Improving Primary Care Clinicians’ Advance Care Planning for Persons Living with Alzheimer’s Disease and Related Dementias

PROJECT SUMMARY/ABSTRACT
Advance care planning (ACP) is difficult for all older adults, but dementia makes ACP even more difficult.
Alzheimer's disease and Alzheimer's disease related neurodegenerative dementias (AD/ADRD) are incurable,
progressive and terminal diseases with unparalleled impact on the US healthcare system, patients and families.
Over 5 million Americans live with AD/ADRD, and people with AD/ADRD lose decision-making capacity years in
advance of critical and serious medical illness. Clinicians must discern when and how people with AD/ADRD can
express valid treatment preferences at all stages of AD/ADRD. Additionally, significant disparities exist for people
with AD/ADRD in minority communities. Most people with AD/ADRD are managed by their primary care clinics
whose primary care teams receive little education and training on dementia management, and no attention to
dementia-specific ACP communication needs. Primary care teams, including physicians, advance practice
providers, nurses and social workers, are well-positioned to empower people living with AD/ADRD (PLwD) and
their families in ACP, especially minority communities, yet lack critical dementia-specific communication skills.
Evidence-based ACP interventions for PLwD are rare, and no prior clinical trial addresses AD/ADRD ACP in
primary care with a focus on health disparities in Black PLwD. Our experienced investigative team has
demonstrated feasibility and preliminary efficacy of an AD ACP practice improvement toolkit (AD ACP toolkit) for
primary care teams. We will test whether our AD ACP toolkit will enable primary care teams to better conduct
GOC discussions more efficiently and thus increase the number of GOC discussions held as compared to
controls. We will deliver the AD ACP toolkit to 10 intervention primary care clinics and usual care to 10 control
clinics with large Black populations within a large integrated health care system. Our first aim is to conduct a trial
comparing the AD ACP Toolkit to usual care on goals of care discussions and other ACP measures (N=600).
We will conduct stratified analyses for Black PLwD. The second aim is to examine the 18-month healthcare
utilization outcomes for all PLwD served by intervention vs control clinics and conduct secondary analyses for
Black PLwD. Lastly, we will assess implementation via surveys in the intervention clinics (N=120) followed by
interviews (N=60) to understand any disparities in ACP for Black PLwD. This project addresses National Institute
on Aging's mission to improve care for older adults with AD/ADRD in primary care. This work will improve how
to incorporate ACP approaches for aging-related conditions by primary care teams and may be adaptable to
other outpatient specialties such as oncology or cardiology.