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Publisher: Social Research Association
Languages: English
Types: Article

Classified by OpenAIRE into

mesheuropmc: mental disorders
People with dementia are often excluded from taking part in research because of perceived difficulties in consent, capacity and communication. We argue that involving people with dementia in research is important, and describe how we involved people with dementia as both advisers and participants in research about the use of life story work. \ud \ud Researchers worked in partnership with Innovations in Dementia, who supported a network of advisers with dementia. Focus groups were arranged to ensure meaningful contributions by people with dementia. It was difficult to use standardised quality-of-life measures, and we describe the challenges faced with capacity and consent, recruitment and selection, and data collection.\ud \ud We suggest there is a need for (a) new tools for measuring quality of life of people with dementia which do not require participants to respond in prescribed ways, and (b) ethics and consent processes which are appropriate for non-medical research and which facilitate the involvement of people with dementia.
  • The results below are discovered through our pilot algorithms. Let us know how we are doing!

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    • McKeown, J., Clarke, A., Ingleton, C., Ryan, T., Repper, J. (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5: 148-158.
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    • Smith, S.C., Lamping, D.L., Banerjee, S., Harwood, R.H., Foley, B., Smith, P., Cook, J.C., Murray, J., Prince, M., Levin, E., Mann, A., Knapp, A. (2007) The development of a new measure of health related quality of life for people with dementia: DEMQOL.
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    • Woods, B., Spector, A. E., Jones, C. A., Orrell, M., Davies, S. P. (2005) Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, Issue 2. Art. No.:CD001120. DOI: 10.1002/14651858.CD001120.pub2.
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