ENGAGE-D: Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
New York University
Summary
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.
Description
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 enrol…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- Yes
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 P…
Interventions
- BehavioralDementia Care Management Checklist for Hospice Transitions
Intervention: After appropriate care partners of hospice-eligible PLWD are identified who will be receiving the checklist intervention, care managers will perform telephonic outreach to engage them in a conversation about care needs (as they would in typical clinical practice). The telephonic outreach will be followed up with a recommendation for follow up by a medical provider who may conduct a hospice care assessment and engage the care partner in decision-making surrounding the hospice referral and enrollment process. This intervention was co-designed with care partners, home healthcare professionals, administrators, and medical providers. It is meant to be comprehensive and speak to the needs of all relevant parties engaged in the care of persons with dementia. It is developed so that it can be scaled and implemented widely.
Location
- NYU Rory Meyers College of Nursing and VNS HealthNew York, New York