I’ll watch the HBO series with an open heart and mind – I swear I will.
But the reviews are certainly daunting. The whole point of Forget Memory is that there is MORE to Alzheimer’s than tragedy. That there is HOPE in science, but there is also HOPE in human beings – in our ability to learn to be in the company of people with dementia and to find meaning in that experience. In one section of the book, I talk about the types of stories that are told about dementia in popular culture. By far the most dominant one is TRAGEDY with science as HERO. And from Alessandra Stanley’s review in the NYT’s, it sounds as though the HBO project not only falls into this category, but takes it to a new extreme.
Stanley points out that in the segment on developments in research, medical researchers enthusiastically suggest that they are very near a cure. One in particular calls it the most exciting area in medical research today. But Stanley writes:
“Neither he nor the filmmakers deliver many caveats about the long, bumpy road from clinical trial to prescription pad. At times the collective exuberance is so persuasive that viewers have to remind themselves that there is as yet no way to prevent the disease or even slow its progress.
And that’s a problem. It suggests that “The Alzheimer’s Project” comes with an implicit agenda of morale boosting — and fund-raising — that could compromise a balanced understanding of this frightening and complicated disease.”
It’s a little heartbreaking. In Forget Memory, I profile over 10 programs that are raising the quality of life of people with dementia and reducing stigma and fear – over 10 programs where HOPE is in humanity – our ability to reach each other, care for, honor, and learn from/with even those late in the disease. But what we’ll hear in the Alzheimer’s Project looks like it loss of self, suicide as the only option, nobility of caregivers in a losing battle, and the heroism of science. At least, after working so hard on a book for so long, its message will still be relevant when it comes out at the end of the month…
It’s fantastic to get the country talking about Alzheimer’s. It is. More people need to know about the services available, and more people need to ask how they can help. But a message so powerfully frightening about the lived experience and so powerfully positive about science risks deepening the pit of despair when cure continues to be elusive rather than X’ing out hopelessness.
Also see the NYT’s background article on the Alzheimer’s Project.
I will not watch this with an open mind, nor any other sort of mind. I do not need to see another version of the same old fund-raising pitch: See the tragedy. See science riding to the rescue.
I do support much greater funding for the science because we do not know nearly enough about what is going wrong in our brains.
We do know very much about how persons living with memory challenges can manage those challenges and enjoy life. BUT, the Alzheimer’s empire pays very little attention to this knowledge and spends almost nothing making use of this knowledge.
I did watch with an open mind. I had to really focus and search for the positive, a glimpse of the memory for song and music, the response to “I love you”. Pass the Kleenex