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

Abstract

Background: Developing evidence for the use of psychosocial interventions for people with dementia is a priority for research. This pilot study aimed to provide estimates of variability for a set of outcome measures considered for a larger controlled study of the effect of attending a lifelong learning intervention for people with dementia, compared to receiving treatment as usual. In the study it was also explored how datacollectors and researchers evaluated the use of the outcome measures in a sample of people with mild to moderate dementia. Methods: Initially, a participant consultation, with participants and their teachers at a dementia school, was carried out to identify important research outcomes which were Mini-Mental State Exam (MMSE), Quality of Life Alzheimer’s Disease (QoL-AD), General Self-Efficacy Scale (GSE), Rosenberg Self-esteem scale, Friendship Scale). The following study was divided into two steps. In step 1 participants included were people with dementia attending a dementia school (intervention group) or usual services (control group). The participants were tested at baseline and at 6-month follow-up. Data were collected between November 2018 and July 2019. In step 2 feasibility and acceptability issues in step 1 with the recruitment of participants, data collection process and outcome measures were evaluated and analysed qualitatively. Results: Fifty-five people with dementia were included in the analysis of follow-up. Step 1 provided estimates of changes from baseline to follow-up and ancillary standard deviations were provided for all outcome measures. Step 2 provided reflections about feasibility and acceptability of the intervention itself, the data collection, and the outcome measures. This including views on how people with dementia experience participating in the 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. It was demonstrated how people with dementia can participate in research which is meaningful to them. Trial registration: Registration with a database of clinical studies was according to national legislation, not required, as the study was evaluating existing activities and thus no clinical intervention.

Observations on strategies used by people with dementia to manage being assessed using validated measures: A pilot qualitative video analysis

“…Participants were assessed using five validated measures: Mini‐Mental State Examination (MMSE) 17 ; Quality of Life in Alzheimer's Disease Scale (QoL‐AD) 18,19 ; General Self‐Efficacy Scale 20 ; Rosenberg Self‐Esteem Scale 21 ; Hawthorn Friendship Scale 22 . A detailed method, background to the wider study and facilitator strategies are presented in Thoft et al 15 and Sørensen et al 23 This paper provides an overview of the methods in relation to the video analysis.…”