Pilot Phase of a Prospective Cohort of Patients with Alzheimer's Disease and Their Families
This is the pilot phase of a longitudinal observational cohort study. The study includes family clusters comprised of a patient with Alzheimer's disease, an informal caregiver and at least one first-degree relative of the patient. The family clusters will be followed-up in expert memory centers and online in order to study risk and prognostic factors (including blood-based biomarkers) in the first-degree relatives and patients, respectively, as well as caregiver health, difficulties and needs. This pilot study is performed to assess the feasibility of conducting a larger-scale study.
⁃ AD patients:
• Probable Alzheimer's disease (clinical and biological NINCDS-ADRDA 2011 criteria)
• Mild-moderate AD (MMSE ≥15)
• Sufficiently fluent in French in order to answer study questionnaires
• Agrees to undergo medical examinations at baseline, 12 and 24 months, as outlined in the protocol
• Affiliated to French social security
• Written informed consent
⁃ Caregivers:
• Caregiver (defined as assisting the patient in activities of daily living for at least 6 hours per week during the last 6 months) to an AD patient having agreed to participate in the study
• Age ≥18 years.
• Sufficiently fluent in French in order to answer study questionnaires
• Agrees to answer regular questionnaires about their own or the AD patient's health (during visits at study centres or via a secure internet website/postal questionnaires)
• Affiliated to French social security
• Written informed consent
⁃ First-degree relatives:
• First degree relative of an AD patient having agreed to participate in the study
• Age ≥18 years.
• Sufficiently fluent in French in order to answer study questionnaires
• Agrees to undergo medical examinations at baseline, 12 and 24 months, as outlined in the protocol
• Agrees to answer regular questionnaires about their own health (via a secure internet website or via postal questionnaires)
• Affiliated to French social security
• Written informed consent
⁃ In order to be included in the study, a familial cluster must be comprised of 2 to 5 people, as follows:
• Familial cluster of 2 people: 1 AD patient and 1 first-degree relative who also meets the caregiver inclusion criteria, OR
• Familial cluster of 3 to 5 people: 1 AD patient, 1 caregiver (does not need to be a relative of the patient), 1 to 3 first-degree relatives of the patient