Palliative Care for Persons With Late-stage Alzheimer's and Related Dementias and Their Caregivers (ADRD-PC)
Dementia, Dementia, Vascular, Dementia With Lewy Bodies
About this trial
This is an interventional supportive care trial for Dementia
Eligibility Criteria
Inclusion Criteria:
People with ADRD Inclusion Criteria:
- aged 55 or older
- hospitalized
- have a physician-confirmed diagnosis of ADRD
- staged GDS 6 or 7; or GDS 5 with additional co-morbidity defined by Charlson Comorbidity Index scored 5 or higher
Caregiver Inclusion Criteria:
- the adult (aged 18 or older) legally authorized representative (LAR) for healthcare and have capacity to serve in this role
- support the person with ADRD ( -can complete interviews in English.
Exclusion Criteria:
Dyads will be excluded if
- the LAR is not a family caregiver
- the patient currently receives palliative care or hospice
- patient or caregiver would be unduly stressed
- dyad is not successfully randomized.
Sites / Locations
- University of Colorado Denver
- Emory University
- Indiana University
- Massachusetts General Hospital
- University of North Carolina at Chapel Hill
Arms of the Study
Arm 1
Arm 2
Experimental
Active Comparator
Intervention Condition: ADRD-PC Program
Control Condition
Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams. Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions. Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
Patient-family caregiver dyads randomized to the control arm will receive educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patient will receive usual hospital and post-acute care.