Predominantly old; care homes and the pandemic of 2020
How Covid 19 is affecting and will effect care homes now and in the future
Covid 19 analysis and care homes
Did more people die than expected in care homes due to Covid 19?
Why was there a mass hospital exodus into care homes?
Did Covid spread faster in care homes?
At the time of writing the UK has one of the worst death rates from Covid 19 in the world. The majority of those who died were in care homes.
Covid 19 and Care Home Analysis
In my analysis of what happened in the first half of 2020, I’m not just depending on official figures but also what I heard and saw first-hand in care homes and in hospital. In a typical visit to a care home, I was greeting by staff in masks and gloves who were grateful beyond measure for the donations of soap, shower gel and other toiletries that I had been given to deliver to them. As a nurse, I volunteered in my local hospital, until it became clear by May that there was no further need of me. The wards were almost empty. I was sent home early a few times with nothing to do and so I stepped back, leaving the door open to return if things got worse, or other volunteers got sick or ended their furlough from the day job.
Now back at my desk, journalists have been calling me repeatedly to ask for comment. They are short of time, and under pressure. During the pandemic, their lack of knowledge about how the care home system works, and of the care that older people and people with dementia need, meant that they jumped to false conclusions. I've spent a lot of time explaining what was not the case, trying to dismantle some fixed, false beliefs they had picked up second hand from other media sources. It is the case with news values, with the best will in the world, that a revealing a scandal will have more impact than a quiet serious explanation of the tasks you need to undertake to keep everyone safe, such as monitoring staff handwashing, colour coding cleaning equipment to prevent cross infection, communicating and documenting and asking people not to visit.
I know it is unexciting to describe systems that manage and monitor the prevention and control of infection, but they are there and they have been used. Care homes are inspected on whether they provide and maintain a clean and appropriate environment. They know they have to identify people who develop an infection promptly and get the appropriate treatment and care to reduce the risk of passing it on. They also have to educate and protect their staff in all these issues. No system involving human beings is perfect, but as far as possible, care homes were doing the right thing. There is no reason to believe they were any less motivated than the “heroic” NHS. That did not stop press and even political speculation that care home owners and operators are only interested in money and so would not pay for the correct infection responses including personal protective equipment.
It does not add up. It would actually be in the interest of any mercenary care home owner to keep his residents well. Vacant beds cost money, and they’ll soon be vacated if you carelessly let residents get sick and die. Even if a cynical observer points out that the bed will soon be filled, it is much more expensive to deal with a high turnover of residents, than a happy, stable group of people living out their last days in peace.
There was considerable media hype for those care homes where staff moved in, to shield their residents, with the result of a zero-infection rate. However, some care homes managed to maintain a zero rate while their staff were still going home and contributing at home, caring for their family and providing help for older relatives in their own homes. There was no right way and wrong way to do this. Everyone was doing their best. Only the dramatic got reported and were seen. Homes with extraordinarily high death rates were all over the papers. Care homes were indeed portrayed as dangerous places
At the start of the outbreak care homes were virtually invisible, except to the families who were now unable to visit their resident. Other families welcomed home their care worker mother or sister at the end of each shift – waving her into the shower before being allowed to hold or kiss her, boil washing her uniform in a separate bag wiping down her shoes, phone and backpack with bleach, taking her temperature and wondering how long they could go on like this. Over time they were also worrying about the extra vulnerability if she was a black woman, or overweight, or, like many of her fellow workers, over 60 years old. The majority of care workers are women, but the percentage of men from the BAME community who died was disproportionate. Everyone connected with care homes worried – the GPs, community nurses, care home staff, managers, owners, residents, relatives, local authorities.
In their attempt to make sense of the figures, many journalists and even politicians started to apportion blame to care homes and care home staff. They said to me “Clearly a care home is like a Petri dish for infection,” and “Of course the low skilled staff there would have no idea how to manage this” or “This just shows that profit has been put before care.” The idea that infection spreads through a care home because of negligence is usually false. Proving this is challenging because the information is poor, for example the published figures about who died from Covid were based on an unusual methodology. They counted and measured cases of “suspected Covid” in people who were never tested. They counted care homes as having been infected when only one case of “suspected Covid” had taken place, even if that case later proved not to be Covid. The total number of homes that had been “with Covid” mounted, even though some of them had never had it.
Even in some government published statistics about care homes there are no lists of Covid deaths, only “suspected Covid”. This means that numbers were counted when the people may not have had Covid at all and were never tested. It’s not clear how reliable this counting is.
Of course, whatever caused it, a larger than usual number of care home residents died. Are my arguments just quibbling? How can anyone argue with the fact of increased numbers of people dying in care homes? The press kept telling us, “Care homes have a duty of care,” with the implication that care homes were failing in that duty if anyone died.
So let’s look at some questions.
Did more people than expected die in care homes?
It depends on what you mean by “expected”. More than “normal” died, but we might have expected that. A significant number of those who died came from hospitals and were already infected with Covid before they left hospital and would have died either in hospital or wherever they went. It was probably not a ‘location’ that gave them Covid. Or if it was, the ‘location’ responsible was more likely the hospital. The average length of stay in a care home is about eighteen months. A few residents may stay for years but a huge number die within the year. It might not be unusual for a care home to have one death a week. The number of people who died was certainly more than usual. It is sad, but that does not sound an alarm, because that’s what you expect to happen in the public health emergency that is a pandemic. More people than expected die in every location. Healthy doctors and nurses. Bus drivers. Retired professors who sit on committees. Thousands died. That more of the deaths were in care homes is related to why anyone is in a care home in the first place. Age, frailty, concurrent impairments and disabilities, dementia, palliative and end of life care. That’s why they are there. The older you are, the more likely it is that you will not survive Covid. It’s not a death sentence because many did live through it. But for some, it was the last straw at the end of a long life that was already ebbing.
Why was there a hospital exodus into care homes?
There were two quick ways of getting more hospital beds fast. Build a Nightingale shed, and shift the old people into care homes. Having seen TV images of very sick people lying on the floor of hospitals in Italy, the UK health departments wanted to be sure that this would not happen here. They needed more beds to achieve that. Everyone knew that up to 30% of NHS beds were filled by older people who were medically fit but could not go home alone. What was the delay up till now? No good reasons. Only bad ones. The local authority or person with their power of attorney could leave them in hospital assuming it was a safe place, and their budgets are limited. They were not just delaying taken on the expense. As these were a few months at the end of life, they were redistributing the total expense, landing more of that on the NHS. The hospital could try to shift them out, but that only increased the heat for the NHS, as more patients requiring care would flood in, who were currently parked relatively inexpensively at home out of site on waiting lists. There was, and is, a perverse incentive to keep old people in hospital long after they need it. Usually that’s worse for them than getting out to a care home.
Over a very short time in April and May, thousands of old people in the UK were transferred at short notice from hospitals to care homes. And what was the result? In many hospitals, there were unprecedented numbers of empty hospital beds for weeks. Only some of this was achieved by cancelling treatments, and some was because people were too frightened to go to hospital. Social distancing probably meant fewer drunken fights and car crashes, the mainstay of the emergency department at the front door of the hospital. But the main drain was older patients who were disappearing out the back door as fast as care homes could be forced to take them, initially without even a Covid test.
You always claim care homes are better for people. Why not now?
For people who can’t survive at home, and are lonely, a care home is a place of respite, and good company, with a private room you can retreat to if you want to be alone. You can be visited there and go out on visits. You will be given a choice of food and all your laundry and housekeeping will be taken care of. Health care professionals will be called for you when you are sick. It sounds ideal, but many people still don’t fancy it. They might not fit in. They might resent the limits to independence. That’s why the transition must be managed respectfully. If possible a choice should be made from between a number of care homes. Visits and discussions should happen to be sure that the needs of the potential resident can be met in this place. A trial period is sometimes recommended. Your family and friends need to be involved and help you to move in.
I am sometimes contacted by families or authorities who are trying to prevent someone being moved from one place to another and considering a legal challenge. They know of the research that says care home moves can increase mortality and morbidity. Actually that is a simplistic misrepresentation. The right move, handled right, to the right place, can improve someone’s life immeasurably. It is being bundled about that is bad for frail older people, especially in cases of dementia. A majority of delayed discharge patients in hospital and residents in care homes have at least a degree of cognitive impairment, even if it is not diagnosed as dementia.
So care homes are better. But for any older person, being shunted there in an unplanned way with a lot of other people and very little assessment of your needs is bad for you. How on earth could staff get to know you and care for you properly, as if you were in your new home, if this happens? How could your family help to prepare you for it when they were not allowed to visit in the hospital or at the destination care home?
And it happened a lot. It’s not that care homes are bad. Pandemics are bad and the rapid measures we had to put in place were bad. Hindsight might make it better for the future.
Did Covid spread faster in care homes?
A care home is not a hospital. Some of the central guidance advised care homes to strip rooms of unnecessary furnishings, making it easier to clean. It was as if they wanted the homes to turn themselves into mini-clinical settings, when in fact they are really communal living settings. The advantages of a care home, over being left alone at home with intermittent care, is that you can mix with other people, eat meals together, go on trips, have entertainers in to sing to you, exercise and garden together. That’s not what hospitals are for. By stopping all the enriched activities of care home, you stop it actually being a care home, but it still does not turn it into a hospital.
Of course a virus will spread in any place where people are together, like when my cousin came home having caught Covid at work in a supermarket and gave it to his wife ( an intensive care nurse) and children within days. They all self-isolated and got over it in a couple of weeks. Infection will spread where you live. People in care homes live in a communal setting. It is hard to reverse that, especially when the residents don’t understand. Even if they do understand, they might call a human rights lawyer, because you can’t just lock people up for their own safety to prevent them mixing.
Some care homes have a big challenge, because not every room is furnished with its own toilet and shower, like you get in a hotel. Many have a quaint arrangement with a toilet and wash hand basin for each bedroom. A significant number have shared toilet and bathing facilities. Deep cleaning for communal areas is an extra challenge.
Care homes are generally good with infection. Every winter care homes have to deal with common winter problems such as norovirus, also known as “the winter vomiting virus” and flu. Because infection can cause havoc in a care home, they have policies in place, and homes are very experienced at controlling of infection. But people who live in care homes, because they are older and more frail, are more susceptible to infection. Care homes have clear information on the standards of infection prevention and control required. With 24/7 care from a range of staff, essential external visitors such as doctors and nurses, and a group of residents who cannot or will not follow guidelines, a break in the chain of infection control is one more risk among many.
There is evidence that the prescription of anti-psychotic medication increased during the lockdown period. An obvious interpretation of this is that sedation has been used to help with compliance on social distancing. Sadly, that medication would also hasten death in many cases. So the person died of ‘avoiding suspected Covid,’ not ‘Covid’ itself.
And what about dementia then?
Well, everything that is done to protect people against catching Covid is bad for people with dementia. Physical distance is bad for people who need touch because language has failed them. Face masks are frightening for people who don’t know where they are, and can’t get the reassurance of even a smile. Communication which is harder in old age because of hearing and visual impairment becomes ten times harder when muffled by a face covering. Communication is essential for reassuring someone with dementia. When left alone with food, they are much less likely to eat enough, if at all, so solitary meals in a room will be left uneaten. When starved of family company the person with dementia pines and dies. Or they may become more confused, banging on doors and windows to escape, and crying out, till they are eventually, for safety, given something to help them sleep. People with dementia who are not in a rich environment die faster. They just turn their faces to the wall.
In conclusion, the reason why the journalists can’t listen to me is because they don’t have time and they’ve had no reason so far to wonder about how the care homes system works and how older people, including those with dementia, can be kept well. They imagine a care home being a bit like the Best Marigold Hotel, with Judi Dench buzzing round on a motor scooter. They want so much for there to be a motor scooter. They’ve never walked down a care home corridor at the best of times, when, even then, in many rooms, old people are dying peacefully and comfortably in bed, surrounded by good care. What has happened the pandemic is so extraordinary that mistakes have been made and weaknesses in the system have been uncovered. Of course, there will have been care home errors. But the whole system has been fragile, and at fault, and magnificent when possible. The mirror needs to be turned on ourselves, for valuing low cost care and low taxes at the expense of planning and designing a system that caters for our population as it is now. Predominantly old. And in a pandemic.
If you would like more information, you can buy my book Dementia, the One Stop Guide or Care Homes: When, Why and How to Choose a Care Home. I am available for consultancy for families or organisations. And if you have any further queries or questions, or suggestions for something you’d like to see me write on, please contact me via the Contact Page
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