DECIDE: Dyads and Families

Launched by EMORY UNIVERSITY · Nov 17, 2021

Keywords

ClinConnect Summary

The DECIDE: Dyads and Families clinical trial is focused on helping adult daughters who care for their parents with memory loss, specifically within African American families. The goal is to create a special program that supports these daughters in making healthcare decisions, ultimately improving the quality of life for their parents who may have Alzheimer’s disease or related conditions. The study will first gather information through surveys and interviews about caregiving experiences, family dynamics, and healthcare choices to better understand the unique challenges faced by these families.

To participate, caregivers must be African American daughters or daughters-in-law who are at least 18 years old and actively involved in caring for a parent aged 50 or older with mild to moderate dementia. Participants should be able to read and understand English and have access to a phone or computer. The study is currently recruiting participants, and those involved can expect to share their experiences and thoughts, which will help shape a program designed specifically for their needs and improve support for families dealing with dementia.

Gender

ALL

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 to read, speak, and understand English
• • cognitively intact
• • access to an internet connection
• • access to a phone or computer that accepts emails.
• Key informants:
• Inclusion Criteria:
• • 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:
• Inclusion Criteria:
• • 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
• Inclusion Criteria:
• • - 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.