Decision Support for Dementia Caregivers

Recruiting at 4 trial locations

Overseen By Kalisha Bonds Johnson, PhD RN PMHNP

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Emory University

Disqualifiers: Parkinson's, Schizophrenia, others

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

Compensation: Varies

Number of Visits: 3

40 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to create and test a program to assist adult daughters in making healthcare decisions for parents with memory loss. It focuses on enhancing the quality of life for African American families dealing with Alzheimer's disease and related dementias. Participants will complete surveys and participate in interviews to explore caregiving experiences and cultural identity. The trial seeks African American daughters and their parents with mild to moderate dementia who are involved in healthcare decision-making. As an unphased trial, this study offers participants the chance to contribute to meaningful research that could improve support for families facing similar challenges.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications. It seems focused on decision-making support rather than medication changes.

What prior data suggests that this decision-making program is safe?

Research has shown that dementia programs, like the one in this study, are usually easy for people to use. For instance, a program called WECARE 2.0, designed for Chinese American caregivers, proved simple and accessible for all, regardless of reading level. This suggests that the program in this study is also safe and user-friendly.

Another study examined how dementia programs adapt to different cultures. It found that culturally tailored programs work well and do not cause major problems. Therefore, the program in this study, designed for African American families, is likely safe too.

In summary, these programs for dementia caregivers are generally safe and do not cause serious side effects. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the "Decision Support for Dementia Caregivers" intervention because it focuses on a culturally tailored approach, specifically designed for African-American adult daughters who often shoulder caregiving responsibilities. Unlike typical options that may not address the cultural context or family dynamics, this intervention provides tools for better communication, problem-solving, and navigating the healthcare system within their cultural framework. By integrating these elements, the intervention aims to enhance the caregiving experience and potentially improve outcomes for both caregivers and those living with dementia.

What evidence suggests that this decision-making program is effective for dementia caregivers?

Research shows that a new program, available to participants in this trial, is designed to assist African American families in making healthcare decisions for dementia care. Studies have found that culturally informed programs can enhance communication and problem-solving, particularly between adult daughters and their parents with memory issues. This program considers cultural identity and family relationships, which are crucial for effective caregiving. Evidence suggests that focusing on these areas can lead to better decisions and improved well-being for both caregivers and individuals with dementia. Overall, this approach holds promise for addressing the specific needs of African American families dealing with dementia. ^{2 6 7 8 9}

Who Is on the Research Team?

Kalisha Bonds Johnson, PhD RN PMHNP

Principal Investigator

Emory University

Are You a Good Fit for This Trial?

This trial is for African American adult daughters aiding their parents with mild to moderate Alzheimer's or dementia. Participants must be able to use email and the internet, speak English, and help with healthcare decisions. Excluded are those with major neurological diseases other than Alzheimer's or severe psychiatric disorders.

Inclusion Criteria

I am an African American caregiver, over 18, helping a loved one with daily tasks and care decisions, and I have internet and email access.

I am an African American, 50 or older, with mild to moderate dementia and can communicate in English.

I am a caregiver with experience in managing healthcare for a parent with dementia.

Exclusion Criteria

PLWD: any confounding significant neurologic diseases or major psychiatric disorder

Caregiver: none specified

Past caregiver: none specified

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

1 visit (virtual)

Phase 1: Data Collection

Surveys and semi-structured interviews are conducted with adult daughters and parents with memory loss, as well as past caregivers.

Varies per participant

Remote sessions via Zoom

Phase 2a: Prototype Development

Key informants participate in focus group sessions to develop the prototype intervention using design thinking strategies.

3 sessions, 1.5 hours each

Remote sessions via Zoom

Phase 2b: Intervention Testing

Pretest/posttest design with two follow-ups to test the prototype intervention with new dyad participants.

8 weeks

Surveys and interviews

Follow-up

Participants are monitored for retention and usability of the intervention.

3 months

2 follow-up surveys and 1 interview

What Are the Treatments Tested in This Trial?

Interventions

• Prototype Intervention

Trial Overview

The study aims to create a decision-making program tailored for African American families where daughters make healthcare choices for parents with memory loss. It involves surveys/interviews about caregiving experiences and testing a culturally specific prototype intervention.

How Is the Trial Designed?

Group I: Prototype Intervention Experimental Treatment 1 Intervention

The prototype intervention will be likely family-based and focused on issues of communication, problem-solving, health system literacy, and family systems, all considered in the context of the African-American (AA) adult daughter role and cultural identity.

Who Is Running the Clinical Trial?

Emory University

Lead Sponsor

Trials

1,735

Recruited

2,605,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Published Research Related to This Trial

A study involving 23 older adults with dementia and 27 family caregivers identified key features that can simplify patient decision aids, such as using clear language, pictograms, and personal stories to enhance understanding and navigation.

The revised decision aids are tailored to better meet the needs of dementia patients and their caregivers, potentially reducing the need for multiple evaluation-modification rounds in the future.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes. Bilodeau, G., Witteman, H., Légaré, F., et al.[2023]

The DecideGuide, an interactive web tool for dementia-care networks, was found to be user-friendly for case managers and most informal caregivers, although older users faced challenges with tablet use and the tool's interface needs simplification.

Participants reported that the DecideGuide enhanced their decision-making process by facilitating communication and structuring their thoughts, leading to increased involvement and information sharing among network members.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study. Span, M., Smits, C., Jukema, J., et al.[2020]

A survey of 270 health and social care professionals in Northern Ireland revealed that while 86% used numeric information in their practice, they rarely communicated risks using numbers, indicating a gap in effective risk communication in dementia care.

Participants often overestimated the likelihood of serious risks, such as falls and hospitalizations, by significant margins, highlighting the need for improved risk literacy and communication strategies among dementia care practitioners.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Communicating risk in dementia care: Survey of health and social care professionals. Taylor, BJ., Stevenson, M., McDowell, M.[2019]

The 'we DECide' educational intervention for nursing home staff aims to improve shared decision-making in advance care planning for residents with dementia, focusing on key moments such as admission and crisis situations.

This study, conducted in 19 nursing homes in Belgium, hypothesizes that better training will enhance the quality of end-of-life care and promote more person-centered approaches for residents with dementia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia. Ampe, S., Sevenants, A., Coppens, E., et al.[2019]

In a study of 73 family caregivers of older adults with cognitive impairment, 64% reported being involved in medical decision making, highlighting the significant role caregivers play in healthcare.

The analysis revealed that higher levels of anticipatory grief were linked to poorer problem-solving abilities, specifically leading to a negative orientation towards problems, which could negatively impact caregivers' decision-making in medical contexts.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Association between anticipatory grief and problem solving among family caregivers of persons with cognitive impairment. Fowler, NR., Hansen, AS., Barnato, AE., et al.[2022]

The patient decision aid titled 'Fazendo escolhas: opções de alimentação para pacientes com demência' was successfully adapted to Brazilian Portuguese, showing almost perfect comprehension among 30 caregivers during pretesting.

A panel of 35 Brazilian specialists validated the content of the decision aid, indicating it is appropriate for use in the Brazilian population, although further studies are needed to evaluate its impact on decision-making.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Cross-cultural adaptation and content validity of the the patient decision aid "Making Choices: Feeding Options for Patients with Dementia" to Brazilian Portuguese language. Derech, RD., Neves, FS.[2022]

This pilot study involved qualitative interviews with seven Chinese-American families caring for a relative with dementia, revealing that decision-making is a complex social process influenced by family dynamics and cultural factors.

The proposed model highlights the roles of various decision-makers, their relationships, and the impact of broader social and economic contexts, offering a more nuanced understanding of how families navigate care for chronic illnesses like dementia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Decision-making within the social course of dementia: accounts by Chinese-American caregivers. Hicks, MH., Lam, MS.[2022]

Older adults with cognitive impairment, including those living with dementia, can effectively communicate their values and preferences, highlighting the importance of shared decision-making involving patients, families, and healthcare providers.

The review identified 32 studies that emphasize the need for tailored decision-making approaches in healthcare, suggesting that shared decision-making is preferred and requires intentional effort, with a focus on health promotion and advanced care planning.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Shared decision-making in persons living with dementia: A scoping review. Mattos, MK., Gibson, JS., Wilson, D., et al.[2023]

The study involved 51 participants, including clients, family caregivers, and home care providers, and highlighted how the home care system influences decision-making for individuals with dementia, often sidelining family members.

Three key themes emerged: the system's focus on clinical competence, the pressure to make decisions quickly, and the exclusion of family members from the decision-making process, suggesting a need for more inclusive practices to improve care outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Making care decisions in home-based dementia care: why context matters. St-Amant, O., Ward-Griffin, C., DeForge, RT., et al.[2022]

The Home Safety Toolkit (HST) significantly improved caregiver competence in creating safer home environments for individuals with dementia, as evidenced by reduced caregiver strain and increased self-efficacy, with results showing statistical significance (P ≤ 0.001 for home safety and P = 0.002 for self-efficacy).

The intervention also led to a notable decrease in risky behaviors and accidents among care receivers, highlighting the effectiveness of the HST in enhancing safety for individuals with dementia living at home.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Clinical trial of a home safety toolkit for Alzheimer's disease. Horvath, KJ., Trudeau, SA., Rudolph, JL., et al.[2021]

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]

Citations

1.

pmc.ncbi.nlm.nih.gov

pmc.ncbi.nlm.nih.gov/articles/PMC11906994/

Development and evaluation of a healthcare decision ...

The purpose of this study was to develop a structured culturally responsive prototype intervention that will improve the healthcare decision-making self- ...

2.

trialsjournal.biomedcentral.com

trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2697-1

Tailoring and evaluating an intervention to improve shared ...

These data will allow us to evaluate whether the intervention changes clinicians' perceptions of being able to adopt shared decision-making ...

3.

researchgate.net

researchgate.net/publication/389841226_Development_and_evaluation_of_a_healthcare_decision-making_intervention_for_African_American_parent-adult_daughter_dementia_dyads_a_mixed-methods_study_protocol

(PDF) Development and evaluation of a healthcare ...

The purpose of this study was to develop a structured culturally responsive prototype intervention that will improve the healthcare decision- ...

4.

reporter.nih.gov

reporter.nih.gov/project-details/10897947

Project Details - NIH RePORTER

This project seeks to identify key factors associated with the formal care decision-making process for African American persons living with ADRD and to improve ...

5.

jamanetwork.com

jamanetwork.com/journals/jama/fullarticle/2829720

Health System, Community-Based, or Usual Dementia ...

In this randomized clinical trial of dementia care programs, there were no significant differences between a health system–based vs a community-based care ...

6.

publichealth.gmu.edu

publichealth.gmu.edu/news/2025-10/new-program-reduces-burnout-dementia-caregivers-novel-research-evaluation-proves

New program reduces burnout in dementia caregivers, novel ...

WECARE 2.0, a digitally delivered health promotion program for Chinese American dementia caregivers, is easy to use for all literacy levels ...

7.

mdpi.com

mdpi.com/2673-9259/5/4/46

Cultural Adaptations of Evidence-Based Interventions in ...

This review critically evaluated how dementia-related interventions have been culturally adapted and assessed the extent to which these adaptations align with ...

8.

sciencedirect.com

sciencedirect.com/science/article/pii/S0883941724000633

Effectiveness of a health education program for people with ...

This study assesses the effectiveness of a health education program on caregiving outcomes for people with dementia and their families.

9.

alz-journals.onlinelibrary.wiley.com

alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.70636

Supporting decision making for individuals living with ...

An intervention to maximize medication management by caregivers of persons with memory loss: Intervention overview and two-month outcomes.