Distress of caregivers of older adults receiving home care in European countries: results from the AgeD in HOme Care Study

Abstract

Objective: To identify factors associated with distress of caregivers of home care patients in Europe and to assess whether caregivers response to distress varies among countries.

Design and setting: Cross-sectional study among older adults receiving home care in 11 European countries.

Participants: A total of 3,449 older adults receiving home care in Europe.

Measurement: Caregiver distress was assessed by asking whether caregiver was distressed, angry, depressed, or in conflict because of caring for the participant.

Results: Mean age of study participants was 82.4 years, and distress was present in 7.5% of their caregivers. In all the country sample, number of depressive symptoms (OR 1.38, 95% CI: 1.27-1.49), cognitive performance scale score (OR 1.19, 95% CI: 1.10-1.30), number of impaired Activities of Daily Living (OR 1.36, 95% CI: 1.25-1.47), and number of behavioral symptoms (OR 1.28, 95% CI: 1.04-1.58) were significantly associated with caregivers distress. These associations were consistent among caregivers in all countries. Overall, 295 caregivers (8.6%) felt that participant would be better off in another living environment, and 1,444 (41.9%) caregivers were willing to increase help. Despite an elevated rate of distress, a low proportion of caregivers in Italy (3.0%), Germany (6.1%), and France (5.5%) felt that participants would be better off in another living environment. By contrast, in countries with lower rate of distress, as Iceland and the Netherlands, this rate was more elevated (15.5% and 20.6%, respectively).

Conclusion: Distress of caregivers is associated with patient cognitive and functional status, depressive, and behavioral symptoms, and there are national differences in the response to distress.