Alzheimer’s: don’t trust preconceived ideas
Is the quality of life of people affected by Alzheimer’s disease as mediocre as is often imagined? A study carried out by Pierre Missotten, a psychology researcher at the University of Liège, suggests that people with dementia are capable of maintaining an acceptable level of quality of life. These results clash with the often calamitous view society attaches to the pathology of dementia. This is reflected through the categorisation of people with dementia amongst the most marginalised and stigmatised group in society (1). This very negative view can accentuate the risk of ending up with certain mistaken paths being taken. Nonetheless, as Pierre Missotten states, steps forward are currently being taken in how a person affected by dementia is considered, now more seen as a subject rather than an object. These advances are reflected through various notions such as person centred care, those of personality and citizenship or adaptation, through theories of ageing being managed well and coping strategies.
In many respects Alzheimer’s disease remains a mystery. What are the exact causes of this form of dementia? How can its progression be stopped? How can we protect ourselves against it? Close to a century after its discovery by the German doctor Aloïs Alzheimer, these questions still remain unanswered. The leads most frequently put forward talk of the influence of environmental and genetic factors. But none of these hypotheses has been verified. Several medical treatments allow the disorders to be attenuated, but none of them allow people to be cured of them.
There is a single certainty: this neuro-degenerative pathology affects a significant number of people. It is the most widespread form of dementia. According to the 2010 report by Alzheimer’s Disease International, 36.5 million individuals around the world are affected by dementia. In Belgium it is estimated that around 160,000 people suffer from it. More than half of them (85,000) are affected by Alzheimer’s disease (2).
Scientists, pharmaceutical laboratories, public authorities, etc. Alzheimer is the subject of everyone’s attention. For a long time, scientific studies were primarily focused on research into its causes and the development of potential remedies. Since fifteen years or so specialists have also been looking at another aspect: the patients’ quality of life. This term ‘quality of life’ turns out to be relatively recent. It is said to have been employed for the first time in 1964 during a speech by the American President Lyndon Baines Johnson. It is only since the mid-1970s that medicine, psychology and philosophy have started to take an interest in this concept. ‘That is a reflection of society,’ notes Pierre Missotten, a researcher into the psychology of senescence and the author of a doctoral thesis on the quality of life of Alzheimer’s patients (3). ‘At the beginning, research was principally based on the theme of cure and recovery. Today ‘lived experience’ is becoming an important aspect in many domains, including that of disease.’
Quality of life, comfort, well-being, satisfaction, etc. All terms regularly used in an interchangeable manner in the media and scientific research. Yet, if these different terms constitute important notions linked to the global concept of quality of life, each one has its own specificity. Their interchangeabilty is in particular explained by the absence of a consensus definition of the concept of the quality of life. In effect, if everyone is talking about quality of life, nobody agrees on a universal definition. Where some specialists privilege an ‘objective’ approach (mental/physical health, level of education, income, etc.), others feel that subjective criteria should be more used as a basis (satisfaction, objectives, happiness, etc.). ‘No consensus exists,’ sums up Pierre Missotten. ‘Definitions are pretty rarely set out explicitly and vary from one author to another. Certain of them are general (e.g. the W.H.O.’s definition (5)), some spring from the gerontological literature (e.g. Lawton’s definition (6)), others are specific to the pathology of dementia (e.g. the definition offered by Lyketsos and his colleagues). For my part, I think it is important to consider quality of life in terms of a person’s goals and expectations.’
(1) Graham, N., Lindesay, J., Katona, C., Bertolote, J. M., Camus, V., Copeland, J. R., et al. (2003). Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. Int J Geriatr Psychiatry, 18(8), 670-678.
(2) Figures provided by the Alzheimer League, www.alzheimer.be
(3) Pierre Missotten, La qualité de vie dans la maladie d’Alzheimer et les syndromes apparentés, Liège, May 2011.
(4) The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med, 41(10), 1403-1409.
(5) Lawton, M. P. (1994). Quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord, 8 Suppl 3, 138-150.
(6) Lyketsos, C. G., Gonzales-Salvador, T., Chin, J. J., Baker, A., Black, B., & Rabins, P. (2003). A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. Int J Geriatr Psychiatry, 18(4), 275-281.