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 selfreported 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.

Themes Related to Experienced Quality of Care in Nursing Homes From the Resident’s Perspective: A Systematic Literature Review and Thematic Synthesis

“…People with dementia or aphasia may be limited to verbally express themselves or find it challenging recalling on past experiences; however, future studies should adopt an inclusive design by using a tailored approach for this population by, for example, using supportive visuals or observations (Alzheimer's Disease International, 2015; Curyto et al, 2008;Gardner et al, 1976;Scheffelaar, Hendriks, et al, 2018;Stans et al, 2013;Whitlatch, 2001). A recent review explored self-reported needs and experiences of people with dementia in nursing homes (Shiells et al, 2019). This is complementary to our review as it included qualitative and quantitative studies and focused on experiences, quality of life, and well-being expressed by people with dementia.…”

Towards personalized dementia care through meaningful activities supported by technology: A multisite qualitative study with care professionals

“…Despite these calls to action, a recent scoping review of the needs and experiences of people living with dementia in nursing homes found that one of the most commonly occurring experiences of residents was boredom [13]. Furthermore, a recent study of people living with dementia in Norwegian care homes found that residents desired more opportunities for meaningful relations and activities [14].…”

Everyday wishes of older people living with dementia in care planning: a qualitative study

“…A variety of desired activities were identified in this study. One scoping review identified religious activities as one of the needs of PLwD [ 12 ]. However, in our study, religious activities were absent as daily life wishes.…”

“…The Alzheimer Europe promotes the engagement of PLwD in research that highlights the empowerment of PLwD in Patient and Public Involvement (PPI). Although researchers have emphasized the importance of including the direct voice of PLwD in the study, still very little is explored about the preferences of PLwD [ 12 ]. The limited literature in the area suggests that the perspectives of PLwD differ from those expressed by their caregivers/families and health professionals [ 13 – 15 ].…”