Abstract

ObjectiveTo explore feelings and psychological well-being of spousal caregivers of persons with Alzheimer's disease related to caregiving and experiences with the service system and associated factors. MethodsA cross-sectional survey of Alzheimer patients’ spouses included items on caregiving and the Psychological Well-being Scale (PWB). An open-ended question: “What kind of problems have you faced with the services?” was included. Those responding to the question (n=728) were analyzed combining both quantitative and qualitative responses. ResultsAccording to PWB, 10.8% had poor well-being. They had poorer subjective health, their care recipient had poorer functioning and they more often felt that their closest ones did not understand caregiving situation than those with better PWB. No difference existed between these groups in proportions satisfied with the services. In the responses of the open-ended question, the caregivers described both positive and negative feelings related to everyday caregiving as well as problems related to using services. Positive feelings were associated with being satisfied with services and caregivers’ good subjective health. Negative feelings included bitterness, feeling of being isolated and distress. Bitterness was associated with being dissatisfied with services, the relationship with the spouse or closest ones and poor PWB. Feeling isolated was associated with the view that the closest ones do not understand their situation. ConclusionsCaregivers’ feelings are intertwined with their personal characteristics and life situation with their spousal relationship and closest ones. Traditional home service may not be equipped to deal with the complexity of these feelings. A more psychological approach is needed.

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