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:
- 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.
- 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.
- 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”.
- 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.
- 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.
- 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.
- 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 (visit 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.
- 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?
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