Navigating intimate practices under the spectre of familial dementia

This article considers data derived from auto/biographical interviews with 10 participants in the United States and United Kingdom at risk of rare familial early-onset dementias. Previous research utilising such approaches has detailed the impact parental young onset dementia (YOD) has on young people’s familial relationships, and life courses. There is a need to understand the experiences of people at risk of familial dementias, paying attention to decisions around whether to pursue genetic testing and make use of Assisted Reproductive Technologies. Surfacing these narratives is timely given the possibilities for genetic testing which offers challenges and opportunities for the first generation making these choices. Familial dementia and genetic testing feature in intimate relationships due to the impact on dating, couple life courses and reproductive choices. We conceptualise the road to testing – or not – as an intimate practice. Data suggest that wishes to have children or not inform testing decisions and highlight societal ideals around having children and the moral imperatives attached to testing. Findings indicate a need for timely testing, improved awareness in general medical practice, and tailored psychosocial support.