Reducing Depression in Family Caregivers of Persons Living with Lewy Body Dementia through Tailored Asynchronous Online Intervention

About This Grant

PROJECT SUMMARY Over 1.4 million individuals in the United States are diagnosed with Lewy Body Dementia (LBD), the second most common type of degenerative dementia after Alzheimer's disease (AD). LBD results in early impairments in cognitive abilities, along with bothersome neuropsychological and bodily symptoms such as visual hallucinations, parkinsonism, dysautonomia, and sleep disorders. Up to 80% of individuals with LBD receive care from family members, with nearly half of the caregivers' experiencing depression. Web-based and telehealth interventions for caregivers of individuals with dementia are promising solutions for reducing caregiver depression, paralleling the potential of traditional in-person approaches. Yet, most of the interventions generalize across all dementia forms without adaptations for LBD's distinct challenges. Accessibility of existing digital interventions is also limited by internet bandwidth and lower digital literacy in caregiving populations, perpetuating inequity and leaving them underserved. Our project aims to test the effectiveness of a fully asynchronous, low bandwidth, text-based psychoeducational online intervention tailored specifically for caregivers of individuals with LBD (VOCALE LBD). This intervention engages caregivers in moderated peer-to-peer discussions focused on LBD caregiving and problem-solving skills over an eight-week period. In a pilot study, the intervention showed promising results in reducing depressive symptoms among fifty-four LBD family caregivers age 68±10. Clinicians also uniformly agreed that the intervention is impactful, acceptable, and well-aligned with their strategic priorities, but they suggested strengthening its pragmatic potential by introducing practical measurements of the intervention's progress. We propose a two-arm randomized controlled trial (RCT) comparing VOCALE LBD to the standard of care (SOC) among 220 caregivers nationwide, recruited using Lewy Body Dementia Association (LBDA) outreach. The primary outcome will be depressive symptoms at eight weeks post-enrollment. Secondary outcomes will include sustained effects on depressive symptoms at six months, and exploratory outcomes will assess caregiving burden, stress, social support, and loneliness. Additionally, we will evaluate the mechanisms influencing the intervention's effects, focusing on caregiver empowerment and problem-solving, and explore pragmatic approaches for monitoring the intervention's effectiveness through user engagement and user-generated data. Our project is aligned with national priorities to effectively leverage digital and telehealth solutions for caregivers of people with Alzheimer's Disease and Related Dementias (ADRD). We aim to create an evidence- based, equitable, and accessible solution for LBD caregivers, ensuring practical application and intervention fidelity. If successful, this project will lay a foundation for the next stage effectiveness research in clinics and community organizations.