“Like Taking Part in Star Wars”: Qualitative Study Using Thematic Analysis to Explore the Acceptability and Experiences of Older Adults Participating in Remote Longitudinal Sleep and Dementia Research

Abstract Background Sleep disturbance is a common symptom of and potential risk factor for neurodegeneration and dementia. Remote monitoring technologies and increasing digital literacy offer promise for monitoring symptoms and treatment responses via sleep and cognitive assessments from patients’ homes. However, the acceptability of remote sleep and circadian research in older adults with and without cognitive impairment is not known. Objective This study aimed to explore and describe the barriers, facilitators, and user experience of older adults participating in longitudinal sleep and dementia research using remote monitoring technologies. Methods Older adults with mild cognitive impairment (MCI) or dementia due to probable Alzheimer disease or Lewy body disease and age-matched controls participated in an 8-week remote study involving multimodal assessments of sleep and cognition, including actigraphy, wireless electroencephalography, web-based cognitive tasks, and serial saliva samples. Participants were asked for feedback via questionnaires during the study at 2 time points and purposively invited to complete end-of-study interviews about their experiences. The Capability, Opportunity, Motivation–Behavior model of behavior change, and the extended Unified Theory of Acceptance and Use of Technology, were used to guide questionnaire and interview topic guide development. Inductive reflexive thematic analysis was undertaken, with components from the models used as sensitizing concepts. Results A total of 14 participants (9 with MCI or dementia, 5 controls) completed end-of-study interviews, and 28 participants (9 with MCI or dementia, 19 controls) completed questionnaires. Six key themes were identified: (1) “Perceived value as motivation,” (2) “Trust and simplicity as cornerstones in user experience,” (3) “Adjusting to study participation over time,” (4) “Adherence, accuracy, and getting it right,” (5) “Social support as a facilitator and a barrier,” and (6) “Reflections, realities, and uncertainties around sleep.” Conclusions Older adults with and without cognitive impairment were motivated to engage in longitudinal remote sleep research and provide good quality data. Acceptability was related to burden, usability, and reliability of devices, having sufficient support, and ability to build study tasks into a routine. In repeated cognitive tasks, varying task content and difficulty, and allowing flexibility in timing may avoid fatigue and frustration. Future studies should aim to identify effective strategies for recruiting diverse populations, particularly those with limited technology experience or from underserved communities, to ensure equitable participation and representation in research. Providing education on the importance of sleep for brain health and technology use may be beneficial.