Moral Distress in Moderate to Advanced Dementia Care - MDIG001
Research type
Research Study
Full title
Moral Distress in Moderate to Advanced Dementia Care: An Exploration of Informal Caregivers' Experience of Home-Based Care Provision towards the End of Life.
IRAS ID
231253
Contact name
Catherine Walshe
Contact email
Sponsor organisation
Lancaster University
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
In the UK, the prevalence of dementia diagnosis is increasing, and about 850,000 people are currently affected. This is projected to increase to over 2 million by 2051. While a large number of people diagnosed with dementia are cared for at the end of life in locations such as care homes, evidence shows that a high preference for home care towards the end of life is reported by people currently affected, and their family. Where given, this is mainly facilitated by informal caregivers.
In caring at home for people with a moderate to advanced dementia towards the end of life, some informal caregivers have reported their experience of internal conflicts. Account of similar experiences have been given by healthcare workers in other environments,such as hospitals. While these accounts have been explored and described as moral distress, experiences of informal caregivers are yet to be investigated.
This study will elicit accounts from informal caregivers providing home-based end of life care to people with a moderate to advanced dementia. The study will adopt a narrative inquiry design using unstructured interviews to collect data from between 20 and 30 informal caregivers purposively selected based on variability of the level of dementia severity in the people receiving care within the East of England region of the UK. Participants for the study will be recruited from domiciliary care agencies from where people with dementia may receive care, and support groups for their caregivers.
The data collected from interviews will be analysed using Riessman's (2008) narrative inquiry approach, and the findings will be used to propose approaches which best support informal caregivers while providing a home-based end of life care to people with a moderate to advanced dementia.
Lay summary of study results: Background The numbers 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 informal caregivers, 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 informal caregivers 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 informal caregivers and the care-recipientcare 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. A characteristic plasticity of an experience of moral distress was found as possibly moulded by the internalised conflicts encountered by the carers in caregiving.Discussions and conclusions
A role transformation is experienced by caregivers 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 reported as a result 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 distressREC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
18/WM/0001
Date of REC Opinion
14 Mar 2018
REC opinion
Further Information Favourable Opinion