F054 ‘I know I’m supposed to care but I don’t feel it’ – living with social cognitive change in HD

<h3>Background</h3> Our ‘social brain’ (Frith and Frith 2010) allows us to live successfully alongside one another. Controlled studies show us that neural networks and social cognition become problematic for people with HD (Bora, Velakoulis et al. 2016). <h3>Aim and Method</h3> 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. This involved deep ‘hanging out’ (Browne and McBride 2015) over a period of 12 months with 14 HD families using observation and natural conversation. <h3>Results</h3> Many people with presymptomatic, and early HD, when given time to reflect, are often aware of their social cognitive change. It is a frightening, exhausting and frustrating period leading to alterations in all forms of social interaction including the understanding of text messages to how one may respond to a child’s needs or behave at work. They want to be ‘social’ but that act must be predictable and often only on their terms. As verbally expressed but also complex communication wanes increasingly embodied anxiety about any form of ‘socialness’ occurs as well as dysregulation in all emotional and sensory domains. As the person moves into the mid stages of the illness, awareness of social change ebbs and flows. A person may only know occasionally they are being ‘brusque’ but also that they feel ‘freed up’ from social constraints. Observations demonstrate that they are not aware of it in the moment or how it makes others feel. <h3>References</h3> Bora, E., <i>et al</i>. ‘Social cognition in Huntington’s disease: A meta-analysis.’ <i>Behav Brain Res</i> 2026;<b>297</b>: 131–140. Browne, B. C. and R. S. McBride. ‘Politically sensitive encounters: Ethnography, access, and the benefits of ‘Hanging Out’.’<i> Qualitative sociology review : QSR</i> 2015;<b>11</b>(1): 34–48. Frith, U. and C. Frith. ‘The social brain: allowing humans to boldly go where no other species has been.’ <i>Phil. Trans. R. Soc. B</i> 2010;<b>365</b>(1537):165–176.