Focus Groups to Inform Further Development of a Digital Therapeutic Platform for Home Care Agencies in Dementia Care (Preprint)

BACKGROUND Persons living with dementia (PLWD) require increasing levels of care and the care model for PLWD has evolved. The Centers for Medicare & Medicaid Services is transitioning long-term care services from institutional care to home or community-based services, including reimbursement for non-clinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for PLWD. To live at home longer, PLWD require support from formal caregivers (i.e., paid professionals), who often lack knowledge of PLWDs’ personal histories and have high turnover, and/or informal caregivers (e.g., family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect (GC) platform was developed to support PLWD and their formal and informal caregivers. In preliminary studies, the GC platform improved moods for PLWD and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a National Institutes of Health Small Business Innovation Research (NIH SBIR) grant to improve clinical outcomes, reduce healthcare costs, and lower out-of-pocket costs for PLWD who receive care through home care agencies. OBJECTIVE To conduct stakeholder focus groups to develop a better understanding about existing processes, needs, barriers, and goals for the use of the GC platform by home care agencies and formal and informal caregivers. METHODS A series of focus groups were conducted with 1) home care agency corporate leadership, 2) home care agency franchise owners, 3) home care agency formal caregivers, and 4) informal caregivers of PLWD. The qualitative approach allowed for the unrestricted generation of ideas that would best inform the development of the GC platform developers to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve formal caregiver well-being, and extend PLWD ability to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was utilized to identify thematic categories from the transcripts. RESULTS A total of 39 participants participated across the six stakeholder focus groups. Five overarching themes were identified: (1) Technology-Related; (2) Care Services; (3) Data, Documentation, Outcomes; (4) Cost, Finance, Resources; and (5) Resources for Caregivers. Within each theme, the most frequent sub-themes were identified. Exemplar stakeholder group statements were compiled to provide support for each of the identified themes. CONCLUSIONS Focus group results will inform further development of the GC platform to reduce the burden of caregiving for PLWD, evaluate changes in cognition, preserve functional independence, and promote engagement between PLWD and caregivers. The next step is to evaluate the effectiveness of the GC platform in a NIH SBIR Phase 2 clinical trial to assess its efficacy of evidence-based interventions and market viability. CLINICALTRIAL This Phase 1 study did not meet the criteria for an Applicable Clinical Trial and therefore it was not registered on clinicaltrials.gov.