Employment and coping strategies in carers of people with young onset dementia

Background and objectives Research into carers of people with young onset dementia (YOD) has highlighted that carers may experience more distress than late onset dementia (LOD) carers (e.g. Freyne, Kidd, Coen & Lawlor, 1999), and have specific needs which differ from those of LOO carers (e.g. Svanberg, Spectar & Slott, 2011). Difficulties with employment has been raised as a particular issue for this population (e.g. van Vliet, de Vugt, Bakker, Koopmans & Verhey, 2010), yet no qualitative study has examined the factors influencing carers' experience of employment. This study aimed to explore such factors and how these impact on carers' ability to cope with their caring roles. Method A qualitative grounded theory approach was used to study the experiences of employment using in-depth semi-structured interviews. Ten YOD carers with experience of employment, who were living with, and caring for, someone who had been diagnosed with dementia before the age of 65, were recruited through carer support groups using purposive sampling. Results Nine theoretical categories were identified, including: dealing with the challenges of the caring role, appraisal, attributing responsibility, support, benefitting from working, transferring work skills, mutual interference of work and home, needing flexibility to continue working and being motivated to seek work. by a need for space and identity. Conclusions These findings expand current theoretical knowledge of how YOD carers may manage employment alongside their caring role. Findings suggest carers may experience employment as personally beneficial, and that it may directly and indirectly influence their ability to cope with their caring role. YOD carers' vocational needs, and their coping resources may need to be explicitly addressed in clinical assessments, and explored and incorporated into psychological interventions. Further research is warranted to validate the findings empirically with a larger sample of YOD carers.