Among 13 million informal caregivers of individuals with Alzheimer's disease or related dementias, an estimated 1.4 million live in rural areas of the US. 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 an pressing need for effective, scalable, and accessible programs to support rural dementia caregivers so that they can sustain their own well-being and effective caregiving within the home environments of their loved ones. Online programs offer a convenient and readily translatable option for program delivery because they can be accessed by caregivers in the home environment 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 forms of dementia. In our evaluations of the program in non-randomized studies, caregivers experienced significant improvements in stress, depression symptoms, and self-efficacy and partners experienced improved well-being. Building on these encouraging preliminary findings, we now propose to 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 through 19 community organizations (serving rural communities in 17 states). Primary outcomes will be caregiver stress and depression symptoms. We hypothesize that stress scores and depression symptoms will be significantly improved at 12 months in the intervention group versus control group. We will also identify key strengths (facilitators) and weaknesses (barriers) of workshop implementation. We 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).

Public Health Relevance

Approximately 13 million informal, mostly unpaid caregivers (?caregivers?) provide critical support to US adults living with Alzheimer's disease and related dementias, enabling them the remain in their homes and communities. But many dementia caregivers experience serious health consequences due to these responsibilities, including caregivers who live in rural settings where resources and support may be difficult to access. The proposed project will determine whether a 6-week online self-management and skills-building workshop called Building Better Caregivers improves the well-being of isolated dementia caregivers who live in rural settings and also whether the workshop has the potential to be widely disseminated to such caregivers throughout rural America.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Fazio, Elena
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University of California San Francisco
Internal Medicine/Medicine
Schools of Medicine
San Francisco
United States
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