The experiences of sharing a diagnosis of young onset dementia with others

Section A reviews research literature on experiences of self-disclosing a life-limiting illness to others. It summarises the complex processes that frames self-disclosure as a series of ongoing events across a range of relationships: how people self-disclose, motivations for self-disclosure and concealment, helpful and unhelpful experiences and gender and age differences in selfdisclosure. Among clinical implications is the need for a balanced view between selfdisclosure and concealment for individuals to cope with difficulties and maintain a sense of control and their sense of self when faced with vulnerability from a life-limiting illness. Only a few studies suggest or recommend support for self-disclosure. Research implications include a need for longitudinal research to follow the evolution of self-disclosure decision making and relationships, to incorporate quantitative facets within studies of disclosure process, and to examine disclosure for different life-limiting illnesses.

Section B explores, from the perspective of individuals with young onset dementia (YOD), what happens to relationships when individuals share their YOD diagnosis, and the renegotiation of relationships with others as dementia progresses. The journey from prediagnosis to living with YOD was examined. Grounded theory methodology was used analyse the processes of receiving and understanding a diagnosis, sharing the diagnosis to others, negotiating a shared understanding with others and living with dementia. The findings revealed complex challenges faced by individuals with YOD as the condition progresses. The impact of self-disclosure on relationships and the sense of self was considered. The distinct experiences of YOD due to overlapping life stages and dissimilarities to chronic mental and physical health conditions suggests the need for YOD specific services. Clinical and research implications were discussed based on the findings and existing literature.