EDITH-HC Training Tool for Dementia Care

(EDITH-HC Trial)

Overseen By Elizabeth Luth, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Rutgers, The State University of New Jersey

Disqualifiers: Under 19, Over 90, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 4

120 Participants Needed

Trial Summary

Do I have to stop taking my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the EDITH-HC treatment for dementia care?

The research shows that training programs for dementia care, like the VOICE Dementia Care Program, have been effective in improving caregivers' knowledge and confidence in managing dementia-related behaviors. This suggests that similar training tools, such as EDITH-HC, could also be effective in enhancing dementia care. ^{1 2 3 4 5}

How is the EDITH-HC treatment for dementia care different from other treatments?

The EDITH-HC treatment is unique because it focuses on training caregivers to better understand and manage dementia care, rather than directly treating the condition itself. This approach is different from traditional medical treatments as it aims to improve the quality of care through education and skill development for caregivers. ^{6 7 8 9 10}

What is the purpose of this trial?

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.

Research Team

Elizabeth Luth, PhD

Principal Investigator

Rutgers University

Eligibility Criteria

This trial is for nurses, social workers, or family members aged 19-90 who care for someone with dementia in home hospice. Participants must speak English and identify as White or Black/African American. While gender isn't a factor for exclusion, it's anticipated that most participants will be female.

Inclusion Criteria

I understand that most participants are expected to be female.

Must be a nurse, social worker, or family member providing care to person(s) living with dementia enrolled in home hospice care

Can complete data collection in English

Exclusion Criteria

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

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Clinicians in the intervention group watch educational videos and use a caregiver burden assessment tool during home visits

8 weeks

Up to 4 visits (in-person)

Control

Clinicians in the control group listen to a presentation on outcomes for home hospice patients living with dementia

8 weeks

Follow-up

Participants are monitored for changes in caregiver burden, self-efficacy, and preparedness

6 months

Treatment Details

Interventions

• EDITH-HC

Trial Overview The study tests 'EDITH-HC', a training and tool designed to enhance dementia care by home hospice clinicians. It aims to see if this can reduce caregiver burden and increase clinicians' knowledge about dementia caregiving compared to usual care.

Participant Groups

Group I: Intervention Group Experimental Treatment 1 Intervention

Clinicians in intervention group will watch a series educational and instructional videos and use caregiver burden assessment tool up to four times during regular home visits with family caregivers of home hospice patients living with dementia. Clinicians will be assessed for changes in knowledge regarding dementia caregiving (secondary outcome). Family caregivers will be assessed for changes in caregiver burden (primary outcome) and preparedness and self-efficacy (exploratory outcomes).

Group II: Control Group Experimental Treatment 1 Intervention

Clinicians in control group will listen to a presentation on outcomes for home hospice patients living with dementia. Clinicians will be assessed for changes in knowledge regarding dementia caregiving (secondary outcome). Family caregivers will be assessed for changes in caregiver burden (primary outcome) and preparedness and self-efficacy (exploratory outcomes).

Who Is Running the Clinical Trial?

Rutgers, The State University of New Jersey

Lead Sponsor

Trials

471

Recruited

81,700+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Findings from Research

The VOICE Dementia Care Training Program significantly improved knowledge and self-efficacy among care managers and nurses, with a large effect size (d = 1.8) in these areas, indicating enhanced confidence in managing behavioral symptoms of dementia.

This evidence-informed training program demonstrates the feasibility and effectiveness of nonpharmacological approaches in dementia care, addressing the training needs of caregivers and promoting better management of dementia-related behaviors.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Empowering the dementia care workforce to manage behavioral symptoms of dementia: Development and training outcomes from the VOICE Dementia Care Program. Karlin, BE., Young, D., Dash, K.[2018]

Family training programs for dementia care have been shown to effectively reduce behavioral problems in patients and delay the need for institutionalization, supported by recent controlled trials.

Despite the progress, there is still a need for more controlled clinical trials and research into broader factors affecting caregiver effectiveness, such as the physical health of both patients and caregivers, as well as social support systems.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Training families to provide care: effects on people with dementia. Teri, L.[2019]

Training care staff in person-centered care (PCC) and dementia care mapping (DCM) significantly improved the quality of life (QOL) for residents with dementia, as evidenced by increased well-being and ill-being values measured over three time points.

Over 50% of residents showed better well-being scores after the training, and there was a notable increase in positive interactions among residents, indicating that the training had a meaningful impact on social engagement.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Care staff training based on person-centered care and dementia care mapping, and its effects on the quality of life of nursing home residents with dementia. Yasuda, M., Sakakibara, H.[2022]

A development program by the Royal College of Nursing, evaluated by the University of Worcester, successfully supported clinical nurse leaders in enhancing dementia care across nine acute general hospitals using an action learning approach.

The study highlights the importance of investing in clinical leaders and dementia specialists to foster systematic improvements in person-centered care for patients with dementia in hospital settings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Transforming dementia care in acute hospitals. Thompson, R.[2017]

The dementia Carer Education Programme increased carers' knowledge about dementia but did not significantly improve their quality of life, burden, or well-being after six months, based on a study of 32 carers.

Carers who reported a worsening situation post-programme experienced poorer quality of life and increased burden, highlighting that patient behavior disturbance was a key factor affecting their experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Dementia carer education and patient behaviour disturbance. Coen, RF., O'Boyle, CA., Coakley, D., et al.[2006]

A survey of 61 healthcare staff in Germany and Greece revealed a strong interest in future dementia training programs, with 96% of German and 100% of Greek participants expressing willingness to participate.

Despite high attendance in general educational programs, participation in specific dementia training was low (24% in Germany and 5.5% in Greece), indicating a gap that future training initiatives should address by focusing on practical skills and advice.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Expectations of nursing personnel and physicians on dementia training : A descriptive survey in general hospitals in Germany and Greece. Schneider, J., Gkioka, M., Papagiannopoulos, S., et al.[2022]

The Internet-based CARES training module significantly improved dementia care knowledge among 40 certified nursing assistants (CNAs) in nursing homes and assisted living facilities, indicating its effectiveness as a training tool.

Over 85% of CNAs reported that the CARES protocol enhanced their care competency and reduced stress related to caring for residents with dementia, suggesting that such online training programs are beneficial and efficient for long-term care settings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Feasibility of Internet training for care staff of residents with dementia: the CARES program. Hobday, JV., Savik, K., Smith, S., et al.[2022]

The STAR training program, which includes workshops and on-site consultations for staff in assisted living residences, significantly reduced behavioral and emotional distress in residents with dementia, as evidenced by a randomized controlled trial involving 120 residents.

Staff who underwent the STAR training reported less negative impact from residents' behaviors and increased job satisfaction, highlighting the program's effectiveness in improving both resident care and staff well-being.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

STAR: a dementia-specific training program for staff in assisted living residences. Teri, L., Huda, P., Gibbons, L., et al.[2022]

The Dementia Care Skills for Aged Care Workers program aims to train 17,000 aged care staff in Australia over three years, providing essential skills for dementia care and resulting in a nationally recognized qualification.

Despite challenges in training delivery, such as geographical distances and staffing issues, the program is on track to meet its goals, with positive feedback indicating it is effectively improving care practices, including a notable participation rate of 9% from registered nurses.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Large-scale training in the essentials of dementia care in Australia: Dementia Care Skills for Aged Care Workers project. Fleming, R., Fitzgerald, D.[2016]

An experiential training course for care home staff has improved their understanding of the challenges faced by residents with dementia, leading to more empathetic interactions.

The training has resulted in immediate changes in staff behavior towards residents, enhancing the quality of care provided.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

An eye opener on living with dementia. Learner, S.[2019]

References

1. England pubmed.ncbi.nlm.nih.gov

Empowering the dementia care workforce to manage behavioral symptoms of dementia: Development and training outcomes from the VOICE Dementia Care Program. [2018]

2. England pubmed.ncbi.nlm.nih.gov

Training families to provide care: effects on people with dementia. [2019]

3. England pubmed.ncbi.nlm.nih.gov

Care staff training based on person-centered care and dementia care mapping, and its effects on the quality of life of nursing home residents with dementia. [2022]

4. England pubmed.ncbi.nlm.nih.gov

Transforming dementia care in acute hospitals. [2017]

5. England pubmed.ncbi.nlm.nih.gov

Dementia carer education and patient behaviour disturbance. [2006]

6. Germany pubmed.ncbi.nlm.nih.gov

Expectations of nursing personnel and physicians on dementia training : A descriptive survey in general hospitals in Germany and Greece. [2022]

7. United States pubmed.ncbi.nlm.nih.gov

Feasibility of Internet training for care staff of residents with dementia: the CARES program. [2022]

8. United States pubmed.ncbi.nlm.nih.gov

STAR: a dementia-specific training program for staff in assisted living residences. [2022]

9. England pubmed.ncbi.nlm.nih.gov

Large-scale training in the essentials of dementia care in Australia: Dementia Care Skills for Aged Care Workers project. [2016]

10. England pubmed.ncbi.nlm.nih.gov

An eye opener on living with dementia. [2019]