Last night, I dreamed Dad was getting better. He called to say he was back home, and sounded upbeat. He was finding words more easily than when we last had talked. I immediately started thinking about things we could do to speed his recovery: green tea, meditation, maybe even a little red wine. More than a year after Dad died, I'm still dreaming about a cure.
I'm not alone in my dreams. "I really thought that we would have a cure before I had to worry about onset. I was terribly wrong," says Chuck Jackson, a former employment counselor whose mother and nine of her siblings had early onset Alzheimer's. Four of his cousins have died of the disease, and how he, his brother and three of his cousins have been diagnosed with it.
This talk of a cure is echoed around the world in hundreds of labs and millions of homes. But I don't think we're anywhere close.
If you are diagnosed with Alzheimer's today, your doctor may prescribe Aricept, Namenda or other medicines. The most these drugs will do is delay symptoms in some people; they have no effect in others. Treatment won't change the underlying degeneration of your brain, or halt progression. If your family can't care for you, there's little chance you'll get good care in a nursing home, at least in the US.
This bleak reality has prompted Chuck Jackson and other members of the Dementia Support and Advocacy Network (DASN) to speak out about Alzheimer's. The majority of DASN members are persons with dementia or their care partners. Individual members of the group are working with organizations, the media and lawmakers to raise awareness about Alzheimer's.
"If doctors themselves would be more aware, I think they'd find there are a lot more afflicted with Alzheimer's disease than they realize," says Sarah Christianson, a DASN member and former office manager diagnosed with early onset Alzheimer's and frontotemporal dementia.
But Dr. Peter Whitehouse advocates something different: a complete redefinition of Alzheimer's and how we treat it.
Dr. Whitehouse is Director of Integrative Studies and Professor of Neurology at Case Western Reserve University, and author of the forthcoming book The End of Alzheimer's [St. Martin's Press]. He is one of several scientists and doctors who have mentioned to me that they don't think Alzheimer's is a single disease.
"People suffer enormously from what I used to call Alzheimer's," he says. "But as a clinician, I'm aware of the variability of dementia symptoms and progression, so I'm suspicious of the claim that this is one disease and that it's different than aging."
Expressing doubts about Alzheimer's status as a disease is controversial, both among researchers and among persons with dementia. "Terribly wrong-headed," says Jay Smith, a DASN member from California who is working to organize a conference for people with dementia. "That kind of thinking (simplistic, not based in reality) is just dangerous." Jay was forced to leave his job when he was diagnosed with early onset Alzheimer's.
Lisa Genova, another DASN member, neuroscientist and author of Still Alice, a novel about a fifty-year-old cognitive psychology professor diagnosed with Alzheimer's. "This IS a disease," she says, "and not just a normal part of aging."
"Alzheimer's doesn't just happen to people in their 70's and 80's; it happens to people in their 40's & 50's and younger," says Jaye Lander, a Pennsylvania-based former Wall Street executive diagnosed with early onset dementia of the Alzheimer's type. "I turned 60 on Thanksgiving but have had brain tissue atrophy visible in MRI's for several years. As long as our brains start disintegrating on us in our primes, I think it is a terrible disease and not just a normal function of aging."
Many researchers assume early onset and late onset Alzheimer's disease are similar, but Dr. Whitehouse's comments were not meant to address early onset Alzheimer's. "Of course, if people are getting it in their 40s and 50s, it's hard to say that's aging. It's more reasonable to call what these people are suffering from a disease," he says.
He is much less certain about whether late onset dementia is really one disease. "As a clinician, I now avoid using the word Alzheimer's," Dr. Whitehouse says. "But what do I put on a billing form, and what do I say to a patient? The answers are more complicated than we like."