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 (ICGs) are pivotal in care-based decision-making, they have higher rates of physical and mental illness than ICGs of people with other terminal conditions. Identifying the needs of ICGs 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 ICGs 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 September 2024, 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

Forty-six 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”. Sub-themes presented an interplay between these, demonstrating the importance of understanding dementia, the significance of such knowledge for ICGs 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 ICGs, including a stable point of contact throughout admission and should use lay language. Future studies should take a longitudinal approach to understand the evolving role of ICGs, with particular attention to cultural and ethnic needs.

What is already known on this topic

• Alongside care-staff, informal caregivers play a critical role in care-based decision-making and support for people living with dementia (PLwD), but they face significant health and wellbeing challenges, with limited research on effective mechanisms to involve and support them in their role.

What this study adds

• Our study highlights the interconnected challenges faced by informal caregivers of PLwD in understanding dementia, maintaining their own wellbeing, and engaging in care-based decisions for PLwD.

How this study might affect research, practice, or policy

• The findings identify a need for proactive, compassionate support for informal caregivers of PLwD through navigable resources, education surrounding dementia terminology using lay-language, and consistent communication with care-staff to build trust and stability for informal caregivers.

• Our scoping review highlights the need for longitudinal research on evolving informal caregiving roles and calls for further research to explore and address the diverse needs of underserved communities, to inform culturally competent policies and practices.