Community Health Worker Support for Dementia

(CEDART Trial)

Overseen By Jung Kwak, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of Texas at Austin

Disqualifiers: Hospice eligibility, others

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

Compensation: Varies

Number of Visits: Unknown

40 Participants Needed

Trial Summary

What is the purpose of this trial?

The main purpose of this intervention study is to test if the community health worker (CHW)-led care transition support intervention is feasible and acceptable to the persons living with dementia (PLWD)'s caregivers, and other healthcare providers. Main hypotheses of the study are: 1. the CHW interventionist will adhere to the intervention protocol with the score of 80% or higher on the intervention fidelity checklist throughout the intervention delivery period; 2. caregiver participants in the intervention group will rate the intervention, and the CHW interventionist to be helpful and satisfactory at the end of the intervention; 3. intervention feasibility (as measured by intervention completion rate, i.e., number of participants completing the telephone sessions with the CHW coach, and participant assessment completion rate, i.e., number of participants completing each study assessment at baseline, 6, 12 weeks) will be at equal to or higher than 80%; and 4. intervention participants - patient and caregiver - outcomes will improve at post-discharge Week 12 follow up from baseline and Week 6.

Will I have to stop taking my current medications?

The trial information does not specify whether participants need to stop taking their current medications. It is best to consult with the trial coordinators or your healthcare provider for guidance.

What data supports the effectiveness of the treatment Community Health Worker (CHW) Guided Support for dementia?

Research shows that community-based care management programs, which include support from community health workers, can improve outcomes for caregivers and people with dementia by providing education and facilitating access to resources. These programs are similar to case management approaches that have been shown to enhance the quality of care for people with dementia living at home. ^{1 2 3 4 5}

Is Community Health Worker Support for Dementia safe for humans?

Community Health Worker (CHW) programs have been used in various health settings and are generally considered safe, as they focus on providing support and education rather than medical treatments. However, CHWs may need more training in specific areas like medication management to ensure they provide the best support possible. ^{6 7 8 9 10}

How is the Community Health Worker Guided Support treatment for dementia different from other treatments?

Community Health Worker Guided Support is unique because it involves trained community members who provide personalized support and education to patients and their families, helping them navigate healthcare services and manage their condition. This approach focuses on improving access to care and health outcomes by leveraging the trust and understanding CHWs have within their communities, which is different from traditional medical treatments that primarily involve direct clinical interventions. ^{9 11 12 13 14}

Research Team

Jung Kwak, PhD

Principal Investigator

University of Texas at Austin

Eligibility Criteria

This trial is for individuals with memory loss or cognitive impairment, including those diagnosed with dementia. It's aimed at supporting both the patients and their caregivers. Participants must be willing to complete telephone sessions and assessments.

Inclusion Criteria

I am over 18, speak English or Spanish, and help with a relative or partner's medical care.

Key Informants meeting specific eligibility criteria based on role (hospital staff, family caregivers, content experts or community service providers)

I am 50 or older, have dementia or memory issues, and live at home.

Exclusion Criteria

Key Informants who do not meet the eligibility criteria

Caregivers who do not meet the eligibility criteria

I am a staff member not eligible or I don't speak English.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Community Health Worker (CHW)-led care transition support intervention for persons living with dementia and their caregivers

12 weeks

Weekly or bi-weekly telephone/Zoom check-ins

Follow-up

Participants are monitored for safety and effectiveness after treatment

4 weeks

Treatment Details

Interventions

• Community Health Worker (CHW) Guided Support

Trial Overview The study tests a support program led by community health workers (CHWs) for people living with dementia and their caregivers. The goal is to see if this approach is practical, helpful, and satisfactory over a period involving baseline assessment, follow-ups at 6 weeks, and post-discharge at 12 weeks.

Participant Groups

Group I: CHW intervention group Experimental Treatment 1 Intervention

dementia patient and caregiver dyad

Who Is Running the Clinical Trial?

University of Texas at Austin

Lead Sponsor

Trials

387

Recruited

86,100+

Findings from Research

A comprehensive review of 52 studies led to the development of a theoretical model that outlines effective strategies for supporting people with dementia to live independently and with a good quality of life at home.

The systematic review of 11 randomized controlled trials identified two specific interventions that successfully increased the time individuals with dementia could live in their own homes, emphasizing the importance of relational and recovery models, as well as family carer support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence. Lord, K., Beresford-Dent, J., Rapaport, P., et al.[2020]

The review analyzed 67 studies across 25 dementia case management programs, highlighting that while all programs included essential case management steps, there were significant differences in their implementation and effectiveness.

About half of the programs provided education and training for informal caregivers, and the review suggests that using a standardized framework could improve the effectiveness and generalizability of these interventions in future research and practice.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Case management for people with dementia living at home and their informal caregivers: A scoping review. Schiller, C., Grünzig, M., Heinrich, S., et al.[2022]

A community-based, telephone-delivered dementia care management program significantly reduced caregiver burden over time compared to standard clinical evaluation, based on a study involving 440 caregivers of older adults with dementia.

Caregivers in the intervention group also reported fewer challenging behaviors from care recipients and less distress in response to these behaviors at the 3-month follow-up, indicating improved outcomes for both caregivers and care recipients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia. Mavandadi, S., Wray, LO., DiFilippo, S., et al.[2018]

The study involved 98 semi-structured interviews and community forums with healthcare professionals and community members to co-create a new model of care for a multidisciplinary memory clinic, highlighting the need for better support and resources for dementia diagnosis and management.

Participants emphasized the importance of a 'one-stop-shop' approach for dementia services, including rapid referrals and case management, while identifying barriers such as transportation and funding that need to be addressed to improve access to care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

"We need a one-stop-shop": co-creating the model of care for a multidisciplinary memory clinic with community members, GPs, aged care workers, service providers, and policy-makers. Steiner, GZ., Ee, C., Dubois, S., et al.[2023]

Psychoeducational programs and multicomponent interventions have shown promising results in improving the quality of care for people with dementia living at home, based on a review of 23 randomized controlled trials.

Cognitive rehabilitation is particularly effective when implemented early in the disease, and case managers can help reduce the need for institutionalization and other community services for dementia patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Best practices interventions to improve quality of care of people with dementia living at home. Zabalegui, A., Hamers, JP., Karlsson, S., et al.[2022]

Trained community health workers (CHWs) were able to identify mild cognitive impairment (MCI) and dementia in 61.1% of participants, showing a strong agreement with physician diagnoses, which identified 56.7%.

The CDR ratings by CHWs demonstrated high predictive ability for detecting MCI and dementia, with a sensitivity of 85.5% and specificity of 88.6%, indicating that CHWs can play a crucial role in early identification and care for elderly individuals in communities with limited access to bilingual healthcare providers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Feasibility and validity of dementia assessment by trained community health workers based on Clinical Dementia Rating. Han, HR., Park, SY., Song, H., et al.[2021]

Community health workers (CHWs) can play a vital role in improving dementia care by providing cost-effective services, as highlighted in a scoping review of 10 studies.

The review identified five key areas where CHWs can contribute: raising community awareness, screening for dementia, assisting with HIV-associated dementia, helping patients navigate healthcare systems, and supporting caregivers of individuals with dementia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Role of Community Health Workers in Addressing Dementia: A Scoping Review and Global Perspective. Alam, RB., Ashrafi, SA., Pionke, JJ., et al.[2022]

Community health workers (CHWs) have proven effective in various health care settings, but their perceived value is diminished due to inconsistent credentialing and lack of billing structures for their services.

The article proposes a framework to better define CHW roles and competencies, which could help integrate them into health care systems and improve recognition and payment for their contributions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Development of a Framework to Describe Functions and Practice of Community Health Workers. Corder-Mabe, J., Johnson, S., Mazmanian, PE., et al.[2021]

A 15-hour training course significantly improved the asthma medication instruction abilities of 11 immigrant Mexican community health workers (CHWs), with median correct technique scores rising from 25% to 69% for metered dose inhalers and from 0% to 64% for spacers after training.

Post-training evaluations showed that all CHWs demonstrated adequate understanding of medication delivery techniques, indicating that with proper training, CHWs can effectively help families manage asthma medications.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation of an asthma medication training program for immigrant Mexican community health workers. Martin, MA., Mosnaim, GS., Rojas, D., et al.[2011]

A survey of 77 Community Health Workers (CHWs) revealed that while 79.2% provide medication management services, over half (57.1%) rated their confidence in this area as 'poor' or 'fair', indicating a significant gap in self-assessed competency.

The findings suggest a strong need for enhanced medication management training in CHW certificate and continuing education programs to improve their confidence and effectiveness in delivering these services.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Identifying Medication Management Confidence and Gaps in Training Among Community Health Workers in the United States. Jam, VA., McKay, KL., Holmes, JT.[2020]

Community Health Workers (CHWs) have proven effective in improving asthma management and education for children and their families, as shown in a review of 15 studies conducted in the U.S.

The Rhode Island Integrated Response Asthma Care Implementation Program (RI-AIR) highlights the importance of CHWs in providing services like home assessments and resource linkage, emphasizing the need for further research on integrating CHWs into healthcare teams and ensuring their services are reimbursed.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Community Health Workers' Role in Supporting Pediatric Asthma Management: A Review. Coutinho, MT., Subzwari, SS., McQuaid, EL., et al.[2022]

Community health worker (CHW) programs in Egypt, Pakistan, and Afghanistan show significant strengths, such as community acceptance and support from health ministries, which enhance sustainability and empower women, but they also face challenges like inadequate training and unpredictable pay.

The review highlights the need for policy-makers to improve CHW working conditions, update training curricula, and standardize practices to maximize the effectiveness of these programs in reducing healthcare disparities.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Task sharing in health workforce: An overview of community health worker programmes in Afghanistan, Egypt and Pakistan. Folz, R., Ali, M.[2022]

Community health worker (CHW) interventions significantly increase screening mammography rates among women aged 40 and older, with a risk ratio of 1.06, indicating a positive impact on women's health.

The effectiveness of CHW programs is particularly strong in medical settings, urban areas, and when CHWs are matched with participants by race or ethnicity, suggesting that tailored approaches enhance the success of these interventions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Do community health worker interventions improve rates of screening mammography in the United States? A systematic review. Wells, KJ., Luque, JS., Miladinovic, B., et al.[2022]

A survey of 775 Community Health Workers (CHWs) in Brazil revealed that the COVID-19 pandemic has intensified challenges in their roles, particularly due to a rise in misinformation and denial about the virus, which hampers public health efforts.

The study highlights that the unique difficulties faced by CHWs in low-income communities during the pandemic have been largely overlooked in Brazilian health policies, suggesting a need for more tailored support and strategies for these essential workers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Community health workers' attitudes, practices and perceptions towards the COVID-19 pandemic in brazilian low-income communities. do Rosário Costa, N., Bellas, H., da Silva, PRF., et al.[2021]

References

1. Germany pubmed.ncbi.nlm.nih.gov

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence. [2020]

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

Case management for people with dementia living at home and their informal caregivers: A scoping review. [2022]

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

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia. [2018]

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

"We need a one-stop-shop": co-creating the model of care for a multidisciplinary memory clinic with community members, GPs, aged care workers, service providers, and policy-makers. [2023]

5. Ireland pubmed.ncbi.nlm.nih.gov

Best practices interventions to improve quality of care of people with dementia living at home. [2022]

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

Feasibility and validity of dementia assessment by trained community health workers based on Clinical Dementia Rating. [2021]

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

Role of Community Health Workers in Addressing Dementia: A Scoping Review and Global Perspective. [2022]

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

Development of a Framework to Describe Functions and Practice of Community Health Workers. [2021]

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

Evaluation of an asthma medication training program for immigrant Mexican community health workers. [2011]

10. Netherlands pubmed.ncbi.nlm.nih.gov

Identifying Medication Management Confidence and Gaps in Training Among Community Health Workers in the United States. [2020]

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

Community Health Workers' Role in Supporting Pediatric Asthma Management: A Review. [2022]

12. Egypt pubmed.ncbi.nlm.nih.gov

Task sharing in health workforce: An overview of community health worker programmes in Afghanistan, Egypt and Pakistan. [2022]

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

Do community health worker interventions improve rates of screening mammography in the United States? A systematic review. [2022]

14. Netherlands pubmed.ncbi.nlm.nih.gov

Community health workers' attitudes, practices and perceptions towards the COVID-19 pandemic in brazilian low-income communities. [2021]