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University of Southampton Research Repository Eprints Soton University of Southampton Research Repository ePrints Soton Copyright © and Moral Rights for this thesis are retained by the author and/or other copyright owners. A copy can be downloaded for personal non-commercial research or study, without prior permission or charge. This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the copyright holder/s. The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the copyright holders. When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given e.g. AUTHOR (year of submission) "Full thesis title", University of Southampton, name of the University School or Department, PhD Thesis, pagination http://eprints.soton.ac.uk UNIVERSITY OF SOUTHAMPTON FACULTY OF SOCIAL AND HUMAN SCIENCES SCHOOL OF EDUCATION The Experience of Caring for Someone with Dementia: A Biographical Study by Gillian Constable Thesis for the degree of Doctor of Education October 2011 UNIVERSITY OF SOUTHAMPTON FACULTY OF SOCIAL AND HUMAN SCIENCES School of Education Doctor of Education ABSTRACT THE EXPERIENCE OF CARING FOR SOMEONE WITH DEMENTIA: A BIOGRAPHICAL STUDY BY GILLIAN SANDRA CONSTABLE This research was about the lived experience of caring for someone with dementia. Six informal carers of people with dementia were interviewed. The carers were defined as „informal‟ as they were family and friends, and therefore unpaid. Five of the carers were women who had or were supporting their mothers, and one was a man, who had cared for a friend. Three carers identified as lesbian or gay. I wanted to hear the stories of a group that are generally neglected in research (Turnball, 2002). Carers are diverse with a range of needs, and I wished to discover if services were „gay friendly‟ or implicitly heterosexist. In addition I wanted lesbian and gay carers‟ stories to be heard and their contribution to be recognised. The research is important as there are an estimated 750,000 people living with dementia in the UK and 500,000 partners, family members and friends are involved in caring for someone with dementia at a value of £6 billion a year, if care was provided by health and social care services (Department of Health, 2009). The research method was biographical in relation to the participants‟ caring role. It explored three areas: the experience of caring, coping approaches and encounters with health and social care services. The interviews with carers took place in 2010 and the cared for had, or were living in: London, Wales, south-east and north-west England. The theoretical perspective of the research was person centred (Kitwood, 1997) set within the legislative and social policy framework for carers. The data was analysed primarily through pre-determined codes arising from the interview schedule and Skills for Care „Core Principles for Carers‟ (2010) but also searching for patterns within and across cases. The findings were that the carers did not experience the person with dementia as a burden, but contact with health and social services was often problematic due to the fragmentation of services, lack of one practitioner co-ordinating care, and an absence of knowledge about carers‟ legal entitlements. In addition services adopted a medical model of care focusing on the dementia of the cared for with limited interest in the cared for or carer‟s biography, consequently services were not person centred, or gay friendly. Carers‟ commitment to the person with dementia was on a continuum between the obligations of kinship and unconditional love. Positive aspects in the relationships endured in particular humour and shared activities. The messages for practice were that health and social care practitioners require training in person centred practice, as well as the legislation and policy framework for carers. Personalisation of services provides opportunities for shifting services from a task centred to person centred approach, including the development of gay friendly services. Contents DECLARATION OF AUTHORSHIP .................................................................................................. 5 ACKNOWLEDGEMENTS .................................................................................................................. 7 CHAPTER 1: THE EXPERIENCE OF CARING FOR SOMEONE WITH DEMENTIA: A BIOGRAPHICAL STUDY.. 9 INTRODUCTION ............................................................................................................................................. 9 WHY THIS RESEARCH MATTERS ........................................................................................................................ 9 THE AIMS OF THE RESEARCH ......................................................................................................................... 11 THE RESEARCH ........................................................................................................................................... 13 CHAPTER 2: LITERATURE REVIEW ............................................................................................. 15 INTRODUCTION ........................................................................................................................................... 15 ERBEN’S SCHEMA OF BIOGRAPHICAL RESEARCH ................................................................................................ 15 PREVALENCE OF DEMENTIA AND ISSUES OF IDENTIFICATION................................................................................. 16 CONCEPTUALISING DEMENTIA ....................................................................................................................... 18 IDEOLOGIES OF AGEING ................................................................................................................................ 22 SOCIAL POLICY CONTEXT .............................................................................................................................. 26 CONCEPTUALISING CARERS ........................................................................................................................... 29 CONTEXTUALISING THE EXPERIENCE OF BEING LESBIAN OR GAY............................................................................ 33 CARERS’ APPROACHES TO CARING .................................................................................................................. 41 CARERS’ BELIEF SYSTEMS .............................................................................................................................. 45 SUMMARY ................................................................................................................................................. 46 CHAPTER 3: METHODOLOGY AND METHODS ......................................................................... 49 INTRODUCTION ........................................................................................................................................... 49 RESEARCH APPROACH .................................................................................................................................. 49 RESEARCH DESIGN ....................................................................................................................................... 52 SELECTION OF RESEARCH PARTICIPANTS .......................................................................................................... 56 BIOGRAPHICAL RESEARCH METHOD ................................................................................................................ 57 INTERPRETATION OF THE CARERS’ STORIES ....................................................................................................... 60 RESEARCHER AS GUIDE ................................................................................................................................. 62 ETHICS AS A PROCESS ................................................................................................................................... 65 ETHICAL COST BENEFIT ANALYSIS OF THE RESEARCH .......................................................................................... 68 SELF-AUDIT OF RESEARCH PRACTICE ............................................................................................................... 74 BECOMING A REFLEXIVE RESEARCHER ............................................................................................................. 76 RESEARCH ANALYSIS ..................................................................................................................................... 77 CONTENT ANALYSIS ...................................................................................................................................... 78 ANALYSIS OF THE DATA ................................................................................................................................. 81 THEORISING THE CARERS’ STORIES .................................................................................................................. 82 THE SUPPORT THAT CARERS RECEIVE AS THEIR ROLE CHANGES............................................................................. 83 MANAGING TRANSITIONS .............................................................................................................................. 84 SUMMARY .................................................................................................................................................
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