Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-22T18:42:27.560Z Has data issue: false hasContentIssue false

When the profession becomes personal: dementia care practitioners as family caregivers

Published online by Cambridge University Press:  03 February 2012

Jill Manthorpe*
Affiliation:
Social Care Workforce Research Unit, King's College London, London, UK
Kritika Samsi
Affiliation:
Social Care Workforce Research Unit, King's College London, London, UK
Joan Rapaport
Affiliation:
Social Care Workforce Research Unit, King's College London, London, UK
*
Correspondence should be addressed to: Professor Jill Manthorpe, Social Care Workforce Research Unit, King's College London, 5th floor, Melbourne House, Aldwych, London WC2R 2LS, UK. Phone: +44 020 7848 1683; Fax: +44 020 7848 1866. Email: [email protected].
Get access

Abstract

Background: Little is known about the impact of caring experience on the practice of dementia care professionals. Few research studies covering dementia practice ask about personal experiences of providing care or having a family member with dementia. In England and Wales, the Mental Capacity Act (MCA) 2005 provided a new legal framework for planning and decision-making in the event of possible loss of capacity. Professional activities in this area include advice and assistance with arranging proxy decision-making, establishing wishes, and advance decisions. The aim of this paper is to present interview data from dementia care professionals with family experiences of dementia and their reflections on decision-making frameworks.

Methods: A total of 123 dementia care professionals working in community and care home settings were interviewed (2007–2010) about their experiences and expectations of the MCA 2005. Additional questions covered experiences of being family members or carers of a person with dementia and any use of the planning and decision-making provisions of the MCA in personal and family contexts. Data were analyzed thematically.

Results: Seventy practitioners had experience of family members with dementia and family caring. Decision-making and planning were viewed as easier under the MCA but tensions could arise around loss of decision-making capacity or family dispute. Empathy for caregiving situations and how things could have been different were reflected upon.

Conclusions: Trainers, clinical supervisors, and researchers in dementia care may build upon personal experience of some practitioners to promote empathy with other family carers and the provision of timely information and advice.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2012

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

Anon (2009). Waiting for death from dementia. End of Life Care, 3, 5354.Google Scholar
Arksey, H. (2003). People into employment: supporting people with disabilities and carers into work. Health and Social Care in the Community, 11, 283292.CrossRefGoogle ScholarPubMed
Arksey, H., Kemp, P., Glendinning, C., Kotchetkova, I. and Tozer, R. (2005). Carers’ Aspirations and Decisions Around Work and Retirement. Research Report No. 290. Leeds: Department for Work and Pensions.Google Scholar
Christie, A. and Kruk, E. (1998). Choosing to become a social worker: motives, incentives, concerns and disincentives. Social Work Education, 17, 2134.CrossRefGoogle Scholar
Christie, A. and Weeks, J. (1998). Life experience: a neglected form of knowledge in social work education and practice. Practice, 10, 5568.CrossRefGoogle Scholar
Comas-Herrera, A., Wittenberg, R., Pickard, L. and Knapp, M. (2007). Cognitive impairment in older people: future demand for long-term care services and the associated costs. International Journal of Geriatric Psychiatry, 22, 10371045.CrossRefGoogle ScholarPubMed
DiBartolo, M. C. (2002). On her own terms. Journal of Gerontological Nursing, 28, 5556.CrossRefGoogle ScholarPubMed
Emanuel, E. J., Fairclough, D. L., Slutsman, J. and Emanuel, L. L. (2000). Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Annals of Internal Medicine, 132, 451459.CrossRefGoogle ScholarPubMed
George, M. (2001). It Could be You: A Report on the Chances of Becoming a Carer. London: Carers UK.Google Scholar
HM Government (2008). Carers at the Heart of 21st-Century Families and Communities. London: The Stationery Office.Google Scholar
Hughes, J. (2005). Bringing emotion to work: emotional intelligence, employee resistance and the reinvention of character. Work, Employment and Society, 19, 603625.CrossRefGoogle Scholar
Manthorpe, J., Samsi, K., Heath, H. and Charles, N. (2011). “Early days:” knowledge and use of the Mental Capacity Act 2005 by care home managers and staff. Dementia, 10, 283298.CrossRefGoogle Scholar
Mooney, A. and Statham, J. with Simon, A. (2002). The Pivot Generation: Informal Care and Work after Fifty. Bristol: Policy Press.Google Scholar
Morrison, T. (2007). Emotional intelligence, emotion and social work: context, characteristics, complications and contribution. British Journal of Social Work, 37, 245263.CrossRefGoogle Scholar
Parker, J. and Merrylees, S. (2002). Why become a professional? Experiences of care-giving and the decision to enter social work or nursing education. Learning in Health and Social Care, 1, 105114.CrossRefGoogle Scholar
Sims-Gould, J., Byrne, K., Craven, C., Martin-Matthews, A. and Keefe, J. (2010). Why I became a home support worker: recruitment in the home health sector. Home Health Care Services Quarterly, 29, 171194.CrossRefGoogle ScholarPubMed
Stevens, M. et al. (2012). Helping others or a rewarding career? Investigating student motivations to train as social workers in England. Journal of Social Work, 12, 1636.CrossRefGoogle Scholar
Stiell, B., Shipton, L. and Yeandle, S. (2006). Caring for sick or disabled children: parents' experiences of combining work and care. London: Carers UK.Google Scholar
Strauss, A. L. and Corbin, J. M. (1990). Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage Publications, 270 pages.Google Scholar
Sullivan, M. P. (2009). Social workers in community care practice: ideologies and interactions with older people. British Journal of Social Work, 39, 13061325Google Scholar
Vickerstaff, S., Loretto, W., Milne, A., Alden, E., Billings, J. and White, P. (2009). Employment Support for Carers. Research Report No. 597. London: Department for Work and Pensions.Google Scholar
Waddell, G. and Burton, K. (2006). Is Work Good for Your Health and Well-Being? Norwich: The Stationery Office.Google Scholar
Wald, C., Fahy, M., Walker, Z. and Livingston, G. (2003). What to tell dementia caregivers: the rule of threes. International Journal of Geriatric Psychiatry, 18, 313317.CrossRefGoogle ScholarPubMed
Wilson, G. and McCrystal, P. (2007). Motivations and career aspirations of MSW students in Northern Ireland. Social Work Education, 26, 3552.CrossRefGoogle Scholar
Yeandle, S., Bennett, C., Buckner, L., Fry, G. and Price, C. (2007). Stages and Transitions in the Experience of Caring. CES Report Series No. 1, London: Carers UK.Google Scholar
Yeandle, S., Bennett, C., Buckner, L., Shipton, L. and Suokas, A. (2006). Who Cares Wins. London: Carers National Association.Google Scholar
Zuba, M. and Schneider, U. (2011). Absenteeism and Work-To-Family Conflict among Employed Informal Caregivers in Europe. Paper presented at the 9th annual ESPAnet conference on “Sustainability and transformation in European Social Policy,” Valencia, Spain, 10 September 2011.Google Scholar