Persons with Alzheimer?s disease and related dementias (AD/ADRD), who receive care in skilled nursing facilities (SNF), are a medically complex population with substantial dependence on family caregivers. Despite the high prevalence of acute care use and mortality after persons with AD/ADRD return home, no studies designed or tested transitional care to prepare persons with AD/ADRD and their caregivers for transitions from SNFs to home. In the parent study (Connect-Home Clinical Trial [R01NR017636]), we are conducting the first efficacy trial of transitional care for seriously ill persons receiving SNF care and their caregivers. The objectives in this supplement are: (1) to adapt Connect-Home for the unique transitional care needs of persons with AD/ADRD and their caregivers and (2) to study the feasibility, acceptability, and outcomes of the adapted intervention. Our central hypothesis is that by applying a systematic, stakeholder-engaged approach, we will adapt Connect-Home to support the delivery of transitional care to meet the distinct care needs of persons with AD/ADRD and their caregivers. The rationale for this study is that adapting and testing Connect-Home will generate a new model of transitional care for a future efficacy trial. We propose two specific aims: (1) engage diverse stakeholders to identify unmet needs or persons with AD/ADRD and their caregivers and co-produce an adapted version of the Connect-Home intervention for persons with AD/ADRD and their caregivers; and (2) determine the feasibility and acceptability of the adapted intervention and estimated mean outcomes of persons with AD/ADRD and their caregivers. The setting for the study will be four SNFs that currently use the Connect- Home intervention. The sample will include (1) persons with AD/ADRD, (2) caregivers (e.g., family members) of persons with AD/ADRD, and (3) SNF and home care staff.
In Aim 1, we will engage a steering committee (comprised of academic, SNF/home care and caregiver stakeholders), use mixed methods to identify unmet care needs of persons with AD/ADRD and their caregivers, and adapt Connect-Home to address those unmet needs while retaining fidelity to its program theory.
In Aim 2, we will implement adapted Connect-Home tools and staff training in two SNFs and a home care agency and study (1) the feasibility of the adapted intervention (using adapted chart review measures from the parent study) and the (2) acceptability of the intervention (using surveys with 20 persons with AD/ADRD, their 20 caregivers, and staff). We also will study patient and caregiver outcomes of the adapted intervention using measures in the parent study (i.e., patient preparedness for discharge and preparedness for caregiving; patient quality of life, function, days of acute care use; and caregiver burden and distress).
Persons with Alzheimer?s Disease and related dementias (AD/ADRD), as they draw closer to the end-of-life, experience multiple transitions between healthcare providers and settings. More than 50% of persons admitted to Skilled Nursing Facilities (SNF) die or return to hospital within 90 days of discharge to home. The proposed study to adapt and pilot test an adapted version of the Connect-Home transitional care intervention is relevant to the NIH?s mission because (a) it has the potential to improve quality of life, function, and acute care use for persons with AD/ADRD during the transition from SNFs to home, and (b) reduce burden and distress for their caregivers.
