UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for Alzheimer's Disease) intervention
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ABSTRACT Nursing homes (NH) are a critical site of care for people with Alzheimer's Disease and Related Dementias (ADRD), particularly near the end of life. By 2030, an estimated 40% of all U.S. deaths will occur in NHs; 70% of people with advanced dementia live their final days in a NH. Unfortunately, NH care is associated with inadequate symptom control, low family satisfaction, burdensome treatments, and poor quality of care near the end of life. Palliative care is a patient/family-centered model of care focused on maximizing quality of life and relieving the suffering of people with serious illness. Despite growing recognition that palliative care is effective for improving quality of life and quality of care and appropriate for NH residents with ADRD, there are a paucity of sustainably-designed and tested models for NHs and palliative care practices to implement. We propose an evidence-informed intervention that provides both internal capacity-building strategies for NHs, as well as external specialty palliative care support, to impact the overall quality of care for residents with ADRD. The objective of this proposal is to conduct a stepped wedge trial of the UPLIFT-AD (Utilizing Palliative Leaders In Facilities to Transform care for Alzheimer's Disease) intervention. The UPLIFT-AD bundle includes 1) an in- house palliative care champion who will receive training to facilitate advance care planning conversations with residents with ADRD and their surrogate decision-makers, screen residents for palliative care needs and serve as a liaison to external palliative care consultants; and 2) specialty palliative care consultant support providing individual resident consults and staff education. Consistent with the goals of PAS-18-030, the UPLIFT-AD intervention is designed to improve the quality of care and quality of life for persons with ADRD near the end of life. In order to achieve this we will conduct a stepped wedge trial in partnership with two palliative care practices and 16 NHs involving a projected 640 residents with dementia in two states with the following aims: 1) Compare quality of care of ADRD residents in intervention and control periods using the EOLD-CAD instrument (primary trial outcome) which assesses symptom management and comfort, administered to both family members and NH staff; compare family satisfaction with care at the end of life (EOLD-SWC) for ADRD residents' families in intervention vs. control periods; 2) Evaluate the implementation of UPLIFT-AD using the RE-AIM framework, including the proportion of eligible residents who receive palliative care assessments and the degree of adoption of the intervention; 3) Compare staff knowledge/attitudes about palliative care, using the Palliative Care Survey. If successful, the UPLIFT-AD bundle will serve as a much-needed, replicable model for palliative care support for residents with ADRD and will be primed for rapid translation. In an environment with increased incentives for health system and nursing facility integration, the UPLIFT-AD bundle, with both internal capacity-building and external specialty support, will be a model for partnerships to improve quality of care for residents with ADRD.
