More than 16 million unpaid caregivers care for a rapidly growing population of home-dwelling people with Alzheimer?s disease and related dementias (ADRD) in the US. ADRD caregivers have poorer physical health than their peers and high rates of burden and depression. Stigma and social isolation are common. Federal law calls for connecting caregivers to community resources (e.g. ADRD education, support groups, respite care), with special concern for reducing health disparities. In parallel, CMS is testing routine assessment and referral for unmet health-related social needs (HRSNs) (e.g. food, housing, interpersonal safety and social support). Demands of caregiving commonly produce financial strain, yet HRSNs remain overlooked in this population. Low intensity, scalable resource referral solutions are needed to manage and promote the health and well-being of all ADRD caregivers and persons with dementia (PWD). The proposed research, in a predominantly African American/Black population on Chicago?s South Side, will fill a gap in knowledge about how to best intervene to support ADRD caregivers. We will conduct a randomized, controlled efficacy trial to test the effect of the CommunityRx-Dementia (CRx-D) intervention on caregiver and care recipient outcomes over 12 months. CRx- D builds on CommunityRx, an information-based intervention that systematically matches people to nearby community resources for HRSNs, caregiving and other self-care needs. Caregivers will be stratified by unmet HRSNs and randomized to usual care or usual care + CRx-D. During a primary care visit, caregivers assigned to CRx-D will receive: (a) information about common resource needs among ADRD caregivers, to normalize these needs; (b) a personalized resource prescription (HealtheRx-D); (c) demonstration on use of an online Community Resource Finder; and (d) coaching on how to activate community resources, including how to reach the CRx-D community resource specialist. The CRx-D group will also receive texts over 8 weeks offering additional support to activate resources.
The specific aims of this research are to (1) Among caregivers with unmet HRSNs, evaluate the effects of CRx-D versus usual care on caregiver self-efficacy and secondary psychosocial and behavioral outcomes, as well as health and healthcare utilization; (2) Evaluate acceptability of the intervention and the effects of CRx-D versus usual care on the health care experience, including satisfaction with care, experiences of stigma during clinical care and likelihood of sharing community resource information with others; (3) Qualitatively assess caregivers?: experiences with the CRx-D intervention; the role of stigma in disclosing needs and accessing resources; and experiences sharing resource information with others. Our objective is to promote caregiver health and well-being by intervening with caregivers at the point of their own primary healthcare. The long-term goal of this research is to promote public health and alleviate suffering among a growing population of ADRD caregivers and PWD. This work advances the mission of NIA by generating new knowledge about community resource connections that promote ADRD caregiving outcomes and supports.
The National Alzheimer?s Project Act calls for community resource linkages as a key strategy to support more than 16 million caregivers of the growing U.S. population of persons with dementia (PWD) living at home. Our objective is to evaluate the health impact and mechanisms of a low-intensity, scalable information technology- based intervention to systematically match caregivers at the point of their own primary care to nearby community resources for health-related social, caregiving and any other self-care needs. The long-term goal of this mixed methods research is to inform science, policy and practice in this emerging field and to advance NIH?s mission by generating new knowledge about resource connections that promote ADRD caregiving outcomes and supports.
