Supporting and sustaining care at home: Experiences of adult daughters who support a parent with dementia to remain in their own home.

Gillian Smith,Karen Rodham

doi:10.1111/hsc.13373

Abstract

Supporting a parent with dementia living in their own home is a challenging care issue which has potential for negative physical, emotional and psychosocial impacts. This research explores the experiences of adult daughters who sustain this arrangement as well as managing the competing demands of their lives. Using a qualitative approach, semistructured interviews were conducted between March and October 2017. Eight adult females in the United Kingdom who were supporting a parent with dementia to remain living in their home were interviewed. Photo-elicitation was used as an aid to data collection and complemented the use of Thematic Analysis (TA) to analyse verbatim transcripts. Four themes were identified: (a) Impact on identity: impact of the participants' experience on their sense of identity; (b) Continuity and change: relationship redefinition and duality of roles; (c) Stepping up to the challenge: adjustment to and coping with competing demands and ethical dilemmas; and (d) Finding help: 'It is just a minefield': experiences of help-seeking and service provision. This study highlights the experiences and challenges for adult daughters who support a parent with dementia. Ethical dilemmas regarding autonomy and safeguarding concerns figure large along with the competing demands of multiple roles. Service providers should aim to be more proactive in offering timely practical and psychosocial support and guidance to avoid compassion fatigue and acknowledge the valuable unpaid service provided by these 'women in the middle'.

Highlights

Worldwide evidence suggests that most people with dementia live in the community, and their primary support is from their families; the dependency on informal community care is increasing (Eccleston et al, 2019)
This study explored the experiences of adult daughters who were providing informal care for a parent with dementia
Photographs of phones and washing machines symbolised the strain of their caregiving role as they tried to manage constant phone calls and additional domestic chores

Summary

Introduction

Worldwide evidence suggests that most people with dementia live in the community, and their primary support is from their families; the dependency on informal community care is increasing (Eccleston et al, 2019). About 10% of the British population is known to be informal caregivers (White, 2013). We recognise that there are multiple views and debates concerning the term ‘informal carer’; in line with Totsika et al, (2017), we view informal carers as people who provide unpaid care to relatives, friends or Health Soc Care Community. . | wileyonlinelibrary.com/journal/hsc 1 |2 SMITH and RODHAM. TA B L E 1 Participant characteristics. Pseudonym Age Parent pseudonym Age Parent status Support status. 36 Dorothy 59 Peggy 63 Joan 55 Miles 56 Jenny 47 Nell Misty Jess 50 Lil 53 Milly We recognise that there are multiple views and debates concerning the term ‘informal carer’; in line with Totsika et al, (2017), we view informal carers as people who provide unpaid care to relatives, friends or Health Soc Care Community. 2021;00:1–10.

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