Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review

Abstract

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes.

Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences.

Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care.

Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia.

Keywords:

• Dementia
• experiences
• long-term care
• nursing home
• subjective needs

Acknowledgements

With thanks to Katrien Alewaters, librarian at the Vrije Universiteit Brussel, and the End-of-Life Care Research Group, also at the Vrije Universiteit Brussel, for their input in designing the search string.

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

The research presented in this paper was carried out as part of the Marie Curie Initial Training Network (ITN) action, H2020-MSCA-ITN-2015, under grant agreement number 676265. L.P. is a Postdoctoral Fellow of the Research Foundation-Flanders.