Summary

Eligibility
for people ages 18 years and up (full criteria)
Healthy Volunteers
healthy people welcome
Location
at UCSF
Dates
study started
estimated completion
Principal Investigator
Veronica Yank, MD (ucsf)
Photo of Veronica Yank
Veronica Yank

Description

Summary

These caregivers are a vulnerable group due to their physical isolation and well-documented rural disparities in 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: 320 in the intervention (workshop) group and 320 in the attention control group. Caregivers will be recruited throughout the United States. Primary outcomes will be caregiver stress and depression symptoms. The investigators hypothesize that stress scores and depression 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).

Official Title

Evaluating the Effectiveness of an Online Small-Group Self-Management Workshop for Rural Caregivers of Individuals With Alzheimer's Disease and Related Dementias

Keywords

Depression Stress, Psychological Self Efficacy Loneliness Social Isolation Health Care Utilization Dementia Dementia Alzheimers Dementia of Alzheimer Type Dementia, Vascular Dementia Frontal Dementia, Lewy Body Dementia, Mixed Dementia in Parkinsons Disease Dementia, HIV Dementia Frontotemporal Dementia, Multi-Infarct Caregiver Caregiving Parkinson Disease Alzheimer Disease Lewy Body Disease CADASIL Aphasia, Primary Progressive Pick Disease of the Brain Frontotemporal Dementia Building Better Caregivers Workshop

Eligibility

You can join if…

Open to people ages 18 years and up

  • 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)

You CAN'T join if...

  • Have an anticipated inability to complete the 12-month follow-up (e.g., planned travel)
  • Care partner living in a skilled nursing or similar facility

Location

  • University of California, San Francisco accepting new patients
    San Francisco California 94118 United States

Lead Scientist at UC Health

  • Veronica Yank, MD (ucsf)
    My research focuses on the development, assessment, and implementation of best practice care for preventing and managing chronic conditions treated in primary care settings, particularly those associated with elevated cardiovascular disease risk or heavy family caregiver burden.

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
University of California, San Francisco
ID
NCT04428112
Study Type
Interventional
Last Updated