RecruitingNot ApplicableNCT05139290

DECIDE: Dyads and Families

Decision-Making Experiences for Culturally Inclusive Dementia Engagement: Dyads and Families (DECIDE: Dyads and Families)

Sponsor

Emory University

Enrollment

40 participants

Start Date

Jul 15, 2022

Study Type

INTERVENTIONAL

Conditions

Dementia Alzheimer Disease Caregiver Burden

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

Min Age: 18 Years

Inclusion Criteria24

For persons living with memory loss or cognitive impairment/Alzheimer's disease and related dementias(PLWD):
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.
self-identifies as African American
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 to read, speak, and understand English
cognitively intact
access to an internet connection
access to a phone or computer that accepts emails.
Key informants:
Meet the criteria for PLWD and caregiver
has experience navigating at least 2 of the following for their parent living with dementia: assisting the PLWD with getting a formal diagnosis of Alzheimer's disease and related dementias, finding/changing a healthcare provider, medication management, receiving treatment or having a procedure, conversations about hospice, palliative care, and/or end-of-life care.
Past caregiver:
Meet criteria for caregiver except not actively providing care because of the death of their parent or the parent has been transitioned to a long-term care facility.
The death of the parent should be at least 12 months prior to recruitment.
Caregiver of persons with severe dementia
\- Meet criteria for caregiver except actively providing care for a parent with severe dementia based on the family caregiver report on the Dementia Severity Rating Scale.

Exclusion Criteria2

any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia).
Caregiver:

Interventions

BEHAVIORALPrototype Intervention

The prototype intervention will be likely family-based and focused on issues of communication, problem-solving, health system literacy, and family systems, all considered in the context of the African-American (AA) adult daughter role and cultural identity.