Family members’ experiences of caring for a person with dementia at end-of-life

Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.