Dr Clarissa Giebel is a Dementia Care Researcher at the University of Liverpool and the NIHR ARC NWC. She tweets @ClarissaGiebel. Dr Emma Vardy is a Consultant Geriatrician and Clinical Dementia and Delirium Lead at Salford Royal NHS Foundation Trust. She is Chair of the BGS Dementia and Related Disorders Special Interest Group. She tweets @emmavardy2.
Although we’ve been in the grip of the pandemic for a little over a year now, in reality it feels more like a decade, with new restrictions, new lockdowns, and fortunately - thanks to vaccines and increased testing -, finally some new emerging hope that we may soon regain a semblance of normality.
Care homes have been significantly affected in the last year, with prolonged closures to the outside world, and every care home seemingly implementing their own restrictions as guidance has been poor. Our research considering how people with dementia living in the community have been affected by the pandemic has shown that many people have deteriorated faster (Giebel et al., 2020). This is likely due to the sudden withdrawal of social support and social care (Giebel et al., 2021a), including day care centres or support groups, and the lack of cognitive, physical, and social stimulation by being restricted to the home. Sadly, some unpaid carers we interviewed told us how it was not feasible to support their relative with dementia at home any longer due to the lack of usual social supports, and therefore some people with dementia have needed to enter care homes much faster than anticipated (Giebel et al., 2021b) as a result of the pandemic.
This is difficult in itself and highlights the growing need for care homes despite understandably widespread concerns about entering residential care in the current climate, given the associated restrictions. At any point in time, we want to try and support people with dementia to live well, and independently, in their own home for as long as possible.
For those living in care homes since the beginning of the pandemic, and those that have entered since, life has changed drastically. If you live in your own home, you may also live with your relative, or may at least regularly see someone important to you. If you live in a care home, you may struggle to understand the enforced restrictions (Giebel et al., 2021c), and you will have been unable to see your relative for a very long time, and similarly, family members will not have seen you, either. Realising this is a big issue, we wanted to understand how visits were enabled in care homes, and the experiences surrounding those visits.
We therefore spoke to family members of care home residents with dementia and to care home staff in October and November last year, and then again in March. Overall, we conducted 62 interviews.
Back in October/November, decisions around care home visits, and also care delivery, were underpinned by significant concerns surrounding infection risk [note: paper currently under review]. These restrictions seemed to be detrimental to the wellbeing of residents, and their connections with family members. There was a clear lack of guidance and communication between care homes and family carers, but also between decision makers and care homes. As a result, each care home had to decide independently how to manage the fine balance of infection control versus good care.
Let’s not forget the impact on staff during the pandemic, too: sourcing PPE, arranging testing and logging results, staff sickness, social distancing and arranging pod or window visits have all added to the workload. Usually, people can visit a relative in a care home at a time that is convenient, with no need for a member of staff to be present, but this has not been the case during the pandemic. Staff are needed to set up Facetime, Zoom, and skype calls, or to sit with the resident behind a pod screen. There is also the emotional burden of dealing with infection outbreaks to consider. Overall, we must acknowledge that the role of care home staff has considerably changed, and staff have needed appropriate training, but also psychological support to deal with the stresses of their job.
When vaccines came into play, we decided to follow up about half of our sample in March 2021. We did not know then that visiting arrangements would change, with first one, then two, essential visitors being allowed into the home.
We are still writing up some aspects but found that whilst increased testing and vaccination did enable some visits, many visitation rights were still delayed (Giebel et al., 2021). This was also, again, due to a lack of communication from the government and decision-makers to care homes, with care homes only finding out about changes to essential visitor options on the day.
Visits were not enabled for everyone, and family members had become increasingly frustrated, and angry, with the care homes. Picture your loved one sitting behind a pod screen with a member of staff, who may or may not have been vaccinated, whilst you sit on the other side, adhering to all restrictions, and fully vaccinated. You might wonder why staff are allowed to be so close to your relative, yet you, with as much protection and immunity as possible, are delayed in holding their hand.
Sadly, families and residents won’t get this time back. Many residents will have deteriorated over the course of the pandemic, just like people with dementia in the community. What we need to do now is take learning from what went wrong, and ensure that the human rights of care home residents are duly considered with respect to family contact.
To end this blog on a more positive note though, it seems that family members are getting those visits now, in some form or another. If the Government were ever to impose care home closures again, we are now starting to build evidence that directly demonstrates how detrimental this is to not only the residents, but to their families as well.
Afterword by Dr Emma Vardy
This blog by Dr Giebel is timely, given we are nearing the end of ‘Dementia Awareness’ week. I was inspired by her talk at the BGS Spring Meeting and was keen for her to share her work more widely.
Care home visiting has been a contentious issue during the COVID pandemic with government guidance and local policy on infection control balanced against the damaging effects of social isolation and lack of human contact for older people residing in care homes. As Dr Giebel highlights, we have the hard evidence of the negative impact this has had, particularly for those with a diagnosis of dementia. The harm associated with the pandemic through social isolation has been borne out in excess mortality for people with dementia and increased rates of prescription of psychotrophic medication. The pandemic has also impacted many relatives, who have had to come to terms with complex grief following the death of loved ones, perhaps sooner than anticipated, with reduction in social contact prior to death (Downar and Kekewich, Lancet Respiratory Medicine, 2021). In parallel, care home staff have been under unprecedented pressures and worked extraordinarily hard, having the unenviable task of balancing requests for visits against the risk of COVID infection in care homes. It has become evident that preventing visits from loved ones has not prevented COVID outbreaks in care homes.
A recent Lancet publication (Downar and Kekewich, 2021) sums these competing pressures up perfectly in the question: ‘How much psychomorbidity is justified by the prevention of a single COVID-19 infection?’ This same publication also recognises that facilitating visiting under these circumstances risks staff burnout. COVID infection rates in care homes are quantifiable, however the harms as described, of the impact of restrictive visiting policies on residents, are less easy to measure; this is why Dr Giebels’ work is hugely important.
During the pandemic there has been variation on how care homes have addressed the issue of visiting from loved ones, and some have implemented visits very successfully, using tools such as PPE and hygiene measures to reduce infection risk. It is important to recognise that the landscape is different now compared to the start of the pandemic. The vast majority of care home residents have been vaccinated, having been a priority group, and now a significant proportion of care home staff and the general population have also received the vaccine. Updated government guidance for care home visiting was implemented on 17th May. I dearly hope that there is consistent interpretation in such areas as to what constitutes an essential family care giver, and also when 14-day isolation is necessary for those residents who have been outside the care home.
To conclude, the restrictions on care home visiting have been a source of great distress to some care home residents and their loved ones, and my personal wish is that we do not revert to any amendment of visiting policy in the future that might conceivably duplicate the previous harms, given the lessons we have learned and the research evidence available. Above all, let us remember one of the founding principles of our Society: to champion the provision of the best health and social care for older people, particularly those without a voice, such as people with severe dementia; and to support those who care and work with older people to be able to deliver it.