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• W140594533 abstract "The British social psychologist Tom Kitwood has been a major influence in bringing the person with dementia onto center stage in dementia care. Kitwood, who died in 1998, left a rich legacy of theory and practice development (Woods, 1999), including his acclaimed book Dementia Reconsidered: The Person Comes First (1997), which will undoubtedly serve as a resource, inspiration, and vision for years to come. He often characterized his work as seeking to change the emphasis in dementia care from a focus on the disorder to a focus on the person. Too often, our focus on the disorder has prevented us from appreciating the experience of the person with dementia and the need for care approaches that are person-centered. Dementia challenges our assumptions about what it means to be a person. Descriptions of dementia as a living while accurately reflecting the sense of bereavement experienced by family caregivers, add to the common conception of the person with dementia as being not fully alive, or even not fully human. Dementia may be seen by many as a state worse than death, and it is often linked with discussions of voluntary euthanasia. Such a position has profound implications for the type of care offered and for the skills required of and the status given to those providing such care. Efforts to change the focus in dementia have taken various forms in recent years. EMPHASIZING INDIVIDUALITY During the 1980s, emphasis was given to the individuality of each person with dementia, to the person's rights as a citizen and the need for respect and dignity, in a strong assertion that people with dementia should continue to be treated as human beings (Holden and Woods, 1982; King's Fund, 1986). The person with dementia was not an object, not a vegetable, not an empty body, not a child, but an adult, who, given support, might exercise choices and respond to a respectful approach. This movement for recognition of individuality in dementia care drew some inspiration from the application of principles of normalization, which had had a major impact in combating the devaluation, stigma, and social exclusion associated with other disabilities, most notably learning disabilities. GIVING VOICE TO THE PERSON WITH DEMENTIA The emphasis on the essential individuality and humanity of the person with dementia, and subsequent focus on the plight of caregivers, brought great improvements, but the voice and perspective of the person with dementia continued to be too often absent (Correll and Schulz, 1993). For example, the emphasis in research and practice on the situation of the family caregiver has meant that the caregiver can no longer be described as the forgotten sufferer in relation to dementia, which is a positive development. But, at the case level, practitioners find themselves talking almost entirely to the caregiver, even when the person with dementia is in the room. At a research level, in intervention studies a broad range of outcome measures (strain, depression, burden) address the impact on the caregiver, but a very narrow range has been hypothesized for the person with dementia. Remaining at home, or being admitted to institutional care, or death appear to be the only categories of outcome considered. There has been the assumption that people with dementia are unable to communicate in a meaningful way, invalidating their participation in decision making about their own situation as well as rendering their lived experience and their perspective as being impossible to research. The emphasis on the lack of financial and legal competency evident in severe dementia obscures areas of resource and competence that may be present. Recently, a health service research ethics review committee queried our proposal to ask people with dementia about their childhood relationships with their parents. The committee seemed to be suggesting that their responses could not possibly be reliable in view of their dementia. …" @default.
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• W140594533 date "1999-10-01" @default.
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• W140594533 title "The Person in Dementia Care" @default.
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