40 Participants Needed

Decision Support for Dementia Caregivers

Recruiting at 3 trial locations
KH
KB
Overseen ByKalisha Bonds Johnson, PhD RN PMHNP
Age: 18+
Sex: Any
Trial Phase: Academic
Sponsor: Emory University
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

Trial Summary

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 data supports the effectiveness of the treatment Prototype Intervention, Culturally Tailored Decision-Making Program for dementia caregivers?

Research shows that shared decision-making, which involves patients, family members, and healthcare providers, is important for people with dementia and is preferred by caregivers. This approach helps ensure that the values and choices of those with dementia are respected, even as their cognitive abilities decline.12345

Is the Decision Support for Dementia Caregivers treatment safe for humans?

The research does not provide specific safety data for the Decision Support for Dementia Caregivers treatment, but a related study on a home safety toolkit for dementia caregivers showed improved caregiver outcomes and reduced risky behaviors and accidents for care receivers, suggesting a focus on safety.46789

How does the 'Decision Support for Dementia Caregivers' treatment differ from other treatments for dementia?

This treatment is unique because it focuses on supporting caregivers in making decisions for dementia patients, emphasizing shared decision-making and cultural considerations, rather than directly treating the patient's symptoms. It involves collaborative efforts among family members and healthcare providers to optimize care, which is different from traditional medical treatments that primarily target the patient's cognitive decline.2341011

What is the purpose of this trial?

The purpose of this study is to design and test a decision-making program that is tailored to support adult daughters making healthcare decisions for their parents who are living with memory loss to improve the quality of life of African American families.There are two phases of this research study. The first phase will collect information by surveys and/or interviews. The surveys and interviews will ask questions about demographics (e.g., age, race/ethnicity), culture, health, family dynamics, caregiving, and healthcare experiences. The surveys will be completed by all eligible adult daughters and parents with memory loss in pairs. The interviews will be completed by a smaller number of pairs and by all former adult daughter caregivers.The general scope of topics is caregiving experiences, cultural identity, healthcare decisions for persons living with Alzheimer's disease, and related dementias, health, and well-being. The research team will identify and examine key factors that will lead to designing and testing the feasibility of a culturally tailored prototype intervention for African American dementia dyads/families of persons living with mild to moderate Alzheimer's disease and related dementias.

Research Team

KB

Kalisha Bonds Johnson, PhD RN PMHNP

Principal Investigator

Emory University

Eligibility Criteria

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.
See 2 more

Exclusion Criteria

PLWD: any confounding significant neurologic diseases or major psychiatric disorder
Caregiver: none specified
Past caregiver: none specified
See 2 more

Timeline

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

Treatment Details

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.
Participant Groups
1Treatment groups
Experimental Treatment
Group I: Prototype InterventionExperimental Treatment1 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.

Find a Clinic Near You

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+

Findings from Research

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.
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]
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.
Shared decision-making in persons living with dementia: A scoping review.Mattos, MK., Gibson, JS., Wilson, D., et al.[2023]
The patient decision aid titled 'Fazendo escolhas: opรงรตes de alimentaรงรฃo para pacientes com demรชncia' 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.
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]

References

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia. [2019]
Shared decision-making in persons living with dementia: A scoping review. [2023]
Cross-cultural adaptation and content validity of the the patient decision aid "Making Choices: Feeding Options for Patients with Dementia" to Brazilian Portuguese language. [2022]
Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes. [2023]
Association between anticipatory grief and problem solving among family caregivers of persons with cognitive impairment. [2022]
Clinical trial of a home safety toolkit for Alzheimer's disease. [2021]
Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia. [2018]
An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study. [2020]
Communicating risk in dementia care: Survey of health and social care professionals. [2019]
Making care decisions in home-based dementia care: why context matters. [2022]
Decision-making within the social course of dementia: accounts by Chinese-American caregivers. [2022]
Unbiased ResultsWe believe in providing patients with all the options.
Your Data Stays Your DataWe only share your information with the clinical trials you're trying to access.
Verified Trials OnlyAll of our trials are run by licensed doctors, researchers, and healthcare companies.
Back to top
Terms of ServiceยทPrivacy PolicyยทCookiesยทSecurity