Palliative Care for Persons with Late-stage Alzheimer's and Related Dementias and their Caregivers a Randomized Clinical Trial

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ABSTRACT Alzheimer’s disease and related dementias (ADRD) affect 5.6 million Americans at an annual cost of over $157 billion. Family caregivers experience extraordinary physical, emotional and financial strain. People who identify as Hispanic / Latino are 1.5 times as likely to develop ADRD. One in 3 Hispanic / Latino caregivers report that bias, poor information and practical barriers limit access to specialty ADRD care. Hospitalizations for acute illnesses are common in late-stage ADRD, and also present a unique opportunity for dementia-specific palliative care to address suffering and reduce burdensome treatments, since 72% of hospitals have palliative care teams. Evidence for dementia-specific palliative care is rare, and its cultural adaptation to meet the needs of Hispanic / Latino families is a major research gap. Our research team is conducting the ADRD-PC study (R01AG065394), a multi-site Stage II efficacy clinical trial that is the first rigorous test of a dementia palliative care intervention. People with late-stage dementia and their caregivers are enrolled during a hospitalization for acute illness. Dyads are randomized to the ADRD-PC intervention (specialty palliative care + structured caregiver education + transitional care) or control (educational materials on dementia caregiving) arms and followed for 60-days post discharge. Enrollment began in all sites in November 2021, and is on timeline. We are thus uniquely positioned to leverage research infrastructure in a timely way to address this gap. Our research objective is to culturally tailor the ADRD-PC intervention, and conduct a pilot feasibility clinical trial of the adapted ADRD-PC intervention for people with late-stage ADRD who self-identify as Hispanic / Latino and their family caregivers. We will conduct stakeholder-informed adaptation of study materials and processes (Aim 1), and enroll n=50 hospitalized dyads of Hispanic / Latino adults with late-stage ADRD and their family caregivers. Our Specific Aims to achieve this objective are: Aim 1: To adapt and implement ADRD-PC study materials that are culturally and linguistically appropriate for this population, guided by a panel of Hispanic / Latino stakeholders. Aim 2: To determine the feasibility, acceptability and preliminary efficacy of the ADRD-PC intervention for n= 50 Hispanic / Latino dyads living with late-stage dementia in a pilot randomized clinical trial. IMPACT: This supplement to the ADRD-PC clinical trial has the potential to positively impact existing health disparities in ADRD care and research for people who identify as Hispanic / Latino with late-stage dementia and their family caregivers.