Abstract

A study of Alzheimer's programs in European countries found that group living programs most effectively reduced unpaid caregiver burden, while respite hospitalization was least effective. Whether the patients lived at home or in an institution, there was a need for constant support for both patients and their caregivers. The results emphasize the need for care programs that address all dimensions of unpaid caregiver suffering. Background: Senile dementia of the Alzheimer's type places significant physical, emotional, and economic burden on patients and other persons involved in care. Dementia literature indicates that unpaid caregivers of Alzheimer's patients (family and friends involved in care) suffer consequences in terms of quality of life, frequency of illness, and increased mortality.

Method: This study examined factors affecting unpaid caregivers' burden across care programs for Alzheimer's patients in 8 European countries. Programs that addressed the needs of both patients and unpaid caregivers were classified as: home social service; day relief for caregivers through day centres; follow-up by specialized medical expert centres; community housing/group living; and respite hospitalization. Unpaid caregivers representing each type of program were then interviewed regarding demographics, disability level for activities of daily living (ADL), work burden, and their economic burden due to illness. Statistical analysis of perceived health status and work burden focused on 5 dimensions: energy level; social isolation; emotional reaction (depression); sleep-related problems; and perceived work burden. Variables influencing perceived health and work burden were studied.

Findings:Characteristics of Caregivers and Patients: Women were more likely to report lack of energy, depression, and sleep related problems than men. Spouses expressed greater burden compared to other types of caregivers. When measured with the ADL index, patients' health status was significantly linked to caregivers' lack of energy, depression, and feelings of social isolation; however, patients' health status was not linked to perceived work burden. Institutionalization of the patient decreased caregiver depression and work burden, yet resulted in more frequent reports of social isolation. Characteristics of Programs: Caregivers involved in home social services or group living programs reported significantly lower burden compared to caregivers of temporarily hospitalized (respite) patients. Home social services reduced emotional reactions, sleep-related problems, and social isolation among caregivers. Group living was associated with improved energy levels and perceived work burden. Compared to respite, expert centres decreased caregiver depression and work burden, while day centers mainly reduced feelings of social isolation.

Conclusions: Controlling for country, group living programs most effectively reduced unpaid caregiver burden, while respite hospitalization was least effective. The study highlights the need for constant support for patients and caregivers, whether patients live at home or in an institution. Moreover, the results evidenced the importance of developing Alzheimer's health care programs that address all dimensions of unpaid caregiver suffering.

Reference: Colvez A., Joel M, Ponton-Sanchez A, & Royer A. Health status and work burden of Alzheimer patients' informal caregivers: Comparisons of five different care programs in the European Union. Health Policy 2002 (60):219-233.