End of life care during coronavirus while in a care home

Some people with dementia in a care home who fall very seriously ill with coronavirus will receive palliative care, most commonly used at the end of a person’s life. This advice for friends and family may be distressing to read but we hope it is helpful to know.

People with dementia in care homes – especially those in nursing homes – have complex needs, and are often frail and very vulnerable. This is why, if they get coronavirus it can lead to a much higher than normal risk of them getting very seriously ill and dying.

Who decides on end of life care?

If the person develops very serious symptoms, a healthcare professional will need to come to a decision. This will include considering whether it’s better for them to go into hospital for tests and treatment that can only be given there, or be looked after in the care home.

People involved in the person’s care should sensitively and clearly discuss this with you and, if possible, include the person with dementia. Professionals should speak to you whether you are named on the person’s Lasting power of attorney (LPA) or not. They should cover the risks and likely outcome of each option and take into account any advance care plans.

The decision may be not to transfer the person to hospital for treatment there. This may be very difficult for everyone close to the person to hear and accept. It’s likely to be for one of the reasons below:

  • The person may have made an advance decision to refuse the intensive treatment (such as antibiotics or fluids injected into a vein, or ventilation) that would be given in hospital. 
  • They may want to stay in the care home, in a familiar setting with people they know. Or the person (or people) with LPA for health and welfare (which may be or include you) has decided this for them, because the person with dementia now lacks capacity to decide for themselves.
  • It might be that any hospital treatment is very unlikely to result in a good outcome and would only cause them distress. And that the care home is able to provide good end of life care.

What care will be given at end of life?

Good end of life care should always fit around the needs and wishes of the person. The aim is to support the person with compassion and dignity to live as well as possible until they die.

It will involve palliative care, which includes supporting the person physically with their symptoms and distress, and keeping them clean and free from pain. Very small amounts of food and water may be provided if the person wants it. It also includes supporting the person spiritually, culturally and emotionally such as keeping their connections with people who matter most to them. Staff will understand the relationship between you and the person, and so support you too as best they can.

You should be able to be with the person at this time (see our information on visiting).

If the person is to spend their remaining time in the care home, staff there will seek advice from their GP, and specialists in palliative care if needed. Staff may give sedative drugs and possibly oxygen to help with breathing and anxiety or severe agitation.  If the person has delirium, staff will try to find out what is causing this. Treatment could involve the use of drugs to reduce pain, nausea or distress.  But, at this stage, doctors will look to stop any treatments or medicines that are not helping to reduce symptoms.

As part of the person’s emotional, cultural and spiritual support, staff should refer to This is me if you and the person have filled one in.

What happens if a person with dementia in a care home dies?

Everyone reacts to losing someone in their own way and at their own pace. Grief may be even harder if you have not been with the person when they died, or not had a chance to say goodbye. Losing someone suddenly to coronavirus can come as a shock to you and other friends and family members.

The fact that coronavirus is so widely covered in the media may also make grieving more difficult.

We have some practical advice for when a person dies. This downloadable two-page PDF factsheet (produced by psychiatrists at Oxford University) may help you talk to children about what has happened.

You should be able to go ahead with a burial or cremation. Currently, the number of people who can attend a funeral will no longer be limited to a specific amount but instead be the amount that can be safely managed by the venue. However, there will still be a maximum of 30 people who are allowed to attend a commemorative event, such as a wake or scattering the person’s ashes. The government guidance on funerals includes links to that in Wales and Northern Ireland.

The situation around coronavirus at the moment is still quite uncertain – particularly in areas where rates of infection are rising – so speak to a funeral director if you need to know more.

If you are struggling afterwards, you may find it useful to speak to a trained counsellor or look at other types of bereavement support.

Cruse Bereavement Care (see Useful organisations) offer help by telephone and email.

Alzheimer’s Society’s welfare calls also offer you the chance to talk to a trained individual. 

Dementia Connect support line
Our dementia advisers are here for you.
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