The wellbeing of people living with dementia and their carers during the hospital discharge process : a qualitative exploration

Abstract

The hospital discharge process in England has been criticised by several organisations due to the perceived failure to support the physical, emotional, and social wellbeing of people living with dementia and their carers (Alzheimer’s Society, 2016). Despite the prioritisation of the term ‘wellbeing’ in policy documentation, there is limited evidence regarding the definition of wellbeing within the hospital discharge context. Against this background, this thesis presents the findings of a social constructionist, qualitative investigation into the experiences of carers of people living with dementia and clinicians and explores how the term ‘wellbeing’ is understood by both groups and what factors support wellbeing throughout the process of leaving hospital. Twenty-four semi-structured interviews with carers of people living with dementia (n=14) and clinicians (n=11) were subjected to thematic analysis (Guest, MacQueen & Namey, 2011), with codes identified from the data. Drawing on the theory of wellbeing outlined by Kitwood and Bredin (1992), an Appreciative Inquiry method (Cooperrider & Whitney, 2005) was utilised to identify changes that could support the wellbeing of carers and people living with dementia. Carers of people living with dementia frequently felt that their own wellbeing and that of their relatives was not supported during the hospital discharge process. This was especially the case in relation to policy guidance issued during the COVID-19 pandemic. Informal carers and care professionals identified that ensuring agency, personal worth and hope was crucial to defining and ensuring the wellbeing of both carers and people living with dementia during the leaving hospital process. Expert participants identified changes to the focus of the discharge process that would allow the wellbeing of people living with dementia and their carers to be prioritised. There is an urgent requirement for a change in the discharge process leading to assessments and decisions to be reconstructed to focus primarily on wellbeing for carers and people living with dementia.