- Study Director: Jalayne Arias, JD, MA
- Sponsor: Hellman Foundation
- Official Study Title: Financial, Legal and Social Decision-Making Post Early Age-of-Onset Alzheimer’s Diagnosis
- Conditions Studied: Alzheimer’s disease (AD)
Purpose of the Study
A diagnosis of early age-of-onset Alzheimer’s disease (EOAD) triggers unexpected legal, financial and social decision-making for patients and their families. EOAD is the onset of Alzheimer’s disease (AD) in those younger than 65 years of age. Patients with EOAD are more likely to be employed and have caregiver responsibilities for children or parents at the time of onset than their late-onset AD counterparts. Studies that better characterize those challenges specific to EOAD are essential to identifying solutions that will improve patient and family outcomes. The purpose of this study is to describe the impact of an EOAD diagnosis on and challenges to legal, financial and social decision-making post-diagnosis.
Study Details
Research participants will meet the following criteria:
- A family member or caregiver of a patient-participant in the Early Onset and Atypical Alzheimer’s Disease study led by Dr. Gil Rabinovici at UCSF.
- The patient-participant receives a diagnosis of EOAD during the family conference that is confirmed by at least one biomarker (PET Amyloid, MRI, or CSF biomarker data).
- The patient-participant is under the age of 65 or was under 65 at the time of symptom onset or diagnosis.
- The patient and the family member-participant report that the patient has been diagnosed with EOAD.
- The patient-participant provides assent for the research team to speak with the patient’s family member or caregiver.
- The family member-participant has capacity to consent to enrollment.
What to Expect
Participation includes a brief demographic survey as well as two interviews – one within 30 days of an EOAD diagnosis and another 6 to 9 months after diagnosis. Each interview will last between 30 to 60 minutes and can be conducted either in person or via telephone. Interviews will be recorded, transcribed and analyzed. There are no costs for participating in this study.
Contact Information
If you are interested in participating in this study or have any questions, please contact the study coordinator Krystal Karunungan at [email protected] or the principal investigator, Jalayne Arias, at [email protected] or 415.353.3597.