"It'd Be Easier If She'd Died'': Researching and Reporting "Taboo'' Issues

In the UK context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences of both those with dementia and of their family members. Failing to represent perceptions and experiences as they are lived, however, does a serious disservice to the research endeavor and can prevent policy and service development and positive change. This presentation draws on stories told by twenty-two, 6- to 30-year-old participants in an Alzheimer’s Society (UK) Funded project that took a narrative and auto/biographical approach to investigate the perceptions and experiences of children and young people who have a parent with young onset dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. When these stories were reported in the national media, there was some vociferous criticism. Having asked the young people to share how life was for them, the researchers felt ethically bound to respect and disseminate their accounts. Researching and representing ‘‘taboo’’ and sensitive topics and views raise a myriad of issues that will be explored here.