THE DESIGN AND DEVELOPMENT OF AN INSTRUMENT FOR MEASURING THE QUALITY OF LIFE OF CARERS OF OLDER PEOPLE SUFFERING FROM A DEMENTING ILLNESS

The aim of the study has been to develop an instrument to assess the quality of life (QOL) of carers of people with a dementing illness. The instrument is intended for use in practice areas dealing with this particular client group as the concept of quality of life for carers is an important and emerging issue due to the changing focus of health and social care policy and its potential impact on caring. The study developed as a result of previous work indicating the multi-dimensional nature of caring for people with dementing illnesses. Although a large body of evidence identifies numerous factors that may influence caring ability, the quality of life of family and other informal carers has been a neglected area. The research methods involved both qualitative and quantitative approaches. Research suggests that quality of life is a multi-dimensional concept combining both objective and subjective indicators. However, current thinking emphasises the importance of individual subjective experience in the causal sequence of quality of life in relation to the specific disease process or disability under investigation. Therefore the qualitative approach involved the use of focus group interviews with current carers to tap into their experience and generate items for the initial developmental phase of the instrument. The quantitative phase involved a series of item reduction and refinement studies using factor analytic techniques. An initial 64 item questionnaire was thus reduced to a 27 item instrument that represented the most significant aspects of caring for someone with a dementing illness. The quality of life of carers of people with a dementing illness can be viewed as an interaction between the variables within the caring relationship and the appraisals, either positive or negative, that are made. To reflect this process the questionnaire was constructed with an Interactional Model of QOL (Hyland. 1992a) as its theoretical base. The study has developed and refined a quality of life instrument that has been generated and tested in actual carer experience and addresses both instrumental and affective aspects of care. It is based on a theoretical model of QOL that explores the relationship between dependency factors, the consequences for the carer and their subsequent affective responses. It is anticipated that the instrument may have a number of uses within the arena of health and social care in both clinical practice and for educational purposes. In clinical practice it could be used as an outcome measure in intervention studies and as an assessment tool as part of a larger assessment package reflecting the recognition of the needs of carers as identified in the Carers (Recognition and Services) Act, 1995. The concept of quality of life and the findings of this study can be incorporated into both pre-registration and post-registration educational programmes to promote a multi-professional approach to the delivery of care