Decision Support for Dementia Caregivers

Recruiting at 3 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

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. ^{1 2 3 4 5}

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. ^{4 6 7 8 9}

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. ^{2 3 4 10 11}

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

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.

Exclusion Criteria

PLWD: any confounding significant neurologic diseases or major psychiatric disorder

Caregiver: none specified

Past caregiver: none specified

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

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+

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.

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]

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 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]

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]

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 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]

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 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]

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]

References

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

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia. [2019]

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

Shared decision-making in persons living with dementia: A scoping review. [2023]

3. Brazil 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. [2022]

4. England 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. [2023]

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

Association between anticipatory grief and problem solving among family caregivers of persons with cognitive impairment. [2022]

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

Clinical trial of a home safety toolkit for Alzheimer's disease. [2021]

7. 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]

8. Switzerland pubmed.ncbi.nlm.nih.gov

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study. [2020]

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

Communicating risk in dementia care: Survey of health and social care professionals. [2019]

10. Canada pubmed.ncbi.nlm.nih.gov

Making care decisions in home-based dementia care: why context matters. [2022]

11. Netherlands pubmed.ncbi.nlm.nih.gov

Decision-making within the social course of dementia: accounts by Chinese-American caregivers. [2022]