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) has spread to some care homes. A person with dementia who gets coronavirus may be less able to say they feel unwell, so care home staff are now checking residents twice a day for signs. These may include a high temperature, a new continuous cough and shortness of breath.

Older care home residents often don’t have these typical symptoms. Instead they may have delirium, loss of appetite, diarrhoea or fatigue. Some care homes are using a simple pulse oximeter to measure how much oxygen is in a person’s blood. Low blood oxygen gives a good measure of how ill someone is, whether they have COVID-19 symptoms or not.

If a resident shows any symptoms of coronavirus, the home will need to isolate the person and have them tested for the virus. Isolation is for the person’s own wellbeing and to reduce the risk to other residents, staff and any visitors. Someone in isolation will have to stay alone in their own room while they are being cared for coronavirus. 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. If you do a video call, expect to see signs up about infection control. Staff will also be wearing PPE (personal protective equipment), such as a disposable apron, gloves and face mask. This may be unsettling for the person with dementia, so staff will be reassuring.

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.

Care home staff can treat symptoms such as getting the person’s fever down and reducing their cough. To help with breathlessness, staff will aim to reduce anxiety and try different positioning and breathing exercises. They may give extra oxygen from a cylinder if needed by a face mask. Staff will use non-drug and drug approaches to treat delirium or severe agitation.

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. This is true whether or not you are named on the person’s Lasting power of attorney (LPA), or whether or not the person has made advance care plans.

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 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 now. 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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