7. Project Summary/Abstract
Providing care for persons with Alzheimer’s disease and related dementias (ADRD) comes with significant
physical and psychosocial costs, necessitating interventions to support caregivers’ health and quality of life
(QoL). Yet, effective intervention requires a nuanced understanding of the factors that impact the burden
along the care trajectory. Crucially underexplored in its contribution to caregiver burden is dysphagia
(swallowing impairment), which occurs in up to 93% of persons with ADRD. While our previous work has
demonstrated that dysphagia is an independent predictor of emotional and physical burden across
caregivers of heterogenous populations of older adults, there is currently no standard of care for
incorporating dysphagia education and support, including content and timing, into ADRD-related
interventions. With the goal of integrating proactive dysphagia-related caregiver burden reduction into
standard clinical practices, this proposed Phase 0 research study will address the critical when (timing) and
what (targets) needed for intervention design. Specifically, the objectives of this study are to (a) quantify
dysphagia’s contribution to burden among family caregivers of persons with ADRD across the disease
trajectory (early-, mid-, and late-stage disease), and (b) characterize the moderating effects of caregiver
knowledge, preparedness, competence, and perceived support on dysphagia-related caregiver burden and
care recipient QoL across the dysphagia trajectory (no dysphagia, dysphagia with minimal to no dietary
modifications, and dysphagia with dietary modifications). Using data obtained via self-report and surveys,
moderated multiple regression models will test the relationship between functional measures of dysphagia
status and caregiver burden as well as the role of caregivers’ dysphagia-related knowledge and perceived
preparedness, competence, and social support in moderating the relationship between dysphagia severity
and dysphagia-related burden and QoL. Successful completion of this work will identify additional modifiable
contributors to ADRD-related caregiver burden and potential mechanisms of action. The results will directly
inform the development of a new, evidence-based intervention for reducing aspects of caregiver burden
related to dysphagia management in ADRD and thus offer a unique opportunity to intervene with families
earlier and proactively, ameliorating, and potentially even preventing, the development of these aspects of
burden over time. Ultimately, reducing the burden associated with dysphagia, a highly prevalent
consequence of ADRD, offers a novel and underexplored strategy to promote health and QoL among the
caregivers of and persons with ADRD.
