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

NCT07182357 | Not Yet Recruiting

• 1 other identifier: i24-00426
• Study Type: interventional
• Target: 96
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Alzheimer Disease and Related Dementias

Keywords

hospice care; care transitions; Alzheimer's disease and related dementias

Outcome Measures

Primary Outcomes (1)

• 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.

Secondary Outcomes (1)

• Acceptability of the Dementia Care Management Hospice Transitions Checklist

  After intervention delivery, we will collect secondary outcome data within 1 month.

Other Outcomes (4)

• 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.

Study Arms (1)

Dementia Care Management Checklist for Hospice Transitions

EXPERIMENTAL

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.

Behavioral: Dementia Care Management Checklist for Hospice Transitions

Interventions

Dementia Care Management Checklist for Hospice Transitions BEHAVIORAL

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.

Dementia Care Management Checklist for Hospice Transitions

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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

You may not qualify if:

• 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
• \. Do not have experience managing hospice transitions for PLWD

Sponsors & Collaborators

• New York University: lead
• Visiting Nurse Service of New York: collaborator

Study Sites (1)

NYU Rory Meyers College of Nursing and VNS Health

New York, New York, 10010, United States

Location

Related Publications (2)

• 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 BACKGROUND

• 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 BACKGROUND

MeSH Terms

Conditions

Alzheimer Disease

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders

Central Study Contacts

Komal P Murali, PhD, RN, ACNP-BC

CONTACT

212-998-5783; kp47@nyu.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: This is a Stage 1b clinical trial.

Study Record Dates

• First Submitted: June 5, 2025
• First Posted: September 19, 2025
• Study Start: October 1, 2025
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): July 31, 2028
• Last Updated: September 19, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, SAP, ANALYTIC CODE
• Time Frame: Data will be made available as soon as possible or at the time of associated publication. All data to be shared will be shared by the close of the reward. Data will be made available, at minimum, for seven years.
• Access Criteria: All dataset(s) that can be shared will be deposited in the National Institute on Aging (NIA) National Alzheimer's Coordinating Center (NACC).

Locations

US (1)