Title: The impact of Care Act Easements under the Coronavirus Act 2020 on co-resident older carers of partners with dementia
Funder: Department of Health and Social Care

Abstract: The Coronavirus Act 2020 contains the unprecedented power for local authorities to suspend the majority of their duties within adult social care under the Care Act 2014, leaving only a residual duty to protect human rights (&ldquo;easements&rdquo;). This proposal investigates the impact of easements on co-resident older carers (age 70+) of partners living with dementia in the community. Such carers typically have their own high levels of health and care needs, but are often isolated and invisible. Eight local authorities triggered easements between April and August 2020. Many others have suspended services without triggering easements, potentially exposing themselves to legal action. In the event of local lockdowns or a second wave, easements are part of the strategic planning of a number of authorities. We currently have no understanding of the consequences of care easements for the people affected nor how to mitigate urgent needs arising from easements, from either carer or local authority perspectives. There is little official guidance that applies meaningfully to these carers. The objective of this project is to investigate the impacts of care easements on older co-resident carers of partners living with dementia to make recommendations about the operation of this legislation now and in the event of another wave or similar pandemic. The project aims to: document the impacts of care easements and reinstatement of statutory duties; compare these with experiences in local authorities where easements were not formally triggered but services may have been cut; understand how policymakers with safeguarding responsibilities have approached the issues; understand and document current urgent needs. We will work with our established networks and project partners, and specifically with a co-production group of 8 carers. There are three workstreams: 48 in-depth interviews with purposively selected carers in 4 local authorities, (a) two where easements were triggered for sustained time and (b) two where no easements were triggered. In-depth interviews with 10 safeguarding leads and 10 social work leads about services retrenchment and easements, exploring processes, ethical and legal frameworks, and burdens of decision making. A survey of our population of interest, seeking to obtain 500 responses; this will be an observational non-probability non-randomised sample validating reported experiences at scale and with sufficient power to compare groups in easement and non-easement local authorities. This will be multimodal utilising online and paper methods, using validated question sets asking about coping, support, socio-demographics, health and wellbeing, and questions developed from interview data. Understanding the impact of Care Act easements is crucial for government, local authorities, care providers, NHS commissioners and providers, civil society, charities, individuals and their families. This understanding is relevant for the drawing up and implementation of emergency legislation, drafting guidance, providing/resuming services, arguing for resources and system change, and protecting human rights. Specifically, evidence on this problem will inform the six-monthly parliamentary reviews of the Coronavirus Act, proposed Parliamentary debates, safety and regulation, access to health and social care, funding priorities, and systemic understanding of social care in the pandemic.

Lay abstract: Older carers with partners with dementia living at home are facing extreme challenges under Covid-19, with withdrawal of services, restrictions on movement and high risks of illness and death. Some of those living with dementia cannot retain information about what is happening, and are increasingly agitated or distressed. Yet this group of carers is often invisible, and has received very little attention in the pandemic. Schedule 12 of the Coronavirus Act 2020 included the unprecedented power for local authorities to suspend the majority of their adult social care duties under the Care Act 2014. The suspensions are known as &ldquo;easements&rdquo;. Eight local authorities triggered easements at the height of the pandemic, and many others withdrew services nevertheless. Under the pandemic, triggering easements remains part of the strategic planning of a number of authorities. Yet we know very little about the consequences for people with high levels of need, such as older carers of partners with dementia at home. This proposed research investigates these consequences. We want to compare experiences in different local authorities for older carers, and investigate this issue also from the point of view of safeguarding and social work leads, who were making difficult decisions in crisis circumstances. Through doing this we seek to understand in a balanced way the wider social impacts and legal implications of this suspension of legal rights. The research will be conducted in collaboration with partners TIDE and Making Space. TIDE is a charity enabling carers of people with dementia to recognise their value and contributions, offering opportunities to influence policy and practice. Making Space is a charity providing health and care services which works with those affected by dementia and their carers to live more independent and fulfilling lives. We will also involve the PPI network of the Older People and Frailty Policy Research Unit to ensure that the research at all stages is driven by the lived experience of carers. We will interview in depth 48 older carers across four different local authorities (two which triggered easements and two which did not) about their experiences. We will also interview 10 safeguarding leads and 10 social work leads across different local authorities about their experiences. The interviews will explore ethical and legal frameworks within which decisions were taken and the burden this decision making might carry. Drawing on the in-depth analysis we will seek to survey 500 older carers to scale up our findings and provide a substantial evidence base. We will provide internal briefings to DHSC and partner organisations, interim reports for legislative reviews, briefing notes and lay summaries for stakeholders, and blogs/videos for public access on the project webpage, with two substantial online dissemination events, and three peer-reviewed journal articles.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL