Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia

ENGAGE-D: Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia

This study will test a care management intervention to guide end-of-life care and hospice transitions for persons with dementia and their care partners receiving home healthcare and ascertain feasibility, acceptability, fidelity, and usability of a dementia care management hospice transitions checklist. This study will also examine hospice enrollment, time to enrollment, and care partner satisfaction with the intervention. The intervention will be delivered within usual care management within a large home healthcare agency.

This study has the following design: Unblinded, Non-Randomized, Single-Arm Intervention Study (Feasibility Trial). In this study, the team will pilot test the care management checklist intervention with care partners of persons with dementia. This intervention will be tested for feasibility (primary outcome), acceptability, fidelity, and usability (secondary) for in a single arm feasibility trial. The intervention will be administered (NIH Stage 1B) within usual care management for hospice transitions with care partners of PLWD. This study will also examine hospice enrollment and time to enrollment, and care partner satisfaction with the intervention.

The study population includes care partners and persons living with dementia; HHC professionals who engage in hospice transitions care management with care partners of PLWD (e.g., care managers who are nurses or social workers) and field nurses; Medical providers who engage in hospice transitions communication (e.g., home care physicians and nurse practitioners); HHC administrators who oversee and manage the delivery of care management prior to hospice transitions.

Inclusion:

Care Partners and PLWD Dyad:

1. Care partners of PLWD who have a diagnosis of moderate to severe dementia.
2. Able to provide informed consent

HHC Professionals:

Care Managers and Field Nurses:

1. Care managers who regularly engage hospice transitions with care partners of PLWD
2. Age 18 or older

Medical Providers:

1. Medical providers (e.g., physicians and nurse practitioners) who refer patients for hospice enrollment.
2. Age 18 or older

HHC Administrators:

1. Home healthcare administrators who work with the Certified Home Health Agency or the Advanced Illness Management Program that refers patients to hospice care
2. Age 18 or older

Exclusion

Care Partner and PLWD Dyad

1. Under age 18
2. Care partners who are caring for PLWD with Mild Cognitive Impairment
3. PLWD with Mild Cognitive Impairment

HHC Professionals: Care Managers, Medical Providers, Administrators

1. Do not have experience managing hospice transitions for PLWD