VOCALE LBD: Online Peer Support for Caregivers of People With Lewy Body Dementia

Over 1.4 million people in the U.S. are diagnosed with Lewy Body Dementia (LBD). Up to 80% receive care from family members, yet family caregivers of people with LBD experience depression at rates (40-50%) double those of Alzheimer's disease caregivers. LBD's distinct features - visual hallucinations, REM sleep behavior disorder, cognitive fluctuations, and Parkinsonian motor symptoms - create caregiving demands not addressed by existing dementia caregiver interventions. Current pharmacological treatments for LBD are largely experimental, leaving families to manage severe behavioral and motor symptoms without adequate support. INTERVENTION: VOCALE LBD (Virtual Online Communities for Aging Life Experiences - Lewy Body Dementia) is a fully asynchronous, text-based online group intervention delivered via the Discourse platform. The 8-week program includes icebreaker activities followed by LBD-specific weekly topics (self-care, sleep problems, hallucinations and delusions) and problem-solving training using the ADAPT method (Adopting a positive attitude, Defining the problem, brainstorming Alternatives, Predicting consequences, Trying the solution). Groups of 10-15 caregivers are moderated by a licensed nurse or social worker (RN/LCSW), who logs in daily and facilitates discussions. The platform requires no video conferencing and is accessible via any internet-connected device. Loaner devices and digital literacy training are provided for participants who need them. STUDY DESIGN: Two-arm, randomized controlled trial. Participants are randomized 1:1 to (a) VOCALE LBD or (b) Standard of Care (SOC: NIA psychoeducational materials, LBDA resource list, problem-solving handouts). Assessment time points: baseline, post-intervention (week 8), and 6-month follow-up. Exit interviews are conducted at the end of the intervention. AIMS: Aim 1 tests whether VOCALE LBD reduces depressive symptoms (CES-D) compared to SOC at week 8, with sustained effect at 6 months. Aim 2 examines mechanisms - whether self-efficacy and problem-solving mediate outcomes (2a quantitative mediation; 2b qualitative analysis). Aim 3 explores pragmatic monitoring using user engagement analytics, natural language processing, and LLM-assisted moderator support tools. RECRUITMENT: Nationwide recruitment through the Lewy Body Dementia Association (LBDA) via eblasts, social media, support groups, and print materials. Additional outreach via Alzheimer.gov and national LBD caregiver web resources.

• VOCALE LBD: Virtual Online Communities for Aging Life Experiences: Lewy Body Dementia (Behavioral), also known as VOCALE LBD, Virtual Online Community, Asynchronous Online Group Intervention: The 8-week VOCALE LBD intervention is delivered asynchronously via the Discourse online platform. The weekly curriculum includes: Pre-intervention (icebreakers, self-introductions); Week 1 (self-care); Week 2 (sleep problems); Week 3 (hallucinations and delusions); Week 4 (problem-solving inventory, SPSI-R); Week 5 (ADAPT - Positive Attitude); Week 6 (ADAPT - Define the Problem); Week 7 (ADAPT - Alternative Solutions); Week 8 (ADAPT - Plan and Try).
• Standard of Care Educational Materials (Other): NIA and LBDA psychoeducational materials on LBD and caregiving; LBDA resource list; problem-solving principles handout. Materials delivered via email or mail per participant preference.

Primary outcomes

• Depressive Symptoms, Center for Epidemiologic Studies Depression Scale (CES-D) [Baseline (pre-randomization), Post-Intervention (Week 8), 6-Month Follow-Up]: The CES-D measures the frequency of depressive symptoms in the past week, including negative mood, guilt and worthlessness, and physical symptoms associated with depression. 20-item scale; higher scores indicate greater depressive symptom burden. Validated for use in dementia caregiving populations

Secondary outcomes

• Perceived stress (PSS) [Baseline, Week 8, 6-month Follow-up]: 10-item scale measuring perceived stress in the past month. Higher scores = greater stress
• Social Support (MOS) [Baseline, Week 8, 6-month follow-up]: Medical Outcomes Study (MOS) Social Support Scale: measures emotional, tangible, affectionate, and positive social interaction. Higher scores = greater support.
• Caregiving Burden [Baseline, Week 8, 6 month follow-up]: Short Zarit Caregiver Burden Interview: 12-item measure of caregiver burden covering personal strain and role strain. Higher scores = greater burden.
• Loneliness [Baseline, Week 8, 6 month follow-up]: UCLA Loneliness Scale: measures subjective feelings of loneliness and social isolation. Higher scores = greater loneliness
• Platform Engagement [Post Intervention (week 8)]: Platform Engagement (UES) User Engagement Scale (UES): characterizes quality of users' interactions with the Discourse platform (focused attention, perceived usability, aesthetics, reward). Post-Intervention (Week 8)
• Problem Solving [Baseline, Week 4, Week 8, 6-month followup]: Social Problem Solving Inventory - Revised (SPSI-R): assesses problem-solving orientation and style. Used as mechanistic measure (Aim 2a).
• Health Self-Efficacy [Baseline, Week 4, Week 8, 6-month follow-up]: Health Self-Efficacy 5-item Health Self-Efficacy Measure: assesses confidence in managing health-related tasks. Used as mechanistic measure (Aim 2a).
• Sustained Effect on Depression (CES-D) [6-Month Follow-up]: CES-D at 6-month follow-up: tests sustained (durable) reduction in depressive symptoms beyond the active intervention period.

Sex: All, ages: 18 Years to any

Inclusion Criteria:

* Current family member or informal (unpaid) caregiver of a person with a confirmed diagnosis of Lewy Body Dementia (LBD) or LBD mixed pathology
* Experiences depressive symptoms as defined by a score of 5 or higher on the Patient Health Questionnaire-9 (PHQ-9)
* Able to read, write, and speak English
* Has access to a device (computer, tablet, or smartphone) that can connect to the internet and be used for videoconferencing or phone calls, OR is interested in using a loaner device

Exclusion Criteria:

* Active suicidal ideation as indicated by endorsement of PHQ-9 Item 9 (thoughts that you would be better off dead, or thoughts of hurting yourself)
* Paid or professional caregiver (must be unpaid family/informal caregiver)
* Unable to read, write, or speak English

NIH grants: R01MH139601