A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias

Abstract

Objectives: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Design: Pre–post interventional mixed methods study. Setting: Online videoconference group program for carers across the UK held in 2021. Participants: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. Intervention: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. Measurements: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Results: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. Conclusion: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

Optimising Online Peer Support for People with Young Onset Dementia

“…In this way, the person with dementia can find out if the group is something for them, and the facilitator can find out about any support the person with YOD may need. This was also found in an online group intervention for carers of people with a rare form of dementia [35]. Furthermore, the facilitator should ensure everyone has a chance to speak, and that it is a safe and confidential space.…”