Dementia Reimagined
Author: Tia Powell

Background

This wholesomely refreshing book on Alzheimer’s disease conveys a very pragmatic approach to a disorder that has defied all endeavours to fully understand its cause, and all attempts to curb its menace. The author expounds a rather unsentimental view of the disease which she acknowledges will be unpopular with the ‘good people working hard’ to combat it. The author is indeed blunt in her critique of the prevailing research paradigm of searching for a cure for Alzheimer’s disease, a strategy which she contends is ‘not based on feasible goals‘ and is ‘likely to fail‘. The book makes the strong argument that the focus on searching for a cure is hindering alternative approaches which ‘might actually get us closer’ to helping the victims of Alzheimer’s disease, and these include searching for interventions and tools that will slow down the disease and make its symptoms ‘more manageable‘. The author, a physician who has witnessed her mother’s suffering with the disease, was well-placed to set out a blueprint of practical measures which aims to make the experience of Alzheimer’s disease ‘less scary‘, ‘a little less lousy‘, and ‘a bit more joyful‘; this turns out to be an insightful breath of fresh air for a disease that at the moment follows an inexorably progressive course (pages 118-119 and 7-17).

Synopsis

The book presented a very insightful contextual account of dementia in which it traces the early history to the disease from the time when it was perceived as a possession of the devil and a ‘chaotic falling apart’. The author painted a graphic portrait of the time when dementia sufferers were often found ‘in jail, in workhouses, in shackles, and in mental institutions‘ such London’s Bethlehem Hospital (Bedlam), and it charted the  progress of these establishments as they transformed to early treatment centres which were nevertheless ‘as overcrowded as the jails and poorhouses had been in centuries past’. In depicting the relatively more recent history of dementia, the author particularly noted the insights of Solomon Carter Fuller, a relatively little appreciated scientist who she portrayed as a researcher who had ‘abundant intellectual curiosity and ambition‘, and as a genius who carefully and correctly observed ‘phenomena that others didn’t bother to inspect’. Asserting that his ‘standards for scientific evidence and reasoning’ were impeccable, the author described how Carter carried out detailed studies which enabled him to make the prescient conclusion that ‘plaques are neither necessary or sufficient for dementia in the elderly’; this opinion, the author pointed out, differed from that of his better-known mentor Alois Alzheimer, but has now become the accepted view of neuropathologists ‘after decades of acrimonious debate’ (pages 19-25, 46, 51-53, 58, 71 and 78-90).

The book’s key contention is that the wrong approach is the reason why, despite decades of research, Alzheimer’s disease remains an elusive entity. Justifying this assertion, the book reviewed countless causative theories of Alzheimer’s disease, from infective to immunological, which have been found wanting, and singling out the amyloid and tau hypotheses for scathing criticism. The author particularly pointed out the lack of correlation between the clinical symptoms of dementia and amyloid load, and the costly failure of drugs such as verubecestat, crenezumab, bapineuzumab, solanezumab, and aducanumab which have been developed specifically on the basis of these flawed theories. Despite these established facts, the author regretted that the adherents of these hypotheses continue to ‘man the barricades, doing all they can to prop up a failing hypothesis’, and she claimed that they do this because ‘careers and dollars and institutional reputations are at stake’. Indeed she accused these vested interests of being the major militating factors against the emergence of alternative concepts that are desperately needed to advance the study of the disease (pages 119-130, 137-139 and 142-146).

The author’s major concern over the disproportionate and misguided emphasis on searching for a cure for Alzheimer’s disease is that it distracts from the more practical requirement to address the growing ‘need for care‘. The author was specifically worried that the question of care for people with Alzheimer’s disease has been pushed ‘to the lowest rung of the medical ladder’ even though ‘we still don’t have good answers for how to prevent, treat, or cure it’. In promoting a balanced approach to both ‘care and cure’, she condemned what she called the outmoded heroic masculine medical tradition of medicine which hankers for a ‘swashbuckling‘ cure, an ethos that is in contrast to the accommodating feminine medicine which offers care. With this background, the author advocated for such beneficial measures as education, exercise, and social engagement – aspects of the disease management which she maintained have been ‘crowded out‘ by the disproportionate attention given to memory loss. She further underscored the importance of kindness, compassion, respect, and physical liberty which are essential ‘for any human fluorishing’, noting that Alzheimer’s disease is ‘not just about loss‘, but also about ‘preservation of affection, of dignity, of hope‘ (pages 5-6, 17, 47, 22-23, 133 and 147).

In developing her re-imagined vision of the care of dementia, the author relied as much on her personal views as on the lived experience of people with the disease and of their carers. She deftly illustrated this with the traumatic experience of Mrs S. who, in caring for her husband with dementia, had to contend with his incontinence, swearing, altered sleep-wake cycles, physical threats, and ‘irrational’ demands, and all the time she was confronted by institutional ‘barriers and frustrations‘. It is regrettable that these obstacles included doctors who didn’t listen and make her husband’s diagnosis promptly, and those who didn’t have the ‘skills to view older patients in the context of multiple illnesses‘. With this in mind, the author reviewed several aspects of today’s approach to the management of dementia, and she made profound organisational recommendations on such themes as institutional care, home support, and social services. She also made patient-centred suggestions on the management of such issues as incontinence, sex, driving, handling money, advance directives, and dying with ‘a good ending‘ (pages 168, 174, 179, 183, 187-197, 235-246 and 251-273).

From her unique position as a physician whose family history predicts that she will develop the disease herself, the author extracted several intriguing and stimulating recommendations for living with Alzheimer’s disease. A reflection of this personal dimension is when she promoted the value of planning for such a time when the disease will set in, maintaining that the ‘frightening‘ prospect of dementia ‘should not prevent us from facing the future‘. The wisdom of making plans was evident in her observation that ‘dementia lasts roughly ten years between diagnosis and the end’, and ‘those years are not about how to die, but about how to live with dementia’. The plans she explored were specifically aimed at maintaining such abilities as enjoying books, hobbies, games, and exercise, and particularly music for which she advocated drawing up a playlist which will help to ‘create a positive image of living with dementia’. In contemplating a time when she will become incapacitated with the disease, she set out her care agenda which she said is ‘empathic, affordable, and flexible‘, and it strikes a balance ‘of freedom, safety, and fiscal responsibility‘. She emphasised that this approach of forward planning offers the promise of future joy and ‘will make it more likely for me to hold on to happiness when I get there’ (pages 161, 167, 211-218 and 246-247).

Opinion

This book provides an alternative view to the conventional wisdom that searching for a cure for dementia is a realistic goal in addressing Alzheimer’s disease. By showing up the flaws of the hypotheses on which curative research studies are based, the author justified her contention that care is the preferable, and more practical and beneficial approach. The book is also a commentary on the misconceptions that have marred the understanding of the cause of Alzheimer’s disease and misdirected its research focus. Beyond the narrower field of dementia, the author’s wider advocacy against the dichotomy between psychiatric and neurological disorders, and between organic and functional symptoms, is cogent and relevant. Minor criticism of the book are its relatively narrow focus on the American experience of dementia, and a tendency to conflate the history of dementia with that of mental illness. These are nevertheless minor flaws that do not detract from the unique perspective the book shares on the care of a truly distressing disease.

Overall assessment

This book provides an important perspective on dementia, outlining the need to focus on the care of people with dementia as much as on the search for a future cure. It is also a call to reassess the science behind dementia, outlining how inadequately the current hypotheses address all dimensions of the disease. The scope of the book also encompasses the clinical and the ethical considerations of Alzheimer’s disease. The book is a clarion call for healthcare to look beyond the unrealistic expectation of drug therapy and to pay attention to mitigating measures and compassionate care. These are worthy objectives and I recommend the book to all doctors.

Book details

Publisher, Place, Year: Avery, New York, 2019
Number of chapters: 12
Number of pages: 310
ISBN: 978-0-7352-1090-5
Star rating: 5
Price: £14.80