CommunityRx-Dementia + Peer Navigation (CRxDpeer)

In 2022, more than 11 million Americans, half of whom were 50 or older, provided more than 18 billion hours of unpaid care for people with dementia. Many caregivers have no formal training and limited support. The White House, along with the Alzheimer's Association, the National Institute on Aging and others, is calling for urgent attention to the health and well-being of the fast-growing population of dementia caregivers, with heightened concern for caregivers living in historically marginalized communities. Scalable, evidence-based, solutions leveraging existing assets are urgently needed to meaningfully reach all caregivers. Our approach to addressing these unmet needs, CommunityRxDpeer, is an information technology-based, low-intensity, health system-initiated community resource navigation intervention delivered to caregivers by peer caregiver navigators remotely over time. Essential components include education about common social, including caregiving needs, activation of personalized community resource information and ongoing navigation-focused support. The CRxDpeer intervention components are informed by evidence-based "processes" identified in the Grey et al. Self- and Family Management Framework that are known to promote desirable health outcomes among people living or caring for others with chronic health conditions, including dementia. Prior CommunityRx trials have successfully deployed community members, clinicians and researchers to deliver the intervention in real-world and research settings with positive outcomes in a wide-range of populations. In this pragmatic trial, experienced and willing dementia caregivers from the CRxDementia cohort (2020-24) will be recruited and trained as peer navigators to deliver CRxDpeer. Using a hybrid effectiveness implementation design with a double-blind RCT, we will evaluate the effectiveness of CRxDpeer versus usual care on caregiver health and well-being, healthcare utilization and social care outcomes. In parallel, we will evaluate the adoption, fidelity and cost of CRxDpeer and, using mixed methods, characterize perceived mechanisms of impact on caregivers delivering and receiving CRxDpeer. The specific objectives are to demonstrate that CRxDpeer can be delivered in the real world with fidelity and to assess the effectiveness of this approach on important outcomes. Resource referral and peer support IT platforms deployed for intervention delivery are already in commercial use, paving a viable path to replication and scale as a stand-alone or adjunct to other caregiver interventions, like the Center for Medicare \& Medicaid Guiding an Improved Dementia Experience (GUIDE) Model test, which aims to enable people with dementia to age at home by supporting family caregivers with education and resources. CRxDpeer has the potential to improve the health and well-being of millions of dementia caregivers and their care recipients by meaningfully connecting them to vital social and caregiving resources and creating opportunity for willing and experienced caregivers to support with others.

• CommunityRx-Dpeer (Other), also known as CRxDpeer: Essential components of the CRxDpeer intervention include: (1) focused education about common social (e.g. food, housing, transportation) and, specifically, caregiving needs (e.g. caregiver education, stress management, End of Life/Advance Care Planning (EOL/ACP)) and related resources, (2) activation of community resources through delivery of and coaching on use of a personalized local referral list (a "HealtheRx") and (3) boosting through a series of automated proactive text messages and ongoing resource navigational support by text/phone/email/video for utilizing resources. This intervention will be delivered by a peer mentor who is experienced in dementia caregiving and trained to provide 1:1 peer mentorship and resource navigation to dementia caregivers.

Primary outcomes

• Caregiver loneliness at 6 months [6 months]: Loneliness is measured using the 3-item UCLA Loneliness Scale (Hughes et al. 2004). Responses to each of the items are scored 1= "Hardly ever", 2= "Some of the time", or 3= "Often". A total score is generated by summing the individual items, with a possible range of 3-9 and higher scores = greater loneliness.
• Caregiver's self-efficacy for finding end of life/advance care planning resources for the person with dementia at 12 months [12 months]: Self-efficacy is measured using a single item question developed for this study: "How confident are you that you can find resources to help \[name of care recipient\] put into writing their medical wishes if they were very sick or near the end of their life?". Responses are measured on a 4-point scale of 1="Not at all confident", 2="Not very confident", 3="Somewhat confident", or 4="Completely confident" \[higher score = greater self-efficacy\].

Sex: All, ages: 18 Years to any, accepts healthy volunteers

Inclusion Criteria:

* Self-identifies as a caregiver of a home-dwelling person with Alzheimer's disease or related dementias (ADRD)
* Resides in the target geographic region of the study
* Has access to a cell phone and agrees to receive text messages from the study
* Has an email address that they can receive emails from
* Individuals under the age of 18 who are emancipated minors in the state of Illinois and a caregiver of a person with dementia

Exclusion Criteria:

* Minors who are not emancipated in the state of Illinois.
* Previously participated in the intervention arm of the CommunityRx-Dementia clinical trial

• Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT. A Short Scale for Measuring Loneliness in Large Surveys: Results From Two Population-Based Studies. Res Aging. 2004;26(6):655-672. doi: 10.1177/0164027504268574. PMID 18504506

NIH grants: R01AG091308