Factors Associated With the Use of Digital Health and Well-Being Resources in Non–Memory-Led Dementias: Quantitative Survey Study
Background: Digital platforms disseminating health information and providing support for the experience of non-memory-led dementias (NMLDs) are invaluable. However, the factors influencing engagement with these resources in people affected by NMLDs are poorly understood. We conducted the world’s largest survey exploring the experience of digital access in NMLDs to learn directly from people with a diagnosis, their care partners, and NMLD health care professionals (HCPs). Objective: This study aimed to determine factors associated with digital health and well-being resource use in people with NMLD and their care partners and investigate differences in digital health and well-being resource use according to NMLD subtype. Methods: Individuals diagnosed with NMLD—for example, those with frontotemporal lobar degeneration, posterior cortical atrophy (PCA), and primary progressive aphasia (PPA)—their care partners, and NMLD HCPs (N=450) responded to the survey. A subset of care partners provided two responses (carer-related and proxy), generating 4 survey groups with responses (N=538). The survey included demographics and basic clinical information, the outcome measure of usage behavior, and factors including constructs from the Short Senior Technology Acceptance Model (Short STAM) and additional constructs informed by a combination of previous literature and consultation with NMLD experts-by-experience (anxiety and depression [Patient Health Questionnaire–4-item], instrumental activities of daily living, web-related privacy and security concerns, and digital health literacy). Separate multiple linear regressions were run for each survey group to elucidate which variables predicted higher use of digital health and well-being resources. The use of digital resources for health and well-being was also explored across 3 NMLD subtypes: frontotemporal dementia (FTD), PPA, and PCA. Results: Attitudinal belief was consistently the strongest predictor of digital health and well-being resource use in people with NMLD as well as caregivers and proxy respondents. Control belief was significantly associated with higher digital health and well-being resource use in the NMLD and proxy groups; a trend was observed in the carer group. The adjusted ² range (63.0%‐70.8%) denotes the variance in digital health and well-being resource use accounted for in the 3 models. Lower digital health and well-being resource use was associated with FTD diagnosis and caregiver groups relative to PPA and PCA. Conclusions: Collectively, these findings indicate several factors are critical to consider when designing digital health and well-being resources for people with NMLD and their caregivers, in particular targeting practical and emotional perceptions of digital resource use for health and well-being. This should be undertaken in combination with design considerations that address condition-specific cognitive profiles encountered by those living with NMLD diagnoses and those who care for them.
