The experience of family carers for people with moderate to advanced dementia within a domestic home setting: a systematically constructed narrative synthesis

Background Caring for someone with moderate to advanced dementia within a domestic home setting can be burdensome and time-consuming. To ensure the effectiveness of care planning and delivery, especially towards the end of life, understanding the nature and impact of such caregiving on the family carer is important. Synthesising existing research will allow greater insight into this experience. Review question ‘How do family carers describe their experience of providing home-based care for people with moderate to advanced dementia?’ Design A narrative synthesis of qualitative research exploring the experiences of people with moderate to advanced dementia and their family carers was conducted. Databases (MEDLINE, CINAHL, EMBASE, PsychINFO, Web of Science and Academic Search Complete) were searched from 1984 to 2020. Similarities and differences between papers were grouped using textual narrative synthesis. Findings This paper reports findings from a PhD thesis (James, 2021). Included papers (n=17) incorporated those focused on caring for people with advanced dementia (n=8), and those with moderate dementia (n=9). Family carers reported an experience of loss, burden, and grief. Experiences of internal conflict also led to psychological distress. These experiences had a negative impact on the general health of the family carer. Improvement in the family carer’s inter-relationships and the feeling of being useful or having a sense of meaning were reported as positive aspects of caregiving. Conclusion A complete description of family carers’ experiences may be inadequate in conveying an acknowledgement of dementia as an illness within the domestic home. Their justifications and determinants for balancing family carers’ challenges and distress to morals also remain unclear. Further research is required to ascertain how family carers may proportionally balance their personified loss with their personified value earlier in the disease trajectory.