Affiliation:
1. Founder Trustee, The Pam Britton Trust for Dementia, Leamington Spa, UK
2. UKRI Future Leaders Fellow and Lecturer, Health Humanities and Health Sciences, Department of English, King’s College London, London, UK
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.
Funder
UK Research and Innovation
Subject
General Social Sciences,Sociology and Political Science,General Medicine
Reference67 articles.
1. The Psychological Impact of COVID-19 Pandemic and Lockdown on Caregivers of People With Dementia
2. Alzheimer’s Society. (2020 29 September). ‘Exhausted’ family and friends spent 92 million extra hours caring for loved ones with dementia since lockdown. https://www.alzheimers.org.uk/news/2020-10-05/exhausted-family-and-friends-spent-92-million-extra-hours-caring-loved-ones
3. The Politics of Neurodiversity
4. Self, Senility, and Alzheimer's Disease in Modern America
5. Cruel Optimism
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