• E Aguglia, M L Onor, M Trevisiol, C Negro, M Saina, and E Maso.
• Department of Clinical, Morphological and Technological Sciences, U.C.O. of Clinical Psychiatry, Alzheimer Evaluation Unit, University of Trieste, Trieste, Italy.
• Am J Alzheimers Dis Other Demen. 2004 Jul 1;19(4):248-52.

AbstractIn Italy, the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average, three-quarters of the caregiver's day is devoted to the patient, a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI), to quantify the caregiving workload and the Brief Symptom Inventory (BSI), to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman, approximately 60 years old. The majority of caregivers are spouses, followed by children. In general, these caregivers work at home, are housewives or retired, and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are, the greater amount of care and supervision they require, leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease, patient care tasks take up nearly all of the caregiver's free time, leaving them only about two hours per week for themselves or their friends. In conclusion, the management of dementia patients places a particular burden on the caregiver and involves several economic and social costs. The burden becomes heavier as the disease progresses, since the increase of cognitive disorders and the resulting reduction of independence in daily life, together with the onset of behavioral symptoms, heighten the caregiver's distress, anxiety, and depression. Establishing a network of community services able to alleviate the burden on families is therefore a priority. Parallels can be drawn between the stresses documented for American caregivers and their Italian counterparts.

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