H046 Anticipatory grief and ambiguous loss in Huntington’s disease: understanding the impact of apathy on caregivers experiences
Year: 2024
Type: conference-abstract
Abstract: Background Apathy is a prevalent and impactful feature of Huntington’s disease (HD) that has been linked to HD caregivers perceptions of distress and burden. In the absence of therapeutic strategies to ameliorate apathy, understanding the cause of this distress may help identify novel ways in which the impact of apathy can be reduced for HD caregivers. Aim To understand the subjective experience of HD caregivers who support someone with apathy and explore the meaning they attributed to the apathetic behaviour. Methods/techniques 11 HD caregivers each engaged in a 1-hour long, semi-structured interview that was analysed qualitatively using phonologically informed reflective thematic analysis (rTA). Results/Outcomes Five key themes were produced from the combined dataset: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven’t forgotten me, but they have forgotten that they ever loved me, (4) I’m grieving for someone who hasn’t died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Woven across these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt unheard and trapped, and the sadness of loving someone who no longer reciprocated their affection. Conclusions Caregiver distress was linked to an early grieving process and the ambiguous loss of the pre-disease relationship. This was further compounded by caregivers tendency to draw upon wider social discourses to explain apathetic behaviour rather than understanding it as part of the disease process. Neurorehabilitation strategies and psychological therapies may help reduce the distress caused by apathy for HD caregivers.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374538