palliative care for persons with late-stage alzheimer's and related dementias and their caregivers

Conditions: Dementia; Dementia, Vascular; Dementia With Lewy Bodies; Dementia Frontal; Dementia, Mixed; Dementia Alzheimers; Alzheimer Disease; Dementia Severe

Summary: millions of americans have late-stage alzheimer's and related dementias (adrd), causing suffering due to loss of awareness of self and family, progressive dependency, physical and neuropsychiatric symptoms, and physical, emotional and financial strain for caregivers. investigators now propose a multi-site randomized clinical trial of the adrd palliative care (adrd-pc) program for persons with late-stage adrd and their family caregivers, triggered during hospitalization. investigators aim to learn if this program of dementia-specific palliative care, standardized caregiver education, and transitional care is effective to reduce burdensome hospital transfers, improve symptom treatment and control, augment supportive services, and reduce nursing home transitions for patients, and to improve caregiver outcomes of communication, shared decision-making and distress.

investigators have designed the adrd palliative care (adrd-pc) program of dementia-specific palliative and transitional care, and shown its feasibility and potential efficacy. delivered by interdisciplinary hospital palliative care teams, adrd-pc addresses 1) prognostic awareness, 2) symptom management, 3) shared decision-making, and 4) transition to community support services. the research objective is to conduct a multi-site efficacy randomized clinical trial (rct) of the adrd-pc program. investigators will enroll 424 dyads of hospitalized patients with late-stage adrd (global deterioration scale (gds) 6-7 or gds 5 with significant co-morbidity) with their family caregivers, and an additional 50 dyads that identify as hispanic/latino at 5 geographically diverse sites of the palliative care research cooperative group - university of north carolina, university of colorado, massachusetts general hospital (harvard university), indiana university, and emory university. the primary hypothesis is that adrd-pc will reduce hospital transfers (aim 1). additional hypotheses are that adrd-pc will improve patient-centered outcomes of symptom treatment, symptom control, use of community palliative care or hospice, and nursing home transitions (aim 2); and caregiver outcomes of communication, decision-making and distress (aim 3).

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 or spanish. 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.