Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice

Abstract

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits: (1) improving the delivery of person-centred care, (2) hearing the voice of people with dementia, (3) residents spending time with researchers, (4) improving researcher understanding, and (5) having an evidence base from multiple sources. We also identified five main challenges: (1) effective communication, (2) fluctuating capacity, (3) causing distress to residents, (4) time pressures, and (5) staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection.

Interviewer effects in a survey examining pain intensity and pain interference in nursing home residents

“…Finally, higher response variability in internal interviewers may suggest that they deviate more often from the predefined standardised interview script [ 46 ]. This is plausible insofar as interviews represent a communication opportunity for older persons [ 9 ]. The risk of digressing into the usual everyday communication is higher in the case of familiar nurses.…”

Concordance of self- and informant-rated depressive symptoms in nursing home residents with Dementia: cross-sectional findings

“…Snow et al [ 73 ] found that an existing diagnosis of dementia per se does not lead to inaccurate self-reports of depression. Perfect et al [ 74 ] investiged challenges and benefts of using self-reports in research with PWD. They conclude that self-reports can and should be applied in studies with people in all stages of dementia.…”

Facilitators and Barriers to Research Participation in Care Homes: Thematic Analysis of Interviews with Researchers, Staff, Residents and Residents’ Families

“…Given the challenges care homes face, it is perhaps unsurprising that research levels are lower in care homes to other sectors; however, it is also recognised that people in care homes should have the opportunity to participate in research, with initiatives to create a network of 'research-ready care homes' (Goodman and Davies, 2012;Davies et al, 2014;National Institute for Health Research, 2021). Research has reported how research participation can improve wellbeing, through opportunities to socialise with researchers and peers (Perfect et al, 2021); as well as offering a therapeutic activity in being listened to in a meaningful way (Lakeman et al, 2012); access to information and resources, and pride in participation (Castillo et al, 2012). Shepherd et al (2015) discuss, regulatory changes are needed to allow for more inclusive research to be conducted in a timely manner.…”