DISCRIMINATION AND DEMENTISM

DISCRIMINATION AND DEMENTISM

Timothy D. Epp, Ph.D., Murray Alzheimer Research and Education Program, University of Waterloo

As humans, we assign meaning and worth to our environment and all that it includes. However, in doing so we often exclude some individuals from full participation in our society, and sometimes even from the protection of human rights. In a society which places strong emphasis on autonomy, independence, mental capacity, ability, and verbal fluency, people suffering from dementia are often marginalized and denied essential rights, privileges and protection.

The term ‘ageism’ was brought into use by Robert Butler in 1965 to describe discrimination on the basis of age, and to challenge the presumption that all elderly people were ‘senile’. However, in The Moral Challenge of Alzheimer Disease, professor Stephen Post suggests that the term ‘ageism’ does not fully convey the experiences of social exclusion for persons with dementia. Instead, he identifies resentment against the deeply forgetful as ‘dementism’. In spite of the brain’s continued but altered functioning, and the individual’s continued expression of needs and desires, we place these individuals in a category of ‘no longer essentially human’, irrespective of the remaining qualities of personhood in individuals with dementia, including humour and self-awareness.

Identifying dementia as the result of disease clearly indicates the negativity which we assign to this condition, to the point where we justify physician-assisted suicide for persons with dementia in the name of preserving normalcy (Post, 2000a). Alzheimer disease has recently been identified as reaching epidemic proportions, a proclamation which has carried with it a tendency to blame the elderly, and particularly those with dementia, for being ‘bed-blockers’ and imposing a burden on society of spiraling healthcare costs.

Care-providers may over-generalize, attributing all undesirable behavior ‘dementia’. At the same time, doctors may assume that all elderly people are equally subject to dementia. A recent survey of Ontario physicians found that many family doctors fail to treat elderly persons for conditions including dementia, because they take more time to assess and often have more complaints. "As a result, doctors tend to normalize mental disorders for those late in life, expecting them to be depressed as a result of pain and suffering from other ailments" (Toronto Star, May 10, 1999).

Current practices in long-term care facilities often generalize and treat all people over 65 as identical, ignoring the cognitive and behavioural needs of persons with dementia. This unfairly limits access to required services for people with dementia, threatening the lives and dignity of this segment of the population. Hospital restructuring often focuses on acute care, while funding for long-term care is diminished. The cost of drugs used to treat Alzheimer disease is a barrier for elderly persons not covered by health plans. These drugs could maximize quality of life, minimize pain, stress. The combination of these factors means that individuals with dementia seldom have access to adequate services. The vulnerable condition of elderly people, particularly those with dementia, also puts them at risk for infantalization by care providers, and for financial, verbal and physical abuse.

Tom Kitwood writes that disablement in dementia is not so much the result of the disease process, but of the person’s social environment (Kitwood & Benson, 1995). ‘Normal’ people seldom choose to socialize with individuals with dementia, unless they are joined by a previous relationship of friendship or family. Caregiving relationships are most often described in terms of ‘caregiver burden’. However, recent studies have revealed that persons with dementia often ask for increased involvement in decision-making, conversations, and activities. People with dementia still need to be loved and to feel that they contribute. We must remember that we are all connected by virtue of being human; we are all at some state in the process of cognitive decline.

In order to assist persons with dementia in achieving quality of life, multiple avenues of action must be considered. Human rights legislation needs to be implemented and enforced to protect against discrimination on the basis of age and cognitive functioning. Medical schools still allocate a minimal percentage of their curriculum to dementia. Care-providers need to receive more in-depth training in order to support persons with dementia.

Even after diagnosis, people with dementia can live a happy and worthwhile life, provided the appropriate information and support. Care-providers need to get to know the person and his/her history in order to understand their present behavior. In planning for care, they need to respect the voice and opinions of those they serve. Post (2000) identifies the moral challenge of dementia as requiring us to overcome its stigma, to develop "an ethics based on the essential unity of human beings and on an assertion of equality despite unlikeness of mind" (p.5).

Timothy D. Epp is a Postdoctoral Research Fellow at the Murray Alzheimer Research and Education Program (MAREP). MAREP was founded by Ken Murray, based on his experience of caregiving for his wife while she suffered from Alzheimer’s disease. MAREP is located in the Centre for Applied Health Research at the University of Waterloo, and serves as a bridge between research and practice for quality of life and care for persons with Alzheimer’s disease and other forms of dementia.