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Publisher: Social Research Association
Languages: English
Types: Article
Subjects:

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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.
    • Morgan, S. and Woods, R.T. (2010) Life review with people with dementia in care homes: A preliminary randomized controlled trial. Non-pharmacological Therapies in Dementia, 1 ((1)). pp. 43-60.
    • Moyle, W., Murfield, J.E., Griffiths, S.G. and Venturato, l. (2012) Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing 68(10).
    • Murphy, C. (1994) "It started with a sea-shell": life story work and people with dementia. Stirling: University of Stirling Dementia Services Development Centre.
    • Rand, S., and Caiels, J. (2015). Using Proxies to assess Quality of Life: A Review of the Issues and Challenges. Discussion Paper 2899. QORU: Personal Social Services Research Unit, University of Kent, Canterbury.
    • Ready, R. E., and Ott, B. R. (2003). Quality of Life measures for dementia. Health and Quality of Life Outcomes, 1, 11.
    • Russell, C. and Timmon,s S. (2009) 'Life story work and nursing home residents with dementia'. Nursing Older People 21: 28-32.
    • Ryan, T. and Walke,r R. (1985) Making life story books. London: British Agencies for Adoption and Fostering.
    • 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.
    • Psychological Medicine. 37:737 746.
    • 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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