Changes in informal care over one year for elderly persons with Alzheimer's disease

Background Informal caregivers play a major role in all types of assistance for elderly persons with Alzheimer's disease but few longitudinal studies reports change in this role over time. Objective The aim of our research was to describe the objective and subjective burden of informal caregivers of elderly persons with dementia of Alzheimer type, and to follow its evolution during one year. Methods A multicentre prospective study of 333 principal caregivers of patients with Alzheimer's disease, followed for one year. Results At inclusion, the majority of caregivers were involved in most tasks of assistance (activities of daily living, handling money, supervision, organisation of support services) but only 13.4% were involved in basic activities of daily living. As expected, during follow-up, the involvement of caregivers increased and extended to all tasks: whereas at inclusion 11.0% regularly assisted in all tasks, after only 12 months follow-up this figure rose to 28.9% (P<0.001). Whereas 45.9% of caregivers became involved in carrying out new tasks (mainly organisation of support services and help with basic activities of daily living), 8.9% no longer carried out certain tasks (essentially supervision and organisation of support services), 7.3% replaced one task by another, and for 37.8% there was no change. During the same time, the mean burden experienced by the caregiver showed a very slight change (increasing from a mean score of 21.08 ± 14.65 to 22.68 ± 16.45, P = 0.044) with great variation between caregivers. Those who increased their involvement also had a significant increase in caregiver burden. Conclusion While home caregiving appeared to follow an even course, the needs of the care recipient changed rapidly over time and caregivers differed in their response to these changes, indicating that regular follow-up is required.