JMIR Publications

ABSTRACT

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 non-memory-led dementias to learn directly from people with NMLD, their care partners and NMLD healthcare professionals (HCPs).

Objective:

To: a). Determine factors associated with web-based health and wellbeing resource use in people with NMLD and their care partners, and b). Investigate differences in web-based health and wellbeing resource use according to NMLD subtype.

Methods:

450 individuals [individuals diagnosed with NMLD, e.g., frontotemporal lobar degeneration, posterior cortical atrophy (PCA), and primary progressive aphasia (PPA), their care partners, and NMLD healthcare professionals] responded to the survey. A subset of care partners provided two responses (carer-related and proxy), generating four survey groups with N(responses)=538. The survey included demographics and basic clinical information, the outcome measure of technology use (Venkatesh, 2012), and factors including: constructs from the Senior Technology Acceptance Model (Chen & Lou, 2020), depression (PHQ-4), web-related privacy/security concerns (Hong & Thong, 2013), and digital health literacy (Nelson, 2022). Separate multiple linear regressions were run for each survey group to elucidate which variables predicted higher use of web-based health and resources. The use of web-based resources for health and wellbeing was also explored across three non-memory-led dementia subtypes: FTD, PPA, and PCA.

Results:

Attitudinal belief was consistently the strongest predictor of health and wellbeing web-based resource use in NMLD populations. Control belief was significantly associated with higher web-based health and wellbeing resource use in the NMLD and proxy group; a trend was observed in the carer group. 62.8-70% of the variance in web-based health and wellbeing resource use was accounted for in the three models. Lower digital health and wellbeing 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 offers for people with NMLD and their caregivers, in particular targeting practical and emotional perceptions of web-based resource use for health and wellbeing. This should be undertaken in combination with design considerations which address condition-specific cognitive profiles encountered by those living with the diagnosis, and those who care for them.