F055 ‘There’s an anatomy to an argument’ but ‘no one sees us moving the chess pieces’ – living with social cognitive change in HD, the companion’s perspective
Year: 2024
Type: conference-paper
Abstract: Background Almost all the emotions as humans we experience in the world come from our relationships with others (Frith 2023). The skills that underlie this interaction known as social cognition appear to be targeted by the pathology of HD (Bora, Velakoulis et al. 2016) and therefore social functioning becomes problematic. Aims/method Using ethnography, this is the first study to explore what living with social cognitive change might look or feel like for the person with HD but also their companions in the messiness of real life (Gabb 2010) This involved deep ‘hanging out’ (Browne and McBride 2015) over a period of 12 months with 14 HD families using observation and natural conversation. Results Facing lengthy ambiguous loss (Nathanson and Rogers 2021), companions describe the insidious & then relentless work to try and maintain their person’s social connectedness. This is often at great cost to their own wishes and own relationships. Companions describe ‘seeing’ the social change prior to any diagnosis alongside other nuances such as tendency to rigid and rules-based thinking. They note if they can adapt then it can ease the loss but even when their loved one with HD maybe aware of their social change (in the presymptomatic and early stage), this adaptation is only occasionally a mutual act and more frequently a lone one. As the illness heads towards the middle and later stages, there are brief glimpses of former connection which prove bittersweet. References Bora E, et al. ‘Social cognition in Huntington’s disease: a meta-analysis.’ Behav Brain Res 2016;297:131–140. Browne BC, McBride RS. ‘Politically sensitive encounters: Ethnography, access, and the benefits of ‘Hanging Out’.’ Qualitative Sociology Review: QSR 2015;1(1):34–48. Frith CD. ‘What makes us social?/Chris Frith and Uta Frith.’ Gabb, J. (2010). ‘Home truths: ethical issues in family research.’ Qualitative Research: QR 2023;10(4):461–478. Nathanson A, Rogers M. ‘When Ambiguous Loss Becomes Ambiguous Grief: Clinical Work with Bereaved Dementia Caregivers.’ Health Soc Work 2021;45(4):268–275.
Institution: University of Birmingham
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374413