Marlene Goldman, Forgotten: Narratives of Age-Related Dementia and Alzheimer’s Disease in Canada

Marlene Goldman, Forgotten: Narratives of Age-Related Dementia and Alzheimer’s Disease in Canada (Montreal and Kingston ON: McGill-Queens University Press 2017) $34.95 Pb, $120 Hb. ISBN: 9780773550926

Deconstructing the myths that have transformed cognitive decline into a corrosive fantasy, Forgotten establishes the pivotal role that fictional and non-fictional narratives play in cultural interpretations of disease, news stories and medical and historical discussions of Alzheimers disease, providing an alternative, person-centred perspective to the experiences of aging and age-related dementia. Goldman hopes we can begin to accept and understand the aging process and the aging brain as a part of life. Instead of fighting aging, dementia, and death, we need to confront it honestly, without stigmatising it and viewing it with Gothic horror and shame.  The emphasis on the disease model misrepresents dementia as a mysterious killer that is separate from the aging process.

The author gives the reader an insight into the negative gothic language and metaphors which characterize the condition as a horrific death, a terrifying death as depicted in gothic novels and disregards the person prior to arriving at this stage of the condition, in that the person becomes lost or detached from their loved ones.  It is depicted as separate from the natural aging process, in a way with which the author takes issue, on the grounds that it is part of growing old. The book describes how the media, biomedical and literary narratives have labelled dementia as as an epidemic disease or plague, bigger than cancer, characterising it in Gothic terms, and seeks to move on from this Gothic psychosocial model towards a more somatic biological approach. Narratives are used to comprehend an illness once accepted as part of the life course, promoting the identification of illness as explicitly evil and treating disease as a mystery and crime to be solved (9). These narratives take on various forms from self-writing to the rise of the Alzheimers Society of Canada, each describing the various stages of dementia, including narratives based on the lived experiences of deinstitutionalisation and the fate of cognitively-impaired elderly residents released from the asylums.

The author offers the reader a well-researched historical narrative of how Canada dealt with and deals with Alzheimers noting that most research papers are more United States and United Kingdom based with very little research having been carried out in Canada. so that now there is a need to update research and academic writing from Canadian perspective, given that  old age research in Canada is new (7) Goldman gives the reader and excellent reader into the history of dementia and related illnesses in Canada, which until recently have lacked much treatment in written work and research, as it was not until the late 1970s that Canada turned attention to the illness within its own country as prior to that date most academic works were either USA or UK based (7/87).

An account of the disease was given in the late nineteenth and early twentieth centuries, but it was not until 1970 that research really took off, though concentrated on dementia mainly as a clinical pathological entity (48).  The ageing population in Canada was described as apocalyptic demography (80), with the rise of the lunatic asylums beginning as a means of treating the disease as a mental health problem, as dementia was viewed as negative and had never been important to the Canadian nation states (173). Large State asylums were built far from families thus cutting off family ties. However, these institutions were draining the public purse and began to be closed down, with the residents having to be placed elsewhere.

The narratives of the various writers in the book describe how Canadian society was slow in identifying the model to use to classify dementia.  The works of Alois Alzheimer, whose name was given to the condition, characterized the disease as indivisible from natural human ageing process, but there are writers of narrative who have also made substantial contributions to explaining the condition and this is acknowledged by the  author. It is possible that some day we may able to slow down this process, or prevent it, but there will always likely be degrees of cognitive decline at the end of life. The narratives within the book give the reader a wider foundation for understanding the condition, rather than just Alzheimer's work, broadening the reader's understanding of the genesis of the illness, its classification by media, politics, society, medicine and literary works. Part of the problem with fighting late-onset memory loss as if it were an infection is that unlike an infection, there will likely never be a discrete pill that stops the disease process in its tracks and allows someone to revert to their previous,cognitively healthy self.

Many of the narratives describe how the condition affects not only the patient but also the families as stated by Ignatieff (209); probably the most important part in the book  is where Lori (208) states the four key goals of the Alzheimers Society of Canada, education, support for families, research and advocacy. noting that the Society was committed to making support for families as important as research so that resources would be in place while researchers sought to identify a cause and a cure (209). To this day Alzheimers and age related dementias are defined in terms of the medical model with most treatments classified under medications, hospitalisation, care homes. something which is the case in most countries as they attempt to deal with the condition.  Here the author allows the reader to understand why lunatic asylums/ institutionalisation of people are so inherent to Alzheimers as a condition. Using news stories and medical and historical discussions of Alzheimers disease, the author provides an alternative person-centred perspective to the experiences of aging and age-related dementia. A problem with dealing with late-onset memory loss using a medical model, as if it were an illness, is that unlike in an illness there will probably never be medication that slows down or terminates the disease process and allows someone to revert to their previous, healthy self .Perhaps this may be possible someday but there will always be various levels of cognitive ability at the end of life.

The author lists four points that underline her book.  Firstly, it allows younger people to acknowledge that cognitive decline at end of life is something that happens to everyone and as such does not have to be characterized in terms of fear and (Gothic) horror.  Secondly, the utilisation of Gothic language creates a situation whereby dementia suffers are put into a labelled category of disease and so by being labelled they are viewed as being surrounded by the condition and begin to lose their daily lives and grow further away from their families.  Thirdly, the disease model describes dementia as a silent killer which is separate from the natural aging process. Finally, families believe in spite of the facts that there is medication to stop, slow down or reverse the condition, despite knowing that it is all part of growing old and is not a separable condition.

The aim of the book is to educate the reader that  Alzheimers and age-related dementia conditions are merely illnesses, albeit serious ones, and not as a form of punishment or a curse as has been assumed.  It seeks to re-frame the way we see dementia by analysing the common and often misleading Gothic and apocalyptic narratives used to characterize an illness once accepted as part of the life course.

Catherine Bryce, BSc Mental Health Nurse (Retired)