Boyd, James Robert
The values history: an empowering approach for people with dementia.
PhD thesis, University of Glasgow.
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The Values History was originally developed to identify core values and beliefs important to individuals with terminal illnesses as a basis for medical treatment should they lose capacity (Doukas and McCulloch, 1991).
The research shows that the standard paradigm of empowerment, which involves individuals with dementia having a clear understanding of the prognosis of the illness to make plans for the future, is complex. Twelve people diagnosed in the early stages of dementia were interviewed twice to complete individual Values Histories. Their carers were interviewed separately and then together with the participants with dementia. Despite knowing their diagnosis and appreciating the opportunity to discuss their current feelings about the illness, only a few participants were able to discuss, or indeed wanted to discuss, the prognosis or future in relation to dementia. No participants wanted to view long term care establishments. However, the research showed that the vast majority were clearly able to document their values and aspects of future care related to old age rather than dementia. Carers confirmed accuracy of their values.
With regards to the impact of Values Histories on future caregivers, forty professionals were interviewed. Two Values Histories were shared with the participants and vignettes were used to explore the extent to which they would refer to individuals’ past values and wishes. The study showed that the vast majority of professionals would refer to the documents and find them useful. The majority would attempt to maintain past wishes and values, although not if it caused agitation. General values, medical values, family relationships, religious values and end of life decisions were areas that were considered most beneficial. The person’s perception of independence and future risk taking were the areas that caused most controversy.
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