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Rural Dementia Caregiver Project

University of California San Francisco (UCSF) logo

University of California San Francisco (UCSF)

Status

Completed

Conditions

Self Efficacy
Dementia of Alzheimer Type
Dementia Frontotemporal
Loneliness
Dementia, Vascular
Health Care Utilization
Stress, Psychological
Dementia in Parkinsons Disease
Social Isolation
Dementia, Mixed
Dementia, HIV
Dementia Frontal
Dementia Alzheimers
Depression
Dementia
Dementia, Multi-Infarct
Dementia, Lewy Body

Treatments

Behavioral: Attention Control
Behavioral: Building Better Caregivers Workshop

Study type

Interventional

Funder types

Other
NIH

Identifiers

NCT04428112
5R01AG057855-02 (U.S. NIH Grant/Contract)
18-25814
3R01AG057855-02S1 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

Rural caregivers face challenges of geographic isolation and lower health care access and quality. Many rural dementia caregivers experience serious health consequences due to caregiving responsibilities that can limit their ability to maintain their caregiving role. Thus, there is a pressing need for effective, scalable, and accessible programs to support rural dementia caregivers.

Online programs offer a convenient and readily translatable option for program delivery because they can be accessed by caregivers in the home and at the convenience of the user. Building Better Caregivers is an online 6-week, interactive, small-group self-management, social support, and skills-building workshop developed for caregivers of individuals with Alzheimer's disease or related dementia.

The investigators will conduct a hybrid effectiveness-implementation randomized controlled trial that will enroll and randomize 640 rural dementia caregivers into two groups: the intervention (workshop) group and the attention control group. Caregivers will be recruited throughout the United States. Primary outcomes will be caregiver stress and depressive symptoms. The investigators hypothesize that stress scores and depressive symptoms will be significantly improved at 12 months in the intervention group versus control group. The investigators will also identify key strengths (facilitators) and weaknesses (barriers) of workshop implementation. The investigators will use the RE-AIM implementation framework and a mixed methods approach to identify implementation characteristics pertinent to both caregivers and rural community organizations.

If the Building Better Caregivers workshop is proven to be effective, this research has the potential to open new research horizons, particularly on how to reach and effectively support isolated dementia caregivers in rural areas with an intervention that is scalable, even in low-resourced settings. If the workshop can achieve its goals with rural dementia caregivers, some of those most isolated, it would also be expected to be scalable in other low-resourced settings (e.g., in urban or suburban environments).

Enrollment

418 patients

Sex

All

Ages

18+ years old

Volunteers

Accepts Healthy Volunteers

Inclusion criteria

  • Aged 18 years or older
  • Caring for person with dementia
  • Able to read and write in English
  • Able to access the internet
  • Providing care for ≥ 10 hours per week
  • Reporting a minimum stress level of 4 or more on a 10-point scale
  • Living in rural area of United States (self-identify or zip code is a Rural Urban Commuting Area Codes (RUCA) defined rural area)

Exclusion criteria

  • Have an anticipated inability to complete the 12-month follow-up (e.g., planned travel)

Trial design

Primary purpose

Supportive Care

Allocation

Randomized

Interventional model

Parallel Assignment

Masking

Double Blind

418 participants in 2 patient groups

Building Better Caregivers Workshop Group
Experimental group
Description:
Building Better Caregivers Workshop is a 6-week online self-management and skills building workshop. Participants receive the online workshop as soon as possible after randomization.
Treatment:
Behavioral: Building Better Caregivers Workshop
Attention Control Group
Active Comparator group
Description:
Participants will be offered the online workshop after the 12 month trial is completed if they so desire.
Treatment:
Behavioral: Attention Control

Trial documents
3

Trial contacts and locations

1

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Data sourced from clinicaltrials.gov

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