Core--Caregiver

New York University School Of Medicine, New York NY

Investigators

Linked publications & trials

Abstract

The NYU-ADCC Caregiver Core conducts a comprehensive assessment of the primary caregivers of all AD patients participating in the Clinical Core, follow them longitudinally and provides them with counseling on request. The routine structured multifaceted assessment is in two parts: the first part includes measures of depression, anxiety, social network and support and quality of life; the second part measures family conflict, behavior problems and caregiver reaction, caregiver appraisal and other specific characteristics related to caregiving. The caregiver of a patient with AD completes the entire assessment. The key informant of all ADCC subjects with mild cognitive impairment (MCI) completes only the first part of this assessment, as do all normal control subjects. The Caregiver Core protocol os based on a psychosocial intervention study developed for caregivers at the NYU-ADCC which is now in its 12th year. At the conclusion of every diagnostic evaluation of the Clinical Core, counselors of the Caregiver Core conduct conferences with the primary caregiver and other family members. They make regular follow-up telephone calls every 6 months to the caregivers of all AD patients as well as to all normal subjects and are also responsible for contacting all subjects for re-evaluation. The counseling staff is available to respond to requests for help and information from all caregivers of subject of the Clinical Core. They are a "user-friendly" resource and a link between clinic subjects and clinic physicians. Their activities facilitate recruitment of new subjects, retention of current subjects and participation of subjects in autopsy tracking and in research studies. The counselors also serve as a valuable resource to other ADCC cores and for development of future research on caregiving at the Center. The large database and subject pool, about which we will continue to add longitudinal information collected concurrently on caregivers and their family members with AD, on mildly impaired subjects and their informants and on normal non-caregiving control subjects, will be a valuable research resource in its own right and foster the formulation of new research to improve caregiver and patient well-being and to understand the impact of caregiving.