Trial Parameters
Brief Summary
The purpose of this study is to design and test a decision-making program that is tailored to support adult daughters making healthcare decisions for their parents who are living with memory loss to improve the quality of life of African American families. There are two phases of this research study. The first phase will collect information by surveys and/or interviews. The surveys and interviews will ask questions about demographics (e.g., age, race/ethnicity), culture, health, family dynamics, caregiving, and healthcare experiences. The surveys will be completed by all eligible adult daughters and parents with memory loss in pairs. The interviews will be completed by a smaller number of pairs and by all former adult daughter caregivers. The general scope of topics is caregiving experiences, cultural identity, healthcare decisions for persons living with Alzheimer's disease, and related dementias, health, and well-being. The research team will identify and examine key factors that will lead to designing and testing the feasibility of a culturally tailored prototype intervention for African American dementia dyads/families of persons living with mild to moderate Alzheimer's disease and related dementias.
Eligibility Criteria
For persons living with memory loss or cognitive impairment/Alzheimer's disease and related dementias(PLWD): Inclusion Criteria: * self-identifies as African American * age 50 years or older * community-dwelling * experiencing signs and symptoms of mild to moderate dementia through family caregiver report on the Dementia Severity Rating Scale and meeting the National Institute on Aging and the Alzheimer's Association clinical criteria for probable (Alzheimer's Disease (AD) * able to read, speak, and understand English * willing to participate. Exclusion Criteria: * any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia). Caregiver: Inclusion Criteria: * self-identifies as African American * 18 years of age or older * daughter/daughter-in-law (including non-blood individuals) * aids in activities of daily living and/or instrumental activities of daily living for the PLWD * makes/takes part in formal care decisions * able