Drs. Jennifer Wolff and Sydney Dy, professors in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health, were recently awarded a $561,000 two-year grant from the National Institute on Aging (NIA). The study will refine and evaluate a multicomponent communication intervention designed to engage families and patients with Alzheimer’s Disease and Related Dementias (ADRD) in primary care throughout two large health systems.
ADRD are among the most profoundly disabling and costly of all health conditions and the fifth leading cause of death. Family caregivers are at the forefront of managing ADRD across the continuum of care but are not routinely included in discussions about prognosis and are often poorly prepared to engage in surrogate decision-making. Compared to older adults without ADRD, those with ADRD are less likely to formally designate a surrogate decision-maker and less likely to complete an advance directive, leaving them at heightened risk for unnecessary suffering and burdensome end-of-life care.
The study will evaluate a multicomponent communication intervention, referred to as SHARING CHOICES, to proactively engage family and support advance care planning in primary care. During the first two years of the study, Drs. Wolff and Dy will use a user-centered process to refine and test the protocol with stakeholders and patients and their families. Looking ahead, further research would test the effects of SHARING CHOICES on advance care planning outcomes among primary care patients with mild-severe ADRD and assess its implementation potential in a pragmatic cluster randomized trial at up to 100 diverse primary care clinics in two health systems.