COVID blog #14: Coronavirus and Dementia in Care Homes

Across the globe, the COVID-19 pandemic has had a major impact on those who live and work in care homes. In England, a study of 9,081 care homes found that 56% reported at least one confirmed case of COVID-19 and that 20% of residents and 7% of staff tested positive (Comas-Herrera et al 2020). Around half of all coronavirus–related deaths in England are believed to have taken place in care homes. Since the beginning of the pandemic, care home staff have been experiencing heightened stress, burnout and trauma, dealing with new and unusual circumstances, which many were unprepared for.

In June 2020, Dr Andrea Capstick received funding by the University of Bradford to carry out research on the experiences of staff working in care homes with people living with dementia during the coronavirus pandemic. Twenty members of the care workforce and three members of a Public and Patient Involvement (PPI) advisory group were recruited. The resulting study, Coronavirus and Dementia in Care Homes (CoDeC), captured the impact of the pandemic on those working in care homes by collecting a range of data, including spoken, written and photographic testimony about their experiences.

Key findings suggested that the social care workforce in dementia care felt frightened and traumatised by events during the pandemic, and that they often felt marginalised and ‘invisible’ by comparison with NHS staff:

“There was all that support for NHS, as in you know, this is what they need. They need the PPE, they need them … but we needed it as well and we couldn’t actually get hold of it. We had to ring round the local vets and dentists asking for gloves, because our order of gloves wasn’t guaranteed to come. So, we were sort of beg, borrow and steal them from whoever we could get them from.” (P05)

A rain window- how I felt and what was happening around me. Window contact happening in care homes, dark clouds finding it hard to see out through this.” (P17)

Participants had frequently found official Covid-19 guidance confusing and difficult to follow:

 “I don’t think anybody wanted to literally be led by their hands, we felt just very overwhelmed that there was no clear direction. There was a lot of questions being raised by family members that we didn’t have answers for. A lot of questions being raised by staff around their safety and wellbeing that we didn’t have answers for.” (P02)

Staff found that social distancing and quarantine arrangements exacerbated the confusion already experienced by people living with dementia, and that this, combined with the bar on family visits, led to deterioration in the well-being of their client group.

“Once we went on isolation [Henry’s wife] was no longer able to come in to be with him. She still would come daily to visit him at his window but there was no touch exchanged, no holding of hands, washing his face or giving him a kiss.  He declined quickly after this and passed away with his wife at his side (thankfully she was able to come in to visit in person during his final days).” (P04)

Almost all participants mentioned feeling powerless and guilty about some aspect of the care they had been involved in providing:

“You kind of doubted yourself, that you’re not offering enough, when you used to, like, referring to services and sort of coordinating and navigating that care for somebody. But feeling quite powerless that you can’t do that” (P16)

Nevertheless, participants also told us of many creative coping strategies  they had adopted to deal with current circumstances and shared the amazing teamwork that have enabled services to keep running:

“I thought this care home really appreciated the psychological impact of social contacts and really thought out-the-box, going above and beyond to promote contact for their residents who were not on ground-floor levels. Just a shame the council couldn’t allow it to go ahead.” (P27) 

Things that helped me cope, wax melts in the evenings to help be calm and relax, especially during some late evening working which was required due to increasing work demands.” (P17)

What will happen in the aftermath of Covid19? Uncertainty about the future was also highlighted as a concern:

 

“This picture symbolises my concerns for the future – the uncertainty of which way to turn and whether we are going in the right direction.” (P11)

 During the project, participants wrote a series of blog posts that provide a unique insight into the experience of Covid-19 in care homes. These blogs have been posted here.

Overall, our results intensify the need to ensure care home staff is supported to recover and build resilience in the aftermath of Covid-19. Finding ways to best to support this under-researched population is vital and will enable care homes to retain their experienced staff. We are now working with participants to co-design a booklet to share participants’ testimonies and aiming to help care home staff look after themselves and people living with dementia. more research also needs to be done to enable them to retain their experienced staff in difficult times.

If you would like to find out more about the study and/or be involved in this or similar research, please contact Dr Andrea Capstick on a.j.capstick@bradford.ac.uk

Dr Ana Barbosa, Mrs Clare Mason, and Dr Giorgia Previdoli were also involved in the project.