Care home report calls for more recognition for care home staff
‘Fear, uncertainty and lack of clear guidelines’ made pandemic worse for those with dementia
A report by the University of Bradford highlights the fear and uncertainty experienced by care home staff and residents during the pandemic.
The Centre for Applied Dementia Studies includes moving testimonials made at the height of the pandemic from care workers, those in care and their relatives.
The report is being highlighted during World Alzheimer’s Month and follows Prime Minister Boris Johnson’s recent announcement to overhaul how care homes are funded.
Looking for the Light: Findings from the Coronavirus and Dementia in Care Homes Study, is a moving testament to the fortitude of what has been described as the ‘forgotten workforce’ - those who laboured day and night to care for those living in care homes.
It includes firsthand reports from carers, residents and relatives, including harrowing accounts of carer’s having to watch people struggle to breath in their dying hours.
It says: “During the first wave (March-June 2020), around half of all coronavirus–related deaths in England are believed to have taken place in care homes and a study of 9,081 care homes found that 56% reported at least one confirmed case of Covid-19...
“Knowing that age and comorbidity were key risk factors for coronavirus, it should have been easy to predict that the care home population with dementia would be at extremely high risk. Yet, this was barely acknowledged by the Government or the media for many weeks after the pandemic began. It was as the real toll of the pandemic on care homes started to be revealed in the late spring of 2020, that we decided to undertake this study. Read the study.
“At a time when we are all looking for a light at the end of the Covid-19 tunnel, we hope it will help to raise awareness of what really happened in care homes during the pandemic of 2020-21.”
Fear and grief
Approximately 420,000 people over 65 were living in care homes in the UK at the beginning of 2020, and around 75% of this population had some degree of dementia. The report was conducted in three stages over several months and included 20 dementia care practitioners in homes across the UK but also in Germany, Canada and Australia. It asked staff to keep a photo-diary and gathered written testimony.
It says: “Fear, uncertainty and lack of clear guidelines were the most vivid memories of the early weeks of the pandemic and the first lockdown. In the following weeks, participants commented that guidance was changing all the time and staff felt that making the right decision about crucial aspects of care was very difficult. In some care homes, many residents became infected with coronavirus and some died. Staff had to deal with unprecedented circumstances whilst also coping with their own fear and grief and, increasingly, with feelings of guilt and helplessness.”
It also highlighted specific - and often tortuous moments, including staff anxiety over the lack of PEE, frequent rule changes, the lack of family visits - one relative described the lack of contact as being ‘like a prison visit’ - and how some staff even came to fear the sound of a cough.
However, it also reveals how some working relationships blossomed during the pandemic, with workers, some often working 18-hour shifts, having to rely on one another more than ever. There was also the welcome sound of birdsong (audible due to limited traffic levels), while others even reported hearing sheep bleating.
But the peculiar circumstances in which care homes found themselves took their toll on staff, residents and their relatives.
Looking for the Light calls for:-
- Adequate recognition and reward for care home workers
- Upholding of employment rights
- Absence of blame attributed to any individual
- A culture which neither forces people to talk, nor prevents them from talking, about what they have experienced
It concludes: “We all need to do what we can to ensure that this kind of culture is promoted for ourselves and our colleagues. Some emotional reactions are likely to be delayed, so do continue to look out for them in yourself and others. Whatever supports your own wellbeing will also enhance the well-being of people living with dementia and their families.”
The research was carried out by: Dr Andrea Capstick, Dr Ana Barbosa, Ms Clare Mason and Dr Giorgia Previdoli, together with students in the Faculty of Health Studies and members of the Experts by Experience panel at the Centre for Applied Dementia Studies, University of Bradford.