Margaret Lock Offers Dementia’s Realism Instead of Hope

Cynthia Martin writes that unlike cancer’s new push to accelerate treatment (recently launched under the banner Cancer Moonshot2020), there is no Alzheimer’s MoonShot2020.

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William Utermohlen’s self-portraits, executed after his diagnosis of Alzheimer’s disease, are haunting. Not so much the first portrait he did in 1996 when he was 60 with its orange swaths and questioning eyes, but subsequent paintings and drawings charting a course of degradation and jumbling angst. These works of art, like the Alzheimer’s they document, are difficult to forget. I want to know – do the portraits exhibit impressions of himself or show decline in his artistic abilities? His paintings are a sombre end to a sobering speech given by visiting speaker Dr. Margaret Lock – the last in a series of NTE: Impact Ethics events for Alzheimer’s Awareness month (January 2016). Unlike many talks on Alzheimer’s and dementia, this one doesn’t end with hope, a hint of a cure or optimistic timeline – vaccine by 2025! – confidence via an exclamation mark.

Like researchers, every person in this packed hall has come seeking clues. Some of us have also come out of fear; we’ve come because of our unsettled guesses as to who will wear diapers and who will change them. More generally, we have come to hear Lock explain the conundrums of science. Lock is a realist and does not pander; she is firm in her belief that “research is not making the strides we’ve heard about.” Lock tells us that Alzheimer’s, the most common form of dementia, is best thought of as a “multi-form syndrome.” She also explains that it is seriously underfunded, “despite billions of dollars invested in medical research.” For example, Alzheimer’s “has not received anywhere near the funding” for cancer and cardiovascular investigations.

The author of numerous books including The Alzheimer Conundrum: Entanglements of Dementia and Aging, Lock’s projections are grim. She details the disease’s history and research examples dovetail with population statistics that seem impossibly high. Worldwide, some 50 million people in low to high income countries currently have Alzheimer’s. This total is expected to be 127 million by 2050 – that’s currently Japan’s entire population (a country citing lower dementia numbers than many other countries). But, what is a true diagnosis of Alzheimer’s? How accurate are the statistics, especially when Lock says another 50 million worldwide are undiagnosed?

"Self portrait with Saw" (1997) by William Utermohlen « Courtesy of Chris Boïcos Fine Arts, Paris »

“Self portrait with Saw” (1997) « Courtesy of Chris Boïcos Fine Arts, Paris »

Faces in the crowd depict confusion. We began paying attention to Alzheimer’s decades ago as information tumbled out through the media from doctors, agencies, and friends in that jokey-aren’t-we-all-forgetting community. But what Locks speaks of isn’t promising.

Lock believes “dementia is not one single entity, it is a complex set of problems, a phenomenon.” She advocates for improved care, more humane public health approaches to prevention and research lines other than Amyloid β paths. She muses that we “might be heading down the wrong road putting most of our investigation into that.” Then there are epigenetic findings referring to “heritable traits” accumulated throughout life, autopsies on the brains of nuns, Francisco Lopera’s early onset familial study in Colombia. A curious statistic that Lock glosses over is that “virtually 100% of those with Down Syndrome will develop Alzheimer’s disease.”

Many older adults seem to have cognitively normal functions. Yet when autopsied, neuropathological damage shows Alzheimer’s lesions littering their brains. Lock wonders if these people are “on their way to developing the disease, or is this an extreme form of normal aging?”

Lock ends her talk calling some predictions about eradicating Alzheimer’s “a crock.” She advises the audience to call “facts into question,” while dangling a question about the role of “big pharma.” In the Q&A that followed, a man tentatively asks if crosswords help and isolation hurts. Lock agrees with his suggestion that social and physical activities need to be prescribed. By now, I’m feeling like I’m driving a souped-up wreck through a series of “s” curves around continual sharp corners. I’m searching for a cure that many like to say is “just around the corner,” really! the next!

Before sending us into the dreary night, Lock shows six slides of Utermohlen’s self portraits and the collective mood softens. The attention every speaker desires is palpable, for here is an individual representing, in a very concrete way, all that she has spoken of in the infinite. Diagnosed with Alzheimer’s in 1995, Utermohlen’s portraits span five years, the last shown portrait dates from 2000, well before his physical death in 2007. As I reflect on these pictures, I realize that whether charting artistic debility or impressions of his decline, what’s achingly clear in these self-portraits is one individual’s progressive enfeeblement. Alzheimer’s disease has confiscated the art and the artist.

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Cynthia Martin is the author of the Impact Ethics blog post “Stem Cell Cartoons Exhibit Stalled Knowledge Transfer” (December 12, 2013).