Informal dementia care: The carer’s lived experience at the divides between policy and practice

Abstract

Support for informal dementia care at a local community level is not working for most carers today. Carers looking after a person with dementia have long lamented the absence of an empowered named support and an effectively actioned care plan. Drawing on literary writing and social research, we argue in this article that these challenges have existed since dementia emerged as a major condition in the West during the 1980s. Based on this historical context, we ask: Why has this issue persisted over the last four decades? How have healthcare politics and policy initiatives responded to these requests? And what can we learn from this for the current, COVID-19 exacerbated crisis of care? This article focuses on the English context, to discuss these ongoing challenges in the light of a series of policy papers, and to ask what is hampering the implementation of such policy initiatives. In England, local authorities are responsible for dementia support. This article focuses on the situation in a county in the Midlands where one of us (AB) has been lobbying local government for over a decade. The discussion contextualises the lived experience of dementia care within the situation exacerbated by the COVID-19 pandemic, ensuing politics of crises and persistent emphasis on cure over care. We find that the absence on two points centrally challenges care: a joined-up approach between health and social care and adequate information on available care support services, accessible through an empowered named contact. To enhance the lived experience of dementia care, consistent provision of individual named support and professional care support, as and when required, should become essential to local implementation of the care policy.

The legacy of COVID-19 in dementia community support: ongoing impacts on the running of meeting centres

“…Much of what participants reported concerning the impact of the pandemic was congruent with reports from the wider health and social care landscape. For example, the impact pandemic-instigated isolation had upon people affected by dementia and the accelerated decline they experienced as a result (Alzheimer’s Society, 2020; Age UK, 2021; Giebel et al , 2022a, 2022b); and continuing difficulties with delays and access to health and social care support, as services struggle to recover (Bhome et al , 2021; Britton and Zimmerman, 2022; CQC, 2022). The difficulties reported by participants in recruiting staff are reflected in UK-wide data, with a recent House of Commons report stating: “The National Health Service and the social care sector are facing the greatest workforce crisis in their history.” (UK Parliament, 2022).…”

“…Since the lifting of pandemic restrictions in the UK, older people have experienced continued impacts, including increased anxiety and low mood, reduced mobility, loss of social skills and loss of confidence in engaging in previously routine activities (Age UK, 2021). The pandemic is also thought to have exacerbated existing dementia support issues with UK adult social care (Britton and Zimmermann, 2022). Access to health and social care support continues to be difficult and delayed for many due to what the UK Care Quality Commission (CQC) calls a "gridlock" caused by reduced service capacity (CQC, 2022).…”

“…with UK adult social care (Britton and Zimmerman, 2022). Access to health and social care support continues to be difficult and delayed for many due to what the UK Care Quality Commission (CQC) calls a "gridlock" caused by reduced service capacity (CQC, 2022).…”