Reducing Burden in Care Partners of Community-Dwelling Persons with Dementia and Oropharyngeal Dysphagia

We propose an NIH Stage I (R61) study to adapt, refine, and pilot test a Web-based Care Partner Tool for Feeding in Dysphagia (WeCareToFeedDysphagia), followed by an NIH Stage IV (R33) full-scale, 24-month, randomized controlled trial (RCT), to determine the efficacy of WeCareToFeedDysphagia for reducing burden in care partners of community-dwelling persons with Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD), diagnosed with oropharyngeal dysphagia (OD) during hospitalization. OD, a devastating syndrome that affects nearly 90% of hospitalized patients with AD/ADRD, is a significant predictor of care- partner burden, which, in turn, leads to poor care-partner and patient outcomes (e.g., quality of life, QoL). Our preliminary data indicate that, upon hospital discharge, care partners of patients with AD/ADRD face dramatic and persistent unmet OD-related caregiving needs: A. knowledge deficits; B. unrealistic management expectations; C. patient QoL considerations; D. inability to cope with patient’s frustration/refusal to eat dysphagia diets; and E. lack of competencies/skills. The overall goal of this proposal is to reduce burden in care partners of community-dwelling persons with AD/ADRD and OD using a single-component, easily administered, intervention that addresses unmet OD-related caregiving needs. Guided by a self-regulation theoretical framework, WeCareToFeedDysphagia will use written and video content, care-partner testimonials, frequently asked questions, and resource links, to: A. provide accurate information (e.g., dysphagia diets); B. set realistic expectations; C. identify/support feeding goals (QoL considerations); D. acknowledge/support care-partner feelings; and E. provide competencies/skills for OD management. The R61 phase will adapt, refine, and pilot test WeCareToFeedDysphagia to reduce care-partner burden by: adapting our existing web- based tool by incorporating stakeholder input (Aim 1), resulting in WeCareToFeedDysphagia; refining the tool through usability/acceptability testing (Aim 2); and conducting a pilot RCT (N=60) to determine the preliminary efficacy of WeCareToFeedDysphagia to reduce care-partner burden, as well as the feasibility of a subsequent full-scale RCT (Aim 3). We will assess care partner reported outcomes using technology (e.g., smartphones): 3-month post-hospital care-partner burden (primary outcome) and QoL (secondary outcome). The go/no-go criteria for the full-scale RCT is defined as: feasibility as ≥50% consented, ≤20% attrition at 3 months, and ≥80% tool engagement; and preliminary efficacy as effect size of ≥0.3 for reducing care-partner burden. The R33 phase will determine the efficacy of WeCareToFeedDysphagia to reduce care-partner burden by: conducting a 24-month, full-scale RCT (N=406) at 11 diverse Northwell Health hospitals (Aim 4) and conducting moderator and mediator analyses to examine the impact on intervention efficacy (Aim 5). The proposal directly responds to NIA’s strategic direction to develop effective interventions to reduce the burden of age-related diseases and improve QoL for persons with AD/ADRD and their care partners.