A feasibility and pilot study of a “lifelong learning” intervention for people with dementia

BACKGROUND: Developing evidence for the use of psychosocial interventions for people with dementia is a research priority. This pilot study aimed to provide variability estimates for a set of outcome measures that would inform the development of a more extensive controlled study. The larger study will seek to explore the effect of attending a lifelong learning intervention for people with dementia compared to receiving treatment as usual. This pilot and feasibility stage also analysed how data collectors and researchers evaluated the use of the outcome measures in a sample of people with mild to moderate dementia. METHODS: Before initiating the pilot study, a participant consultation was conducted with people with dementia, who attend a lifelong learning service known as a dementia school, and their teachers. From this consultation, the research outcomes identified were the mini-mental state examination (MMSE), Quality-of-Life Alzheimer's Disease (QoL-AD), General Self-Efficacy Scale (GSE), Rosenberg self-esteem scale, and the Friendship scale. The following study was divided into two steps. In step 1, participants were people with dementia attending a dementia school (intervention group) or usual services (control group). The participants were tested at baseline and at a 6-month follow-up. Data were collected between November 2018 and July 2019. In step 2, feasibility and acceptability issues with the recruitment of participants, data collection process, and outcome measures, identified in step 1, were evaluated through a data collector focus group. RESULTS: Fifty-five people with dementia were included in the analysis. Step 1 provided estimates of changes from baseline to follow-up, and ancillary standard deviations were supplied for all outcome measures. Step 2 provided reflections on the feasibility and acceptability of the intervention, data collection, and outcome measures. This included views on how people with dementia experience participating in a test situation. CONCLUSIONS: This study provided estimates of change and variability in the outcome measures. Additionally, issues regarding data collection were identified and should be addressed in future studies. The project demonstrated how to support people with dementia to participate in research that is meaningful to them. TRIAL REGISTRATION: According to national legislation, registration with a database of clinical studies was optional, as the study evaluated existing activities rather than a clinical intervention.