Rules about visiting Care Homes
The science of Covid
Risk to care home residents
We need individual risk assessments for care home visiting
Everything has changed and nothing has changed. Fast testing is the only answer.
I have been writing a blog with advice about visiting in care homes for a week now. The reason is has not been published is that every time I go to press “send” something changes. This constant change the situation about visiting means that it is difficult to write about it. But how much more difficult is it for care homes to implement the rules? And how impossible for relatives to understand what to expect and what they can do to be with their family member in a care home.
There is a parallel between regional or national “lockdown” or “circuit breakers” and restrictions on visiting. Lockdown and circuit breaker language is metaphorical. It implies that the Covid disease is like a flow, and if you break the flow, it will go away. Actually it works more like a tap. The local hard rules turn off the tap, but when you turn it on again, the problem just comes back unless you have done something else in the mean time, like blanket testing and tracing and border controls. It has the advantage of stopping the hospitals and health service from being overwhelmed for a bit, allowing them to catch breath, but it does not stop the disease coming right back like before. What this means in care homes is that if you restrict visiting, in the absence of changes in the local prevalence of Covid in the world outside the home, you may delay the time when the Covid enters the home, but at a terrible cost to the residents and families.
Yesterday I met a man who has been able to visit his father in a care home once in four weeks (I am writing this on October 19, 2020) for twenty minutes. He is one of four children and they rotate the visiting right. The father knows who he is as soon as he arrives, but according to staff, between visits, has difficulty in recognising the names of his children and wonders why no one ever comes. Of course they are coming as often as they can, but it feels like for ever for the father, and the children feel as if they are failing him.
You MUST do what your regulator says
Before anything else, it is important to say to any care home that you MUST do what your regulator says, and public health, and the government and your insurer. These comments here are not telling anyone to defy them because they have a lot of power over and we are at their mercy. And remember they can change the rules at a moment’s notice. But the rules are just not right at present and they have been wrong for such a long time.
These are arguments that we all need to make in order for the visiting rules to be changed
All I am doing here is outlining the arguments that we all need to make to get the visiting rules changed in the interest of people with dementia living in residential accommodation. When presenting an argument any writer is rightly asked for evidence. Published evidence in peer reviewed journals is regarded as the best quality, but that process takes more than six months, which is about the length of this difficult period so far, and in the current crisis gathering raw data is not a priority for providers, and a great challenge for researchers. So we are dependent on expert opinion and consensus, and extrapolating from what we already know about the welfare of people with dementia. Anecdote is not data, but we are having difficulty in getting data, even in easier to measure things than the effect of visitor restrictions.
Have Covid rules changed?
And of course in the last week since I started to write, the rules have changed…..or have they?
There were announcements in England and Scotland about a relaxation of the rules, but they really don’t make enough difference according to the families in touch with me.
Just when the quarantine time for my mother had passed, the 28 days, two other people in the home tested positive and the clock went back to zero. I’ve not seen her for three months.
Campaigners, families and friends were very pleased that there was movement in the regulation, but it still feels as if not enough is being done for those for whom time is running out for those last hugs, those last conversations, those final moments. And time is eternal for those alone and waiting for visits. No matter how wonderful and successful the strategies of the care home workers to comfort, distract and entertain the residents, the fact remains that they need their families. You only die once, and how you died is something that stays with your family for ever.
So what is the science and what are the facts that we are fighting with? This is not to blame anyone. The devastation is caused by coronavirus, not people. The fight is to help people to respond in the right way.
In summary, my case is this
Visiting is vital for people with dementia
There is a balance of risks between risk from Covid and risk from Covid related visiting restrictions
Care homes have to do what they are told about visitors
The rest of us can argue with the authorities to make sure care homes are only being asked to do sensible things
A care home is not a health setting, but a social care setting – it’s their house. Trying to make it like a hospital is as wrong as if someone broke into your apartment or bungalow and stripped out all your possessions to make it easier to clean under new government rules
The risk from a visitor bringing Covid into the house is a known risk BUT must be taken because visits are an absolute necessity for people with dementia, and infection risks from visits can be mitigated by safety measures far short of trying to create a clinical sterile safety zone
The mental health risk to families and visitors of enforced separation in the months before death must be remembered
Some safety measures that are being applied to visits are poor value for money, time consuming and restricting visiting unnecessarily
The risk from other people coming into the care home has been arguably greater because up till now residents have been admitted without testing and other staff, such as district nurses who would have attended many homes have also been in the homes without testing. The flaw in the argument is the idea that visitors are, unlike staff and district nurses, inessential.
If some of what is in the above list seems repetitive, it is because it needs repeating. We need to say it in as many ways as possible because not enough people seem to be listening. Our actions should be based on the facts about Covid.
How is Covid spread? Understanding this is vital to getting the right visiting rules.
How is Covid spread?
Person to person via virus in droplets that get into your body eg through your mouth or nose. These droplets hopefully drop to the ground or surfaces before they travel to your own face. How far they travel before landing harmlessly on surfaces other than you depends on how the infected people are projecting their infected breath eg singing v whispering; shouting v talking; coughing v breathing.
Person to person via objects contaminated by droplets, if you touch the contaminated object and pick up the virus and transfer it into your body eg through your mouth or nose
Aerosol - where you breath in minuscule droplets breathed out by others that are so light they never land on anything, but they contain virus particles that float in the air and can be breathed in. These tiny particles are there no matter how softly people speak, and even if they wear masks, and over time they can build up in a room.
Does the number of viruses matter?
Yes. Your body can resist some infection, but the more concentrated amount of any virus, the harder it is to resist.
This is why meeting people out of doors is safer because the virus numbers are diluted to almost zero as your breath floats away
It is why an unventilated room is a problem as the viruses build up over time when each infected person breathes out, and viruses keep building up in concentration like a smog
This is why cleaning all the surfaces in the room has a limited effect. Even if it reduces the risk from surfaces it will not sift the viruses in aerosol out of the air in the room. Even if the surfaces in a room are contaminated badly you can reduce your own risk by washing your hands and not touching your face.
Washing your hands matters, because even if you touch virus and it sticks to your fingers, you can kill it by proper hand washing
This is why touching your face with unwashed hands is dangerous, because you are possibly transporting viruses from things you touched, right to your most vulnerable place, which is your nose, eyes and mouth.
Care homes have a lot of residents with dementia. And recently they’ve been badly affected by Covid. What can you expect from a person with dementia in the worst case (in terms of Covid)?
If agitated and restless they will move about a lot and touch everything even when reminded not to. Then they will touch their own face including mouth nose and eyes, - so surface cleaning and helping them to wash their hands regularly is especially important because of their behaviours.
If distressed they will become angry and aggressive because they do not understand why they have been “abandoned” and they will imagine that they are in prison. Incidents may lead to prescription of sedation as a last resort. On the other hand they may become passive and depressed and stop eating. Agitation and falls will increase, and other concurrent infections leading to death.
Is it always terrible? What about a person with dementia in the best case (in terms of Covid)?
The person will be calm and placid, chatting with others or dozing in a chair, perhaps not getting up and about independently to a great extent
They will help themselves to food and drink placed in front of them and enjoy conversation, and entertainment.
If confined to bed at the end of life they will only have contact with their bedding and the hands of their carers.
Visitors are being extremely restricted:
It is as if they are seen as a high risk vector of bringing Covid in to the home, or of taking it back out into the community. What can you expect from a visitor?
A visitor will have the interest of the resident at heart
They can be helped to understand and will be able to follow instructions
The visitor may wish to visit frequently and for a significant length of time
They will understand why they need to stay away if they, or anyone in their house, or contacts, is Covid positive
Logically therefore the biggest risk to a care home resident is:
A poorly ventilated place
A person who is infected who spends a long time in that poorly ventilated place
A person who is infected and who gets near enough to cause direct droplet spread
This risk analysis is not being reflected in the rules about visiting.
What are we seeing about visiting?
Here are some examples that I believe to be true of what has been reported or people have told me….
Everyone is doing their best in the care homes in most cases
Some authorities have made blanket rules that have no reference to dementia health, infection control knowledge, or the human rights of the resident.
Rules made early in the emergency may understandably have been poor, but in some cases, there appears to be no effort to catch up and review them
Some homes have constructed safe, comfortable, attractive, well ventilated visiting areas
There are examples of excessive surface cleaning between visits, which is used as a reason to restrict the visiting time, while adding little to the safety of the visit for the reasons explained above
Some places have front and back entrances to improve visitor flow through the building
There are examples of early and rigid restriction of visiting that gives kudos to the care home for low numbers of infections but where distress caused to relatives and residents is not measured - how do you know it was your visiting rules that stopped transmission. Maybe you have low infection rates in your community? And are your low numbers substantiated by testing?
Some places have excellent IT communications and have been able to give a sense of “being in touch” through virtual visits, with a focus and determination based on good equipment, training of staff, and investment of time
There are examples of parents who have not seen their adult children for six months, when they were once able to see them effectively every day
Some care homes have “bent the rules” in ways that offered no risk to residents but would cause trouble with authorities
Some residents who could have had visits without risk, have been denied those visits on the basis that everyone in the institution must be restricted equally
Rules about nominated visitors have divided families and placed burdens on the nominated person
The Point is…
Visitors are not the greatest risk to the well being of people with dementia in care homes. The greatest risk is from poor ventilation and the psychological effects of isolation. Blanket bans and restrictions make no sense. It is heartbreaking when one positive result (from tests that may not even be reliable and results that are a week out of date) causes every co-resident to lose visiting rights for a matter of many weeks.
What is needed is an individual risk assessment including but not limited to:
What was the usual visiting pattern? (priority given to habitually frequent visitors)
How compliant are the visitors? (an assessment of whether they seem to offer a particular risk, eg not willing or able to follow instruction or comply with masks etc giving rise to targeted limitation of visiting)
What is the design of the resident’s room? (French windows, completely opening windows, private toilet and shower, measured air replacement number of times per day? Room to sit with visitor at safe distance? Direct access to garden?)
Is there an alternative risk assessed safe visiting place? (eg visitor pod, visiting room)
How important to this resident is visiting?
Where’s the proof? My conclusion:
I have been asked for published evidence that the visiting rules imposed on people with dementia in care homes often do more harm than good, and that visitors are not the greatest risk. Such evidence is not yet available. I would respond with a request for evidence that many of the rules imposed, particularly later on in the public health emergency when people have had time to think, have achieved what was intended. So much of it now looks like pointless busywork, to defend against litigation.
Which brings us back to testing. There are rapid tests that could be used for visitors. I’d happily take a test and sit in the waiting room for a couple of hours to prove I’m safe before spending an afternoon with my mother. I’d agree to her being tested every visit for the same reason if you insist. Instead, because the woman in room 79 in the care home has a positive test, we are all in the cart for another month, another significant segment of the rest of her life. Fair testing is needed especially here, if not in the whole community. And the need is more urgent than governments seem to think.
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
See my new course on Dementia the One Stop Guide on Policy Hub here
