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

NCT ID: NCT07182357

Last Updated: 2025-09-19

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 96 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2025-10-31
• Study Completion Date: 2028-07-31

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.

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.

Conditions

Alzheimer Disease and Related Dementias

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

Dementia Care Management Checklist for Hospice Transitions

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.

Group Type: EXPERIMENTAL

Dementia Care Management Checklist for Hospice Transitions

Intervention Type: 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.

Interventions

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 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.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Visiting Nurse Service of New York

OTHER

Sponsor Role: collaborator

New York University

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

NYU Rory Meyers College of Nursing and VNS Health

New York, New York, United States

Countries

United States

Central Contacts

Komal P Murali, PhD, RN, ACNP-BC

Role: CONTACT

kp47@nyu.edu

212-998-5783

Facility Contacts

Komal P Murali, PhD, RN, ACNP-BC

Role: primary

kp47@nyu.edu

212-998-5783

References

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.

Reference Type: BACKGROUND

PMID: 39836766 (View on PubMed)

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.

Reference Type: BACKGROUND

PMID: 39903194 (View on PubMed)

Other Identifiers

i24-00426

Identifier Type: -

Identifier Source: org_study_id