Apathy and Relational Changes in Huntington’s Disease: Exploring the Caregivers’ Experiences

Mason, Sarah Louise (2024) Apathy and Relational Changes in Huntington’s Disease: Exploring the Caregivers’ Experiences. Doctoral thesis, University of East Anglia.

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Abstract

Background: Huntington’s disease affects cognition, behaviour, and social and emotional functioning with reduction in self-initiated thoughts, activities, emotional responses or social activities, or apathy, a frequent and early consequence closely related to underlying neuropathological changes. Little is understood about how these changes impact on caregivers, despite emerging evidence that behavioural features of the disease and change in the caregiver/care recipient relationship are linked to perceptions of burden.

Aim: This thesis aimed to explore the experience of caregivers and the meaning-making constructed about apathy and relational change in Huntington’s disease.

Methods: Semi-structured interviews analysed with reflective thematic analysis were used to investigate caregiver experience of supporting someone with Huntington’s disease and apathy. Following which, a systematic review of qualitative research and thematic synthesis of caregiver experience of relational change in Huntington’s disease was conducted.

Results: The qualitative study produced five themes: “What even is apathy?”, “It makes my life harder”, “They haven’t forgotten me but they have forgotten that they ever loved me”, “Grieving for someone who hasn’t died yet”, and “I need a safe space to say what I really feel without fear of judgement”. Narratives about the invisibility and unspoken nature of both HD and caregivers were inter-woven across themes. The systematic review identified themes of: “Loss of friendship, companionship and intimacy”, “Relationships built around fear”, “Seeing my own future played out before me”, and “HD has made us stronger”.

Conclusions: This thesis portfolio highlights the emotional and interpersonal impact of Huntington’s disease on caregivers. Using the theoretical framework of anticipatory grief and ambiguous loss, it promotes the importance of a systemic view of the impact of the disease, helping to shape future research and clinical practice.

Item Type:	Thesis (Doctoral)
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User:	Chris White
Date Deposited:	11 Nov 2024 12:59
Last Modified:	11 Nov 2024 12:59
URI:	https://ueaeprints.uea.ac.uk/id/eprint/97604
DOI:

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