Caring for relatives with dementia — Caregiver experiences of relatives of patients on the waiting list for admission to a psychogeriatric nursing home in The Netherlands

Abstract

Institutionalising a relative is a difficult decision and often relatives have to feel heavily burdened before they take such a step. Then the following delay because of waiting lists can be too much. This paper examines the experiences of caregivers of demented patients at the moment of registration on the waiting list for nursing-home care. Interviews were carried out with 93 informal caregivers and analysis was made of the files of patients who were registered on the waiting list for nursing-home admission in Amsterdam in 1997 and 1998. Data collection included the Interview for Deterioration in Daily living activities in Dementia, The Revised Memory and Behaviour Problem Checklist, the Social Support List-Interaction, and three subscales of the Caregiver Reaction Assessment (CRA) scale. At the moment of admission to the waiting list, half of the respondents were rather heavily burdened or worse. Less severe dementia, lower age of the patient and providing more hours of informal care especially accounted for more negative experiences of caregivers. The self-esteem derived from caregiving was higher for caregivers with lower income and for those who perceived the quality of the relationship with the demented person as better. The high burden levels at the moment the decision to institutionalise the patient is taken put a heavy claim on the energy needed to continue to care during the ensuing waiting period. More social support and formal home care may reduce the level of burden of caregiving.