If a person with dementia in a care home gets coronavirus

People with dementia in care homes are among the most vulnerable to coronavirus. This advice is for friends and family in case the person falls ill. Some of this may be distressing to read but we hope that it is helpful to know.

What happens if there are cases of coronavirus at the care home?

Coronavirus (COVID-19) can occur in care homes. A person with dementia who gets coronavirus may be less able to say they feel unwell, so care home staff should be checking residents for signs.

In older care home residents these are more likely to be delirium, loss of appetite, diarrhoea or fatigue than typical symptoms such as fever or cough. Some care homes are using a simple pulse oximeter to measure how much oxygen is in a person’s blood and therefore how ill they are.

If a resident shows any symptoms of coronavirus, the home will need to isolate the person and have them tested. Someone in isolation will have to stay alone in their own room while they are being cared for. If several residents have the virus, staff may support them in a different part of the home together with other people who are also infected.

If a care home has coronavirus, visits will generally be stopped except under exceptional circumstances (such as end of life or visits by essential caregivers).

What care and support will be given at the care home?

Care home staff will work closely with the person’s allocated GP to review their medical care, In an emergency they will call 999. Discussions will include review of the person’s treatment escalation plan, which is a guide to medical care if their condition gets much worse. Their symptoms could get severe very quickly.

No decisions about treatment should ever be based simply on the person’s age or the fact they have dementia. Doctors will take into account any other health problems the person may have.

As a carer, you should usually be involved in discussions about the person’s care and support (usually by phone or video call), as well as the person – to the fullest extent possible. 

Planning in advance about a person's care needs

Advance care planning is done in case the person’s dementia or illness means that they are not able to decide about treatment for themselves. In this situation, the person’s decisions, wishes or preferences will then be respected when their care is being agreed.  

Such planning includes an advance decision (‘living will’) made by the person to refuse some treatment(s) in certain circumstances or an advance statement that sets out their wishes and preferences about care. 

It also covers when the person has appointed one or more people – perhaps including you – as an attorney under a health and welfare Lasting Power of Attorney (LPA). As long as the LPA has been registered, it will allow the attorney(s) to make decisions in the person’s best interests when they can’t decide for themselves. This may give the attorney power to refuse life-sustaining treatment, such as mechanical ventilation or antibiotics injected into a vein.

The care home should already know about all these, but it won’t harm to check. It’s better to be prepared in case the person’s condition worsens very quickly.

Care homes and 'Do not resuscitate' decisions

The person’s records should also say if there is a ‘do not attempt cardiopulmonary resuscitation’ decision (DNACPR, sometimes called DNAR or DNR) in place or not.

If so, the person won’t have cardiopulmonary resuscitation (CPR) if their heart or breathing stops suddenly. 

If there is no DNACPR in place, expect care home staff to discuss this with you. They should involve the person with dementia as much as they can too. DNACPR decisions must be made on an individual basis and not for all residents as a group.

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