Last month the Annals of Internal Medicine published a study (1) comparing long-term care costs during the last five years of life for dementia, cancer and heart disease in the U.S. It revealed that dementia costs far exceed those of other chronic conditions. Unsurprisingly, this became headline news. Behind these headlines, Medicare expenses were actually found to be comparable across conditions. It was only after the inclusion of personal, “out-of-pocket” expenses such as home-care that dementia became more costly. Once such expenses were included, dementia cost substantially more ($287,039) than cancer ($173,383) or heart disease ($175,136). The authors termed dementia’s additional costs “social”. In doing so, they unintentionally revealed the contradiction undermining western dementia approaches; we conceptualise the condition biomedically, but the response socially.
Biomedicine currently monopolises western dementia understandings, but why? Fox (2) has charted the current biomedical models emergence. In the early 1960s two researchers, Terry and Korey, sought to examine neurological disorders using new electron microscope technology. This required tissue from a fatal disease present throughout the brain. Storage diseases were chosen as Korey had expertise but his sudden death shifted Terry’s attention towards Alzheimer’s disease. Terry’s eventual publication (3) outlined contemporary Alzheimer’s neurophysiology. In 1974 a neurologist, Katzman, proclaimed a physiological Alzheimer’s disease the 4th deadliest U.S. condition, based on Terry’s findings. This had colossal ramifications. The National Institute for Aging’s Alzheimer’s Disease Research Centers funding swelled from $0.8million in 1976 to $80million in 1989, with a marketing association promoting findings. Alzheimer’s disease, and by association dementia, became a biomedical entity.
Today, this biomedical entity is somewhat insufficient. For Davis (4) a Foucauldian interpretation contextualises the medicalisation of dementia within a broader post-18th century discursive positivist ascendancy, constituting a new way of knowing the body via distinguishing normal/abnormal physiology (5). The ‘normal’ ageing paradigm upon which dementia relies is problematic. Ageing physiology remains indistinct from dementia physiology, problematising biomedical conceptualisations as either age appears pathological or dementia non-pathological. Post-mortem, many people diagnosed with dementia show no associated pathology. Conversely, many symptomless older people show pathology. A 10-40% post-mortem pathology discrepancy exists (6), highlighting the inadequacy of the pathological model to holistically conceptualise dementia (7).
40 years after Katzman’s assertion, the vast majority of dementias remain physiologically enigmatic and unresponsive to medications beyond limited symptom management. Despite this, the biomedical model of a disease entity underlies the west’s dementia strategy (8). This poses the obvious question: why? Robin Means and colleagues (9) have suggested that the answer to this question is that alternatives are lacking. Dementia’s reluctance to fit satisfactorily into existing frameworks is exacerbated within the social sciences. It is neither an old-age nor an illness concern completely. Consequently, dementia slips between social gerontology, medical sociology and the sociology of mental illness, areas which could inform a more balanced debate (10).
Unfortunately, the debate remains unbalanced. Biomedicine’s hegemonic power illegitimises alternative approaches via controlling legitimate discourses. By dominating societal dementia discourses, biomedicine is granted status and resources, receiving research funding and media attention. Biomedicine discursively constructs its practices as superior to those deemed non-biomedical (11). Labelling dementia treatment ‘social care’ illegitimises such treatment and transfers responsibility from expert medical professionals to inexpert families and low-paid workforces. In turning its attentions towards biomedicine’s promises of future solutions, society turns its back on the people providing solutions in the present. The consequences are unwittingly evidenced in the Annals of Internal Medicine’s recent paper (1). We do not expect families to pay for cancer and heart disease. We do expect families to pay for dementia.
- Kelley, A.S. et al. (2015) ‘The burden of health care costs for patients with dementia in the last 5 years of life’, Annals of Internal Medicine. Available at: http://annals.org/article.aspx?articleid=2466365 [28.10.15].
- Fox, P. (1989) ‘From senility to Alzheimer’s disease: The rise of the Alzheimer’s disease movement’, The Milbank Quarterly, 67(1) 58-102.
- Terry, R. (1963) ‘The fine structure of neurofibrillary tangles in Alzheimer’s disease’, Journal of Neuropathology and Experimental Neurology, 22: 629-642.
- Davis, D.H.J. (2004) ‘Dementia: Sociological and philosophical constructions’, Social Science and Medicine, 58: 369-378.
- Foucault, M. (2000) The Birth of the Clinic: An Archaeology of Medical Perception. London: Routledge.
- Meng, X. & D’Arcy, C. (2012) ‘Education and dementia in the context of the cognitive reserve hypothesis: A systematic review with meta-analyses and qualitative analyses’, PLoS One, 7 (6) e38268.
- Phillips, J. et al. (2010) Key Concepts in Social Gerontology. London: SAGE Publications Ltd.
- Parker, J. (2005) ‘Constructing dementia and dementia care: Daily practices in a day care setting’, Journal of Social Work, 5 (3) 261-278.
- Means, R. et al. (2008) Community Care: Policy and Practice (4th edition). Basingstoke: Palgrave Macmillan.
- Lyman, K.A. (2000) ‘Bringing the social back in: A critique of the biomedicalization of dementia’, in Gubrium, J.F. & Holstein, J.A. (eds) Aging and Everyday Life. Oxford: Blackwell Publishers Ltd.
- Foucault, M. (2000) The Birth of Social Medicine, in Faubion, J. (Ed.), The Essential Works of Michel Foucault, 3. New York: The New Press.