London School of Hygiene & Tropical Medicine

In an interview with the live-in care provider Elder, Selina spoke about protecting the carer/care recipient dynamic during lockdown, practical advice to halt the spread of coronavirus and how the wider community can combat social isolation together.

Selina, what are the most important elements of self isolation that care recipients, caregivers and families need to be aware of during this time?

Self isolation is difficult for anyone and can often cause anxiety. A lack of social contact can trigger the urge to ‘catastrophise’, imagine the worst and compound feelings of helplessness. 

The problem we have is that COVID-19 is a new disease and we are learning new things about it every day. The mental health impacts of an unprecedented crisis like this are still unknown but lots of research is already underway to try to understand how it will affect different people in the near future and in the longer term. 

But we believe there are three critical things to consider when isolating while caring for someone.

The first is routine. Routine generally makes things easier for most people, but particularly when you're caring for someone, because there are inevitably routines for feeding or bathing, for example. Maintaining these routines adds structure to the day and maintains a sense of normalcy.

The second is connection. When you're caring for someone, it can be scary or concerning when one person in that dynamic is displaying symptoms. If anybody has symptoms, they need to self isolate, which can be frightening for carers. If there aren’t measures in place to replace them, it can cause disruption to any care plan. We encourage carers to think ahead and find ways in which, should they suddenly develop symptoms, they could isolate themselves for seven days without disrupting the care structure. 

Connection is often the most important thing for a person being cared for. The challenge there, however, is that when you can’t maintain face-to-face contact, you can become reliant on mobile and digital technology, such as video calls. You then need to ensure that people receiving care, particularly older people, know how to access and use this technology.

Certain care homes have been dealing with the effects of coronavirus for a while now. They've had the chance to start training residents in systems such as WhatsApp videos. Using programmes like this, along with Skype and Zoom, allows isolated people to access the outside world and the people that they love. 

The third and most important thing is, of course, hygiene. In this area, the key things are still the most important. Hand washing is absolutely critical. You need to wash your hands, ideally with soap and water. If you can't access open water, hand sanitiser will disrupt the membrane of the virus, which is sufficient. Wiping down hard surfaces frequently during the day with detergent is also really important. 

Hygiene measures are critical to protecting people in care. But if you focus entirely on that, the relationship can also be disrupted. It's really important to maintain routines and protect the personal connection between carer and care recipient - don’t let the person receiving care feel isolated or distant because you are spending more time cleaning or standing further away than you usually would.

For people who are receiving full-time care in their own homes, what role do their carers and family members play in maintaining their connection with the outside world?

It depends who's already part of that process. If a carer is already entering a care recipient’s home at set times in the day, it's really important to maintain that relationship as much as possible.

For example, if the person you're caring for develops symptoms, then we advise the use of a mask, which can be really frightening for the person who is receiving that care. If you are wearing a mask, try not to speak too much about the virus or the fear of the virus, because the mask itself can be quite frightening for somebody who's receiving care. They'll be used to a face and suddenly the face becomes less recognisable, which can cause stress and worry.

Constant talking is really important, though. For family members would normally visit and now can’t, it’s important to use technology to maintain contact. But it’s also important to find alternative ways of occupying the person who's being cared for, such as arts and crafts, DVDs, music, favorite radio shows.

It's really difficult and very challenging not to visit somebody who you love dearly. It can be the hardest thing because you don't know when you may see them again. Yet critically, that may be the only way that you can save their life. 

What advice would you give to anyone with a care-recipient or loved one who is refusing to self-isolate?

The first step is to communicate with the person you are caring for to try to understand them and their concerns and look for patterns in their behaviour.

Try to work out why they aren’t following the advice. Use simple language and avoid jargon, think about using non-verbal cues like pictures. Check that they aren't in any physical pain as this can often make people who suffer from dementia, for example, more restless. It’s also important to note that COVID-19 can also present with delirium, which can also lead to restlessness, so if the care recipient is acting out of character, consider that this may be a symptom. As frustrating as it may be, you should never stop anyone by force or restraint. 

As time passes and many elderly people become more lonely, they may begin to take more risks and re-enter the outside world. Watching the daily government news briefings can be a useful way to reiterate the instructions by ministers to stay at home. It can make these necessary sacrifices a little easier to accept because they are so universal. 

Ultimately, all that you can do is to try to understand the person's concerns, try to address them and explain why they must not go out. Hopefully, we will start to see the cases come down in the early summer and this may also help to show how effective isolation can be if people follow the guidance. The key will be to follow the advice at the time as it will be likely to change frequently, so keep up-to-date on the current thinking. 

Some live-in care conditions, such as Alzheimer’s, require constant monitoring and carer attention. What does self-isolation mean for the carer and care recipient relationship? 

This is an ongoing challenge for live-in carers who often do not have the support they need, which can place a huge burden on care recipients’ families to help maintain the care plan. Inevitably, the coronavirus will heighten that strain on resources, particularly because we need to spend more time cleaning or offering a greater level of care support to someone with symptoms.

There are plenty of supporting resources out there. Lots of community groups are also being set up to provide carers with additional support. There are also local government hubs being set up to provide additional support to the most vulnerable and some support is available to those with home care. So there ought to be different types of support at a local level that carers will be able to tap in on. 

But this is all happening very quickly and it can be really challenging for someone who's so busy maintaining their care duties to then find these organisations. For these people, the local mutual aid groups that are coming together to support local carers with food deliveries or pharmacy drops are an important source of relief. You can find your nearest one at https://covidmutualaid.org.

We're waiting for more information from the Government about people receiving in-home care, particularly those being cared for by their families. But for the moment there are a lot of grassroots organisations providing support within the community, alongside local councils running Local Resilience Forums who are also setting up mutual aid groups. These groups are coming together to build a support network, so that in-home carers can access existing community support that they may not otherwise know is there.

This is a developing story every day. It's something that's very difficult to predict what's going to happen tomorrow, let alone in two weeks time. Do you have any advice for people broaching the subject of COVID-19 with care recipients?

It's a real challenge. Particularly for somebody who feels vulnerable. Those conversations need to be judged on a case-by-case basis, because it very much depends on the level of understanding that the person who you're caring for may or may not have.

We know with Alzheimer's, for example, that people don’t maintain one state of mind. The way that you feel in one moment will change drastically to the next. As a result, the current situation is something that you may have to explain over and over again. It’s important not to become frustrated if you have to do that. 

In some cases, going into the details may not be the right thing to. If the understanding isn't there and details simply cause anxiety, it isn’t helpful to discuss something they can’t control.

But in most cases transparency is the best way. Keep it simple and explain that there is a virus and that you want to keep everyone safe, so you have to keep the world small for a little while. 

It is also very important to ask what the person you care for would want in the event that they contracted COVID-19 and how they would wish to be treated. This kind of advanced care planning is really hard to broach, but it is much easier to have these conversations while someone is well rather than in an emergency when you can’t think straight or can’t ask them anymore. 

We already know that loneliness and isolation is a huge problem, particularly among the elder community. What can the wider community do to help combat this?

There is so much that we can do. We can see entire communities mobilising across the country to provide this kind of support. The challenging part is that lots of people out there want to provide this support but don’t know how to contact the people who need it.

Coming back to Mutual Aid Groups, you can sign up and start a ‘befriending service’, where you can contact somebody who may be in need of some company and play an online game with them or FaceTime them. There are a lot of programmes out there, but they haven't necessarily been formalised into one systematic service that people can tap into.

What is the most important practical advice that people receiving care and their carers should heed in the current lockdown situation?

It's boring, but hand washing is absolutely critical. If you have to go to the shops or to do anything else, remember that wherever you go outside there is a potential risk that you will pick up the virus. The moment you come home, you must wash your hands and make sure you wipe down mobile phones frequently.

Cleaning frequently touched surfaces with detergent is vitally important. If you are caring for someone who is bed bound, make sure that you're wiping down bed rails and hard surfaces around the bed, along with the door handles and all kitchen and bathroom services.

If you are caring for somebody with symptoms within a two meter distance, ask your GP whether you need an apron and gloves or even a fluid-resistant mask. You can always call your local Public Health England health protection team and they can provide advice in those situations. 

One of the overriding messages is: if you're unsure, don’t be afraid to ask an expert to make sure everyone stays safe.

This article first appeared on Elder, a solution providing an alternative to residential care homes by providing access to first rate live-in care, elderly care and dementia care. You can read more interviews from Elder’s Magazine.