Author: Daniel Gibbs
This incredibly intimate illness narrative recounts the experience of a neurologist living with the dreaded disorder that is Alzheimer’s disease. By applying his vantage position as a scientist and physician, the author set out to convey a ‘practical and helpful‘ understanding of the disease ‘from the inside out’. The narrative particularly highlights the importance of making an early diagnosis, a step that he said enables affected people to take ‘reasonable steps to stop or slow that process’, and to take the opportunity to ‘get serious about making the most of the time you have’. The book is also a call to the medical profession to shift its focus towards the earlier stages of the disease, urging physicians to overcome the ‘assumptions of helplessness and despair‘ that ‘have dominated the public conversation‘ around the disease. Whilst the book explores a disease that is alarmingly progressive, its tone is generally positive as it downplays the gloom, and stresses the potential of ‘the years- even decades- of meaningful time that can be maximized’ (pages 1-2 and 7).
The author’s story is notable for its detailed depiction of the earliest stages of Alzheimer’s disease. Conceiving of his dementia as a condition that ‘stakes out its slowly growing presence‘ in the brain, the author described how it started most innocuously with ‘a problem with my ability to smell‘. He perceptively charted how this progressed to phantosmia – ‘intrusive smells that didn’t seem to have any origin in the real world…as though the brain is inventing a smell to replace the one it can no longer detect‘. He also developed dysosmia, ‘distortions of true odors‘, which he said was most prominent when perceiving ‘very strong, usually noxious odors like gasoline‘. Having dismissed an incidental pituitary tumour and Parkinson’s disease as the causes of his early but progressive olfactory symptoms, the author understandably became worried that his situation was ‘a harbinger of things to come’. This was unfortunately a concern that materialised when, eight years later, he developed mild cognitive impairment which manifested mainly with ‘trouble recalling names and occasional words‘. The author documented the subsequent progression of his symptoms as he experienced word-finding pauses and ‘incidents of absent-mindedness‘. He also lost his ability to plan and multitask as he said he slipped farther ‘into the fog of Alzheimer’s’. In a sad turn of events, the author decided to retire at this point, explaining that ‘there is no room for memory lapses or errors of judgment‘ in medicine (pages 1, 27-28, 33-42, 58-64, 70-75, 144-145 and 173).
Memory loss, the classical manifestation of Alzheimer’s disease, was central to the book’s narrative. In describing the cause of this disabling symptom, the author referred metaphorically to how the disease ‘gums up the works‘ and ‘destroys the compass and coordinates of memory, eventually leaving the mind adrift at sea‘. He also used the symbolism of an island archipelago to describe how memory lies on top of much deeper ‘processes and neural networks‘ which Alzheimer’s disease disrupts. Discussing the progress of memory loss in Alzheimer’s disease, the author pointed out that it first impairs declarative memory, the ‘memory of facts and events‘, before it proceeds to disrupt procedural memory, the memory of skills. The book also explored the other equally disconcerting manifestations of Alzheimer’s disease such as language difficulties, impaired proprioception, apathy and prosopagnosia – the inability to recognise faces. The author however also highlighted the relative preservation of some cognitive functions such as the ability to appreciate music (pages 56-61, 146-152 and 211-214).
The key theme of the book is its powerful advocacy for the early diagnosis of Alzheimer’s disease, the author noting that the pathology of the disorder starts ‘ten to twenty years before there is any cognitive impairment‘. The author also justified his stress on early diagnosis by citing recent studies which have shown that there is now ‘a more nuanced view of the disease progression’. In his exploration of the innovations that are enabling the earlier diagnosis of Alzheimer’s disease, the author discussed the result of his own positive APOE-4 gene test; referring to this as ‘a shocking revelation’, he said it gave him ‘about a 50 percent chance of having an Alzheimer’s diagnosis by age 70‘. The test result also unraveled what he said was the ‘constellation of dementia‘ that runs in his family, a revelation that he said ’emerged like the outline of some ominous beast against the night sky’. Although he demonstrated that the APOE-4 gene is ‘the DNA blueprint‘ for a lipoprotein ‘involved in the transport of certain lipids‘, he admitted that the way this increases the risk of dementia is still not clear. The book also discussed the ‘biomarker tests that can provide good information about the presence of Alzheimer’s pathology during life‘, and these included MRI, amyloid PET and tau PET scans which it said all reveal ‘the unmistakable tell-tale signs’ of the disease (pages 47-52 and 83-85).
Whilst the author acknowledged that ‘there is no reliable way to slow down the inexorable march of the disease’, he argued that ‘extensive research‘ has ‘redefined the territory for treatment and the meaning of hope‘, and has indicated the potential for lifestyle changes to slow the disease progression. In this regard, the author stressed the protective effects of ‘diet, physical and mental exercise, social activity, and potentially some medications’ which he said mitigate ‘neurodegenerative decline‘. The author illustrated these potential benefits by referring to the interventions he had used to ‘tweak‘ the ‘imprecise timeline‘ of the disease in his favour, to ‘turn the uncertainty of it to my advantage’, and to ‘buy time‘ for the diverse activities he enjoys. With this background, he offered recommendations such as early engagement in ‘mentally-stimulating‘ activities like solving crossword puzzles, ‘reading six to ten books per month’, ‘social engagement‘, and ‘good sleep‘. The author also cautioned against dwelling on ‘the dark aspects of late-stage Alzheimer’s’, and against nurturing the destructive emotions of fear and anger; in contrast, he advised those with the disease to mindfully shift their attention to ‘wider, more satisfying‘ views of situations’, and to remain grounded ‘in the now‘ (pages 1-5, 12-18, 23, 77, 126-139 and 158-167).
Beyond the practical themes the book covers, it also explored several academically oriented topics, and one of these is the concept of cognitive reserve or resiliency. Acknowledging that this is a poorly understood notion, and that ‘there’s no way yet to measure‘ it, the author nevertheless believed that it offered the hope of ‘a potential reprieve from the otherwise steady erosion of our faculties by the neurodegenerative disease process’. The author explained that this is because cognitive reserve may be enhanced by such things as ‘life-long learning, education and exercise‘, and it may be sustained by instituting measures that prevent stroke and head injuries – disorders that compromise it. The author supplemented this narrative with a chronicle of his involvement in cutting-edge Alzheimer’s disease research, for example his inclusion in an imaging study of ‘subjects at risk of Alzheimer’s disease’. He also detailed his participation in the trial of the monoclonal antibody aducanumab, using this narrative to highlight his severe adverse reaction to the treatment which resulted in the worst ever reported case of amyloid related imaging abnormalities or ARIA. It was indeed the residual hemosiderin deposition that followed his ARIA that the author represented as ‘a tattoo on my brain’ which ‘will probably stay with me forever‘ (pages 81, 90-96, 99-106 and 109-120).
This is an enlightening illness story that benefits from the unique perspective of a patient charting the progression of his illness, with the insights of an expert familiar with managing the disorder. The illness narrative chronicles the author’s symptoms from their earliest manifestations, and it particularly highlights the human angle of the disease, such as the emotional aspects of breaking the news of its diagnosis. It is an enlightening book with comprehensive practical and sensible suggestions for the lay public which the author presented in simple and accessible prose. The book is also a well-researched educational text which explores the academic dimensions of the disease which span the spectrum from its genetics and familial tendency to its diagnosis and therapeutic clinical trials. Whilst many of the recommendations the author makes are anecdotal and poorly evidenced, the emphasis on lifestyle changes and research are intuitively sensible measures.
This comprehensive but concise book is a refreshing take on a terrifying disease that defies cure. The book’s singularly critical lesson is its advocacy for early diagnosis of Alzheimer’s disease, and it details the means of achieving this. The author’s personal story not only illustrated the earliest but nebulous warning symptoms of the disease, it also showed the practical ways by which the opportunities of an early diagnosis can be utilised to good effect. It is reassuring that the author did not paint an inappropriately rosy picture of the prospects of a drug cure for Alzheimer’s disease especially as trials have so far have not been convincing. The author also rightly noted that the amyloid theory of the disease is strongly contested. However, by stressing the potential benefits of cutting-edge investigations and non-drug interventions, the book fulfils a valuable public health service which gives hope to all those associated with this truly distressing disease, and I recommend it to all doctors.
Publisher, Place, Year: Cambridge University Press, Cambridge, 2021
Number of chapters: 21
Number of pages: 243
Star rating: 5