Supporting Dementia Caregivers During Medicare Home Health: Developing the DECLARE Needs Assessment Intervention - PROJECT SUMMARY/ABSTRACT
Through Medicare-funded skilled home health care (HH), community-living older adults may receive skilled
nursing, therapy, and aide services in their home. HH is a crucial source of care for older adults with Alzheimer's
Disease and Related Dementias (ADRD); 31% of the 3.4 million Medicare beneficiaries who access HH each
year have ADRD. The majority (92%) of HH patients with ADRD require help from family and unpaid caregivers
to implement the HH plan of care. Yet, caregiver needs are not systematically assessed during HH and they
frequently face unmet training/support needs. Unmet caregiver needs contribute to increased costs, decreased
patient/family satisfaction, and higher patient risk for hospitalization and institutionalization during HH. The
proposed K01 will develop, refine, and pilot test an ADRD caregiver needs assessment intervention for HH:
DECLARE (Dementia Caregivers' Link to Assistance and Resources). DECLARE will harness a web-based
survey platform to elicit information from ADRD caregivers about their availability, capabilities, and needs at the
time of HH admission. This data will then populate in the HH patient record along with suggested next steps for
HH staff. Specific Aims include: (1) Develop an ADRD caregiver self-assessment intervention (DECLARE)
prototype; (2) Iteratively refine the intervention (DECLARE) in partnership with key stakeholders; (3) Implement
and pilot test DECLARE via an embedded Pragmatic Clinical Trial, evaluating for feasibility, acceptability, and
impact on HH care team/caregiver communication and support. Aims will be pursued in partnership with Visiting
Nurse Service of New Yok (VNSNY), the largest non-profit HH provider in the nation. Findings will support a
planned R01 to test DECLARE's impact on patient clinical outcomes and caregiver self-efficacy and burden.
Dr. Julia Burgdorf, PhD, is a Research Scientist at the Center for Home Care Policy & Research at VNSNY.
She is ideally positioned to lead the proposed research as an expert in family caregiver involvement in HH care
and an embedded researcher at VNSNY. Her career goal is to improve home- and community-based care for
older adults by developing pragmatic clinical interventions that facilitate provider-led engagement and support of
family caregivers, with a focus on caregivers for individuals with ADRD. To achieve this goal, Dr. Burgdorf will
pursue targeted mentorship and training in 5 key areas during the K01: (1) consumer-facing technologies for
clinical innovation in HH, (2) human-centered design, (3) intervention evaluation and embedded Pragmatic
Clinical Trials, (4) ADRD research, and (5) independent grant writing. She has assembled an interdisciplinary
mentoring and advisory team whose complementary research expertise and experience mentoring early career
investigators will provide invaluable support and guidance, while fostering her ongoing collaborations with
academic research settings and a major learning health system. This K01 would provide Dr. Burgdorf with the
necessary time and learning experiences to transition to an independent investigator equipped to lead impactful
interventional research improving provider/caregiver collaboration and care outcomes in the HH setting.
