The very thought of Alzheimer’s disease typically touches dark places in people’s hearts and minds, loaded as it is with frightening notions about loss of self for the patient, and loss of a shared history for loved ones.
Sociologist Patrick Fox, PhD, co-director of the UCSF Institute for Health & Aging, understands the reaction; he knows the suffering that families experience can be devastating. But he also has come to believe there may be more than darkness to Alzheimer’s.
“Due to powerful social forces that define our world, we see certain things in certain ways,” says Fox, a professor of sociology in the Department of Sociology and Behavioral Medicine in the UCSF School of Nursing. “Alzheimer’s is one of those things, but when we begin to challenge the social forces, we realize we may only have part of the picture.”
Fox’s recent book, “Conversations with Ed: Waiting for Forgetfulness: Why Are We So Afraid of Alzheimer’s Disease?” (Elders Academy Press, 2009), is an invitation to fill in the rest of the picture. Through a series of conversations with Ed Voris, a spirited man recently diagnosed with Alzheimer’s disease, Fox and his co-author, psychotherapist Nader Shabahangi, introduce a new and powerful voice into discussions of memory loss.
Voris’ voice and that of other patients can be useful tools for removing the blinders we’ve built up around Alzheimer’s. Before using such tools, however, we have to understand how society erected the blinders in the first place – how a condition that was once shrugged off as a normal part of aging was transformed into a dreaded disease.
How Alzheimer’s Became Alzheimer’s
In an article he published in the Milbank Quarterly in 1989, Fox documented the evolution of public perceptions about Alzheimer’s disease.
Through the early 1970s, the medical community largely saw the condition as a rare, early form of dementia, distinct from memory loss in older people (senile dementia). But then neurologists, taking advantage of electron microscopy, began asserting that nearly everyone with memory loss had a version of the same brain deterioration.
Right about the same time, the political and social view of aging was changing as well, reflected in federal legislation that in 1974 established the National Institute on Aging (NIA).
“Institutional structures like the NIA can facilitate the transformation of a phenomenon,” says Fox. “In health care, these structures and other interest groups often use something known as ‘the health politics of anguish’ to help researchers get money, insurance companies get reimbursement and patients get attention. But to leverage this phenomenon, you need a disease that affects a lot of people.”
Robert Butler, the NIA’s first director – a Pulitzer Prize-winning author, psychiatrist and gerontologist – recognized that Alzheimer’s could be a rallying cry for his community and his new organization. After all, researchers had already made clear that most forms of dementia could legitimately be labeled Alzheimer’s. As such, the disease constituted an epidemic, with some key figures projecting that it was the fourth or fifth most common cause of death in the United States.
Seizing on that information, Butler encouraged both the formation of a voluntary, external organization (eventually the Alzheimer’s Association) – to mobilize resources and influence decisionmakers – and a disease-specific research focus because the carrot of a potential cure within 20 years gave politicians a reason to fund.
In theory, this intense mobilization benefited both of the primary interested parties: the biomedical researchers and the family advocates who wanted better care for their loved ones. But the biomedical approach quickly came to dominate discussions, due to some simple political realities – not least of which were the power of the medical establishment and the fact that it’s less expensive to fund research than it is to establish another entitlement for long-term care.
Nevertheless, as a way to raise awareness and research dollars, the tactics were an unqualified success. “We accepted the disease frame,” says Fox. “People with memory loss became poor, lost souls who need a cure.”
Thirty-six years later, while some therapies can slow progression, there is no cure, and what was once a normal part of aging has become a feared illness that involves a steady stream of doctor’s visits and medications.
The Patient’s Voice
None of this discounts the disease frame’s advantages, which include identifying the reasons for a loved one’s demise and offering some hope for a cure.
“But the medical model also is a form of dehumanization,” says Fox. “A person’s death is an opportunity to cut their brain open. That may advance knowledge, but it truncates our openness to seeing the person with the disease. Nor does it help any of us understand the meaning of these changes beyond the negatives.”
Part of the challenge has been that until recently, people with Alzheimer’s could not speak lucidly for themselves. Yet, as medical advances enable us to diagnose Alzheimer’s earlier, the patient’s perspective has begun to emerge.
“Conversations with Ed” is an important part of that process, and it raises an important question: “What if, instead of focusing entirely on what the person can no longer do, we focus on what they can do and still enjoy? What if we reconceptualize the disease?” asks Fox.
Or, as Ed Voris says, “When I received the information from my doctor that I had dementia, I was about as low as a snake’s neck. But then it’s been one generous thing after another.”
The conversation about how to reconceptualize the disease is still in its early stages, but ideas are starting to flow. For example, some caregiving communities are accommodating behaviors, like hoarding, that occur with Alzheimer’s.
“Others might plant a ‘forgetfulness garden’ where people can sit and smell the plants,” says Fox. “We’re so tied to things like language, but what about touch or smell?”
Researchers have noticed that some patients demonstrate artistic ability that they’ve never tapped into before.
Perhaps even forgetfulness itself has more value than we realize. Fox describes a woman approaching him after a book reading to say that despite her own sense of loss and the practical difficulties of caring for her mother, she’d come to understand how deeply anxious her mother had been throughout her life – except in her final years with Alzheimer’s.
“These voices and new understandings help us think about what we can do if we can’t find a cure,” says Fox.
Given a rapidly aging population, it’s a critical question – one that challenges us to press against the narrow societal framing of Alzheimer’s that has prevailed for a generation.
“The most difficult power to disrupt is institutional power,” says Fox. “But if we’re going to sustain the idea that people with Alzheimer’s are still human and should be afforded their dignity, we need to disrupt the frame.”
Photos by Elisabeth Fall/fallfoto.com