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Completed

NCT Number: NCT05719077

Pilot Testing Dementia-Enhanced Training and Tool for Home Hospice Clinicians

The purpose of this study is to pilot test the feasibility, acceptability, and preliminary efficacy of a clinically useful, inclusive dementia-enhanced training and tool for use by home hospice clinicians to improve care and support for Black and White patients with dementia and their family caregivers. The investigators expect family caregivers of clinicians in the intervention group will report less caregiver burden (primary outcome) than caregivers of clinicians in the control group. The investigators expect that, compared to clinicians in the control group (usual care), clinicians in the intervention group (receive the training and use the tool) will demonstrate more knowledge of dementia-related caregiving issues (secondary outcomes). In exploratory analyses, the investigators expect family caregivers will report greater self-efficacy and preparedness, and that patients of clinicians in the intervention group will experience fewer live discharges than family caregivers of patients of clinicians in the control group.

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Key information

Conditions

Alzheimer's Disease and Related Dementias Alzheimer Disease Behavior Behavioral Symptoms Brain Diseases Caregiver Burden Central Nervous System Diseases Death Dementia Mental Disorders Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Stress, Psychological Tauopathies

Age range

19 year–90 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Rutgers Univeristy

New Brunswick, New Jersey, 08901, United States

About this study

For this aim, the investigators will conduct a randomized pilot study to determine the feasibility and acceptability of implementing the training and tool in clinical practice compared to usual care with 40 clinicians (20 intervention, 20 control) and 160 Black and white FCG (80 intervention, 80 control). The investigators will also determine preliminary efficacy of the training and tool. Outcomes include feasibility and acceptability of the intervention, reducing FCG burden (primary outcome), improving clinician knowledge and confidence (secondary outcomes) and increasing FCG preparedness and self-efficacy.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Individuals are not excluded from this study based on gender.
  • Based on proportion of hospice workforce and family caregivers that are female, we expect 70%-80% of participants will be female.
  • Nurse, social worker, or family member who provides care to persons(s) living with dementia enrolled in home hospice care.
  • 19-90 years old.
  • Can complete data collection in English.
  • Family Caregivers: identify as White or Black/African American.

Exclusion criteria

  • Participant is less than 19 years old or older than 90 years old.
  • Does not provide care to person(s) living with dementia enrolled in home hospice.
  • Cannot complete data collection in English.
  • Family Caregiver does not identify as White or Black/African American.

Treatment and study plan

EDITH-HC

Behavioral

This study tests feasibility and acceptability of implementing a tool and training in a clinical practice and the preliminary efficacy of training materials to enhance hospice clinicians' knowledge of dementia-related caregiving issues at end of life and a tool for clinicians to use to address caregiving issues related to dementia at end of life.

Primary outcomes

  1. Family Caregiver Burden

    Time frame: Baseline and through first subsequent hospice visit, an average of 8 weeks

    The investigators will assess this outcome using the validated, 12-item Zarit Caregiver Burden Inventory. Summed scores range from 0-48, with higher scores indicating greater burden.

    The investigators will assess changes in reported caregiver burden between baseline and the first subsequent hospice visit and compare differences in changes between the intervention and control groups. Because family caregiver participants are relatives of hospice patients that may die (at which point they will no longer be receiving home visits from nurses and social workers), the investigators expect that many participants will not complete all four time points of data collection.

Secondary outcomes

  1. Clinician Knowledge of Dementia-related Issues at End of Life

    Time frame: Baseline and through training completion, an average of 4 weeks

    The investigators will assess clinician knowledge of dementia-related issues at end of life using the validated, revised Dementia Knowledge Assessment Scale. The DKAS is a 25-item questionnaire, summed range: 0=50, with higher scores indicating greater knowledge.

    The investigators will assess changes in reported knowledge between baseline and after completing the training. The investigators will compare differences in changes between clinicians receiving the training (intervention) and those receiving a presentation on patterns of hospice outcomes for persons living with dementia (control).

Other outcomes

  1. Family Caregiver Self-efficacy (Exploratory)

    Time frame: Baseline and through first subsequent hospice visit, an average of 8 weeks

    The investigators will assess caregiver self-efficacy using the validated, 8-item Caregiver Self-Efficacy Scale (CSES). Mean scores range from 0-10, with higher scores indicating greater self-efficacy.

    The investigators will assess changes in caregiver self-efficacy between baseline and the first subsequent hospice visit and compare differences in changes between the intervention and control groups. The same issues due to attrition described in 1. Family Caregiver burden above also apply here.

  2. Family Caregiver Preparedness (Exploratory)

    Time frame: Baseline and through first subsequent hospice visit, an average of 8 weeks

    The investigators will assess caregiver preparedness for dementia caregiving using the validated, 8-item Preparedness Scale of the Family Care Inventory. Mean of 8 items ranges from 0-5, with higher scores indicating greater preparedness.

    The investigators will assess changes at baseline and the first subsequent hospice visit and compare differences in changes between the intervention and control groups. The same issues due to attrition described in 1. Family Caregiver burden above also apply here.

  3. Patient Hospice Discharge Status (Exploratory)

    Time frame: 90 days post-intervention

    The investigators will categorize the patient of study-enrolled FCPs into two categories based on their hospice enrollment status 90 days following study completion to determine number of patients who are discharged alive (category 1) compared to being deceased or still enrolled in hospice (category 2). This will be measured by looking at the "discharge status" variable in the electronic hospice records, which records patients as "enrolled," "discharged-deceased," or "discharged-live discharge." The investigators will count the number of patients in each category (discharged alive or enrolled/deceased) and compare results between intervention and control groups.

Sponsors and collaborators

Lead sponsor

Rutgers, The State University of New Jersey

Other

Collaborators

  • National Institute on Aging (NIA)

Registry information

Official study title

Study 3. Pilot Testing Feasibility, Acceptability, and Preliminary Efficacy of a Dementia-Enhanced Training and Tool for Home Hospice Clinicians in a Clinical Setting.

Acronym: EDITH-HC

Important dates

Study start
2023
Primary completion
2025
Study completion
2025
First posted
Feb 8, 2023
Registry last updated
Jul 16, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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