Alzheimer's is a growing concern in Hispanic and African American populations, with increased incidence and earlier age of onset as compared to the non-Hispanic White population. Informal caregivers provide the majority of care for patients with Alzheimer's disease (AD),with Hispanic and African American caregivers accessing formal care systems less frequently and at later stages compared to non-Hispanic White families. Community organizations serving persons with Alzheimer's in Milwaukee county long recognize the lag in informal care systems transitioning primary care management to formal paid care, waiting until a crisis in inability to provide care, and/or inability to maintain the health and safety for the patient within the informal care system occurs. However, it is unclear what early warning signs preceded the crisis and what formal care providers, including physicians, social work, nursing, family workers and dementia care specialists, know about warning signs and crisis in these families. Data and discussions from a multi-stakeholder community coalition suggest that formal and informal systems of care may diverge in their interpretation of early warning signs, crisis points and cultural considerations around care transitions. Thus assessing what both the caregiver and healthcare professional know about early warning signs and how both groups interpret this information will inform the development of culturally adapted, pre-crisis interventions. This study aims to identify both family and formal care providers' views of care transitions, warning signs and care crisis points, and where their views of these situations both converge and diverge. The proposed study will collect family and service provider level data from up to 240 African American and Hispanic family caregivers (including adult and youth key informants), and 50 service providers recruited through a community coalition, including the University of Wisconsin-Milwaukee, Medical College of Wisconsin, The United Community Center, Alzheimer's Association and Milwaukee County Department on Aging. This study will be the first to identify culturally relevant warning signs to guide the development of culturally adapted informal and formal educational interventions with African American and Hispanic communities, designed to avert care crises. It will also nuance the caregiving paradigm through the inclusion of youth caregivers, providing the first insight into the youth view of caregiving transitions and what they see as warning signs and crisis points, adding dimension to informal caregiving knowledge and programming. The proposed study engages several community-based service providers, focusing on the need to understanding cultural issues in caregiving through the lens of organizations that are accessed and trusted by the target population. Results will contribute to the NIA mission to improve the well-being of AD patients and caregivers by developing a better understanding of caregiving needs and the disparities inherent in the transition from informal to formal care management.
statement This study is relevant to both the mission of the NIA and public health by providing information on previously unknown warning signs and care crisis points leading to a transition of primary care between informal and formal care management in African American and Hispanic families with Alzheimer's or related dementias (ADRD). Utilizing a community based approach, this study uniquely engages adult and youth caregivers, and community based service providers to assess early warning signs and disparities identified by informal caregivers and formal care providers. Results are expected to inform care coordination and education interventions for underserved African American and Hispanic patients with ADRD, caregivers and formal care providers.
