Alzheimer’s: Awareness Isn’t Enough
“If we just could increase awareness,” some of my friends with Alzheimer’s say, “funding would rise and the illness could be eventually controlled or eliminated.” I wish it was that simple.
Politics of Research Funding
As we live longer with illnesses that in the past killed us off quickly, the demands for research funding that would lead to their control and elimination increase. With limited federal funding, the demands on the money pie expand while its size may only increase slightly. The 8” pie capable of feeding four people, may increase to 10”, but the number of hungry people waiting for a slice may have expanded to 20.
It’s understandable that someone affected by, or living with a chronic or terminal illness wants more funding for their problem—even if it means less for another illnesses. And as someone who is living with prostate cancer, I, of course, believe my illness should receive the most money. Self-preservation is a powerful factor in justifying inequities.
But if for a moment we can put aside our own biases, we probably could all agree that the greatest number of yearly deaths or the number of people living with a chronic or terminal illness should receive the greatest amount of research funding. But even a cursory look at the latest NIH funding figures suggests other factors may be influencing priorities—especially with Alzheimer’s.
NIH Spending People
Amount Illness Living With It Yearly Deaths
$890 million Breast Cancer 2.6 million 40,000
$285 million Prostate Cancer 2.4 million 34,000
$226 million Lung Cancer 373,000 160,000
$381 million Cardiovascular 27.1 million 600,000
$3 billion AIDs 1 million 18,000
$450 million Alzheimer’s 5.4 million 82,000
Only cardiovascular illness (which includes various illnesses) has more people living with the illness than Alzheimer’s. And it’s estimated that over the next four decades, Alzheimer’s care will cost the United States approximately $20 trillion. Advocates would say, that based on the data, funding for Alzheimer’s should be at the top of the list. And many maintain that the path to a more favorable ranking is increased awareness.
The problem is that “awareness” follows a willingness to look. Without the willingness—because of fear or other factors—awareness often doesn’t occur. People tend to avoid things that frighten them. And Alzheimer’s is a big one.
A Lesson from Women
To understand how the fear of Alzheimer’s may prevent awareness, you can look at the history of research funding discrepancies between prostate cancer and breast cancer. While both kill approximately the same number of people each year, and both have the same number of people living with the illness, breast cancer funding is almost four times that of prostate cancer. So what could account for it?
I think it’s related to men equating what happens below their belt to who they are—their identity. In the late 1960′s, women and their families realized identities weren’t tied to body parts. Very bluntly, women knew they weren’t their breasts. Men, on the other hand, are still light years behind. I believe it was the willingness of women with breast cancer and their advocates to openly deal with issues of fear and identity that allowed them to increase awareness of the illness, which led to demands for increased research funding, which hopefully is leading to its elimination or control.
Acceptance Before Awareness
The problem is more insidious with Alzheimer’s. It’s not the patient who needs to struggle with identity issues—unlike many men with prostate cancer—but rather society.
When people with little understanding of Alzheimer’s look at someone who suffers with it, they see someone who they fear, or a person who has regressed to being a child, or most frightening, someone who they fear becoming. One person painfully described how when he told good friends about his Alzheimer’s, they gradually stopped coming by to visit.
The fear of what isn’t understood gets translated into isolating those with Alzheimer’s from a life filled with people with whom they’ve had a connection. It isn’t done because people lack compassion, but rather because they don’t understand what someone with Alzheimer’s is experiencing. And that uncertainty and fear can reduce awareness of the illness, which results in reduced demands for research funding, and delays its elimination or control.
I would guess that before breast cancer funding dramatically increased, it was proceeded by a changed view society—and men in particular—had of women with breast cancer. I think before research funding for Alzheimer’s can substantially increase, society needs to see the person with Alzheimer’s as someone who lives with a dreadful illness, rather than someone who is the illness, with all of the stereotypes that our culture attaches to it.
So yes, I agree that increased awareness is important. I welcome all of the impassioned pleas from Hollywood celebrities, pronouncements by politicians, hearings by senators, and even articles of support by writers like me. But, in the overall picture, unless society is willing to look at the person with Alzheimer’s with the compassion and understanding we would give to our mother if she had a debilitating illness, all the awareness in the world may not effect funding priorities, and worse, will just continue the isolation people with Alzheimer’s experience.