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

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, semi-structured interviews were conducted between March and October 2017. Eight adult females in the UK 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: (1) Impact on identity: impact of the participants’ experience on their sense of identity; (2) Continuity and change: relationship re-definition and duality of roles; (3) Stepping up to the challenge: adjustment to and coping with competing demands and ethical dilemmas; and (4) Finding help: “It’s 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’.