Transitional Care of People With Dementia and Caregivers in the ADRD-PC Trial: A Mixed Methods Study

Abstract

ContextPeople with late-stage Alzheimer's diseases and related dementias (ADRD) have high risk for postacute complications and readmission; however, minimal research describes hospital transitional care. ObjectiveWithin the context of the ongoing ADRD-PC clinical trial, the purpose of this study was to describe the content and quality of transitional care of people with ADRD. MethodsDescriptive mixed methods using data from a retrospective chart review and interviews with palliative care social workers and a nurse providing transitional care in the ADRD-PC clinical trial. ResultsOf 40 dyads of people with late-stage ADRD and their caregivers, palliative care plans were documented for 29 patients (73%); completed postdischarge calls in 72 hours were made for 39 (98%) caregivers and calls in 2 weeks were made for 33 (78%). The content of postdischarge care was promoting continuity, identifying resources, helping caregivers feel heard, troubleshooting problems, and providing grief support. Challenges during transitional care were limited time to engage caregivers in hospital-based palliative care, educate caregivers about palliative care plans, coordinate care after transfers to long term care, and the scarcity of community ADRD resources. Facilitators of high quality transitional care were continuity of staff who saw the patient or caregiver across hospital and postacute contacts, caregiver understanding of goals of care, written palliative care plans, and resources for postdischarge care. ConclusionFindings indicate high quality dementia-specific transitional care occurs when staff have resources, such as ADRD training and care planning template, to pull the hospital palliative care plan forward into the postdischarge destination, help families fit the plan to new circumstances, and manage strain and grief related to changes in health and function.