EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: II--A qualitative analysis of the experience of caregiving

Abstract

Background: Spouses caring for a partner with dementia are subject to physical, psychological and social stresses. In view of the part played by spouse carers in preventing admission to institutional care, a fuller understanding of the subjective experience of caring is an important area of enquiry. Qualitative analysis of their accounts of the difficulties and rewards in looking after their partners may indicate strategies to support them and to alleviate the stresses that they experience.

Method: Twenty co-resident spouses of people with NINCDS-ADRDA probable dementia of the Alzheimer's type, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview that included open-ended questions about the experience of caring.

Results: Overall, the most commonly expressed difficulties reflected: loss of companionship through diminished quality of communication; loss of reciprocity as carers experienced their partners' growing dependency; and deterioration in their partners' social behaviour. Satisfaction from caring stemmed from: a feeling of job satisfaction; continued reciprocity and mutual affection; companionship; and the fulfillment of a sense of duty.

Conclusion: Spouse carers in the 14 countries described the difficulties and rewards of caring in similar terms. This suggests commonality of experience, in spite of diversity in informal and statutory provision of care for older people between different countries.