“Like taking part in Star Wars”: A thematic analysis of acceptability and experiences of older adults participating in remote longitudinal sleep and dementia research
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Background
Sleep disturbance is a common symptom of and potential risk factor for neurodegeneration. Remote sleep and cognitive assessments offer promise for monitoring symptoms and treatment response from patients’ homes, but the acceptability of remote sleep and circadian technology in older adults with and without cognitive impairment is not known.
Objective
This qualitative study was designed to explore and describe the barriers, facilitators, and user experience of older adults with mild cognitive impairment and dementia and cognitively unimpaired older adults who participated in a longitudinal sleep and memory study designed around remote monitoring technologies.
Methods
Patients with mild cognitive impairment or dementia due to probable Alzheimer’s disease or Lewy body disease and age-matched controls participated in a longitudinal remote study involving multimodal assessments of sleep and cognition including actigraphy, wireless electroencephalography, a smartphone app, web-based cognitive tasks, and serial saliva samples. Participants were asked for feedback via questionnaires during the study and invited to complete end-of-study interviews about their experiences. Questions were informed and thematic analysis was guided by the Capability, Opportunity, Motivation – Behaviour model of behaviour change and the extended Unified Theory of Acceptance and Use of Technology and focused on perceived barriers and facilitators.
Results
The study identified six key themes. The first theme, ‘motivations to participate’, highlighted how participants felt the research could be helpful to themselves and others. The second theme, ‘navigating the user experience of devices’, identified comfort, security, privacy, ease of use, and reliability as fundamental in determining acceptability. ‘Adjusting over time to study participation’, the third theme, covered changing perceptions with increased exposure and familiarity, and the importance of convenience, flexibility, and developing a routine. The fourth theme explored ‘social support as a facilitator and barrier to research participation’, looking at the influence of both the research team and relatives supporting at home. A fifth theme of ‘adherence, accuracy, and getting it right’ was also identified, as participants were motivated to provide good quality data for the study. Finally, we identified a sixth theme surrounding participants’ ‘reflections, realities, and uncertainties around sleep’, which focused on sleep hygiene and common sleeping problems in older adults, such as snoring and nocturnal awakenings.
Conclusions
Older adults with and without cognitive impairment were motivated to engage in longitudinal remote sleep research, follow remote research protocols, and produce good quality data. Acceptability was related to burden and convenience, usability, and emotional responses to study tasks. When study tasks are repeated over time, care should be taken to introduce variety where possible to avoid fatigue and frustration. Study partners offer essential support for some participants, but requiring a study partner may also be an unnecessary barrier to research participation for others. 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.
