Supporting a person with dementia during a bereavement

Like anyone, a person with dementia may respond to bereavement in a range of ways. However, difficulties with thinking and reasoning may affect how they understand and adapt to the bereavement. This doesn’t mean they are unable to experience loss and grief.

If the person who has died was the main carer of the person with dementia, it can also lead to lots of change in the person’s life. They may need professional carers for the first time, or have new people around them providing care. In some cases the person may need to move into residential care. They are likely to need lots of support, guidance and assistance to adjust to these changes.

There are other things to think about when a person close to someone with dementia dies. This includes whether to tell the person, or whether they attend the funeral.

Should you tell a person with dementia that someone has died?

When someone close to a person with dementia dies, you may wonder whether to tell them. It can also be hard to know how much detail to give, especially if finding out how the person died could be distressing.

There are a few things to consider, such as the person’s situation and their relationship to the person who died. If they are not told about the death it may mean they don’t have a chance to grieve.

It may also leave them feeling confused and unsupported. For example, they may be aware that the person who has died has stopped visiting them, without knowing why. However, telling the person the truth may lead to avoidable distress and they could be unable to understand or remember the information.

If the person is in the early stages of dementia, it is usually a good idea to tell them about the death initially and see how they react to the news. This will give you an idea about what to do and whether to tell them again if they keep forgetting (see ‘The person’s past bereavements’ below). If they are in the later stages, they are less likely to be able to understand so it may not be appropriate to tell them at all.

Whatever you decide to do, it is important to acknowledge and support the person with their feelings. Think about how to tell the person and what language to use.

There is no approach that works for every person and situation. Always do what you think is best for the person. It can be helpful to discuss what to do with a professional involved in the person’s care such as a dementia specialist nurse, dementia support worker or a doctor.

Supporting a person with dementia to grieve

If the person with dementia is going through a bereavement, it’s important to support them. Dementia may mean they struggle to do things they’d normally do to cope with a death, such as speaking to their friends or family about how they feel or keeping busy with hobbies or tasks.

Their dementia may also affect their ability to accept the death. Try to gently encourage them to communicate how they are feeling and try to help them keep active and busy. You might need to keep reminding them that help and support is available.

There are many ways that a person with dementia may respond to the death of someone close to them:

• They may think there’s another reason why the person is no longer around – for example, that they’re at work or on holiday. This can be caused by denial, memory problems or ‘confabulation’ (where a person fills in memory gaps with things they believe are true). It may also be a combination of these things.
• They may be more confused than normal and mistake others for the person who has died – for example, thinking their son is their husband. This can be caused by memory loss or problems recognising people.

How to know if the person is grieving

Sometimes it might be difficult to know whether a person with dementia is grieving. Changes in the brain mean they have difficulty communicating their feelings in the way they usually would.

Instead they may express their grief in different ways, such as through their behaviour. For example, they may become attached to one possession such as a coat or an ornament, or refuse to take part in an activity they usually enjoy.

If the person becomes withdrawn or behaves in ways that challenge, this may be a sign of distress at not being able to grieve as they need to. It can help to try and see if there are things that trigger their grief, such as a photo or an activity that they associate with the person who died. Identifying these triggers may help you find a way to avoid them.

You and the person with dementia may be grieving about the same person. This can make it harder for you to feel you can offer the person support. Remember to be kind to yourself and take your own feelings into account too.

Explaining past bereavements to a person with dementia

A person with dementia may forget about a past bereavement. This can be due to memory loss, confusion or time-shifting, which is when a person believes that they are living in an earlier time in their life.

They may think that people who have died are still alive and ask you where they are. Telling the person may shock and upset them, as for some people it will feel like the first time they have heard the news.

As they are likely to have short-term memory problems, they could experience the shock of grief repeatedly if they continue to be told every time they ask. Explaining that the death happened a long time ago may add to their confusion.

Think about whether it is in the person’s best interests to continue to be told this news. If you do choose to tell the person more than once, try to give them the news in a sensitive and compassionate way, offering warmth and support. It is important to gauge how they respond and make a decision about what is in their best interests.

If the person is in the later stages of dementia and remembers a bereavement they’ve had in the past, they may not be able to communicate this. Instead it may show in their mood or behaviour – for example, they may be crying a lot more or be more agitated.

This can explain changes in their mood or behaviour that don’t otherwise seem to have an obvious cause. For example, if the person has had periods of isolation due to coronavirus restrictions, this might have brought up difficult feelings and memories of past bereavements.