James, Charles and Walshe, Catherine and Swarbrick, Caroline (2022) Moral Distress in the Care of People Living with Moderate to Advanced Dementia : A Narrative Exploration of Family Carers’ Experience of Home-Based Care Provision towards the End of Life. PhD thesis, Lancaster University.
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Abstract
Background The number of those living with, or providing care for, those with dementia is increasing, projected to quadruple by 2040. Around 700,000 people currently provide unpaid care in the UK to those with dementia. However, knowledge about what it is like to provide such care in domestic home settings for those in the moderate to advanced stages of dementia is limited, especially towards the end of life. Where experiences are known, they are usually described in terms of psychological distress, internal conflict, and powerlessness. One concept that has proven helpful in research with paid carers such as nursing staff is that of moral distress, and it may be that this is also an issue for unpaid or family carers. An initial systematic review with narrative synthesis explored caregivers’ accounts of their experiences within the domestic home setting caring for people with dementia. Caregivers’ account of experiences related to a description of burden, loss, grief and how they deal with challenges while caring for someone living with dementia. The conduct of this empirical study was informed by the results of the review. Research question What are the narratives of care provision by family carers, and how do they describe their experience of home-based care for people with moderate to advanced dementia towards the end of life? Design and methods A narrative inquiry design was adopted using unstructured interviews with family carers for people living with moderate to advanced dementia and cared for within a domestic home setting. Participants were purposively selected and recruited through UK organisations offering services both to the family carers and the care recipient. A narrative technique was employed in data collection and a textual narrative approach was adopted in analysing the data. Findings Fifteen participants took part in this study. Their narratives were presented under five headings of loss, control, role change, coping and help-seeking. Their experience of moral distress was moulded by the internalised conflicts encountered in caregiving. Discussions and conclusions Caregivers experienced role transformation as an unanticipated response to the dementia diagnosis of the person they cared for. This transformation makes the performance of a perceived moral duty difficult, and hence a reason for the reported feeling of powerlessness. The moral distress was experienced at the point of the necessity of a moral course of action during the fulfilment of the caregiver’s perceived moral duty. A policy on stage-specific post-diagnosis support for unpaid home-based caregivers is necessary for reducing the unsuitability of support received within the moderate to the advanced stages. Interventions for alleviating the impact of caregivers’ negative experiences at an early stage of the transformed role is also necessary. Further research is, however, necessary to explore whether increased internal conflicts may lead to an increment in caregivers’ moral distress.