Abstract
Navigating Life with Dementia by James M. Noble, American Academy of Neurology, 2022, pp. 272.
I read Navigating Life with Dementia while actively assisting an older friend who is experiencing mild memory challenges in planning a course for his future. Once I finished, I handed off the book to he and his wife as a free resource— with a few major caveats.
Written by neurologist James M. Noble, the book is intended to be a practical tool for people like my friends who are trying to better understand, prepare for, and manage the uncertainties of life with memory loss. In this way, the book largely succeeds, as its 15 chapters cover an impressive amount of ground— offering straightforward, readable information on diagnosis, staging/progression, etiologies and causation, current and future treatments, prevention, and care. Noble intersperses his chapters with vignettes of aging adults who are grappling with the issues he raises, and this narrative device helps add human depth and complexity to the textbook scientific and clinical content provided in the handbook. A glossary offers readers an extensive definition of concepts they may encounter in clinical settings.
Overall, Noble has written a fairly standard book that largely accomplishes its mission to orient people to the current state of the field. While he perhaps leans too strongly on biomedical orthodoxies, and thus risks instantiating an overly-medicalized view of brain aging for his readers, Noble’s handbook is a better resource than anxiety-ridden Googling might otherwise afford. At times, he breaks from a conventional biomedical focus in a refreshing manner. In addition to the aforementioned humanizing vignettes, chapters on lifestyle/non-pharmacological therapies and advanced care planning are useful, and not typically foregrounded in medically-oriented biomedical texts. Noble shares practical advice on prevention, for instance recent recommendations also echoed by the Lancet Commission on Dementia Prevention, Intervention, and Care [1] and others [2] that around 40% of dementia cases could theoretically be prevented or delayed if key risk factors (obesity, diabetes, hypertension, depression, physical inactivity, smoking, poor sleep, hearing/visual loss, etc.) are addressed. Attention is given to Cognitive Reserve, the somewhat nebulous yet quite compelling finding that can powerfully encourage aging persons to keep their minds active and continue seeking novel learning/social experiences. In handing the book to my friend, I made sure to highlight these components of the handbook as particularly noteworthy.
Of course, as mentioned, I also passed along caveats— mainly concerning Noble’s tendency to treat particular issues with an insufficiently critical lens. For instance, the author does not adequately address the well-established neuropathological overlaps between brain aging processes and Alzheimer’s syndrome, relying instead on the well-worn trope of there being “healthy” versus “Alzheimer’s” brains. But it is the very nature of the heterogeneity of Alzheimer’s and its intimate relation to brain aging that makes the condition so challenging to treat or cure as a discrete “disease” [3]. Relatedly, Noble is also inadequately critical of the current state of biomarkers, none of which have yet proven valid or reliable, and also fails to give voice to uncertainties around controversial concepts like mild cognitive impairment (MCI). But readers like my friend should know the conceptual/practical challenges surrounding diagnosis (e.g., someone with elevated biomarkers or an MCI label does not necessarily progress to dementia) and also be aware of the industry incentives underlying diagnostics and so-called “pre-disease” labels and the ongoing professional debates about their clinical value. Such honesty and nuance about the ambiguity of our current predicament and the market-driven disease-mongering that occurs in modern medicine can perhaps even help de-medicalize brain aging and reduce fear, anxiety, and stigma.
Additionally, at times, the book conveys a tone of medical triumphalism and faith in scientific progress. For instance, in chapter 4, Noble gives a largely uncritical treatment of the amyloid hypothesis while only briefly alluding to the failures of anti-amyloid drugs. While he includes a section on the FDA’s embattled approval of aducanumab (a decision currently under federal investigation) in which he acknowledges concerns about its lack of efficacy and side effects, Noble nevertheless says this “represents a fundamental change in how Alzheimer’s is treated” (pp.65). But this of course presumes that amyloid is the disease, which is a major assumption, particularly given the near-100% fail-rate of anti-amyloid drugs over the last two decades. In addition to the disastrous high-profile failure of aducanumab [4], the recent falsification crisis in the field— in which investigations have revealed that an influential paper supporting the amyloid-cascade hypothesis was based on manipulated data [5]— is helping erode the certitude that has buttressed drug development via anti-amyloid platforms. Again, offering these sorts of disclaimers were necessary in my feeling comfortable sharing the book with my friend, and would have been useful qualifiers in the text.
With regard to other omissions, Noble does not reference recent data showing falling dementia rates in the US and five other Western countries [6]. While this is one of the more stunning findings of the last decade, demonstrating the value of public health approaches that address social determinants of brain health at the population-level, it doesn’t fit the apocalyptic cultural scripts of Alzheimer’s and thus tends to be conspicuously absent from discourse [7]. Navigating Life with Dementia is admittedly a self-help text, but the question of what we can do societally in terms of prevention and caring deserves greater attention. For instance, how do we collectively address current crises like lead in public drinking water (exposing tens of millions to a known neurotoxin), the lack of healthcare for millions of Americans (letting innumerable modifiable risk factors for dementia go unmanaged), and the absence of national long-term care insurance
Daniel R. George, PhD, MSc
Associate Professor
Penn State College of Medicine