Two years after my father’s death, people ask why I’m still researching and writing about Alzheimer’s and dementia. I tell them I want to help other families who are going through what mine did. I also tell them that Alzheimer’s researchers are teaching me a lot about science. What’s harder to explain is that people with dementia are teaching me a lot about life.
David Shenk, author of The Forgetting: Alzheimer's: Portrait of an Epidemic, put this into words during his keynote speech at the Early Memory Loss Forum.
David Shenk, author of The Forgetting, with Judy Wunsch, Director of Volunteers and Member of the Board, California Southland Chapter of the Alzheimer's Association at the Early Memory Loss Forum
"When I started work on The Forgetting,” he said, “I thought I was writing a book mostly about the scientist heroes who are going to cure this disease. I did find them, and they are heroes. But what I didn't expect was the overwhelming humanity, that other part of the Alzheimer's world where people come closer to life's deepest truths; where -- through this disease -- people are discovering how to be better and warmer human beings."
Shenk, whose book was made into a PBS series, looked out over the L.A. auditorium packed with people with memory loss. "This isn't what I saw nine or ten years ago when I started researching this disease,” he said. “Back then, very few people who were diagnosed with Alzheimer's could be true ambassadors, or could take a role in managing their own care and fighting for more resources."
Back then, as Shenk later reminded me, there was almost no infrastructure for early-stage patients to let their voices be heard. The new visibility and activism of people with dementia is a credit to people like Rich Bozanich and Jay Smith, who organized the Early Memory Loss Forum, and to the others with dementia who now organize meetings, run chat groups and web sites, and speak at conferences.
While acknowledging recent social and scientific progress, Shenk said there’s much more work to be done, both on a personal and on a national level. So, given the downward trend in U.S. government funding for Alzheimer’s research, what should we do? And given that optimism about finding an immediate “cure” is dwindling, what actions should we take? Shenk had three recommendations for people with Alzheimer’s, their families and friends:
1. Be technical practitioners in your personal wars against Alzheimer’s disease. Educate yourself about the disease and take care of yourself.
2. Fight the political war – advocate for more funding and research.
3. Find the meaning and the human connection in Alzheimer’s.
Shenk is working on a new book, tentatively called "The Genius In All of Us: Nature, Nurture and the New Science of Talent and Giftedness." I asked him whether writing about Alzheimer’s prepared him to write about genius. Both topics deal with brain science, but there are other parallels. “Both are about trying to grasp some sort of meaning in an impossibly-complex subject,” he said. “In both cases, I am trying to distill a lot of extraordinary science into something that the general public can use. More personally, both are subjects that are important to me, and that I think I can make a real contribution to.” I wonder if he’ll find that through genius, as through Alzheimer’s, people can become “better and warmer human beings.”