The Memory Thief

Understanding and coping with Alzheimer’s disease

I have only known Alzheimer’s disease and other dementia-related conditions at one remove. The extended members of my family with dementia always lived so far away that I could only see their decline from a distance, if at all. This distance extended to my understanding of the condition and its consequences because, in my mind, even knowing about this terrifying disease might be bad luck. And then there is my mother, currently 84 years of age, who fears that each of her “senior’s moments” is a symptom of the beginning of the disease. While these are irrational reactions to Alzheimer’s and dementia-related conditions, they are probably typical.

Margaret Lock, in her book—so appropriately entitled The Alzheimer Conundrum: Entanglements of Dementia and Aging—quotes from a famous Alzheimer’s researcher, Zaven Khachaturian. He provides the most succinct and unflinching description of the disease I have come across:

The disease quietly loots the brain, nerve cell by nerve cell, a burglar returning to the same house each night. Typically the first symptom to appear is forgetfulness. Then comes more severe memory loss, followed by confusion, garbled speech and movements, hallucinations, personality changes and moods that can swing from anger to anxiety to depression. As the brain loses mass the rest of the body gradually shuts down.

The overwhelming impression is that, despite some major scientific advances over the past -decade or two, we are still in the dark ages when it comes to understanding the brain relative to all the other organs in the human body. We still do not know whether Alzheimer’s is a discrete disorder or a biochemical deficiency or simply “an exaggeration or acceleration of the normal aging processes.” Moreover, we still cannot diagnose Alzheimer’s with certainty until a postmortem diagnosis is conducted through autopsy. Nonetheless, during life, clinical diagnoses are made—indeed, have to be made—based on psychological tests and professional judgement of a patient’s decline in cognitive capacity. (As a side note, a survivor of the concentration camps, Vojtech Adalbert Kral of McGill University was the first to use standardized psychological testing to assess the condition of his patients in the 1950s.)

There is a puzzle, however. The neurofibrillary tangles and plaques in the brain that can be seen post mortem—the classic identifiers of the disease—do not exhibit anything close to a perfect correspondence with the clinical presentation of the disease during life. We learn this in Lock’s book from a study of 678 Catholic nuns in the United States known as the School Sisters of Notre Dame whose brains had been examined after death. Commenced in 1986, the study compared the symptoms they experienced in the late stages—from age 75 and older—of their respective lives to the condition of their brains after death.

This same study also found large discrepancies between the clinical assessments during life and the autopsy after death. Some of the nuns whose autopsied brains had the unmistakable tangles and plaques associated with Alzheimer’s showed very few symptoms of the disease in their lifetime. The researchers reviewed statements written by the nuns when they first applied to enter the order as young women. The results showed that those nuns who expressed “imagination and complexity in their thinking while young” were “less likely to succumb to Alzheimer disease” when older, even though in many cases their autopsies showed all the telltale signs of the disease.

This is strong evidence in favour of what is called the cognitive reserve hypothesis: that a rich intellectual life can stave off the onset of Alzheimer’s for many years. Now, lest you think that reading the LRC well into your sunset years is a natural prophylactic against Alzheimer’s, you need to keep in mind that the tangles and plaques will eventually get to you if you live long enough, even if scientists vehemently disagree on the issue of whether the onset of Alzheimer’s is or is not a natural part of aging.

Trained as a cultural anthropologist, Lock is the Marjorie Bronfman Professor Emerita in Social Studies in Medicine at McGill University. Her book is a dense and at times difficult journey through the current state of research and competing understandings of Alzheimer’s disease. You have to be a determined reader to make it from beginning to end but it is worth the effort. The difficulty is less due to Lock’s writing style than to the inherent complexity of the subject matter, much of which deals with the cutting (and highly contested) edge of science. While not a research scientist, Lock has spent her life analyzing, interpreting and explaining our social constructions of “medical” conditions and interventions. Her past work exhibits astonishing range, including prize-winning books on biomedical technologies and their impact, organ transplants and the mythologies of menopause.

The conundrum Lock refers to in her title is, in my interpretation, actually a policy conundrum of whether to focus public resources—and those of the charities devoted to the disease—on an amply financed research program exploring the molecular aspects of the disease, or toward a public health approach that targets environmental factors that can be changed more easily and at much lower cost. By environmental factors, Lock means the material and social environment in which we live and work. Although she is not specific about the material factors that are highly correlated (or not) with Alzheimer’s diagnoses, it is clear that a rich and meaningful social life and an active intellectual life and the challenge of creative work is associated with greater resilience to the disease. The main dilemma from my perspective is that, in the long run, a “cure” will only be possible if we continue down the biomedical and clinical research path, yet because of its cost, that cure will likely only be offered to a tiny minority of the globe’s population.

At the same time, this research is driven by the desire of pharmaceutical companies to make a major breakthrough—with windfall profits that might well exceed what they were able to reap in the past on new anti-statin and anti-anxiety drugs. This has created an environment that has fused corporate interests with science in a way that confounds good policy. The dilemma remains, however. We are still far away from a cure to Alzheimer’s, and basic research, including pharmaceutical research, is clearly essential. Moreover, the amount of public and private money spent on dementia research still pales in comparison with cancer and cardiovascular disease research, to say nothing of the paltry sum devoted to research on the environmental conditions that can exacerbate Alzheimer’s.

The perception of this for-profit agenda polarizes researchers and experts who belong to at least one of three distinct groups. First, there are the basic scientists who are engaged full time in laboratory-style research, specializing in one of the many areas (such as pharmaceutical, protein and crystallography, cell signalling, genomic research) contributing to our knowledge of Alzheimer’s. Second, there are the epidemiologists and population geneticists who work outside the laboratory in order to figure out the causes and distribution of Alzheimer’s among various human populations. Finally, there are the physicians who have specialized in the care of Alzheimer’s patients and their families, and among these are clinician-researchers who also contribute to research using their patients as the main -subjects.

Into the third category falls Tiffany Chow, a behavioural neurologist and senior scientist at Baycrest’s Sam and Ida Ross Memory Clinic in Toronto. Her book, The Memory Clinic: Stories of Hope and Healing for Alzheimer’s Patients and Their Families, has an entirely different focus and style from Lock’s. Presented in a highly accessible, almost chatty format, Chow’s book targets two main audiences: the principal caregivers of Alzheimer’s patients in an attempt to explain how they can best manage both the disease and their own lives, and all of us who want to do what we can to prevent—to some extent—the onset of the disease.

Again, this was not a book I particularly wanted to read. In addition to the subject matter, this seemed on the surface like so many other self-help books that I detest. But while it does fit the self-help profile in some respects, The Memory Clinic goes well beyond that tired genre. In the first place, Chow is a notable clinician-scientist in the field and she gives us a broad-strokes view of the state of research in the field.

More unusually, however, she impresses with her compassion and wisdom and I came away thinking that she is a remarkable human being—honest, funny and highly motivated to do the right thing irrespective of how hard it is or to what extent it challenges the culture of her own profession. Chow also appreciates the highly contingent nature of her own diagnoses and subsequent prognoses. She tells us about a misdiagnosis of one of her own patients who, contrary to her expectations and clinical judgement, survived for years after Chow told her she only had months to live. Clearly, Chow was wrong and she has little shame in admitting this fact.

In the self-help part of the book, there are useful chapters on how to manage stress and relationships and re-shape your diet, exercise and work regimens so that you can reduce the risk of Alzheimer’s disease or at least mitigate its consequences. Chow then goes on to provide a basic introduction to treatment protocols including some cutting-edge approaches and drugs. She then guides the reader through the more speculative field of where the research, and perhaps treatment, of Alzheimer’s will be going in the future. One of her appendices provides a self-administered questionnaire that measures for risk factors.

I loved Chow’s explanation of “hanging the black crepe,” an expression she picked up from a physician friend to describe the doctor’s role in telling family members that a loved one is going to die. You get the impression that Chow has had to hang the black crepe many times in her life.

One of the most interesting chapters concerns the doctor-patient-caregiver triangle. Chow gives much useful advice, sprinkled throughout the book, to caregivers on how to provide compassionate care to a loved one with Alzheimer’s without becoming debilitated in the process. The first step is a clearer understanding of the disease and the way in which the patient sees the world. The second step is for the caregiver to know how best to care, when to care and when to step back. She also provides a bit of a guide to how caregivers can more constructively deal with the medical profession.

She admonishes those doctors who refuse to take the time to listen carefully and compassionately to their patients. She points out that the healthcare system is structured to revolve around doctors. First the patient waits for an appointment. Then the patient waits in a waiting room. Then, after finally getting to see the doctor, the patient gets a quick recitation of the diagnosis and its consequences with little or no opportunity to tell his or her own story.

In most cases, the family and even the patient know the problem cannot be solved but they desperately need someone to acknowledge their situation with compassion and patience. In Chow’s words, “telling a person he has a progressive dementia is a job that someone has to do, hopefully with the right amount of compassion and kindness for the circumstances. The other alternative is to send patients away under- or misinformed.” I get the impression that she is superb in this aspect of her job and, if I should ever develop the disease myself, I would want to be her patient and have her talk my family members through the process.

In the end, what I thought would be a depressing and distressing journey through a much-feared disease turned out to be a life-affirming experience. Both these books allowed me to understand the disease and be better prepared to face its reality should I be put into the position of an Alzheimer’s caregiver or patient in the future. My personal lesson from this is that it is far better to face difficult truths than live in ignorance and fear. While these two books have very different purposes and audiences in mind, they are highly complementary to each other. Both authors offer much, though in very different ways: Lock in her highly scholarly manner and Chow in her simpler and more conversational style.