Caregiver Coaching for Dementia

(CuRB-IT Trial)

Overseen by Rita A Jablonski, PhD

Age: 18+

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Recruiting

Sponsor: University of Alabama at Birmingham

Disqualifiers: Non-English speakers, No smartphone/internet

No Placebo Group

Trial Summary

What is the purpose of this trial?

This trial tests an online training program called CuRB-IT, which helps family caregivers of people with dementia manage difficult behaviors. The program aims to boost caregivers' confidence and provide practical coping methods, making caregiving less stressful.

Will I have to stop taking my current medications?

The trial information does not specify whether participants need to stop taking their current medications.

What data supports the effectiveness of the treatment CuRB-IT for dementia caregivers?

Research shows that coaching for dementia caregivers, like CuRB-IT, can improve caregiver communication, reduce stress, and help manage care-resistant behaviors. Similar programs have shown improvements in caregiver mental health and reduced strain, suggesting that CuRB-IT may also be effective. ^{1 2 3 4 5}

Is caregiver coaching for dementia safe for humans?

The available research on caregiver coaching for dementia, including programs like CuRB-IT, focuses on improving caregiver strategies and mental health without reporting any safety concerns, suggesting it is generally safe for participants. ^{1 3 4 6 7}

How is the CuRB-IT treatment for dementia caregivers different from other treatments?

CuRB-IT is unique because it involves personalized online coaching sessions for family caregivers, focusing on education, communication, and individualized strategies to manage care-resistant behaviors in dementia patients. This approach emphasizes person-centered care and relationship-building, unlike traditional treatments that may not address the caregiver's role in managing resistance to care. ^{1 8 9 10 11}

Research Team

Rita A Jablonski, PhD

Principal Investigator

University of Alabama at Birmingham

Eligibility Criteria

This trial is for family caregivers over 18 years old who help a relative with mild cognitive impairment or dementia and face resistance when providing care. Caregivers must speak/read English, have internet access, and share living or cooking space with the care recipient.

Inclusion Criteria

I am over 18, care for a family member aged 60+ without pay, and we live together or share a kitchen.

Care recipient has mild cognitive impairment or dementia as identified using the Quick Dementia Rating System instrument

I refuse or struggle to accept help with daily tasks.

Exclusion Criteria

I cannot speak or read English.

Persons who do not have reliable access to a smart phone or internet

Trial Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Baseline Assessment

Participants complete baseline surveys and 3 weeks of daily diaries

3 weeks

1 visit (in-person or virtual)

Immediate Intervention

Immediate intervention group receives 12 weeks of CuRB-IT and completes 3 rounds of 3-week daily diaries with intermittent surveys

12 weeks

Delayed Intervention

Delayed intervention group receives 12 weeks of attention, completes 1 round of 3-week daily diaries and 1 intermittent survey, then receives 12 weeks of CuRB-IT and completes 2 rounds of 3-week daily diaries with intermittent surveys

24 weeks

Follow-up

Participants are monitored for intervention decay and performance at 3- and 6-months post intervention

6 months

Treatment Details

Interventions

• CuRB-IT (Behavioral Intervention)

Trial Overview The study tests CuRB-IT, an intervention for caregivers dealing with care-resistant behavior in dementia patients. Participants are split into two groups: one starts CuRB-IT immediately and the other after a delay, both completing surveys and diaries to track progress.

Participant Groups

Group I: Immediate Intervention Experimental Treatment 1 Intervention

Complete baseline survey, complete 3 weeks of daily diaries and intermittent survey, receive 12 weeks of CurB-IT, then complete 3 rounds of 21-day daily diaries and intermittent surveys while receiving attention during the 12-week intervals between daily diaries.

Group II: Delayed intervention Active Control 1 Intervention

Complete baseline survey, complete 3 weeks of daily diaries, receive 12 weeks of attention, complete 3 weeks of daily diaries and 1 intermittent survey, receive 12 weeks of CurB-IT, then complete 2 rounds of 21-day daily diaries and intermittent surveys while receiving attention during the 12-week intervals between daily diaries.

Who Is Running the Clinical Trial?

University of Alabama at Birmingham

Lead Sponsor

Trials

1,677

Recruited

2,458,000+

Kierstin Kennedy

University of Alabama at Birmingham

Chief Medical Officer since 2022

MD

S. Dawn Bulgarella

University of Alabama at Birmingham

Chief Executive Officer since 2023

BSc in Commerce and Business Administration from the University of Alabama, MS in Health Administration from the University of Alabama at Birmingham

Findings from Research

A study involving 26 family caregivers of persons with dementia revealed that six weekly online coaching sessions effectively addressed resistance to care behaviors (RCBs) through education, communication strategies, and individualized approaches.

The coaching sessions emphasized person-centered practices, helping caregivers understand the reasons behind RCBs, develop effective communication scripts, and affirm their caregiving efforts, ultimately enhancing their ability to manage care challenges.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Description of Process and Content of Online Dementia Coaching for Family Caregivers of Persons with Dementia. Jablonski, RA., Winstead, V., Geldmacher, DS.[2020]

Over 200 dementia caregiver interventions have been proven effective in randomized clinical trials, but very few have been adapted for real-world use, leaving many of the 15+ million dementia family caregivers in the U.S. without access to these resources.

The article highlights the need for a translational phase to implement these interventions effectively, addressing challenges such as funding, payment structures, and gaps in evidence to ensure caregivers receive the support they need.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps. Gitlin, LN., Marx, K., Stanley, IH., et al.[2022]

The Kansas City implementation of the Reducing Disability in Alzheimer's Disease (RDAD) intervention showed significant improvements in both mental health and physical activity for 66 caregiver-receiver dyads with moderate dementia, with behavioral symptom severity decreasing from 11.3 to 8.6 and physical activity increasing from 125 to 190 minutes per week.

Caregivers also reported reduced unmet needs and lower levels of distress and strain, indicating that the RDAD intervention not only benefits individuals with dementia but also supports their caregivers, suggesting potential for broader application in community settings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effectiveness of "Reducing Disability in Alzheimer's Disease" Among Dyads With Moderate Dementia. Perales-Puchalt, J., Barton, K., Ptomey, L., et al.[2022]

The UCLA Alzheimer's and Dementia Care program showed overall improvements in behavioral and depressive symptoms for persons living with dementia and their caregivers after one year, despite disease progression.

A mixed-methods study identified seven areas for improvement in the program, highlighting that while some caregivers felt they did not benefit clinically, 85% still found the program very or extremely beneficial due to the supportive relationship with dementia care experts.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Caregiver outcomes of a dementia care program. Evertson, LC., Jennings, LA., Reuben, DB., et al.[2022]

The dyadic intervention combining mindfulness-based stress reduction (MBSR) for caregivers and balance and progressive resistance training (PRT) for their loved ones significantly improved caregiver mindfulness and functional mobility in the loved ones, indicating potential benefits for both parties involved.

Despite these improvements, the intervention did not significantly reduce caregiver burden, suggesting that while mindfulness training is beneficial, additional strategies may be needed to address the challenges faced by caregivers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Caring for Informal Dementia Caregivers and Their Loved Ones Via the HOMeCARE Exercise and Mindfulness for Health Program (HOMeCARE): A Randomized, Single-Blind, Controlled Trial. Lang, T., Daniel, K., Inskip, M., et al.[2023]

Caregivers, including those caring for individuals with dementia, are more likely to be overweight or obese and to smoke compared to non-caregivers, indicating a potential risk for health issues.

Interestingly, caregivers reported lower rates of binge drinking and insufficient physical activity, suggesting that caregiving may lead to both risky and health-promoting behaviors, although the overall effects are relatively modest.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The association between informal caregiving and behavioral risk factors: a cross-sectional study. Gottschalk, S., König, HH., Brettschneider, C.[2021]

Task-centered behaviors, particularly 'physically controlling' actions by care providers, significantly increased resistiveness to care (RTC) among persons living with dementia during oral care.

In contrast, person-centered behaviors like 'assessing comfort' decreased RTC, suggesting that prioritizing the comfort and needs of individuals with dementia can lead to more effective and less resistive care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Behaviors of care providers and resistiveness to oral care of persons living with dementia. Kim, B., Lee, KH., Cho, E., et al.[2021]

Caregiver behaviors, including physical actions and verbal instructions, significantly influence the likelihood of resistiveness to care (RTC) in nursing home residents with dementia, with the relationship depending on the resident's prior behavior.

Positive instructions can encourage collaboration in residents with preserved language abilities, but may lead to RTC in those with severe language impairments, highlighting the importance of tailoring caregiver approaches to individual resident needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Impact of caregivers' behaviors on resistiveness to care and collaboration in persons with dementia in the context of hygienic care: an interactional perspective. Belzil, G., Vézina, J.[2016]

The 'Partners in Dementia Care' (PDC) program, implemented over 12 months with 148 caregivers and 84 persons with dementia, showed significant improvements in outcomes for both groups, including reduced caregiver isolation and increased confidence in caregiving.

The positive results of the PDC program in real-world settings were consistent with previous randomized controlled trials, demonstrating its effectiveness as a regular service for supporting caregivers and persons with dementia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Findings From a Real-World Translation Study of the Evidence-Based "Partners in Dementia Care". Bass, DM., Hornick, T., Kunik, M., et al.[2022]

Resistance-to-care behaviors are common among nursing home residents with dementia, affecting about 9% of residents, and can lead to serious health issues for both residents and caregivers, including malnutrition and emotional distress.

Effective interventions to manage these behaviors during personal care activities are crucial, as they can help reduce the frequency and intensity of resistance, ultimately improving care quality and safety for both residents and caregivers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The best evidence for minimizing resistance-to-care during assisted personal care for older adults with dementia in nursing homes: a systematic review. Konno, R., Kang, HS., Makimoto, K.[2022]

References

1. Switzerland pubmed.ncbi.nlm.nih.gov

Description of Process and Content of Online Dementia Coaching for Family Caregivers of Persons with Dementia. [2020]

2. 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]

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

Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps. [2022]

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

Effectiveness of "Reducing Disability in Alzheimer's Disease" Among Dyads With Moderate Dementia. [2022]

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

Caregiver outcomes of a dementia care program. [2022]

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

Caring for Informal Dementia Caregivers and Their Loved Ones Via the HOMeCARE Exercise and Mindfulness for Health Program (HOMeCARE): A Randomized, Single-Blind, Controlled Trial. [2023]

7. Switzerland pubmed.ncbi.nlm.nih.gov

The association between informal caregiving and behavioral risk factors: a cross-sectional study. [2021]

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

Behaviors of care providers and resistiveness to oral care of persons living with dementia. [2021]

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

Impact of caregivers' behaviors on resistiveness to care and collaboration in persons with dementia in the context of hygienic care: an interactional perspective. [2016]

10. England pubmed.ncbi.nlm.nih.gov

Findings From a Real-World Translation Study of the Evidence-Based "Partners in Dementia Care". [2022]

11. Australia pubmed.ncbi.nlm.nih.gov

The best evidence for minimizing resistance-to-care during assisted personal care for older adults with dementia in nursing homes: a systematic review. [2022]