Assessing people with dementia participating in cognitive stimulation activities—A qualitative pilot video analysis exploring the importance of facilitating the participation

Abstract

Background This pilot video analysis was part of a feasibility control study, which aimed to gain information about the size and variability of the changes in outcome measures to plan a substantive effect study. It compared a cognitive stimulation programme named Lifelong Learning with other existing dementia services. Objective The pilot video analysis explored how facilitation is performed, when assessing people with dementia with standardized measures, to ensure their participation in research. Design A test battery of five measures (Mini‐Mental State Examination (MMSE), Quality of Life in Alzheimer's Disease Scale (QoL‐AD), General Self‐Efficacy Scale, Rosenberg Self‐Esteem Scale and Hawthorn Friendship Scale) was used. Each assessment was video‐recorded. The findings from a microanalysis of 10 videos are presented in this article. Setting The study involved 55 active participants with mild‐to‐moderate dementia in six municipalities in Northern Denmark. Results The identified themes related to supportive facilitation: Positive facilitator strategies; Creating a safe and comfortable environment; and to dilemmas in facilitation: Balancing multiple dilemmas and Balancing the MMSE test. Discussion Results are discussed in relation to using standardized measures. Conclusion The quality of facilitation when using standardized measures is of great importance as it may influence the participant, the assessment and the answers given. The facilitation role needs to be thoroughly planned and executed with ethical consideration to improve the participation of vulnerable groups in research and ensure a person‐centred approach. Patient or public contribution The identified measures were chosen based upon previous qualitative results and user‐involvement workshops with people with dementia.

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.…”

“…The authors provide insights into this little‐researched area, and ways to support the person with dementia, researchers and clinicians undertaking assessments. This is the second paper to present findings from this research, with the first available through Thoft et al 15 The first article highlighted the strategies of the researcher in undertaking assessments using validated measures. The aim of this paper is to provide a new perspective on the assessment process used in research and explore how people with dementia react and identify strategies they use when being assessed with validated measures.…”

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

“…for people with dementia [13]. This poses an interesting challenge as the MMSE is one of the most widely used cognitive assessment in dementia research [45].…”

“…The choices by the researchers also involved using tests not speci cally validated for people with dementia although had been used with people in later life, e.g., the GSE scale, Rosenberg's self-esteem scale, and the Friendship scale. While some challenges were experienced with the phrasing of reverse questions [13], there is precedent set by other studies for using tests not validated for use with people with dementia, as exempli ed in a multicentre randomised controlled trial which used the GSE scale as a secondary measure for evaluating a cognitive rehabilitation programme for people with early-stage dementia [44], and a study of the relationship between self-e cacy and depression with people with dementia [45], [46].…”

“…Since conducting this research, new measures are emerging that address some of these areas, for example, the Engagement and Independence in Dementia Questionnaire [47], and the Positive Psychology Outcome Measure [48] -these offer ways to explore hope, resilience, and social engagement, and are validated for use with people with dementia. The offer of a wider range of validated tests is encouraging, although, many remain as English versions, and so challenges exist in identifying measures that have been translated and validated for use in other countries and across cultures [13].…”