Caregivers’ Reactions and Experience (CARE) is a supplemental substudy of the Imaging Dementia—Evidence for Amyloid Scanning (IDEAS) Study, which began recruiting over 18,000 Medicare beneficiaries in March 2016. CARE gathers preliminary information about how diagnostic amyloid position emission tomography (PET) scan imaging in dementia affects the experiences of diagnosed patients and their caregivers.
CARE presents a unique opportunity to integrate basic clinical science questions with social and behavioral science data on how patients and their caregivers make decisions about and cope with the onset and progression of Alzheimer’s disease.
CARE will recruit 3,500 patients who are participating in the IDEAS Study and will obtain their permission to contact their care partners (e.g., spouse, children, other family members).
Westat will conduct telephone interviews for patients and, separately, for their care partners as they enter and progress through the diagnostic and treatment process for Alzheimer’s disease. These telephone interviews will obtain information about demographics, history of seeking diagnostic information about dementia symptoms, their health care decisionmaking, advanced care planning, and health care preferences, as well as current cognitive status.
Ultimately, telephone interview responses will be linked to PET scan results, clinical reports, and comprehensive Medicare claims data.
CARE builds on the clinical and technological brain scan data obtained in the IDEAS Study, making this a unique opportunity to link patients’ and their care partners’ psychosocial information with detailed clinical diagnostic information.
Results will provide needed information for understanding the value that patients and their care partners have for knowing their diagnoses and whether a definitive diagnosis changes their search for additional diagnostic certainty.