Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
ENGAGE-D
ENGAGE-D: Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
ENGAGE-D
ENGAGE-D: Designing Care Management for Hospice Transitions for Persons Living With Advanced Dementia
Sponsor study identifier
interventional
96
1 country
1
Study Start
May 13, 2026
Actual (reported)Primary Completion
December 31, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
July 31, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
July 31, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
June 5, 2025
Actual (reported)September 19, 2025
Actual (reported)May 13, 2026
Actual (reported)December 31, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
July 31, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Feasibility of the Dementia Care Management Hospice Transitions Checklist
The primary outcome is feasibility. Feasibility will be measured for each group including recruitment and retention rates, rate of completion of the intervention as the proportion of individuals who use and receive the intervention, and whether the different components of the intervention are achievable.
After enrollment and study participation, we will collect feasibility data within 1 month after intervention receipt.
Acceptability of the Dementia Care Management Hospice Transitions Checklist
After intervention delivery, we will collect secondary outcome data within 1 month.
Fidelity
To be measured within 1 month of intervention delivery.
Usability
To be measured within 1 month of intervention delivery.
Hospice Enrollment and Time to Enrollment
Hospice enrollment and time to enrollment (of the person with dementia) will be measured at 1 and 6 months after intervention receipt.
The care management checklist will be administered to care partners by care managers during an outreach call to discuss the person with dementia's care and clinical needs. In this conversation, they will use the checklist to ask questions regarding care needs, decision-making considerations (healthcare proxy, etc), end-of-life dementia education, social and cultural needs, and potential care 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.
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
NYU Rory Meyers College of Nursing and VNS Health
New York, New York, 10010, United States
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.
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.
First Submitted
June 5, 2025
First Posted
September 19, 2025
Study Start
May 13, 2026
Actual (reported)Primary Completion
December 31, 2027
Aligning Medications With What Matters Most
Contact the study team to confirm eligibility.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
July 31, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
July 8, 2026
Record last verified: 2026-06
De-identified and redacted focus group and/or interview transcripts and coding summaries may be shared. De-identified intervention outcome measurement data and care partner satisfaction data may be shared. Study protocols and analysis plans will be shared.
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Source: ClinicalTrials.gov.
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