
8. People with dementia are fierce advocates. They are resilient. They do get tired of course, partially because they spend a lot of energy making sure other people are comfortable with their illness. People with dementia are ordinary people. They do not want to disappear. They try to forget about dementia so that it doesn’t define them. People with dementia want to live a life with a sense of normalcy, and to live fully, for as long as possible. This includes the right to make mistakes once in a while. Do people without dementia have the right to make some mistakes? So, there’s a lot of food for thought here for those of us who care for people with dementia at any stage. I have to wonder…What if every resident with dementia at Ebenezer had had the advantage, at the start of his/her diagnosis, of experiencing the abundance of support, encouragement, mentoring and community that now exists for persons living with an early stage-diagnosis. Might they be doing a whole lot better now? I think they might. But it is never too late to support people in finding a sense of purpose and meaning, and never too late to treat them with the compassion and respect they deserve. It is with a renewed and profound sense of purpose that I will continue to learn about dementia from the real experts, and to advocate for them, all along the way.
-Marysue Moses, Ebenezer Dimensions Coordinator, email@example.com
Our Memory Care program at Ebenezer now has a name –Dimensions.
Dimensions has five building blocks:
I chose the name Dimensions not just because it sounds like the word dementia, but because of all the things the word demands that we think about, such as . . .
The person with dementia has many different dimensions
We can’t assume that what we see or hear or assume about a person is all of what is there. We must be curious, patient and respectful as we work to discover the length, breadth and depth of each person’s history, personality, preferences, sense of purpose, habits, idiosyncrasies, hot buttons, skills (yes, these people still have skills) and strengths. Their long-term interests and passions need to be encouraged. These people still have a sense of humor and a need to laugh, even if that doesn’t seem obvious.
The spiritual dimension
Did you know that some Native American cultures believe that persons with dementia are doing important spiritual work—communicating with spirits at a level the rest of us cannot understand. I love the inspiration this idea provides. It spurs me to work hard to create more and more calm in our Ebenezer environments.
Imagine how we might honor and reward care partners and caregivers if we all agreed that persons with dementia were indeed doing the most important spiritual work on the planet! Imagine the environments we would build for these folks! Imagine the walking paths, the sense of peace and purpose, the accessibility of nature.
The spiritual dimension is indeed another dimension of the person to consider in order to give them the care they require. What moments in their life do they hold as sacred? When do they feel most at peace, most at one with all things? Where have they found solace during hard times in the past? It is important to ponder these questions, search for clues, and to ask the individual, if they are able and willing to respond to them.
The point I am making is part of the theme I often remind myself and all those whom I train on various dementia care topics: People with dementia are PEOPLE, first and foremost. They have needs (to be filled) and quirks (to be enjoyed) just like the rest of us. There are things that make them laugh (to be discovered and used as often as possible). They have likes and dislikes (to be respected) good days and bad days (to be tolerated) and they have courage and resilience (to be admired and emulated).
A person with dementia NEVER stops being a person.
With thanks to Megan Carnarius, author and nursing home operator, for the insight on Native American beliefs.
~ Marysue Moses
Dimensions Program Coordinator
3601 Wooddale Avenue South
St Louis Park, Minnesota 55416