ABSTRACT
BACKGROUND: Analysis of video data was conducted of validated assessments with people with dementia as part of a feasibility control study comparing a lifelong learning service with other dementia services. OBJECTIVE: The aim was to provide a new perspective on what occurs during the assessment process when using validated measures in research and explore which strategies people with dementia use to manage their participation. DESIGN: Video recordings were made of pre- and postintervention assessments of people with dementia. An initial pilot analysis of 10 videos of the pre-assessments was conducted. SETTING: Lifelong learning services and other dementia services situated in six municipalities in Northern Denmark took part in this study, with 55 people with dementia participating. RESULTS: The themes identified were: 'State of mind' and 'Mental resources', showing how these aspects influenced the participants' reactions and the strategies they used. DISCUSSION: The results are discussed in relation to how individual personality traits influence the assessment process and the way a person with dementia will manage the situation. CONCLUSION: The assessment situation is complex and can be influenced by the strategies adopted by individuals with dementia as they try to manage the assessment process. PATIENT OR PUBLIC CONTRIBUTION: People with dementia supported the decision-making for the choice of validated measure used within this study.
Subject(s)
Dementia , Patient Education as Topic , Humans , Feasibility Studies , Qualitative Research , Validation Studies as Topic , Pilot Projects , Denmark , Reproducibility of ResultsABSTRACT
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.
