Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Dementia Care Management Checklist for Hospice Transitions.
- Who it may be relevant to
- Registry conditions: Alzheimer Disease and Related Dementias. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
ENGAGE-D: Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
Overview
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.
Detailed 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 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.
Interventions
- Behavioral Dementia 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 referr
Primary outcome measures
- Feasibility of the Dementia Care Management Hospice Transitions Checklist [Time frame: After enrollment and study participation, we will collect feasibility data within 1 month after intervention receipt.]
Secondary outcome measures (1)
- Acceptability of the Dementia Care Management Hospice Transitions Checklist [Time frame: After intervention delivery, we will collect secondary outcome data within 1 month.]
Eligibility criteria
Inclusion:
Care Partners and PLWD Dyad:
- Care partners of PLWD who have a diagnosis of moderate to severe dementia.
- Able to provide informed consent
HHC Professionals:
Care Managers and Field Nurses:
- Care managers who regularly engage hospice transitions with care partners of PLWD
- Age 18 or older
Medical Providers:
- Medical providers (e.g., physicians and nurse practitioners) who refer patients for hospice enrollment.
- Age 18 or older
HHC Administrators:
- Home healthcare administrators who work with the Certified Home Health Agency or the Advanced Illness Management Program that refers patients to hospice care
- Age 18 or older
Exclusion
Care Partner and PLWD Dyad
- Under age 18
- Care partners who are caring for PLWD with Mild Cognitive Impairment
- PLWD with Mild Cognitive Impairment
HHC Professionals: Care Managers, Medical Providers, Administrators
1\. Do not have experience managing hospice transitions for PLWD
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Allocation
- N/A
- Model
- Single group
- Masking
- Open label
- Primary purpose
- Supportive care
Study locations
United States · 1 center
- NYU Rory Meyers College of Nursing and VNS Health — New York
Publications
- Murali KP, Carpenter JG, Kolanowski A, Bykovskyi AG. Comprehensive Dementia Care Models: State of the Science and Future Directions. Res Gerontol Nurs. 2025 Jan-Feb;18(1):7-16. doi: 10.3928/19404921-20241211-02. Epub 2025 Jan 1. PMID 39836766
- Murali KP, Gogineni S, Bullock K, McDonald M, Sadarangani T, Schulman-Green D, Brody AA. Interventions and Predictors of Transition to Hospice for People Living With Dementia: An Integrative Review. Gerontologist. 2025 Apr 9;65(5):gnaf046. doi: 10.1093/geront/gnaf046. PMID 39903194
Identifiers
NCT: NCT07182357 · i24-00426