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.
REC 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