Hostname: page-component-78c5997874-v9fdk Total loading time: 0 Render date: 2024-11-10T17:04:33.142Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  08 November 2016

CHARLOTTE L. CLARKE ,
SARAH E. KEYES ,
HEATHER WILKINSON ,
E. JOANNA ALEXJUK ,
JANE WILCOCKSON ,
LOUISE ROBINSON ,
JOANNA REYNOLDS ,
SIOBHAN MCCLELLAND ,
PHILLIP HODGSON  and
LYNN CORNER
...Show all authors
CHARLOTTE L. CLARKE*
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
SARAH E. KEYES
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
HEATHER WILKINSON
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
E. JOANNA ALEXJUK
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
JANE WILCOCKSON
Affiliation:
School of Health in Social Science, University of Edinburgh, UK. Department of Healthcare, Northumbria University, Newcastle, UK.
LOUISE ROBINSON
Affiliation:
Institute of Ageing & Health, Newcastle University, Newcastle upon Tyne, UK.
JOANNA REYNOLDS
Affiliation:
Department of Public Health and Wellbeing, Northumbria University, Newcastle, UK.
SIOBHAN MCCLELLAND
Affiliation:
Health Economics & Policy Research Unit, Glamorgan University and Macmillan Cancer Support, London, UK.
PHILLIP HODGSON
Affiliation:
Department of Healthcare, Northumbria University, Newcastle, UK.
LYNN CORNER
Affiliation:
Institute of Ageing & Health, Newcastle University, Newcastle upon Tyne, UK.
MIMA CATTAN
Affiliation:
Department of Public Health and Wellbeing, Northumbria University, Newcastle, UK.
*
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
Get access Rights & Permissions [Opens in a new window]

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.

Keywords

dementiastrategypeer supportdementia advisersmixed methodsquality of life
Type
Articles
Information
Ageing & Society , Volume 38 , Issue 2 , February 2018 , pp. 378 - 402
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Association 2015. 2015 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 11, 3, 332–8.CrossRefGoogle Scholar
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].Google Scholar
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.Google Scholar
Bartlett, R. and O'Connor, D. 2010. Broadening the Dementia Debate: Towards Social Citizenship. Policy Press, London.Google Scholar
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.Google Scholar
Bernard, M. and Scharf, T. 2007. Critical Perspectives on Ageing Societies. Policy Press, London.Google Scholar
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.Google Scholar
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.Google Scholar
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, 491–502.Google Scholar
Bryden, C. 2005. Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley, London.Google Scholar
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.Google Scholar
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, 9–30.Google Scholar
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.Google Scholar
Clarke, C. 2008. Editorial: Risk and long-term conditions: the global challenge. Journal of Nursing & Healthcare of Chronic Illnesses, 17, 5A, 1–3.Google Scholar
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.Google Scholar
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].Google Scholar
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.Google Scholar
Collins, A. and Smyer, M. A. 2005. The resilience of self-esteem in late adulthood. Journal of Aging and Health, 17, 4, 471–89.CrossRefGoogle ScholarPubMed
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.Google Scholar
Creswell, J. W. 2003. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. Sage, London.Google Scholar
DeBaggio, T. 2003. When It Gets Dark: An Enlightened Reflection on Life with Alzheimer's. Free Press, New York.Google Scholar
Department of Health 2001. National Service Framework for Older People. Department of Health, London.Google Scholar
Department of Health 2004. Choosing Health: Making Healthy Choices Easier. The Stationery Office, London.Google Scholar
Department of Health 2009. Living Well with Dementia: A National Dementia Strategy. Department of Health, London.Google Scholar
Department of Health 2012. Prime Minister's Challenge on Dementia. Department of Health, London.Google Scholar
Department of Health 2015. Prime Minister's Challenge on Dementia 2020. Department of Health, London.Google Scholar
Dewing, J. 2007. Participatory research: a method for process consent with persons who have dementia. Dementia, 6, 1, 11–25.Google Scholar
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.Google Scholar
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.Google Scholar
Fosnot, C. 1996. Constructivism, Theory, Perspectives and Practice. Teacher's College Press, New York.Google Scholar
French, S. and Swain, J. 2012. Working with Disabled People in Policy and Practice: A Social Model. Palgrave Macmillan, Basingstoke, UK.Google Scholar
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.Google Scholar
Gignac, M. A. M. and Gottlieb, B. H. 1996. Caregivers’ appraisals of efficacy in coping with dementia. Psychology and Aging, 11, 2, 214–25.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Harris, P. 2012. Maintaining friendships in early stage dementia: factors to consider. Dementia, 11, 3, 305–14.Google Scholar
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.Google Scholar
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.Google Scholar
Johnson, R. and Onwuegbuzie, A. J. 2004. Mixed methods research: a research paradigm whose time has come. Educational Researcher, 33, 7, 14–26.Google Scholar
Joseph Rowntree Foundation 2012. Dementia Without Walls Available online at http://www.jrf.org.uk/work/worlarea/dementia-without-walls [Accessed 29 November 2012]Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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, 1996–2021.Google Scholar
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.Google Scholar
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.Google Scholar
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, 13–30.Google Scholar
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.Google Scholar
Office for National Statistics 2010. Measuring Outcomes for Public Service Users (MOPSU) Project . Final Report, Office of National Statistics, London.Google Scholar
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.Google Scholar
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, 68–75.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.Google Scholar
Sorensen, L. Waldorf, F. and Waldemar, G. 2008. Coping with mild Alzheimer's disease. Dementia, 7, 3, 287–9.Google Scholar
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Ward, R., Howorth, M., Wilkinson, H., Campbell, S. and Keady, J. 2011. Supporting the friendships of people with dementia. Dementia, 11, 3, 287–303.CrossRefGoogle Scholar
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.Google Scholar
Windle, G. 2011. What is resilience? A review and concept analysis. Reviews in Clinical Gerontology, 21, 2, 152–69.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
World Health Organization 2012. Dementia: A Public Health Priority. World Health Organization and ADI, London.Google Scholar