In my last post, I wrote about how researchers are beginning to question whether Alzheimer’s is really one disease. A different view of the definition of Alzheimer’s naturally leads to a different view of what we should do about it:
1. If Alzheimer’s is a disease, we need to continue to try to find the cure for it.
2. If Alzheimer’s is cognitive dysfunction caused by multiple aging-related conditions, we should shift our focus to steps we can take to prevent those conditions.
Dr. Peter Whitehouse, Professor of Neurology at Case Western Reserve University, is one of those who holds the second view. Because he doesn’t think Alzheimer’s is a single disease, he believes it’s unlikely that researchers will find a “cure.” He’s concluded we should focus resources on care and services for people with cognitive impairment, and on prevention, rather than searching for a “magic bullet” cure. “Care needs to be dominant over cure,” he says.
“This disease creates turmoil in 99.9% of the families who are dealing with it,” he says. “While ‘bench’ researchers run around chasing their molecular tails, people who are living with the disease as carers and carriers battle with themselves and each other.
When will more attention be paid to this real problem and less to the conditions of nude mice? I realize both areas need research, lots of research. In the mean time millions of people are struggling with the psycho-social consequences of the disease.
The vision of a world without Alzheimer's is compelling. Shouldn't the cries for help from people confronting it be just as compelling? There needs to be a more equitable split in research dollars between tomorrow's and today's issues.”
As I think through the care versus cure question, I wonder what a decision to shift resources away from research would have meant for my dad, whose cerebral amyloid angiopathy (CAA) caused microbleeds in his brain that led to his dementia and death. I don’t think the preventative measures we talk about now (healthy diets, exercise, staying engaged, etc.) would have made a difference for him. Basic research into the causes of and treatments for CAA and Alzheimer’s would have helped him more.
But in the last few years, research facilities have been forced to delay Alzheimer’s-related experiments and lay off scientists because they can’t get funding. With money already scarce for Alzheimer’s research, do we really want to shift resources from cure to care?
Lisa Genova, the neuroscientist and author mentioned in my earlier post, doesn’t think so. “As a neuroscientist who understands the biology of this disease and as someone who knows the researchers who are driven and dedicated to finding a cure, I honestly believe that a cure for this disease is within grasp, and to take funding away would be a crazy, horrific mistake,” she says.
Jeanne Lee, a DASN member living in Hawaii, and author of the book Just Love Me: A Life Turned Upside-down by Alzheimer’s, doesn’t want research funding reduced, but would like to see it redirected. “I do agree too much money is spent on the later stages of Alzheimer's or dementia,” she says. “The research monies need to go towards the other end of the disease when WE are still capable of knowing what is happening in our lives. We have medicines for early stages of cancer, diabetes and other diseases, and sometimes they’re caught early enough to be cured. This is what we need for Alzheimer’s and dementia, so why would you say research is not necessary?” Jeanne was diagnosed with dementia of the Alzheimer’s type in 1995.
Many scientists agree with Jeanne that research must focus on stopping dementia long before onset. Dr. Whitehouse has specific ideas of how we should address research on early medical interventions. “I’d prefer to see research on healthy aging, and understanding the value of basic preventative measures, such as physical exercise,” he says. “Many of these measures are good for a lot of things besides Alzheimer’s, so the money would be better spent.”
On this aspect, Jay Smith, another DASN member mentioned in my last post, agrees with Dr. Whitehouse. “More research should be done to identify and isolate the various environmental and lifestyle causes of the disease - diet, nutrition, life style, stress, genetics, environmental toxins, etc. - as has been done in diabetes, heart disease and cancer over the past twenty years,” he says.
Other DASN members don’t like the care versus cure question. Carole Mulliken, a former teacher and school counselor diagnosed with vascular dementia at 59, says that, “…in most cases, framing a question in ‘either or’ format guarantees a false conclusion. To tie ourselves up in deciding which of the two is more important eliminates the possibility of putting energy in to multi-faceted responses.”
Chuck Jackson another DASN member who has been diagnosed with early onset dementia agrees. “If we have a medical cure,” he says, “or medical treatment that stops progress of the disease in early stages, then we won’t need expensive care facilities after a certain amount of time. The bottom line is how to facilitate both care research and medical research.”
Richard Taylor feels the same way. “It's the wrong question to ask. The crucial question is why are there so few dollars that a choice has to be made. It's tragic, it's irresponsible, and everyone should be ashamed and angry we all aren't doing more to address the consequences of this plague.”
But if the current trend of reduced government spending for Alzheimer’s research continues, and private donors don’t step up with more donations, we’ll have to make a choice between cure and care.