Washington DCPeople like me don’t fit the image of Alzheimer’s disease, and we’re usually invisible to the media, the medical system and the public.
I’ve commented on this before (for instance here and here), but I had an especially powerful experience of our invisibility a few days ago. I’d been invited to participate in a large panel discussion in a press conference announcing the formal release of the World Alzheimer Report 2013. The fourteen-or-so panelists were each given an embargoed copy of the report a few days before the conference and asked to comment. As I looked through the 92-page document, however, I didn’t find a single reference to mild cognitive impairment (MCI), to people who look like me. True, the conference conveners should be recognized for giving me and one other person with Alzheimer’s a place on the panel and the Associated Press recognized for its article. Still, as far as I could tell, we were left out of the report itself.
Since the emphasis in this year’s report was on caregivers, I was especially surprised at being left out. People like me, of course, don’t need care yet, but I would guess that the help and attention we get now will make a considerable difference in how difficult it is to care for us later.
These are a few of the questions I asked in my allocated two minutes on the panel:
- I’m at an early stage of my disease and still mentally competent. If I talk openly with family and friends about my diagnosis and come to some internal peace with it, will that change how difficult it will be to care for me later on? What can doctors or nurses or social workers do now that might make it easier for person to find that internal peace and so reduce the future burden on caregivers?
- If I include in the conversation my wider circle of friends and community, will they be able to give me more support now and to give my wife Marja the support she’ll need later on, reducing her exhaustion and allowing me to be kept at home longer? What can we do now to help Marja, other family members and friends to be more able to care for me later?
- Will making financial plans now (while I’m still competent) make later care less agonizing for my family? Is there inexpensive or pro bono help available?
- If my family and I discuss now how I would want those difficult, end-stage questions, to be answered, will that ease their stress when the time comes?
- Each of those questions becomes more difficult when the person with Alzheimer’s is incapable of recognizing their own symptoms (anosognosia). How is that different from psychological denial and how do we tell the difference between the two? Does the difference matter to our care later on? What can we do now to help in the care or preparation for care in the case of someone who doesn’t recognize that anything’s wrong?
The unfortunate fact is that we don’t know the answers to any of those questions. No one has done the research. And we won’t know until our image of Alzheimer’s changes to include people along a wide continuum of disease. The staggering amounts pain to caregivers and of money from all of us ($200 billion a year for long-time care of Alzheimer’s alone) are shouting at us to wake up.