A grounded theory longitudinal study of carers' experiences of caring for people with dementia

Introduction Increasingly the provision of care for older people with dementia has shifted from institutions to the community. This has resulted in an increase in burden and a reduction in autonomy for those who care for these individuals. Aims This study sought to identify, describe and explore the changes in the carers' experiences of looking after a relative living with dementia, and the effects of caring on the carers' autonomy and health over time. Research Methods A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses at the beginning, at six months and at eighteen months. A constant comparative analysis of taped and transcribed interviews was used. Findings Four categories emerged: My Life Changed, Commitment, Responsibility and Duty, and Support. The core category My Life Changed was identified as representing the beginning of the caregiving journey; and the learning from experience that occurred as a consequence of that journey, offering a new perspective on the experience of carers. Commitment refers to a deepened and sustained element; Responsibility and Duty increases over time and finally Support refers to the fluctuating nature of help provided by formal and informal sources. All participants experienced changes in the caregiving journey; the degree and nature of necessary adaptations varied. Conclusions A Theory of Caring emerged, but what changes were experienced did not appear to conform to any fixed pattern. All carers learned by experience to manage their situations. For all carers their autonomy and health was challenged.