“I’m struggling but I’m not suffering”

This PhD thesis is an exploration of the lived experiences of persons with young onset dementia (YOD) in Ireland. YOD is the term used for dementia in persons under 65 years of age, an arbitrary cut-off point with no real medical basis, but rather a reflection of the societal start of ‘old age’. While the aetiology does not differ much, persons with YOD dementia generally have different experiences and needs compared to older persons with dementia. People with YOD tend to be physically stronger, have more energy, and are often in employment. They may still have major financial responsibilities such as a mortgage, and any children they have may be young and still in a position of dependence. In Ireland, only a handful of studies have been carried out in relation to persons with YOD; it was therefore my aim to explore, and hear in their own voice, the lived experience of persons with YOD in Ireland.