The Intergenerational School. Credit: Peter J. Whitehouse. All rights reserved.
How can we love or do justice to someone who is considered socially dead, someone who is a shadow of their former selves and no longer contributes to their community?
That’s the message the mainstream scientific and medical communities send out about Alzheimer’s: it’s a terrible disease, one of the worst forms of dementia that causes the loss of thinking abilities, ruins lives and threatens the health of economies. The Alzheimer’s label creates fear by separating human beings into two separate categories: those who are still fully alive without the disease, and the unfortunate “zombies” who suffer from it.
This separation is an illusion, designed to benefit drug companies and medical professionals. It obscures the need to restructure society in order to ensure that all people can get the support they need as they grow older, without placing an unfair burden on traditional care-givers, especially women.
“Medicalization” - the dominance of medical science and economics in debates over aging and its associated challenges - limits our imagination about how memory loss in older people can be addressed in families and communities. Diseases are seen as disorders of the genes and molecules that only drugs can alleviate. The goal is to find a cure so that Alzheimer’s is terminated. Yet rarely do we ask what such a technological fix would look like or how much it would cost: how do you cure a brain, let alone an older one?
By contrast, placing love and justice at the center of the conversation expands our moral imaginations, and clarifies the social and political responses that are the only viable solutions to the challenges of dementia. In order to foster a movement of this kind we must first understand the power and influence of the techno-scientific world-view that focuses on treating disease instead of promoting health.
Dementia as a concept has been evident since the first writings of human beings. The early Egyptians and the Greeks noted that some of their elders lost their memories over time, particularly their memories of recent events. As a medical label, dementia emerged in the mid-1800s in Western Europe. “Alzheimer’s disease” wasn’t invented until 1910 – by Emile Kraepelin in Germany in his influential text book of psychiatry, where it was listed as a dementia in younger people. This was somewhat to the chagrin of his subordinate colleague Alois Alzheimer who was unsure that he had defined a separate disease at all.
Over the next 100 years, the term “Alzheimer’s” was promoted by scientists, clinicians, and others through a web of power and influence that extended it to millions of people around the world, under an expanded definition that now included older people. Kraepelin sought prestige for his department in Munich, and wanted to dominate the science of brain psychiatry that emerged in the early 20th century by influencing the structure of diagnostic categories known as “nosology.” There’s a direct parallel here with attempts by modern psychiatry to control the definition and treatment of mental illness at the turn of the 21st century through the ill-conceived and much-criticized “Diagnostic and Statistical Manual V” of the American Psychiatry Association.
Both were attempts by small groups of professionals to label more and more people as members of the class they ostensibly served. In actuality this process also promoted the social influence of these professionals, and their ability to profit from categorizing people in this way.
In addition, both movements were about imagined scientific progress, professional hegemony, and the medicalization of aging. Yet the National Institute of Mental Health has flatly contradicted the claim that modern psychiatric diagnostic categories are based on adequate science. Modern psychiatry may incorporate language about patient-centered care (a technocratic version of love perhaps) and mental health equity (or justice), but it remains rooted in an unholy alliance between scientism and capitalism.
The business model of the pharmaceutical industry is based on expanding markets for their products by labeling more people as “mentally ill” and incorporating immoral and illegal practices such as off-label prescribing. New categories of mental illness must be constantly added – like “Asymptomatic Alzheimer’s disease”, the latest example. The Alzheimer’s field pushes early diagnosis of these new, so-called diseases as an unchallengeable good, yet it fails to ask the most basic questions about the implications of doing this for health care costs and priorities. Improving the quality of care for existing conditions is ignored or downgraded in the search for new drugs and new markets for them. The opportunity costs of miss-focusing our efforts in this way are huge: the ubiquitous illusion of scientific progress is not only inefficient, it’s also unjust.
What happens when scientific solutions do not emerge as promised?
The principal hope for people with cognitive challenges like Alzheimer’s lies in reinventing community, re-distributing responsibilities for caring for one another, and finding better ways to finance the support structures that are needed to ensure that these responsibilities are shared by everyone and not simply “expected” of women. We have to rethink the nature of aging in this context, and with it our ideas about the role of science in society, the role of intellectual property rights and money, and ultimately, the nature of our humanity. People with memory problems should be integrated into their communities as much as possible, not separated from them because they suffer from a “disease.”
There are plenty of successful examples of how this can be done – like the “Intergenerational School” in which people with “dementia” volunteer and read or tell stories from their lives to children. A few years ago, the school’s “volunteer of the year award” was given to someone who couldn’t remember that she came to the school each week – but why should that matter? In the moment of her relationship with the child, she was very much present.
The movement to create “dementia-friendly” communities includes many such schools and other empowering organizations. They focus on promoting brain health through purposeful activity, good diet and physical exercise, which are all things that help to prevent cognitive deterioration as we age as best we can. But we must also recognize the ultimate limitations of the human mind and body, and learn to cope with them. We all share the reality of being cognitively and physically frail and mortal creatures. That common humanity should help us to focus on extending love, care and justice in our relationships with each other, not to obsess on the latest wonder drug in order to avoid our responsibilities.
Challenging Alzheimer’s is, ironically perhaps, a lever to create much good in the world, if we can transform the way we think and act. The benefits of reimagining the cognitive challenges of aging will be enormous: understanding that caring relationships are better than drugs; appreciating that everyone faces cognitive challenges and that we all need the same sense of purpose and passion in life regardless of the labels that others attach to us; recognizing that our priorities must shift away from genes and molecules towards improving the environment in which we grow old; and facing up to the need to advance the cause of future generations of older people.
Dementia-friendly communities with access to healthy food and better forms of transportation are adult and child-friendly too – they are better for all of us and for the planet. The wisdom of the elderly, the appreciation of limits, and the importance of morality must be reincorporated into the language, experience and policy that surround the cognitive challenges of ageing. By doing so we can regain some of the humanity that has been lost to the excessively materialistic, death-denying world of hype and false hope that emanates from the unloving scientism and unjust capitalism of the contemporary dementia industry.