Emma Wolverson, one of the Programme Founders for the University of Hull Online's MSc in Dementia, responds to a report by The Alzheimer's Society about the devastating impact of COVID-19 on the lives of people living with dementia and their families.
The title says it all really – ‘worst hit’. The Alzheimer’s Society in the UK has just published a report bringing together information from a range of sources to highlight the impact of COVID-19 on people who have dementia and those who care for them. Although as a clinician working in dementia care none of the findings were are surprise, pulling them together in this way makes for an incredibly distressing read.
The report sets out how COVID-19 has devastated the lives of people living with dementia and their families and the headlines are stark:
Concerns about end of life care
More than a quarter of those who died in England and Wales with COVID-19 had dementia, which makes it is the most common pre-existing condition for COVID-19 deaths. Yet people with dementia have still not been identified by government as an increased risk group. What the report doesn’t tell us is what care these people who lost their lives received at the end of their life and this is a worry because the research suggests that even before COVID-19 many people with dementia were not being supported to die well.
Isolation and loss of connection
The report highlights the devastating impact of social isolation on people with dementia, with many people reporting a more rapid progression in their dementia as a result of their isolation. We have all no doubt seen and read about the human rights concerns highlighted by a blanket ban on visiting people in care homes and read stories of connections with relatives lost as a result. This isolation and loss goes against everything we know about what helps people with dementia to live well.
A decline in the diagnosis rate
The report also states that the national dementia diagnosis rate has declined steadily since February 2020 and this is a real concern for the future as people will be trying to navigate health and social care systems without a diagnosis or services having an understanding of their needs. Getting a diagnosis allows people to plan for the future and share their wishes while they can and many people will lose this opportunity.
The impact on carers' health
Importantly the report also highlights the impact on family carers who have spent even more time caring for their relatives with dementia (92 million extra hours) and many carers (95% of those surveyed) report a negative impact on their own mental and physical health as a result. For many this has been compounded by peer support groups and local charity groups closing down, particularly as the move to an online delivery of support will not work for everyone.
Frontline workers need support
I was pleased to see the report highlight the impact on paid professional carers and the 268 social care workers who lost their lives with COVID as frontline workers. The report is very clear that social care was not supported in the same way the NHS. It is crucial that we think about what support frontline workers need and where they can access this.
Change is needed
It is easy to feel overwhelmed reading the report but as the CEO of the Alzheimer’s society states ‘we must not feel powerless’. Those of us working in health and social care have long been aware that the system has been failing people with dementia. COVID-19 has simply made it plain for all to see that there is no doubt that things need to change and that people with dementia and their families need better support. I hope that this report can be used to argue for change #FixDementiaCare
Want to explore this topic further? MSc in Dementia Programme Founder Dr Emma Wolverson and Programme Director Dr Liz Price have made five statements to challenge how you think about dementia care: