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The National Institute of Health Research (NIHR) Research Capacity in Dementia Care Programme (RCDCP) aims to develop and evaluate interventions in line with the James Lind priorities for dementia research(1); complex intervention methods, and clinical relevance. The aim of this project is to explore the effect of memory cafes as an intervention for people with dementia and their carers. A memory café is a form of community based support group that has evolved from the Alzheimer cafe model, created in the Netherlands in 1997(2). The Alzheimer Café has clearly identified aims and structure(2) in comparison to other memory cafes, where this information is limited. Furthermore, despite their growing popularity and recognition in the National Dementia Strategy(3), there is a dearth of evidence on what they do and the experiences of the people that use them; and no wide scale evaluation has been conducted(4).
Two recent systematic reviews on support groups for people with dementia concluded that whilst there are reported subjective benefits, no conclusions can be drawn on whether they promote positive psychosocial outcomes(5,6). Memory cafes are facilitated by volunteers and are not time limited, therefore may vary. A realist approach asks ‘what works for whom and in what circumstances(7). This theory driven, iterative methodology operationalises hunches and hypotheses into programme theories; comprising context, mechanism and outcome. These programme theories will be explored, tested and refined through realist review, stakeholder involvement and realist evaluation. The PhD student also brings personal experience of developing and running of a memory café.
1) The James Lind Alliance and the Alzheimer’s Society (2013) ‘Outcomes of the James Lind Alliance Dementia priority setting partnership’ available online at http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2226 accessed 28/3/2014
2) Miesen, B. and Jones, M.M. (2004) ‘The Alzheimer Café concept: A response to the trauma, drama and tragedy of dementia’ in Jones, M.M. and Miesen, B.M.L. (eds) Care-Giving in Dementia: Research and applications, Volume 3, Brunner-Routledge, East Sussex.
3) Commission for Rural Communities (2008) Service needs and delivery following dementia diagnosis: evidence based review, Commission for Rural Communities, Gloucestershire.
4) Toms, G.R., Clare, L., Nixon, J. and Quinn, C. (2015) ‘A systematic narrative review of support groups for people with dementia’ International Psychogeriatrics, vol27(9), pp1439-1465
5) Toms, G.R., Clare, L., Nixon, J. and Quinn, C. (2015) ‘A systematic narrative review of support groups for people with dementia’ International Psychogeriatrics, vol27(9), pp1439-1465
6) Leung, P., Orrell, M. and Orgeta, V. (2015) ‘Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature’ International Journal of Geriatric Psychiatry, vol30(1), pp1-9
7) Pawson, R. and Tilley, N. (1997) Realistic Evaluation, SAGE Publications Ltd, London.
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