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‘I just want to get on with my life’: a mixed-methods study of active management of quality of life in living with dementia

  • CHARLOTTE L. CLARKE (a1), SARAH E. KEYES (a1), HEATHER WILKINSON (a1), E. JOANNA ALEXJUK (a1), JANE WILCOCKSON (a1) (a2), LOUISE ROBINSON (a3), JOANNA REYNOLDS (a4), SIOBHAN MCCLELLAND (a5), PHILLIP HODGSON (a2), LYNN CORNER (a3) and MIMA CATTAN (a4)...

Abstract

The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.

Copyright

Corresponding author

Address for correspondence: Charlotte Clarke, School of Health in Social Science, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, UK E-mail: charlotte.clarke@ed.ac.uk

References

Hide All
Alzheimer's Association 2015. 2015 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 11, 3, 332–8.
Age UK 2012. Work and Learning UK fact sheet. Available online at http://www.ageuk.org.uk/documents/en-gb/factsheets/work%20and%20learning%20fact%20sheet.pdf?dtrk=true [Accessed 8 August 2013].
Banerjee, S. S., Smith, S. C., Lamping, D. L., Harwood, R. H., Foley, B. B., Smith, P. P. and Knapp, M. M. 2006. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery & Psychiatry, 77, 2, 146–8.
Bartlett, R. and O'Connor, D. 2010. Broadening the Dementia Debate: Towards Social Citizenship. Policy Press, London.
Beard, R. and Fox, P. 2008. Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science and Medicine, 66, 7, 1509–20.
Bernard, M. and Scharf, T. 2007. Critical Perspectives on Ageing Societies. Policy Press, London.
Botsford, J., Clarke, C. L. and Gibb, C. E. 2011. Research and dementia, caring and ethnicity: a review of the literature. Journal of Research in Nursing, 16, 5, 437–49.
Botsford, J., Clarke, C. L. and Gibb, C. E. 2012. Dementia and relationships: experiences of partners in minority ethnic communities. Journal of Advanced Nursing, 68, 10, 2207–17.
Brooks, A., Farquharson, L., Burnell, K. and Charlesworth, G. 2014. A narrative enquiry of experienced family carers of people with dementia volunteering in a carer supporter programme. Journal of Community & Applied Social Psychology, 24, 6, 491502.
Bryden, C. 2005. Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley, London.
Cantley, C. and Bowes, A. 2004. Dementia and social inclusion: the way forward. In Innes, A., Archibald, C. and Murphy, C. (eds), Dementia and Social Inclusion: Marginalized Groups and Marginalized Areas of Dementia Research, Care and Practice. Jessica Kingsley, London, 255–71.
Clare, L., Rowlands, J. and Quin, R. 2008. Collective strength: the impact of developing a shared social identity in early-stage dementia. Dementia, 7, 1, 930.
Clare, L. and Woods, B. 2003. Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia. Cochrane Database of Systematic Reviews, issue 4, CD003260.
Clarke, C. 2008. Editorial: Risk and long-term conditions: the global challenge. Journal of Nursing & Healthcare of Chronic Illnesses, 17, 5A, 13.
Clarke, C., Keady, J., Wilkinson, H., Gibb, C., Luce, A., Cook, A. and Williams, L. 2010. Dementia and risk: contested territories of everyday life. Journal of Nursing & Healthcare of Chronic Illnesses, 2, 2, 102–12.
Clarke, C. L., Keyes, S. E., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Reynolds, J., McClelland, S., Hodgson, P., Corner, L. and Cattan, M. 2013. Healthbridge: The National Evaluation of Peer Support Networks and Dementia Advisers in Implementation of the National Dementia Strategy for England. Department of Health, London. Available online at https://www.gov.uk/government/publications/peer-support-networks-and-dementia-advisers-evaluation [Accessed 11 October 2013].
Clarke, C. L., Keyes, S. E., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Corner, L. and Cattan, M. 2014. Organisational space for partnership and sustainability: lessons from the implementation of the National Dementia Strategy for England. Health & Social Care in the Community, 22, 6, 634–45.
Collins, A. and Smyer, M. A. 2005. The resilience of self-esteem in late adulthood. Journal of Aging and Health, 17, 4, 471–89.
Corbett, A., Stevens, J., Aarsland, D., Day, S., Moniz-Cook, E., Woods, R., Brooker, D. and Ballard, C. 2012. Systematic review of services providing information and/or advice to people with dementia and/or their caregivers. International Journal of Geriatric Psychiatry, 27, 6, 628–36.
Creswell, J. W. 2003. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. Sage, London.
DeBaggio, T. 2003. When It Gets Dark: An Enlightened Reflection on Life with Alzheimer's. Free Press, New York.
Department of Health 2001. National Service Framework for Older People. Department of Health, London.
Department of Health 2004. Choosing Health: Making Healthy Choices Easier. The Stationery Office, London.
Department of Health 2009. Living Well with Dementia: A National Dementia Strategy. Department of Health, London.
Department of Health 2012. Prime Minister's Challenge on Dementia. Department of Health, London.
Department of Health 2015. Prime Minister's Challenge on Dementia 2020. Department of Health, London.
Dewing, J. 2007. Participatory research: a method for process consent with persons who have dementia. Dementia, 6, 1, 1125.
Durantini, M., Albarracin, D., Mitchell, A., Earl, A. and Gillette, J. 2006. Conceptualizing the influence of social agents of behavior change: a meta-analysis of the effectiveness of HIV-prevention interventionists for different groups. Psychological Bulletin, 132, 2, 212–48.
Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K. and Kyngäs, H. 2014. Qualitative content analysis: a focus on trustworthiness. Sage Open, doi:10.1177/2158244014522633.
Fosnot, C. 1996. Constructivism, Theory, Perspectives and Practice. Teacher's College Press, New York.
French, S. and Swain, J. 2012. Working with Disabled People in Policy and Practice: A Social Model. Palgrave Macmillan, Basingstoke, UK.
Genoe, R., Dupuis, S. L., Keller, H. H., Martin, L. S., Cassolato, C. and Edward, H. G. 2010. Honouring identity through mealtimes in families living with dementia. Journal of Aging Studies, 24, 3, 181–93.
Gignac, M. A. M. and Gottlieb, B. H. 1996. Caregivers’ appraisals of efficacy in coping with dementia. Psychology and Aging, 11, 2, 214–25.
Gottlieb, B. and Rooney, J. 2004. Coping effectiveness: determinants and relevance to the mental health and affect of family caregivers of persons with dementia. Aging and Mental Health, 8, 4, 364–73.
Greenwood, N., Habibi, R., Mackenzie, A., Drennan, V. and Easton, N. 2013. Peer support for carers. American Journal of Alzheimer's Disease & Other Dementias, 28, 6, 617–26.
Guzman-Garcia, A., Hughes, J. C., James, I. A. and Rochester, L. 2012. Dancing as a psychosocial intervention in care homes: a systematic review of the literature. International Journal of Geriatric Psychiatry, 28, 9, 914–24.
Harris, P. 2012. Maintaining friendships in early stage dementia: factors to consider. Dementia, 11, 3, 305–14.
Heyman, B. 2010. Time and health risks. In Heyman, B., Shaw, M., Alaszewski, A. and Titterton, M. (eds), Risk, Safety, and Clinical Practice. Oxford University Press, Oxford, 107–22.
Janssen, B., Van Regenmortel, T. and Abma, T. 2011. Identifying sources of strength: resilience from the perspective of older people receiving long-term community care. European Journal of Ageing, 8, 3, 145–56.
Johnson, R. and Onwuegbuzie, A. J. 2004. Mixed methods research: a research paradigm whose time has come. Educational Researcher, 33, 7, 1426.
Joseph Rowntree Foundation 2012. Dementia Without Walls Available online at http://www.jrf.org.uk/work/worlarea/dementia-without-walls [Accessed 29 November 2012]
Keyes, S. E., Clarke, C. L., Wilkinson, H., Alexjuk, J., Wilcockson, J., Robinson, L., Reynolds, J., McClelland, S., Corner, L. and Cattan, M. 2014. ‘We're all thrown in the same boat…’ A qualitative analysis of peer support in dementia care. Dementia, 15, 4, 560–77.
Keyes, S. E., Webber, S. H. and Beveridge, K. 2015. Empowerment through care: using dialogue between the social model of disability and an ethic of care to redraw boundaries of independence and partnership between disabled people and services. ALTER European Journal of Disability Research, 9, 3, 236–48.
Knapp, M., Bauer, A., Perkins, M. and Snell, T. 2013. Building community capital in social care: is there an economic case? Community Development Journal, 48, 2, 313–31.
Lehmann, U. and Sanders, D. 2007. Community Health Workers: What Do We Know About Them? The State of the Evidence on Programmes, Activities, Costs and Impact. References 276 on Health Outcomes of Using Community Health Workers. World Health Organization, Geneva.
Livingston, G., Johnston, K., Katona, C., Paton, J. and Lyketsos, C. 2005. Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 162, 11, 19962021.
May, M. and Contreras, R. 2006. Promotor(a)s, the organizations in which they work, and an emerging paradox: how organizational structure and scope impact promotor(a)s’ work. Health Policy, 82, 2, 153–66.
Mitchell, W. and Glendinning, C. 2007. A review of the research evidence surrounding risk perceptions, risk management strategies and their consequences in adult social care for different groups of service users. Working paper DHR 2180 01.07, Social Policy Research Unit, University of York, York, UK.
Morgan, D. 1999. Risk and family practices: accounting for change and fluidity in family life. In Silva, E. and Smart, C. (eds), In the New Family. Sage, London, 1330.
Moriarty, J., Sharif, N. and Robinson, J. 2011. Black and Minority Ethnic People with Dementia and Their Access to Support and Services. Social Care Institute for Excellence, London.
Office for National Statistics 2010. Measuring Outcomes for Public Service Users (MOPSU) Project . Final Report, Office of National Statistics, London.
Phinney, A., Chaudhury, H. and O'Connor, D. 2007. Doing as much as I can do: the meaning of activity for people with dementia. Aging and Mental Health, 11, 4, 384–93.
Reed, J., Richardson, E., Marais, S. and Moyle, W. 2008. Older people maintaining well-being: an International Appreciative Inquiry study. International Journal of Older People Nursing, 3, 1, 6875.
Robinson, P., Ekman, S., Meleis, A., Winblad, B. and Wahlund, L. 1997. Suffering in silence: the experience of early memory loss. Health Care in Later Life, 2, 2, 107–20.
Sabat, S. R. and Lee, J. M. 2012. Relatedness among people diagnosed with dementia: social cognition and the possibility of friendship. Dementia, 11, 3, 315–27.
Snyder, L. 2002. Social and family relationships: establishing and maintaining connections. In Harris, P. B. (ed.), The Person with Alzheimer's Disease: Pathways to Understanding the Experience. Johns Hopkins University Press, Baltimore, Maryland, 112–33.
Sorensen, L. Waldorf, F. and Waldemar, G. 2008. Coping with mild Alzheimer's disease. Dementia, 7, 3, 287–9.
Spector, A. and Orrell, M. 2010. Using a biopsychosocial model of dementia as a tool to guide clinical practice. International Psychogeriatrics, 22, 6, 957–65.
Springett, J., Owens, C. and Callaghan, J. 2007. The challenge of combining ‘lay’ knowledge with ‘evidence-based’ practice in health promotion: Fag Ends Smoking Cessation Service. Critical Public Health, 17, 3, 229–42.
St. John, T. 2004. Hidden shame – a review of the needs of Asian elders with dementia and their carers in a Kent community. Journal of Integrated Care, 12, 3, 20–6.
The Scottish Government 2011. Promoting Excellence: A Framework for All Health and Social Services Staff Working with People with Dementia, Their Families and Carers. The Scottish Government, Edinburgh, UK.
Visram, S., Clarke, C. and White, M. 2014. Making and maintaining lifestyle changes with the support of a lay health advisor: longitudinal qualitative study of health trainer services in England. PLoS ONE, 9, 5, e94749.
Von Kutzleben, M., Schmid, W., Halek, M., Holle, B. and Bartholomeyczik, S. 2012. A systematic review on the subjective experiences of persons with dementia. Aging and Mental Health, 16, 3, 378–90.
Ward, R., Howorth, M., Wilkinson, H., Campbell, S. and Keady, J. 2011. Supporting the friendships of people with dementia. Dementia, 11, 3, 287303.
Whittemore, R., Rankin, S., Callahan, C., Leder, M. and Carroll, D. 2000. The peer advisor experience providing social support. Qualitative Health Research, 10, 2, 260–76.
Windle, G. 2011. What is resilience? A review and concept analysis. Reviews in Clinical Gerontology, 21, 2, 152–69.
Woods, R. T., Aguirre, E., Spector, A. E. and Orrell, M. 2012. Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews, issue 2, CD005562.
Woods, R. T., Bruce, E., Edwards, R. T., Hounsome, B., Keady, J., Moniz-Cook, E. D., Orrell, M. and Russell, I. T. 2009. Reminiscence groups for people with dementia and their family carers: pragmatic eight-centre randomised trial of joint reminiscence and maintenance versus usual treatment: a protocol. Trials, 10, 64, doi:10.1186/1745-6215-10-64.
World Health Organization 2012. Dementia: A Public Health Priority. World Health Organization and ADI, London.
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