The First-Hand Needs of Informal Caregivers of People Living with Dementia, in Residential Care Settings: A Scoping Review

Background
Dementia is a terminal condition often requiring palliative care delivered in residential care settings. While informal caregivers are pivotal in care-based decision-making, they have higher rates of physical and mental illness than informal caregivers of people with other terminal conditions. Identifying the needs of informal caregivers of people living with dementia (PLwD) is essential to mitigate these risks and develop effective support systems.

Objective
Our objective was to understand the first-hand experiences and needs of informal caregivers of PLwD receiving palliative and end-of-life care in residential care settings.

Method
Following the JBI methodology for scoping reviews, electronic databases (APA PsychNet, the Cochrane Database of Systematic Reviews, PubMed and Web of Science) were searched in August 2023, October 2024, and March 2026, with no publication date limitations. Thematic synthesis was conducted on the findings of eligible peer-reviewed and grey literature, written in English and reported in accordance with the PRISMA-ScR checklist.

Results
Fifty articles were included. There were three overarching themes: “knowledge and understanding of dementia”, “engagement in care-based decisions” and “coping mechanisms and support for own wellbeing”. Subthemes presented an interplay between these, demonstrating the importance of understanding dementia, the significance of such knowledge for informal caregivers to maintain their own wellbeing, subsequently influencing their engagement in care-based decision-making.

Conclusion
Care settings must work towards compassionate and timely support for informal caregivers, including a stable point of contact throughout admission and should use lay language. Particularly, care settings should consider documenting informal caregivers’ experiences and prior conversations with care-staff to reduce distress, burden and sense of obligation and responsibility during a crisis or incident. Future studies should take a longitudinal approach to understand the evolving role of informal caregivers, with particular attention to cultural and ethnic needs.