Supporting a person with dementia who gets coronavirus

People with dementia should prepare in case they become ill with coronavirus. This advice for carers will help you both do this. If you need help for a different medical problem, contact the GP or NHS 111 as usual – they will give you the care you need. 

You might find some of the information on this page distressing to read, but it’s better to know now so you are prepared and know what to do.

Getting prepared

It’s a good idea to pack a bag just in case the person with dementia needs to go to hospital (you can find more tips about supporting someone going into hospital from University of Bradford). Include things like pyjamas, slippers and a toothbrush, a list of their medications and contact details of people in case of an emergency.

Make sure you also have anything that sets out the person’s advanced care wishes and a copy or details of any Lasting power of attorney (LPA), if they’ve made one.  

You can also fill in together a copy of This is me – a simple form that will help nursing and care staff to understand and provide care for the person. 

Talking about future care

If the person with dementia becomes seriously ill, you may have to speak with a doctor or nurse about their care. If you and the person are both able, talk about this together now – so that you know what their wishes are in advance. This will be easier at home in your own time. 

Although it can be difficult to think about what the person’s care needs may be in the future, planning ahead is always a good idea. This is because the person’s ability to decide for themselves (mental capacity) will get less as their dementia gets worse.

It’s even more important now. First, the person may get seriously ill quite suddenly. Second, coronavirus may cause delirium, which will then make any communication extremely hard. Third, if the person goes into hospital you will at best be able to see them for short periods – so may not be able to talk to them in person at an important time.

If you can, try and talk to the person about the treatments that may be offered if they were to go into hospital with coronavirus (see below). They may or may not want to be put on a ventilator to breathe for them or, if their heart or breathing suddenly stops, to have cardiopulmonary resuscitation (CPR). We all have our own individual views on balancing our comfort against prolonging our life and our personal approaches to risk.

If the person decides that they do not want a particular treatment and has mental capacity to do so, they can make an advance decision to refuse treatment (sometimes called a ‘living will’). Doctors must follow this.

Alternatively, they can set out their future care wishes in an advance statement. It’s better – but not essential – to write this down. Unlike an advance decision, an advance statement is not legally binding. But doctors must take it into account when they make decisions.

Some people with dementia will have already made and registered a Lasting power of attorney (LPA) for health and welfare. If so, the person may have given someone else (their attorney(s)) – which may include you – the power to refuse life-sustaining treatment if they became unable to decide for themselves. Life-sustaining treatments include CPR and ventilation. 

If the person has already made an advance decision, an advance statement or an LPA for health and welfare, remember to put copies of these documents in their bag to go into hospital with them – and tell the medical staff you have done this.

What to do if the person gets coronavirus symptoms

If the person with dementia falls ill with possible coronavirus (COVID-19), knowing what to do in advance may give you reassurance and be able to support them better. 

The NHS advice is:

  • if the person ever has symptoms of severe COVID-19, including severe difficulty breathing – gasping, not getting words out, choking, or blue lips – this is an emergency so call 999 for an ambulance 
  • if it’s not an emergency, visit NHS 111 online - you will need to answer a set of questions and then be told what to do
  • no one who is unwell should go to a GP, pharmacy (chemist) or – unless they are told to – a hospital.

The NHS has also issued detailed advice for what to do when someone in the household gets coronavirus symptoms, including ordering a virus test kit, not going out at all for at least ten days and extra advice for higher risk groups. Call the Alzheimer’s Society support line on 0333 150 3456 if following this advice is made difficult because the person has dementia.

Many people with coronavirus symptoms get a high temperature and a new continuous cough. These may last for about two weeks. The fever often gets better before the cough. Loss of, or change in, sense of smell or taste is also common.

If these are the only symptoms, NHS 111 online advice for most people with dementia is rest, paracetamol and drinking plenty of liquids. 

In people with dementia, coronavirus infection is more likely to cause other symptoms, including delirium. The person will suddenly seem more confused than normal and be unusually sleepy, agitated or distracted. They may no longer make sense or know where they are. They may also behave differently. Delirium is serious, so NHS 111 online advice in this case is to call 111 and wait to speak to a nurse. They will advise what to do.

If breathing becomes difficult

Some people with coronavirus have problems breathing, often starting about a week or so after the fever and cough begin.

  • If the person is struggling to breathe – such as being unable to speak more than a few words – call 999 for an ambulance.
  • If breathing difficulty – or any other symptoms – are less severe but still mean that the person has had to stop all of their usual daily activities, call 111 and wait to speak to a nurse. They will advise what to do. 

Difficulties with breathing are likely to make the person anxious and agitated. Talk to the person to acknowledge their fears and offer reassurance. Try to find a comfortable position where the person can breathe more easily.

You can also try to help by cooling their face, particularly around the nose and cheeks, with a cool, damp flannel but don’t use an electric fan, as it can spread the virus. 

Supporting a person with dementia in hospital

 If the person you care for goes into hospital, follow our advice to help support them.

Support in hospital
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