The New Yorker on Dementia: Crisis in Scientific Research and Progress in Caregiving
The peer-reviewed article may be the coin of the realm in academic science, but the high profile magazine article is the bellwether of popular attitudes toward health, medicine and disease. Thus it’s notable that The New Yorker, one of the few remaining popular periodicals aimed at well-educated general readers, recently published two major articles about the search for new approaches to Alzheimer’s and dementia. One focuses on the lack of progress in scientific research, and the other on encouraging developments in nursing home care.
Jerome Groopman’s “Before Night Falls,” which appeared in the June 24 issue, aims to describe the current state of research on Alzheimer’s disease and the search for new directions. Groopman holds a prestigious medical research chair at Harvard Med, but is more widely known as the author of a number of bestselling books that explore the experience of illness, the often tangled relationship between doctors and physicians, and the inherent difficulties of the diagnostic process. Groopman’s popularity is well-deserved. He is an excellent writer, and here he provides a compelling description of the struggle of leading Alzheimer’s researchers to find a viable direction following “three decades of Alzheimer’s research [that] has done little to change the course of the disease.” But Groopman’s qualities as a writer and critical observer of medicine make the limitations of this article all the more disappointing.
Groopman depicts the Alzheimer’s field as essentially split between two camps – the majority of researchers who continue to believe that the key to the disease is the excess accumulation of the protein beta-amyloid that ultimately forms plaques in the brain, and the smaller group of dissenting researchers who call instead for a focus on the tau protein involved in the formation of neurofibrillary tangles or some other putative cause, or who suggest that the disease is simply too complex and scientific understanding too limited to warrant focus on a single target.
The article strikes a fair enough balance between these two camps. It focuses on the work of champions of the amyloid orthodoxy like Dennis Selkoe and Reisa Sperling, and especially on the emerging emphasis on early diagnosis and prevention in the wake of the failure of anti-amyloid drugs to improve the cognitive functioning of people who have been diagnosed with dementia. But it also gives ample space to the views of prominent critics like George Perry and Peter Davies to explain their doubts.
Indeed, the article is far from the sort of naïve expression of fervent belief in the inevitability of medical progress that is all too typical of medical journalism today. It does not gloss over the uncertainties, risks and costs involved in the new emphasis on early diagnosis and treatment targeting amyloid accumulation. Moreover, the personal and societal consequences of Alzheimer’s are depicted as so grave that, as the title suggests, the overall tone of the piece is more gloomy than triumphant. The final section of the article reiterates the apocalyptic demography that characterizes so much Alzheimer’s advocacy: the looming economic burden of the disease, reckoned to be more than a trillion dollars a year by 2050, makes spending billions of dollars on research, whatever the uncertainties, seem like the only rational course of action – even to budget hawks like Republicans Eric Cantor and Newt Gingrich. Groopman gives researcher Reisa Sperling the final, almost desperate word:
I think it’s a war – a war against Alzheimer’s disease, and we are losing, so I’m going to use military terms,” she said. She argues that those who are concerned about an ill-conceived rush to preventive trials lack the appropriate sense of urgency. “The idea of waiting another ten years, just to study the natural history of Alzheimer’s disease, is not tenable,” she said. “These are the dilemmas. How do we make the best possible decision right now, in the absences of all the data we need?” She paused for a long moment, then said, “My biggest fear is that we are just doing too little too late, and that even if we move sooner, we are not lowering amyloid sufficiently. So we will get to the end of the trial and say, `Well, here we are, and we have the same conundrum. We just did not do enough.’”
There are two glaring omissions in Groopman’s article. First, there is virtually no discussion of big pharma’s role in the development and continued dominance of the amyloid approach. Critics like David Healy, Carl Elliott, John Abramson and others have documented the distorting effects of pharma money on medical research, and several authors in a book on dementia treatment I co-edited show that this happens in the Alzheimer’s field as well. While reasonable people may disagree about the effect of the pharmaceutical industry on medical research, it is inexcusable to simply ignore the issue in a story of this length and prominence. Second, there is absolutely no mention of the many studies suggesting that non-pharma approaches to overall brain health like diet, exercise, and social engagement can effectively lower the risk of dementia, most recently two studies showing that dementia rates in Denmark and the United Kingdom may actually be falling even as the population ages. Such approaches, which anecdotally at least appear at least as promising as any drug, have the advantage of being safe and cheap – and something we should want to do for other compelling reasons anyway. It is surely worth asking why Alzheimer’s researchers working to establish a new regime of early diagnosis and prevention would not want to rigorously explore how non-pharma approaches could be part of that strategy.
As an antidote to the feeling of gloom and desperation in Groopman’s depiction of the search for an effective medical treatment for Alzheimer’s, one should turn to exciting developments in the field of nursing home care that are promising to dramatically improve the lives of people with dementia and their families today. These developments are described in great depth by Rebecca Mead in an article called “The Sense of an Ending” that appeared in the May 20th issue.
Mead focuses on the work in dementia care at the Beatitudes Campus in Phoenix, AZ, and the NYC chapter of the Alzheimer’s Association that is exploring ways to incorporate its approach in nursing homes there. Beatitudes is part of a culture change movement in nursing home care that encourages moving away from a medical model of care focused on treatment and efficient service delivery, to a more holistic, person centered approach to dementia care that aims to create environments that minimize distress and value the enjoyment and meaning inherent in the non-cognitive human capacity for sensory pleasures and intimacy. “Without any immediate prospect for a cure,” Mead writes “advocacy groups have begun promoting ways to offer people with dementia a comfortable decline instead of imposing on them a medical model of care, which seeks to defer death”
But the culture change movement is about more than making people with dementia comfortable as they await the release of death. It is based on a profound re-valuing of the person with dementia, focusing not just on the cognition that is lost, but the physical and emotional capacities that remain, capacities that might even be enhanced in dementia. Mead writes that Tena Alonzo, director of education and research at Beatitudes, views people with dementia as “closer to the higher being. This is who they are: real, honest, and sometimes raw. There is no ability to reason, or to cover up who you really are. And so, for much of the time, you see the loveliness of the soul – it is bare for everyone to acknowledge.”
Seen from this perspective, the aim of caregiver is no longer to change or manage the person with dementia, but to overcome the anxieties and defenses that prevent caregivers from developing real, life-giving relationship with who the person with dementia has become. Mead acknowledges the difficulty of this, especially for children or partners who cannot help but grieve the abilities that the people with dementia they love have lost. Nonetheless, one can see in her rich description of the world of care at Beatitudes what caregivers can gain from these relationships. Mead describes a woman who spent most of every day walking up and down the corridors. In a typical nursing home, this behavior might be seen as pathological and worrisome, a risky problem behavior to be managed and perhaps suppressed. But the staff learned that she had worked in retail for decades, and determined that she was not going to stop walking just because she was in a dementia unit, so they sought merely to minimize her discomfort by considering additional pain killers when her feet appeared to be painfully tired. Mead describes her feelings when she interacted with her:
I spent some time on day walking along the corridor with this woman, into the sunroom and out of it again. Her face brightened at the company, and she was eager to talk, even when her side of the conversation devolved into singsong nonsense. Sometimes she stopped to shimmy for a moment, and I could imagine what a figure she must have cut at a dance. Being in her company triggered memories of being a child alongside my grandmother, now long dead. I recalled the at-a-loss-for-words feeling that I used to experience with her, even as she made me feel held within a sphere of affection. This woman’s powers of cognition were limited, but her capacity to experience emotion seemed unimpaired, and she demanded engagement the way a small child does: it made no more sense to resist her impulse toward intimacy than it would to withhold a smile from a baby. When she grasped my hands and told me I was perfect, I told her that she was perfect too.”
What will strike many people as most remarkable about Beatitudes is that is cost-effective. Mead notes that despite the innovations that make Beatitudes a much more gracious place to live than the typical nursing home, the average cost of care is roughly the same. Not least among the ways that a person-centered approach to dementia care can save money is by reducing the use of expensive anti-psychotic drugs, which can cost hundreds of dollars per month for every patient on them. Mead quotes Alice Bonner, director of the Center for Medicare and Medicaid Services: “People are starting to realize that, with some creativity and curiosity, we can figure out other ways of taking care of people with dementia.”
Taken together, these two articles suggest a change in emphasis. The future of the dementia field may lie less with developing high-tech medical interventions aimed at curing or preventing dementia, and more at developing and practicing innovative models of care. Perhaps we can learn to see dementia as less of a personal and collective apocalypse than a great human challenge that can bring out the best in us.