Edinburgh Napier University

  Introduction:
Increasingly the provision of care for older people with dementia or children with intellectual disabilities (ID) 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 or adolescents with ID,
and the effects of caring on the carers’ autonomy and health over time.

Research Design and Methods:
A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses and seven mothers 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. Of the other categories, 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: overall there is a great degree of similarity in the journey of caring, what changes were experienced did not appear to conform to any
fixed pattern. All carers learned by experience to manage their situations although for the older group it is more rapid in the early stages of caring while the mothers
experienced this learning more gradually. For all carers their autonomy and health was challenged.