Research Article

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

Jill Manthorpe^a1 c1, Kritika Samsi^a1 and Joan Rapaport^a1

^a1 Social Care Workforce Research Unit, King's College London, London, UK

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.

(Received September 23 2011)

(Revised October 20 2011)

(Revised December 14 2011)

(Accepted December 19 2011)

(Online publication February 03 2012)

Key words:

• carers;
• dementia;
• mental capacity;
• Alzheimer's disease

Correspondence:

^c1 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: jill.manthorpe@kcl.ac.uk.