Improving Advance Care Planning for People with Alzheimer's Disease and Related Dementias

This study is testing a new approach called the Dementia Advance Care Planning (AD ACP) Toolkit. This toolkit helps primary care teams (doctors, nurses, social workers) have important conversations about your goals for care with people living with Alzheimer's disease or related dementias. We want to see if using this toolkit leads to more and better discussions about your care wishes compared to the usual care you would receive. The study will look at how often these discussions happen and their quality over 18 months. We're also checking if preferred surrogates (people who can make decisions for you) are identified, if your ability to make decisions is assessed, and if portable advance care planning orders are completed. This study is for people aged 18 to 99 years old.

Study design
This is an interventional study, meaning it tests a specific approach. It aims to enroll 120 participants and compares the AD ACP Toolkit to usual care.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The primary outcome, Goals of Care Discussions, will be measured at 18 months.

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NCT06565169

Improving PCP Advance Care Planning for People With ADRD

Recruiting
NAAges 18–99InterventionalSupportive care
University of Pittsburgh
~120 participants
Updated 2026-04-14 on ClinicalTrials.gov
What's tested:Primary Care Team Advance Care Planning With People with Alzheimer's Disease or a Related Dementia TrainingCare as Usual

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Goals of Care Discussions
Measured over 18 months
Alzheimer Disease
Dementia
Alzheimer's Disease (Incl Subtypes)
Aging
1 sites across 1 states
North Carolina1
  • Christine E. Kistler, MD, MASc · PRINCIPAL_INVESTIGATOR · University of Pittsburgh, Department of Medicine, Division of Geriatric Medicine
  • Laura C. Hanson, MD, MPH · PRINCIPAL_INVESTIGATOR · University of North Carolina, Chapel Hill

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Eligibility criteria

Inclusion

Must be an MD/APP, employed at a primary care clinic within UNC HEALTH clinics with ≥60 PLwD encounters per year, who sees older adult patients, along with their associated nurses and social workers.
Eligibility for training with AD ACP Toolkit will include the above and the provision of care at an intervention clinic.
For Aim 3, only the trained intervention site primary care team members will be eligible for the implementation surveys or the interviews.
Must be a PLwD age 65 years or older seen by either the intervention or control sites' primary care teams' MD/APP in the 18-month intervention window for Aim 1.
PLwD will be eligible only after we confirm the presence of the AD/ADRD diagnosis.
All PLwD with a ≥50% 5-year all-cause mortality risk seen by the PCTM MD/APP over the 18-month intervention period will be eligible for the healthcare utilization analyses in Aim 2.

Exclusion

We will exclude primary care team members who do not care for older adults (e.g. pediatricians or lactation nurses), are employed at geriatric specialty or dementia specialty clinics, or are without a primary care panel (e.g., only urgent care).
Patients will be excluded if they have not been seen in the past 18 months by their primary care team, or if they do not have a diagnosis of ADRD.
  • Goals of Care Discussions18 months

    Presence of a documented Goals of Care (GOC) discussion between the primary care team member and the Person Living with Dementia (PLwD) or their surrogate decision-maker. Medical record documentation of discussion must include a) communication about dementia stage or prognosis AND b) decision-making for at least one major treatment: CPR/mechanical ventilation, hospitalization, treatments for infections, artificial/feeding/hydration, OR hospice.