I started this blog to report on the work of Alzheimer's scientists, but I keep running into the work of another group. This loosely connected collection of historians, social workers, people with memory loss and others is focused on recognizing that persons with memory loss are valuable members of society. I guess it's not surprising that this group often takes a larger view of Alzheimer's and dementia.
Michael Verde is definitely someone who thinks about the big picture. He is the founder and President of Memory Bridge, a Chicago-based foundation working to connect people who have Alzheimer's with family, friends and community. Two of his grandparents had dementia.
Since its beginnings in 2004, Memory Bridge has produced the PBS documentary There Is a Bridge, developed a program partnering junior high and high school students with people with Alzheimer's, created an interview guide for cognitively impaired participants in the Veteran's History Project and launched an art exhibit containing maps of the lives of people with Alzheimer's.
I talked with Michael about what we can learn from people with memory loss. "Dementia often requires that we don't use words," he said. "Words cease to be the mode of transaction, so we have to communicate in ways that are socially discouraged. For example, we're so cerebrally oriented that we don't touch each other. Alzheimer's gives us a chance to remember that the only thing that fulfills us emotionally is meaningful communication."
Our talk about Alzheimer's and caregiving slid into a talk about the value of eBay and social networking sites. Then I asked him to talk about the value of connecting with cognitively impaired people, and what society has to gain, "It's almost like asking what you gain from eating," he said. "I don't mean to be flippant here, but the fact that we would ask that question says a lot about what we have lost or forgotten. We don't know who we are outside this experience. Through this connecting, we will begin to remember who we are."
We quickly got into the larger issues. "We're being manipulated," he said, "turned into a population of consumers. This keeps us happily disconnected from who we are. We've forgotten in such a profound way that we can't understand anything unless we ask how we can monetize it."
If connecting with people with memory loss is so valuable, then why is a diagnosis of Alzheimer's or dementia so horrifying? It's related to the false idea of loss of sense of self, according to Michael Verde. "There are a lot of cultural assumptions around the idea of identity that make memory loss terrifying," he said, "and there's a vested interest behind the pictures of memory loss that terrify us. But it depends whether you think your identity resides in your neurons. I'll give you an example: my grandfather was very religious, so his identity was in being reunited with his family in heaven. He had no existential anxiety about his diagnosis of memory loss. Another example is if you live with extended family, then your identity is kin-oriented, and memory resides in the collective organism. The dread associated with memory loss will diminish if we remember that our identities live in our relationships and not in our neurons."
I'm more comfortable trying to understand the science than I am talking about identity, emotional connections and religion. But to move towards a fuller understanding of Alzheimer's and dementia, we need to have talks like this with people like Michael Verde.