Scoping review of methods for engaging long-term care residents living with dementia in research and guideline development.

OBJECTIVES: To describe: (1) methods used to engage long-term care (LTC) residents living with dementia in research and guideline development; (2) the outcomes of engagement; and (3) barriers and facilitators to engagement. DESIGN: Scoping review. SEARCH STRATEGY: We conducted searches in Academic Search Premier (EBSCO), APA PsychInfo (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science and the Cochrane database, and a structured grey literature search in July 2021 and updated in March 2023. We included studies that described or evaluated resident engagement, defined as including residents living with dementia in the process of developing healthcare guidelines or research which could include collaborators or partners in planning, execution or dissemination of the guideline or research. Title, abstracts and full-texts were screened for eligibility by two team members using a pilot-tested process. Data were extracted from included studies independently and in duplicate by two team members using a pre-tested data extraction form. Results were narratively synthesised according to the research question they addressed. RESULTS: We identified three studies for inclusion. Residents were engaged at the beginning of the research projects through interviews, focus groups, and consultations. None of the included articles described the outcomes of engagement. Barriers to engagement were predominantly at the resident level, including impaired verbal communication limiting resident's abilities to participate in discussions, while increased time to support engagement was reported as a barrier at the resident and research team levels. CONCLUSIONS: We found a small body of literature describing the engagement of LTC residents in health research and guideline development. Future work should explore alternative methods to engage LTC residents living with dementia, including art-based methods, and the effect of including resident engagement. Guideline developers and researchers should ensure adequate time and human resources are allocated to support engagement.

Effectiveness of physical rehabilitation in improving physical functioning and quality of life for long-term-care residents with dementia: a systematic review protocol.

OBJECTIVE: The objective of this review is to evaluate the effectiveness of physical rehabilitation versus non-rehabilitation control in improving physical functioning and quality of life in long-term care residents with dementia. INTRODUCTION: Many long-term-care residents live with dementia and have impaired physical function and poor quality of life. Physical rehabilitation can improve physical function and quality of life for people living with dementia, yet many long-term-care residents with dementia do not receive this intervention, and health care providers are unsure of which rehabilitation interventions are effective. Studies synthesizing effective rehabilitation programs are needed to guide practice in the long-term-care sector where many residents live with dementia. Previous studies have focused broadly on long-term care, specific professions, interventions or outcomes, or people with dementia in the community. Our review will focus on long-term-care residents living with dementia and a broader definition of physical rehabilitation. INCLUSION CRITERIA: This review will include studies that evaluate physical rehabilitation in comparison with non-rehabilitation controls among long-term-care residents with any severity of dementia. We will include studies that measure the effect on performance-based physical functioning and self- or proxy-reported quality of life. METHODS: Searches will be conducted in APA PsycINFO (EBSCO), CINAHL (EBSCO), MEDLINE (Ovid), Embase, Scopus, and the Cochrane CENTRAL database with no date or language limitations. Two independent reviewers will conduct a critical appraisal of eligible studies, assess methodological quality, and extract the data. Where possible, studies will be pooled in a statistical meta-analysis. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42022308444.

Protocol for a scoping review on the methods for engaging long-term care residents with dementia in research and guideline development.

INTRODUCTION: Patient engagement is important when developing health guidelines to ensure high-quality and patient-centred recommendations. However, patient engagement in research and guideline development remains suboptimal, particularly for vulnerable populations, including residents with dementia living in long-term care (LTC) who are often not included in research and guideline development because of perceived and actual challenges with their health, memory, concentration and communication. Optimal strategies and methods for engaging LTC residents with dementia in research and guideline development remain unknown. METHODS AND ANALYSIS: We will conduct a scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension to answer the research questions: (1) What methods have been used to engage LTC residents with dementia in research and guideline development? (2) What are the outcomes of resident engagement? (3) What are the barriers and facilitators to resident engagement? Systematic searches for peer-reviewed articles will be conducted in: Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science, and Cochrane Database and in grey literature. Two team members will screen articles and extract data. Results will be presented according to the research question they address. We will engage stakeholders including residents, family members, healthcare providers and representatives from relevant organisations throughout the study. ETHICS AND DISSEMINATION: The scoping review will synthesise what is known about resident engagement in research and guideline development. It may identify gaps in the literature about the optimal methods to engage residents in performing research and developing guidelines and reveal opportunities for new methods. The results will be helpful for researchers and policy-makers seeking to develop guidelines and researchers engaging in topics that reflect the priorities and experiences of people with dementia. Results of the scoping review will be disseminated via publication in a peer-reviewed journal and conference presentations, and a one-page lay summary will be shared with our engaged stakeholders.

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program.

BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

The feasibility of performing resistance exercise with acutely ill hospitalized older adults.

BACKGROUND: For older adults, hospitalization frequently results in deterioration of mobility and function. Nevertheless, there are little data about how older adults exercise in the hospital and definitive studies are not yet available to determine what type of physical activity will prevent hospital related decline. Strengthening exercise may prevent deconditioning and Pilates exercise, which focuses on proper body mechanics and posture, may promote safety. METHODS: A hospital-based resistance exercise program, which incorporates principles of resistance training and Pilates exercise, was developed and administered to intervention subjects to determine whether acutely-ill older patients can perform resistance exercise while in the hospital. Exercises were designed to be reproducible and easily performed in bed. The primary outcome measures were adherence and participation. RESULTS: Thirty-nine ill patients, recently admitted to an acute care hospital, who were over age 70 [mean age of 82.0 (SD= 7.3)] and ambulatory prior to admission, were randomized to the resistance exercise group (19) or passive range of motion (ROM) group (20). For the resistance exercise group, participation was 71% (p = 0.004) and adherence was 63% (p = 0.020). Participation and adherence for ROM exercises was 96% and 95%, respectively. CONCLUSION: Using a standardized and simple exercise regimen, selected, ill, older adults in the hospital are able to comply with resistance exercise. Further studies are needed to determine if resistance exercise can prevent or treat hospital-related deterioration in mobility and function.