10. Supporting a person with dementia during bereavement
Like anyone, a person with dementia may respond to bereavement in a range of ways. However, their problems with thinking and reasoning may affect how they understand and adapt to the bereavement. This doesn’t mean they are unable to feel emotions after bereavement and experience grief.
Telling the person about a death
When someone close to a person with dementia dies, you may wonder whether to tell them. You may also question how much detail to give, especially if finding out how the person died could be distressing. If the person is in the early stages of dementia, it is usually best to tell them about the death and see how they react to the news. 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. When making the decision, think about what is in their best interests. You may find it helpful to discuss what to do with a professional such as a dementia specialist nurse, dementia support worker or doctor.
If the person is not told about the death it may prevent them from grieving. It may also leave them feeling afraid and unsupported if, for example, the person who has died appears to have stopped visiting without them knowing why. However, telling the person may lead to unnecessary distress and they may be unable to process the information.
Whether to tell the person will depend on a range of things – who the person is, what situation they are in and what is in their best interests. Whatever you decide to do, it is important to acknowledge and support the person with their feelings.
There is no right or wrong answer that works for every person and situation. Always do what you think is best for the person.
For more information on how to approach these sorts of decisions see factsheet 484, Making decisions and managing difficult situations.
Tips for telling the person about a death
- Explain what has happened clearly and simply. Don’t use euphemisms like ‘losing’ someone or saying they have ‘gone to sleep’, as they can be misunderstood.
- Use body language and physical contact if appropriate.
- Try not to give too much information at once.
- Allow plenty of time for the conversation and be supportive.
- Be prepared to repeat information. Try to be patient.
- If the person becomes very distressed, offer them reassurance (for example by holding their hand). It may help to try a different approach later on when the person is no longer distressed.
- Make sure that you are supported as well.
The person’s dementia may also mean they struggle to do the things they’d normally do to cope, such as speaking to friends about how they feel or using hobbies to keep themself busy and doing things. Try to help them feel safe and supported. It can also affect their ability to accept the death, and to talk about any distress and emotions they’re feeling. 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 may be caused by denial, poor memory or confabulation (filling in gaps with things the person believes to be true). It may be a combination of these things.
- They may 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.
- Changes in the brain mean they may have difficulty expressing how they’re feeling and may express their grief in different ways, such as through their behaviour. They may become attached to one possession, for example a coat or an ornament, and not want to be parted from it, or they may refuse to take part in an activity they enjoy, such as singing.