By Peter J. Whitehouse
Alzheimer’s is an intractable, wickedly complex problem that requires new imagination. Let’s start by thinking of Alzheimer’s as a sort of “elephant in the room” that blocks creating a more positive view of aging. The word itself is so fear-inducing that it limits our ability to see new perspectives. To continue the pachyderm theme, perhaps our vision is further limited as it is in the famous fable of the three blind men who are trying to describe an elephant in a zoo, based on selectively touching its different parts. One thinks it is long and thin (like the trunk), another that it’s flat like an ear and the final, visually disabled person feeling the tail only, describes it as being like a rope.
For decades, the dominant paradigm of Alzheimer’s has promoted the belief that we are dealing with a singular well-defined beastly condition subject to eventual “cure.” The drug development sector has laid its hands on amyloid and built a theory around the reductive concept of “one gene, one protein, one disease, one drug.”
Alzheimer’s: A Complex, Heterogeneous Challenge
But it turns out that Alzheimer’s is more complicated—it’s not just one thing, but rather various processes that are intimately related to brain aging that we will all experience to some degree over time. A more accurate analogy might imagine the blind men in the zoo are actually touching different parts of different animals, while trying to come up with a singular definition of what “it” is.
Alzheimer’s is a challenge that demands new, imaginative stories. A main component of any new story must necessarily be that Alzheimer’s is heterogeneous and not a single entity. Whether one is a molecular biologist, drug company consultant, social science researcher or lay advocate, those working on the condition need to treat their disciplinary “blindness” to get a clearer picture.
Our vision has been limited by rose-colored glasses, the glitter of golden profits, the narrowness of our microscopic fields, but mainly by our use and misuse of certain words and associated impoverished ideas. We need a new set of wide-angle and telescopic lenses that not only allow us to see the whole zoo of elephants and other species, but also to bring other social challenges into our vision for the future.
Medical labels such as subjective cognitive impairment, mild cognitive impairment and even the Alzheimer’s label itself come and go in different forms, but are all aimed at ceding control of our cognitive aging to techno-science. We cage our imaginations in words invented to provide security and certainty in a fearful and seemingly random world, but at the same time restrict our freedom of thought.
And even more powerful than just words are the dominant metaphors we use. With Alzheimer’s, we declare “war” on something that we decide to call a “singular disease.” We create an army, pour resources into it, fight bravely, promise quick victory and feel satisfied that we are doing everything we can to win for our tribe and ourselves.
But are we? And are there other ways of thinking about age-associated cognitive decline? As all of us will notice throughout our lives, cognition changes with age (e.g., how do you, dear reader, perform on quick-reaction and attention-demanding video games?), and we will find ourselves wondering just what the boundaries of “normal” are. My friends the Alzheimer’s experts have not figured out the boundaries scientifically, either.
Other Ways to Approach Alzheimer’s
That said, new and hopefully more morally clear vistas are emerging—through health, not disease, approaches; through public health, not molecular reductionism; and through community empowerment, not narrow expertise. Social health approaches, not medical approaches, are leading to falling rates of dementia in some places and to improvements in quality of life.
What we all need to keep our brains healthy and to fend off disease labels is a purposeful and engaged life full of people we love. Basically, we are talking about how to (re)humanize people with dementia. This is ironic because a better strategy would be to not dehumanize them in the first place. They are and remain human despite the power of medicalization, the life-destroying effects of diagnostic labeling and the often irresponsible fearmongering, labeled as advocacy, to the contrary.
As articles in this issue of Aging Today demonstrate, there are many effective ways to deepen our humanity by thinking about Alzheimer’s and dementia differently. Programs in community, especially those involving education, nature, physical activity and the arts, are key. Understanding the language we use and incorporating broad cultural sensibilities into the social aspects of care and life in educational programs are critical. The arts are essential to our humanity and hence, of course, to people with dementia. Incorporating arts in Dementia Friendly Communities will help us all be friendlier with one another. Engaging children and youth (and other living creatures) into our “communities for all ages,” and recognizing that ageism, i.e., discrimination on the basis of age (not just elderhood), also affects them, will enhance our efforts to become more human in livable communities.
One such a model for this form of brain-enhancing activity that incorporates many of these essential elements is intergenerational education. Children and grandparents have always learned from each other. Can we create schools and other social institutions built around intergenerational relationships and shared stories in which people help each other learn about important topics, such as how to be good citizens and live fulfilled lives that contribute to a sustainable and flourishing future?
In intergenerational schools in Cleveland, one illustrative project involved sharing stories about caring for the local nature center. In the 1960s, elders saved the nature center (where students today visit to learn about ecology) from a corrupt politician who had been planning to build a highway through it. Photography and story-sharing were at the center of the project. Some of those activist elders when interviewed by children in our intergenerational program had dementia, but still possessed rich long-term memory stores. This passing of activism across generations might be an ideal brain health (and metaphorical heart health) activity.
Our ultimate intergenerational responsibility is to sustain our human communities and those of other animals, including elephants. It is said that elephants do not forget, but humans certainly do. Remembering our past through the eyes of elders, and envisioning the future through the imaginations of all of us, especially youth, will help to create a more realistic and brighter vision for the future of brain aging. We cannot do this without re-imagining Alzheimer’s.
Peter J. Whitehouse, M.D., Ph.D., is a professor of Neurology at Case Western Reserve University, staff neurologist at the Brain Health and Memory Center and co-founder of the Intergenerational School in Cleveland, Ohio.
Editor’s Note: This article appears in the January/February 2019 issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.