THE MEDICALIZATION OF DEMENTIA

JOHN BOND* University of Newcastle-upon-Tyne

ABSTRACT: iThis article describes the contribution of medicine to the social construction of dementia andexamines the impact of the medicalization of dementia on people with dementia and their informal caregivers. Favorable and unfavorable aspects of the medicalization of dementia are described. The article concludes that by challenging the biomedical model of dementia society will help generate new social relationships between people with dementia and their fellow human beings.

After AIDS and cancer, dementia is probably the most feared of all modern diseases, especially among older people. In the United Kingdom dementia is the disease category which has been used by psychiatrists to describe a variety of clinical conditions which appear to result in a loss of intellectual power. In everyday life this loss of intellectual power is perceived by professionals and lay people alike to be problematic because it leads to difficulties in remembering, making decisions, thinking through complex ideas, carrying out practical tasks, retaining information and acquiring new skills. Both in clinical practice and social research, behavioral changes and associated changes in the personality of the individual with dementia have been observed as problematic for significant others (Woods 1989). We have little understanding as to the causes of dementia and as yet there is no known cure. It is only relatively recently that contemporary culture has come to understand what the medical profession recognizes as dementia (Gubrium 1986).

In the United kingdom there are a number of clinical conditions to which the term ‘dementia’ is applied by the medical profession including: Alzheimer’s Disease (AD), multi-infarct dementia (MID), Pick’s disease, Binswanger’s disease, Creutzfeldt-Jacob disease, Neurosyphilis, Korsakoffs psychosis, Huntington’s disease and Parkinson’s disease.

*Direct all correspondence to: John Bond, Center for Health Services Research, University of Newcastle, 21 Claremont Place, Newcastle-upon-Tyne NE2 4AA. United Kingdom.

JOURNAL OF AGING STUDIES, Volume 6, Number 4, pages 397-403 Copyright @ 1992 by JAI Press Inc. All rights of reproduction in any form reserved. ISSN: 08904065.

398 JOURNAL OF AGING STUDIES Vol. 6lNo. 4/I 992

The prevalence of the different medically defined categories of dementia is unknown. Estimates of moderate or severe dementia range from 20 to 78 per 1000 people aged 65 or over. These variations are due not only to the natural variation in the disease but also to the different methods of categorizing and assessing symptoms of dementia (Bond 1987; Brayne and Ames 1988; Henderson and Kay 1984; Kay, et al. 1985). The best estimates we have of this disease category are based on a meta analysis of a number of prevalence studies (Jorm, et al. 1987).

Epidemiological surveys have shown that the prevalence of dementia increases markedly with age. Whatever the method of defining dementia the prevalence among people aged 65 or over doubles every 5.1 years (Jorm, et al. 1987). Since epidemiological studies have shown that age is the most important risk factor for dementia (Jorm 1990) there is some indication that deterioration in cognitive function might be part of the normal aging process.

Biomedical research points toward understanding dementia as a separate disease entity but like other medical conditions such as high blood pressure, the different types of dementia are socially constructed, the difference between normal and abnormal being quite arbitrary.

THE REALITY OF DEMENTIA

We can begin to understand how dementia is socially constructed when we read the accounts of significant others such as the fictional account portrayed in Forster’s novel Have the Men Had Enough. The experience of dementia is real for sufferers of the disease, their significant others and for formal and informal care-givers. We are unable to ascertain the real suffering of those with dementia, because of the nature of the disease which impairs cognitive functioning. But there is evidence that people suffering mild symptoms of the disease experience insight into their condition which can lead to depression and poor personal well-being. Certainly we probably all fear the loss of our own minds in the future, if that is what dementia sufferers are actually experiencing. Like death, with a few exceptions (Lorimer 1990), no one has ‘returned’ to tell us all what it is like to have dementia.

We do, however, know about the experience of dementia from the perspective of the significant other and formal and informal care-givers. One recent writer, using a phrase coined by a client, has vividly described it as a living death (Woods 1989). To use the client’s words:

“It’s as if John is dead in a way-he’s certainly no longer the man I married. But his body is still here. It’s like a living death.”

We can also get a clear view of the experience of caring from the evidence of the UK Alzheimer’s Disease Society to the House of Commons Social Services Committee. They identified a number of problems for caregivers including: loss of sleep, constant anxiety, changing personality, repetitive questioning, bizarre behavior, wandering, incontinence and aggression (House of Commons 1990).

Finally, research into caregiving also highlights the reality of dementia for both the providers and the recipients of care (Parker 1985). Both positivistic and interactionist approaches have been used.

The Medicalization of Dementia 399

MAKING SENSE OF DEMENTIA

The simple biomedical model of dementia which assumes a simple causal relationship between neuropathology and dementia has recently been challenged as inadequate (Kitwood 1989). For certain types of dementia such as MID or Parkinson’s Disease the neuropathological relationship appears quite clearly understood. In the MID successive minor failures of blood supply to the brain causes death to some of the brain cells and associated tissue. Yet the unquestioning acceptance of this plausible model can lead to treating people who have suffered strokes in the same stigmatizing way whether or not they are exhibiting symptoms of dementia. Social and psychological processes are excluded from the biomedical model which appears incomplete as an explanation of dementia.

In the case of AD the biomedical model appears extremely weak. It is not clear from the biomedical evidence to date whether the neuropathological state represents one or a number of causal agents. By challenging the standard biomedical approach to dementia Kitwood (1990) has by-passed this controversy and also postulated a model which focuses on the dialectical interplay between neurological and social-psychological factors. Kitwood’s analysis is unusual. Why are bio-medical models in the study of aging and dementia so dominant?

THE CONCEPT OF MEDICALIZATION

The concept of medicalization has been around for a number of years (Freidson 1970; Zola 1972; Waitzkin and Waterman 1974; Conrad 1975; Illich 1976; Zola 1986; Estes and Binney, 1989; Binney, et al. 1990), yet it is not a concept which has been readily accepted outside the sociology of health and illness. By medicalization is meant defining behavior as a medical problem and mandating the medical profession to provide some form of treatment for it. Behavior which has been defined as a problem is deviant behavior. Deviance here refers to conduct that is a violation of the rules constructed by a given social group. Deviance is therefore a matter of social definition. For many social groups illness is a form of deviant behavior.

In understanding deviant behavior it is useful to consider the distinction between primary and secondary deviance (Lemert 1964). Primary deviance is the process whereby a label is given to an individual with defined characteristics. Whether a given label will have meaning within a group will depend on whether the label is permanent and this, in turn, will depend a great deal on whether the person applying the label has the authority to do so. Medicine has a central role in legitimating disease labels. Once society mandates medicine with this role the process of medicalization has been evoked.

One important feature of the labelling process is the effect on the person being labelled and the people around them. This has been called secondary deviance to distinguish it from the attributes which initially triggered the label. Being given the label is likely to affect the way individuals behave with others. In time they are likely to come to act the role which the new label implies, because of the way others have behaved towards them, the possessors of the label. If we begin to apply the label ‘senile’ to an elderly person, perhaps even more important, to treat them as if they were senile, it is not surprising when they begin to behave in some what bizarre ways.

400 JOURNAL OF AGING STUDIES Vol. 6lNo. 4/l 992

MEDICALIZATION OF DEMENTIA

Estes and Binney (1989) have described the role of medicine in the social construction of old age as a process of decremental decline. With its focus on the pathology of individuals, medicine has been intluential in defining the behaviors associated with dementia as a medical problem. In viewing ‘dementia’ as a medical problem all of us concerned about people with ‘dementia’ have been responsible for medicaliing the issue. But why should we want to demedicalize the issues of ‘dementia’ and caregiving since Zola (1986) has clearly delineated the benefits of medicalization of both aging and disability, although not specifically dementia? There are at least four aspects of medicali- zation which have unfavorable implications for people with dementia and their caregivers:

1. Expert control. The medical profession is a profession of experts who have a monopoly over knowledge about anything relating to disease or illness (Freidson 1970). Diagnosis and treatment are virtually controlled by the medical profession. Dementia, if it is dementia, might be appropriately diagnosed and treated by the medical profession but caregiving is very much a social state of affairs. Yet because the medical profession has the authority to define dementia all knowledge about this social category appears to be the monopoly of the medical profession. Thus in the UK it is the medical profession which dominates the grant awarding body providing the majority of monies for research on dementia. Few grants, from various grant awarding bodies, are awarded for the non-medical aspects of dementia without the support of the medical profession.

2. Social control. In its role as arbiter of social values medicine acts as an institution of social control and doctors as agents of social control (Zola 1972). Medicine has the power to legitimize and confer a social status and incorporates procedures by which the status of ill or well are judged by the doctor. In the UK it is psychiatrists who decide whether an individual should be ‘certified’ as having dementia. Such judgements occur independent of the beliefs of caregivers or an individual’s own beliefs.

3. Individualization of behavior. Medicalization supports the individualization of deviant behavior. Society seeks explanations and solutions for complex social problems in the individual rather than the social structure. Thus the predominant focus of preventive medicine is at the individual level rather than the societal level. For example, individuals should stop smoking rather than the tobacco companies stop producing cigarettes. In general terms the biomedical model focuses on the individual and the diagnosis and treatment of the illness, rather than seeing an individual’s illness in the context of the social system. In the same way the effect of dementia on the caregiver is individualized and not related to the social structure of the caring unit and caring relationship. It is, for example, the personalities of caregiver and cared for which are highlighted rather than material conditions or other structural characteristics.

4. Depoliticization of behavior. By defining the behavior and cognitive problems of dementia the biomedical model ignores the meaning of the individual’s behavior in the context of the social system. The perspective of the person with dementia and his or her caregiver is ignored. Thus when people in hospital exhibit behavior characteristics similar to those of people diagnosed as having dementia there is little attempt to seek an explanation within the context of the loss of power of a patient in a total institution (Goffman 1961) rather than a neurological disorder.

The Medicalization of Dementia 401

THE EFFECT ON CARE GIVING

One of the perceived benefits of the medicalization of dementia for informal caregivers is the bringing of order to dementia care. The label of dementia legitimates an individual’s bizarre behavior. Caregivers are able to face the world, their neighbors and friends because their loved one is ill, not crazy. Like many other chronic illnesses dementia is characterized by an uncertain trajectory (Strauss 1975). Medical labels and authority ease the stress of dementia care by increasing the sense of predictability and control for caregivers. However, observations of caregivers in a variety of settings have found that once the label of dementia has been applied, even normal behavior is interpreted in terms of disease stages (Gubrium 1986; Gubrium and Lynott 1987; Lyman 1988, 1989).

Medicalization through expert control, social control and individualization of behavior justifies control as the appropriate treatment for the ‘good of the patient.’ However, the bio-medical model does not consider the ways in which the caregiving relationship and conditions in caregiving context affect stress for the caregivers of people with dementia as well as the impaired individuals themselves. If dementia is viewed only as a medical condition the behavior of the person with dementia is individualized the relationships between people with dementia and their caregivers are considered unimportant.

Dementia is not only a social state of affairs but a political issue. The pressure from the UK Government to provide ‘community care’ for people with dementia has increased with the demographic changes in society and recent legislation on the organization of community care (Secretary of State for Health, et al. 1989). Families are the major component of community care for people with dementia (Parker 1985). Caring for people with dementia in institutional settings is also demanding work and much of the strain reflects the uncertain trajectory of this chronic illness. Reducing the effect of strain or burnout on both family and formal caregivers should be, therefore, of central concern to policy makers. If caregiver strain can be minimized then people with dementia can be maintained in the community for longer. The bio-medical model offers solutions to these policy issues by also medicalizing the role of caregivers.

THE DEMEDICALIZATION OF DEMENTIA AND CAREGIVING

This article describes the medicalization of dementia and caregiving. How could this analysis be used to change the social environment in which people with dementia live? How could the demedicalization of dementia and caregiving be achieved?

First it is necessary to understand the social context as well as the clinical uncertainty of the illness trajectory of dementia. Continuing acceptance of the traditional paradigm of the bio-medical model with its deterministic perspective will continue to isolate all people with dementia from normal social life. Significant others, formal and informal caregivers, policy makers and elderly peers have to reverse the negative effects of the primary and secondary deviance. Caregivers will need to control some of their desires to be protective, by giving people with dementia more opportunity to undertake activities of daily living at their own pace. As Forster (1989), in her fictional account of caregiving illustrates, there exists a continuing balance between protection and risk

402 JOURNAL OF AGING STUDIES Vol. 6lNo. 4/l 992

taking. There is a great danger, however, that in being protective, society infantilizes

people with dementia as well as other old people in care (Hockey and James 1990). Second, there is an urgent need to provide alternative theories to complement the

bio-medical theories of dementia. Only by developing and testing other theories, such as that outlined by Kitwood (1990), will the dominance of the bio-medical model be reduced and the inevitable social definitions which are used in every day interaction with people with dementia, be discarded. It is this challenge which provides social gerontology with a way forward.

ACKNOWLEDGEMENTS This article is a revised version of a paper presented to the British Society of Gerontology Annual Conference in Durham in September 1990. The author thanks

the participants of the conference and colleagues in the Centre for Health Services Research for their help in preparing this article, particularly Senga Bond, Theresa Dowswell, Wendy Clarke,

Barbara Gregson, Barbara Ingman, Ann Jacoby and Monica Smith.

REFERENCES

Binney, E. A., C. L. Estes, and S. R. Ingman. 1989. “Medicalization, Public Policy and the Elderly: Social Services in Jeopardy?” Social Sciences & Medicine 30(7): 761-771.

Bond, J. 1987. “Psychiatric Illness in Later Life: A Study of the Prevalence in a Scottish Population.’ International Journal of Geriatric Psychiatry 2: 39-57.

Brayne, C. and D. Ames. 1988. “The Epidemiology of Mental Disorder in Old Age.’ In Mental

Health Problems in Old Age, edited by B. Gearing, M. L. Johnson, and T. Heller. Chichester: Wiley.

Conrad, P. 1975. “The Discovery of Hyperkinesis: Notes on the Medicalization of Deviant Behaviour.” Social Problems 23: 12-21.

Estes, C. L. and E. A. Binney. 1989. “The Biomedicalization of Aging: Dangers and Dilemmas.” 7’he Gerontologist 29 (5): 587-596.

Forster, M. 1989. Have the Men Had Enough? London: Penguin Books. Friedson, E. 1970. Profession of Medicine. A Study of the Sociology of Applied Knowledge.

New York: Dodd, Mead.

Goffman, E. 1961. Asylum: Essays on the Social Situation of Mental Patients and Other Inmates. New York: Anchor.

Gubrium, J. F. 1986. Old Timers and Alzheimers: The Descriptive Organization of Senility. London: JAI Press.

Gubrium, J. F. and R. J. Lynott. 1987. “Measurements and the Interpretation of Burden in the Alzheimer’s Disease Experience.” Journal of Aging Studies 1: 265-285.

Henderson, A. S. and D. W. K. Kay. 1984. “The Epidemiology of Mental Disorders in the Aged. Pp. 53-88 in Handbook of Studies on Psychiatry and Old Age, edited by D.W.K. Kay and G.D. Burrows. Amsterdam: Elsevier.

Hockey, J. and A. James. 1990. “Metaphors of Marginality: Ageing, Infantilisation and Personhood.” Paper presented at the British Society of Gerontology Annual Conference, Durham, September, 21-23, 1990.

House of Commons Social Services and Committee. 1990. Community Care: Curers, Fifth Report. London: HMSO.

Illich, I. 1976. Medical Nemesis: The Expropriation of Health. London: Calder & Boyars. Jorm, A. F. 1990. The Epidemiology of AlzheimerS Disease and Related Disorders. London:

Chapman & Hall.

The Medicalization of Dementia 403

Jorm, A. F., A. E. Korten, and A. S. Henderson. 1987. “The Prevalence of Dementia: A Quantitative Integration of the Literature.” Acta Psychiatrica Scandinavica 76: 465479.

Kay, D. W. K., A. S. Henderson, R. Scott, J. Wilson, D. Rickwood, and D. Grayson. 1985. “Dementia and Depression among the Elderly Living in the Jobart Community: The Effect of the Diagnostic Criteria on the Prevalence Rates.” Psychological Medicine 15: 771-788.

Kitwood, T. 1989. “Brain, Mind and Dementia: With Particular Reference to Alzheimer’s Disease.” Ageing and Society 9: l-15.

~. 1990. “The Dialectics of Dementia: With Particular Reference to Alzheimer’s Disease.” Ageing and Society 10: 177-196.

Lemert, E. 1964. “Social Structure, Social Control and Deviation.” Pp. 57-97 in Anomie and Deviant Behaviour, edited by M. B. Clinard. New York: Free Press.

Lorimer, D. 1990. Whole in One: The Near-death Experience and the Ethic of Interconnectedness. London: Arkana (Penguin Books Ltd).

Lyman, K. A. 1988. “Bringing the Social Back In: A Critique of the Biomedicalization of Dementia.” 27ze Gerontologist 29 (5): 597-605.

~. 1989. “Infantilization of Elders: Day Care for Alzheimer’s Disease Victims.” In Research in the Sociology of Health Care, edited by P. Wertz. Greenwich, CT: JAI Press.

Parker, G. 1985. “With Due Care and Attention: A Review of research on Informal Care.” Occasional Paper No. 2. London: Family Policy Studies Centre.

Secretary of State for Health, Social Security, Wales and Scotland. 1989. “Caring for People: Community Care in the Next Decade and Beyond.” CM849 (White Paper). London: HMSO.

Strauss, A. L. 1975. Chronic Illness and the Quality of Life. St. Louis: CV Mossby. Waitzkin, H. and B. Waterman. 1974. i%e Exploitation of Illness in Capitalist Society. New

York: Bobs Merrill. Woods, R. T. 1989. Alzheimer’s Disease: Coping with a Living Death. London and Canada:

Souvenir Press (E & A) Ltd. Zola, I. K. 1986. “The Medicalization of Aging and Disability: Problems and Prospects.” In

Toward a Unified Agenda: Proceedings of a National Conference on Disability and Aging, edited by C.W. Mahoney, C. L. Estes, and J. E. Heumann. San Francisco: lnstitute for Health & Aging, University of California.

~. 1972. “Medicine as an Institution of Social Control.” i%e Sociological Review 20(4): 487-504.