Trial Status: Open
Older carers (over 70) 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 frustrated 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 ÒeasementsÓ. Eight local authorities triggered easements at the height of the pandemic, and many others withdrew services nevertheless. We know very little about the consequences for people with high levels of need, nor about the needs and challenges facing local authorities and those charged with safeguarding during this very difficult time.
This NIHR-funded research investigates these issues. We aim to compare experiences in different local authorities for older carers, and for 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 social impacts and legal implications of this suspension of legal rights. The research is being conducted in close collaboration with partners TIDE and Making Space to ensure that the research at all stages is driven by the lived experience of carers. We plan to interview in depth 48 older carers across four different local authorities (two which triggered easements and two which did not) and twenty safeguarding and social work leads, about their experiences. Drawing on this analysis we plan to survey 500 older carers, to scale up our findings and provide a substantial evidence base for government, individuals and organisations.