A stubborn conundrum

Professor Margaret Lock has published an exhaustive ethnography of Alzheimer disease research in her latest book, The Alzheimer Conundrum. I recently reviewed this book for The Australian Journal of Anthropology. The book interested me both for personal and academic reasons. For the last few years, I have been working with Danielle Corrie, an aged-care service provider, to put together a series of accounts of ageing in the suburbs. The Alzheimer Conundrum was interesting for both of us given its engagement with ageing research. A number of themes that Lock has to play with in discussing the culture of Alzheimer disease research include conceptualisations of risk, debates over normality, constructions of pathology, the politicisation of aetiology, the rise of uncertainty, scientific reductionism, medicalisation and standardisation. Even though not all the key terms are identified in the index, I urge readers interested in these themes to peruse the whole text rather than restricting themselves to just specific sections of the book. In fact, the contents of the index hint at an ethnographic tome simultaneously targeted at a scientifically literate audience. In this regard, I believe The Alzheimer Conundrum has something for both anthropologists and brain scientists.

Here is what Danielle Corrie, an aged-care service provider in Sydney, Australia, has to say about Margaret Lock’s The Alzheimer Conundrum:

 

The Alzheimers Conundrum: Entanglements of Dementia and Aging
by Margaret Lock
ISBN: 978-0691149783 Princeton, NJ: Princeton University Press, 2013

Is Alzheimer’s disease an illness that only occurs in aged or elderly people? How much does one really know about Alzheimer’s disease? Professor Margaret Lock explains these questions and more in her recent publication The Alzheimer’s Conundrum.

Professor Margaret Lock is a medical anthropologist who has written many publications with her most recent being The Alzheimer’s Conundrum. The Alzheimer’s Conundrum is a book detailing scientific and medical research conducted for Alzheimer’s disease including excerpts from patients, input from researchers, philosophers and others experts who have knowledge of this disease. The Alzheimer’s Conundrum takes you as the reader on an in depth journey detailing the history of Alzheimer’s disease from when it was first discovered by a German physician Alois Alzheimer in 1908 to where it is today. Alzheimer’s disease was initially classified as a neurological condition linked to ageing until the 1970’s when it was recognised as the most common cause of dementia, a major disorder among the elderly.

The Alzheimer’s Conundrum is a book written for an audience with a scientific mind; academic students, medical anthropologists or researchers who have an interest in neurological illnesses. Readers familiar with biomedical science will be more comfortable reading this book given that it is filled with technical jargon and medical terminology. For the everyday reader who wants to learn more about Alzheimer’s disease, The Alzheimer’s Conundrum is a very technical book. With such a complex book full of information about Alzheimer’s disease, integrating more diagrams may have provided more clarity and accessibility.

In The Alzheimer’s Conundrum, Margaret Lock explains that Alzheimer’s disease is an illness that has been initially difficult to diagnose in patients. There were inconsistent signs and symptoms with each patient and these signs and symptoms have been similar to other illnesses like depression. Even doctors, researchers and other medical professions became confused and uncertain, at times conflicting with each others’ opinions. So how was a diagnosis made? In the beginning no one could have a simple blood test, urine test, or medical examination to determine they had dementia or more specifically Alzheimer’s disease. It was only during an autopsy when Alzheimer’s disease was actually confirmed.

“It has long been agreed that confirmation of an Alzheimer’s disease diagnosis can be obtained only at autopsy.” p 52.

Despite of all the research being conducted by medical professionals, the everyday common person feared having Alzheimer’s disease. Instead people have said that they would rather die than be diagnosed with such an illness. They were more fearful of losing their independence, losing their memory, and becoming a burden to their families (refer case studies dialogues pp 89-91). Reading these comments demonstrates that not only the medical professionals are uncertain about the consequences of someone being diagnosed with Alzheimer’s disease, there is also concern among the patients and their loved ones as well.

So what causes Alzheimer’s disease? Is Alzheimer’s disease genetically inherited? Trying to determine whether Alzheimer’s disease is an illness that is passed on from generation to generation, author Margaret Lock delves into human genetics where scientists have tried to identify genes pertaining to Alzheimer’s disease. During these clinical trials and studies, patients who were diagnosed with early onset of Alzheimer’s disease were examined to find a common gene linked to this illness.  Margaret Lock documents these findings making mention that people who have the APOE gene are at a higher risk of Alzheimer’s disease.

Are we any closer to finding a cure for Alzheimer’s disease? How relevant is genetic testing in determining someone is at high risk of developing Alzheimer’s disease when all an everyday person wants to do is to identify simple lifestyle changes where they can exert some control to prevent Alzheimer’s disease in the first place?  Alzheimer’s disease is a tangled web that even the medical experts have difficulty unravelling. After conducting many clinical trials, case studies and medical research, Margaret Lock concludes that there is no prevention for ageing or dementia in today’s society.

“…. aging and dementia cannot be disentangled; all we can strive for is to find ways to stave off or halt the progression of AD at whatever age it strikes.” p 242.

Is Lock suggesting that you cannot understand Alzheimer’s disease without understanding how aging and dementia are enmeshed? Will preventive measures be successful in eradicating Alzheimer’s disease? Lock’s book leaves the reader with many questions. Perhaps that is her intention, to demonstrate that behind all the pomp and fanfare of modern neuroscience and aging research we are still left drowning in uncertainty. An approach that defies reductionism and engages with the entanglement of this horrible disease, will hopefully lead to a decrease in the severity of its toll.

By Danielle Corrie, The Admin Tree

 

 

Other links:

Dr Margaret Lock at McGill University
The Alzheimer Conundrum from Princeton University Press with a free pdf copy of chapter 1.
The Alzheimer Conondrum audiobook from Audible with a sample from the opening chapter.
The Alzheimer Conundrum on GoogleBooks.
Margaret Lock’s response to Jerome Groopman in the New York Review of Books.
Jessica Firger interviews Margaret Lock for Everyday Health.
A Brain Out of Synch: Interview with Margaret Lock on TVO
Facing Uncertainty: Who is Destined for Alzheimer’s Disease? Talk by Margaret Lock
Presidential Chair Lecture Series at UC San Francisco, talk by Margaret M. Lock, Marjorie Bronfman Professor, The Social Studies in Medicine
Genes as tools for the prevention of Alzheimer’s disease Keynote by Margaret Lock at the Genomics in Society: Facts, Fictions and Cultures
Aaron Seaman reviews The Alzheimer Conundrum on Somatosphere.
Jane Tooke reviews The Alzheimer Conundrum in the Journal Ageing and Society.
Des Fitzgerald reviews The Alzheimer Conundrum for the London School of Economics Review of Books.
Unwrapping a fragile concept. Jason Karlwish review The Alzheimer Conundrum by Margaret Lock for Health Affairs.
Rose Anne Kenny reviews The Alzheimer Conundrum for Times Higher Education
Gallantly fighting windmills? Complexity of a 21st century challenge, Robin Pierce reviews The Alzheimer Conundrum for The Lancet. .
Short Review of The Alzheimer Conundrum at Publishers Weekly.
Athena McLean reviews The Alzheimer Conundrum for American Anthropologist.
Paul Mason reviews The Alzheimer Conundrum for The Australian Journal of Anthropology.