Dementia patients caregivers quality of life: the PIXEL study

Background Alzheimer's disease and related syndromes have heavy social and human consequences for the patient and his family. Beyond the neuropsychiatric effects of specific therapies for dementia, one of today's challenges is the quality of life for both patients and their informal caregivers. Objectives This survey tends to determine parameters influencing caregivers' quality of life, and its possible link with patients' quality of life. Methods A scale measuring caregivers' quality of life, developed from data from previous PIXEL studies was used. It is a questionnaire composed of 20 items. The scale was related to the socio-demographic data of both patients and their main caregivers, to the ADRQL scale (Alzheimer Disease Related Quality Life) of Rabins for the QoL of dementia patients, to the patients medical and therapeutic data, specially a neuropsychological inventory: Folstein's cognition test, Cornell's depression scale, the fast battery of frontal assessment, Katz's dependence index, Cummings' neuropsychiatric inventory for behavioral and psychological symptoms of dementia and to a physician evaluation of caregiver's depression. Results One hundred patients diagnosed with dementia who live at home with their principal caregivers were recruited for this survey. Patients were 80.2 +/- 6.8 years old and caregivers; were 65.7 +/- 12.8 years old. The caregivers' quality of life was correlated to the quality of life of the patients they cared for, the importance of behavioral disorders, and the duration of dementia evolution. Women caregivers had a worse quality of life and were more depressive than men. Discussion Caregivers' and patients' quality of life are related and both share a community of distress. Copyright (c) 2005 John Wiley & Sons, Ltd.