Dementia Caregivers' Link to Assistance and Resources

NCT ID: NCT06860035

Last Updated: 2025-08-13

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

150 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-05-05

Study Completion Date

2026-06-30

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

The goal of this clinical trial is to learn if the Dementia Caregivers' Link to Assistance and Resources (DECLARE) program can improve support of, and engagement with, caregivers of home health patients with dementia. DECLARE includes a caregiver self-assessment that is reported in the home health patient record, and increased access to social work for cases including dementia caregivers. The main questions we aim to answer are:

* Will most caregivers who are offered the chance to complete an assessment choose to do so?
* Will clinicians report that the assessment information was useful?
* Will the rate of social work access increase for cases with patients with dementia who have involved family caregivers?

Researchers will compare DECLARE to usual care to see if taking part in the program increases caregiver self-efficacy and access to social work.

Participants will:

* Answer a short series of assessment questions and questions about their caregiving experiences at the beginning of the home health episode.
* Receive a social work visit from a Licensed Social Worker trained in dementia care.
* Answer a series of follow-up questions about their caregiving experiences at the end of the home health episode.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

The goal of the present study is to pilot test a novel ADRD caregiver assessment instrument, designed specifically for the HH setting, with the ultimate aims of improving caregiver self-efficacy and increasing access to social work during HH for cases involving caregivers who are experiencing high strain and/or low preparedness for caregiving. This is the Dementia Caregivers' Link to Assistance and Resources (DECLARE) program. Specific Aims include: (1) Contacting eligible caregivers to field a caregiver self-assessment and sharing caregiver responses with frontline staff in the patient record, (2) Identifying cases for social work access, and (3) Assessing the feasibility, acceptability, and impact on caregiver outcomes of the activities described in Aims 1 and 2.

This is an embedded Pragmatic Clinical Trial (ePCT) within the VNS Health home health agency. We will implement the intervention in 4 "treatment" branches (includes 8 clinical teams) and will compare to 6 "control" branches (includes 12 clinical teams). Treatment branches will receive the DECLARE intervention described in the following section and control branches will not have any intervention. In both arms, we will conduct baseline and follow-up telephone surveys with caregivers of eligible cases to gather outcomes data. We anticipate a 12-month trial, with regular analytic checkpoints to assess for potential issues and make revisions as needed.

We will identify eligible cases based on the start of care OASIS (home health patients 65 and older with diagnosed ADRD, a caregiver on record with a phone number, and payment through Traditional Medicare or a Medicare Advantage plan managed by VNS Health. Research staff will contact the caregiver of record via telephone to field the self-assessment survey. In treatment branches, caregiver responses will be entered into a secure survey platform (RedCAP) and uploaded to the patient electronic health record (HomeCare HomeBase) as a care coordination note. For cases without a social work order, the research team will either (a) contact the Clinical Field Manager to request a social work order, if none exists or (b) contact the appropriate social worker if a social work order is already in place. We anticipate 150 participants (60 from treatment branches and 90 from control branches).

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Alzheimer Disease or Associated Disorder Dementia

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Treatment (DECLARE)

The intervention for treatment branches includes two parallel processes: (1) calling eligible caregivers to field a self-assessment instrument and upload caregiver responses to the patient record, and (2) identifying and flagging cases for expedited social work access with dementia-trained social workers. Participants will also be contacted for a follow-up survey (at the end of home health care) to capture outcomes data.

Group Type EXPERIMENTAL

Dementia Caregivers' Link to Assistance and Resources (DECLARE)

Intervention Type OTHER

The intervention for treatment branches includes two parallel processes: (1) calling eligible caregivers to field a self-assessment instrument and upload caregiver responses to the patient record, and (2) identifying and flagging cases for expedited social work access with dementia-trained social workers.

Comparison (Usual care)

The comparison arm will receive usual care. Eligible caregivers will be contacted via telephone to field baseline and follow-up surveys to capture outcomes data for comparison.

Group Type NO_INTERVENTION

No interventions assigned to this group

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Dementia Caregivers' Link to Assistance and Resources (DECLARE)

The intervention for treatment branches includes two parallel processes: (1) calling eligible caregivers to field a self-assessment instrument and upload caregiver responses to the patient record, and (2) identifying and flagging cases for expedited social work access with dementia-trained social workers.

Intervention Type OTHER

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Home health patient (care recipient) must have a documented dementia diagnosis on the home health assessment, be 65 years or older, and have Traditional Medicare or Medicare Advantage as their primary payer for the home health episode.

Exclusion Criteria

* Caregivers are excluded if they are unable to communicate in English.
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

National Institute on Aging (NIA)

NIH

Sponsor Role collaborator

Visiting Nurse Service of New York

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Julia G Burgdorf, PhD

Role: PRINCIPAL_INVESTIGATOR

Center for Home Care Policy & Research, VNS Health

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

VNS Health Home Care

New York, New York, United States

Site Status RECRUITING

Countries

Review the countries where the study has at least one active or historical site.

United States

Central Contacts

Reach out to these primary contacts for questions about participation or study logistics.

Julia Burgdorf, PhD

Role: CONTACT

(585) 406-7926

Margaret McDonald, MSW

Role: CONTACT

(646) 771-5336

Facility Contacts

Find local site contact details for specific facilities participating in the trial.

Julia G Burgdorf, PhD

Role: primary

(585) 406-7926

Margaret McDonald, MSW

Role: backup

(646) 771-5336

References

Explore related publications, articles, or registry entries linked to this study.

Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001 Oct;41(5):652-7. doi: 10.1093/geront/41.5.652.

Reference Type BACKGROUND
PMID: 11574710 (View on PubMed)

Merrilees JJ, Bernstein A, Dulaney S, Heunis J, Walker R, Rah E, Choi J, Gawlas K, Carroll S, Ong P, Feuer J, Braley T, Clark AM, Lee K, Chiong W, Bonasera SJ, Miller BL, Possin KL. The Care Ecosystem: Promoting self-efficacy among dementia family caregivers. Dementia (London). 2020 Aug;19(6):1955-1973. doi: 10.1177/1471301218814121. Epub 2018 Nov 29.

Reference Type BACKGROUND
PMID: 30497302 (View on PubMed)

Burgdorf JG, Reckrey J, Russell D. "Care for Me, Too": A Novel Framework for Improved Communication and Support Between Dementia Caregivers and the Home Health Care Team. Gerontologist. 2023 Jun 15;63(5):874-886. doi: 10.1093/geront/gnac165.

Reference Type BACKGROUND
PMID: 36317266 (View on PubMed)

Burgdorf JG, Wolff JL, Chase JA, Arbaje AI. Barriers and facilitators to family caregiver training during home health care: A multisite qualitative analysis. J Am Geriatr Soc. 2022 May;70(5):1325-1335. doi: 10.1111/jgs.17762. Epub 2022 Mar 30.

Reference Type BACKGROUND
PMID: 35323993 (View on PubMed)

Burgdorf JG, Arbaje AI, Chase JA, Wolff JL. Current practices of family caregiver training during home health care: A qualitative study. J Am Geriatr Soc. 2022 Jan;70(1):218-227. doi: 10.1111/jgs.17492. Epub 2021 Oct 7.

Reference Type BACKGROUND
PMID: 34618918 (View on PubMed)

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

K01AG081502

Identifier Type: NIH

Identifier Source: secondary_id

View Link

2298464

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Connect-Home Clinical Trial
NCT03810534 COMPLETED NA
Rural Dementia Caregiver Project
NCT04428112 COMPLETED NA
CommunityRx-Dementia
NCT04146545 COMPLETED NA
Telephone Support for Dementia Caregivers
NCT00735800 COMPLETED PHASE2