Online Workshop for Family Caregivers of People with Dementia

Not currently recruiting at 1 trial location

Overseen By Elizabeth López Macias, MPH

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of California, San Francisco

Disqualifiers: Investigator discretion, others

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

Compensation: Varies

Number of Visits: 2

Duration: 6 weeks

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to assist family caregivers of people living with dementia by offering an online workshop called the Building Better Caregivers workshop, which teaches caregiving skills and stress management. The goal is to determine if this workshop can improve caregivers' well-being and reduce stress, ultimately leading to better care for their loved ones with dementia. Researchers will compare caregivers participating in the workshop with those on a wait-list. The trial seeks caregivers who look after someone with dementia, receive their own healthcare from participating systems like UCSF or Bassett, and have internet access. As an unphased trial, this study provides caregivers the opportunity to enhance their skills and well-being through innovative online support.

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 providing support and education for caregivers, so it's unlikely that medication changes are required.

What prior data suggests that this workshop is safe for caregivers?

Research has shown that the Building Better Caregivers workshop is generally safe for participants. Although specific safety data for this online workshop is unavailable, studies on similar programs have not reported any negative effects.

The workshop is educational, helping caregivers learn skills to better manage stress and emotions. Its online format allows participants to engage with the material at their own pace and in their own space, minimizing any risk of physical harm.

Overall, the workshop's emphasis on reducing stress and providing support makes it a safe choice for caregivers seeking assistance with their responsibilities. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Building Better Caregivers workshop because it offers a fresh approach to supporting family caregivers of people with dementia. Unlike traditional support groups or medication-focused interventions, this is a 6-week, online, peer-led workshop that empowers caregivers by connecting them with others in similar situations. This format not only provides emotional support but also practical strategies for caregiving, all from the comfort of home. The online delivery makes it accessible and convenient, potentially reaching a wider audience than in-person programs.

What evidence suggests that the Building Better Caregivers workshop is effective for caregivers of people with dementia?

Studies have shown that the Building Better Caregivers workshop, available to participants in this trial, can reduce the stress and depression caregivers often face. Participants reported feeling less tired and healthier overall. The workshop teaches skills for managing tough emotions and stress, common challenges for caregivers. Research also suggests that caregivers feel more supported and better prepared for their role after completing the workshop. Overall, the workshop effectively helps caregivers improve their well-being while caring for loved ones with dementia. ^{2 4 6 7 8}

Who Is on the Research Team?

Veronica Yank, MD

Principal Investigator

University of California, San Francisco

Are You a Good Fit for This Trial?

This trial is for family caregivers of persons living with dementia (PLWD) who are experiencing stress or depression. Participants must be receiving health care in urban California or rural New York and willing to engage in an online workshop.

Inclusion Criteria

Race/ethnicity: any race/ethnicity

Able to read and write in English

My gender or sex does not limit my participation.

Exclusion Criteria

Investigator discretion for clinical safety or protocol adherence reasons, e.g., potential participant who might not be able to meet the time requirements of the study (anticipating a move)

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants engage in a 6-week, online, peer-led small group workshop designed for family caregivers of persons living with dementia

6 weeks

Asynchronous online participation, 2-3 logins per week

Follow-up

Participants are monitored for safety and effectiveness after treatment, including completion of caregiver depressive symptoms survey

4 months

Wait-list Control

Participants in the wait-list control group are offered the workshop after their 3-month trial participation is completed

3 months

What Are the Treatments Tested in This Trial?

Interventions

• Building Better Caregivers workshop

Trial Overview The 'Building Better Caregivers' workshop, a 6-week online program designed to teach caregiving skills, manage emotions and stress, is being tested. It includes support from facilitators and peers, using materials that can be accessed anytime.

How Is the Trial Designed?

Group I: Workshop Experimental Treatment 1 Intervention

A 6-week, online, peer-led small group workshop designed for family caregivers of persons living with dementia.

Group II: Control Active Control 1 Intervention

Wait-list control group.

Who Is Running the Clinical Trial?

University of California, San Francisco

Lead Sponsor

Trials

2,636

Recruited

19,080,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Published Research Related to This Trial

Family caregivers who are also trained nurses actively monitor and identify risks in the care of their loved ones, using their professional expertise to enhance safety.

These nurse caregivers face a dilemma when deciding whether to intervene in care situations, weighing the potential benefits and drawbacks of their actions, which can affect their willingness to disclose their professional background.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

“Watchful? For sure!” – Health professionals as family carers and their roles in patient safety Jähnke, A., Liebert, Y., Käppeli, A., et al.[2019]

After high-reliability training, caregivers did not significantly increase the overall number of event reports, but there was a notable decrease in clinical process error reports, indicating a potential improvement in identifying and addressing specific types of safety issues.

The study found differences in reporting patterns between day and night shifts, suggesting that factors beyond training may influence caregivers' willingness to report safety events, highlighting the need for further research into motivators for reporting.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluating the Use of High-Reliability Principles to Increase Error Event Reporting: A Retrospective Review. Duffey, P., Oliver, JS., Newcomb, P.[2019]

The psychoeducational program 'Living together with dementia' significantly reduced the burden experienced by family caregivers of people with dementia, based on a quasi-experimental study involving 15 participants.

The study included pretest and posttest assessments with a follow-up period of 4 months, suggesting that the program could be an effective training tool for caregivers in managing dementia-related challenges.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

"Living Together with Dementia"-A psychoeducational group programme for family caregivers. Sousa, L., Sequeira, C., Ferré-Grau, C., et al.[2022]

A systematic review of 19 studies found that online dementia training programs significantly improve the preparedness and condition of both formal and informal caregivers, addressing the growing need for skilled dementia care as Alzheimer's disease rates rise.

Future research should focus on enhancing study designs by incorporating multiple time points, control groups, and personalized, interactive content to better evaluate the effectiveness of these online training programs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effectiveness of online dementia caregivers training programs: A systematic review. Pleasant, M., Molinari, V., Dobbs, D., et al.[2021]

The consensus conference developed key recommendations for improving the disclosure of adverse events to patients and their families, emphasizing the need for institutional policies and guidelines.

Training healthcare professionals in communication skills and patient safety is crucial, along with creating supportive strategies for those involved in adverse events, to foster a culture of transparency and trust in healthcare.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Consensus conference on providing information of adverse events to patients and relatives]. Martín-Delgado, MC., Fernández-Maillo, M., Bañeres-Amella, J., et al.[2015]

Internet interventions can improve the well-being of informal caregivers for dementia patients, enhancing aspects like confidence, depression, and self-efficacy, especially when tailored to individual needs and including multiple components.

Despite showing potential benefits, the overall quality of evidence from the studies is low, indicating a need for more rigorous randomized controlled trials to better assess the effectiveness of these interventions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. Boots, LM., de Vugt, ME., van Knippenberg, RJ., et al.[2022]

The Minnesota Family Workshop, consisting of seven weekly sessions, effectively reduced caregiver burden for families of dementia patients by providing education, support, and skills training.

The program's design encouraged family involvement by requiring primary caregivers to bring at least one other family member, enhancing the support network for both caregivers and patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Training family caregivers of patients with dementia. A structured workshop approach. Ostwald, SK., Hepburn, KW., Burns, T.[2019]

A one-day training program significantly improved confidence in dementia care management for over 50% of family caregivers on 11 out of 12 confidence items, with notable improvements in 4 specific areas.

The training, which included interactive elements and real-world case discussions using the DICE approach, was particularly effective for family caregivers, who showed greater confidence gains compared to professional caregivers in 6 out of 12 items.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Moving Evidence-Informed Assessment and Management of Behavioral and Psychological Symptoms of Dementia into the Real World: Training Family and Staff Caregivers in the DICE Approach. Kales, HC., Kern, V., Kim, HM., et al.[2021]

In a study involving 43 caregiver and person-with-dementia dyads, active psychoeducational interventions significantly improved caregivers' skills and reduced their burden compared to passive interventions, as measured by various assessment tools.

The active intervention led to better outcomes in caregiver competence and distress levels after just three months, highlighting the effectiveness of engaging methods like role-play and problem-solving in caregiver training.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Caregiver active participation in psychoeducational intervention improved caregiving skills and competency. Tang, SH., Chio, OI., Chang, LH., et al.[2019]

A systematic review of 130 studies on muscle strengthening training (MST) in youth revealed that only 33.8% reported on adverse events (AEs), highlighting a significant gap in safety monitoring during these interventions.

Among the studies that did report AEs, 40.1% documented at least one adverse event, with over half of the reported events (59.1%) linked directly to the training or testing, indicating a need for better definitions and reporting practices in future research.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Reporting of Adverse Events in Muscle Strengthening Interventions in Youth: A Systematic Review. Mack, DE., Anzovino, D., Sanderson, M., et al.[2023]

Citations

1. sciencedirect.com sciencedirect.com/science/article/pii/S1551714422002294

Study protocol for a hybrid effectiveness-implementation ... This research aims to assess the effectiveness and implementation of the BBC workshop when delivered among rural dementia caregivers in the United States.

2. clinicaltrials.gov clinicaltrials.gov/study/NCT06928467

Primary Care-based Study of an Online Workshop for ... The overarching goal of this project is to improve education and support for family caregivers of persons living with dementia so that they can take better care ...

3. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC6746242/

Building Better Caregivers: A Pragmatic 12-Month Trial of a ... Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, ...

4. ssrn.com ssrn.com/abstract=4148233

Study Protocol for a Hybrid Effectiveness-Implementation ... Building Better Caregivers (BBC), a possible solution, is an asynchronous online 6-week, interactive, and skills-building workshop developed for ...

5. researchgate.net researchgate.net/publication/321079056_Building_Better_Caregivers_A_Pragmatic_12-Month_Trial_of_a_Community-Based_Workshop_for_Caregivers_of_Cognitively_Impaired_Adults

Building Better Caregivers: A Pragmatic 12-Month Trial of a ... Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC10292579/

Study protocol for a hybrid effectiveness-implementation trial ... This research aims to assess the effectiveness and implementation of the BBC workshop when delivered among rural dementia caregivers in the United States.

7. trialfinder.panfoundation.org trialfinder.panfoundation.org/en-US/trial/listing/592358

Primary Care-based Study of an Online Workshop for ... Building Better Caregivers workshop is an online, 6-week, small group workshop for family caregivers of persons living with dementia that ...

8. withpower.com withpower.com/trial/phase-family-caregivers-2-2025-4f39a

Online Workshop for Family Caregivers of People with ... The research articles reviewed do not provide specific safety data for the Online Workshop for Family Caregivers of People with Dementia or similar programs ...