Grief, loss and bereavement

7. Supporting a person with dementia during bereavement

People with dementia will experience bereavement in a range of ways and their needs will be similar to those of someone who doesn't have dementia. However, the person's cognitive difficulties may create unique challenges.

Telling the person about a death

When someone close to a person with dementia dies, it raises the question of whether or not to tell them. There may also be the question of how much detail to tell them, especially if the circumstances of the death could cause the person distress. These are difficult situations and there is no one solution that will work for everyone. It will depend on the individual, their situation and what is in their best interests. Whatever decision is made, it's very important to acknowledge and support the person's emotional responses.

If the person is not told about the death it may prevent the grieving process and leave them feeling afraid and unsupported when, for example, the person who has died appears to have stopped visiting without explanation. However, telling the person may lead to unnecessary distress and they may be unable to process the information.

Talking over the situation with professionals may help. Whatever is decided, it's important for the person to be supported as much as possible.

Telling the person about a death: tips for carers

  • Provide information clearly, simply and without euphemisms (eg 'passed away').
  • 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.
  • If the person becomes very distressed, try a different approach.
  • Make sure that you are supported as well.

Like anyone, a person with dementia may respond to bereavement in a range of ways. However, how they understand information and adapt to the bereavement may be complicated by problems with thinking and reasoning. However, just because someone has dementia, it doesn't mean they are unable to feel emotions at the bereavement and experience grief.

The dementia may also interfere with a person's usual means of coping, so it's important for them to feel safe and supported. It can also disturb someone's ability to accept the death, and to vocalise 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 come up with an alternative reason for 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), or a combination of these things.
  • They may mistake others for the person who has died, eg a son for a husband. This can be caused by memory loss and/or problems recognising people.
  • Changes in the brain mean they may have difficulty regulating emotional responses and may express their grief in different ways such as through their behaviour. They may become attached to one possession, eg 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, eg singing.

Supporting the person to grieve

It may be difficult to know whether a person with dementia is grieving. If they are grieving it's important to support them to do so. Being involved in conversations and arrangements after the death (eg the funeral) may help the person with dementia take in the loss and start the grieving process. However, if the person appears not to be grieving, it may be best to let them be.

If someone starts to behave in challenging ways, it may be a direct reaction to the bereavement, or a sign of distress that they are not being supported to grieve. It can help for carers to observe the person and see if there are things triggering or maintaining a grief response. Identifying these may help a carer to support the person to grieve, or help them find a way to avoid triggers.

Supporting the person to grieve: tips for carers

  • Acknowledge feelings and encourage the person to express themselves.
  • Reminiscence can be helpful after a bereavement.
  • Allow the person with dementia to talk/communicate about the person who has died.
  • Giving the person something that reminds them of the person who died may help with feelings of connectedness and can be used to support reminiscence, if appropriate.
  • Consider creative outlets such as art and music. These can help support people to express their feelings and grief.
  • Consider other ways to meet the person's attachment needs, such as comfort objects, spiritual means and other relationships.
  • The person may find comfort in their spiritual beliefs such as prayer, meditation or faith practices.

If the person's main carer dies it can lead to lots of upheaval and change in the person's life. They are likely to need lots of support, guidance and assistance to adjust to these changes.

When a person with dementia experiences a bereavement they sometimes experience and remember a profound shock and sense of bewilderment. At other times they may not recall or understand the loss, but it can still have a strong emotional impact on them, reflected in their behaviour and mood.

Asking for the person who has died

A person with dementia may forget that someone has died. They may ask about them repeatedly, come up with reasons for their absence (such as being away or having left them), or report them as missing. This can be very difficult for family and friends coming to terms with the death, as well as the person with dementia. If they are told again that the person has died, it may be like hearing it for the first time. How a carer should respond will depend on the individual and what is in their best interests.

Reminding a person with dementia of a death: tips for carers

  • For some people, a gentle reminder that the person has died may help. For others this will be very upsetting.
  • Reminders of the funeral, shown and discussed in a supportive way, may help the person to absorb the news. Personal possessions may also help.
  • Recognising and focusing on the person's emotional state can make knowing what to say easier.
  • If the person is in the later stages of dementia, trying to remind them that the person has died is unlikely to work and may be very distressing.
  • If someone is becoming very upset it may be best not to try and remind them.
  • Support the person through changes in emotion and behaviour. Reminiscence and other creative techniques (eg art or music) can be helpful for this.
  • Look for patterns to when the person is asking. If there is one (eg at 5pm they always had a cup of tea together) you may be able to put techniques in place to help. For example, at 5pm ask the person about hobbies they used to do together to encourage positive reminiscence.
  • Be patient, responsive and aware that adjusting to the loss will take time.

If responding to the emotion or reminiscence doesn't work, you could try distraction. However, while this may alleviate the stress of the moment, it may not help the grief process in the long term.

Past bereavements

A person with dementia may forget about a past bereavement, and hear of it as if for the first time. It can feel as though it's just happened, and they may experience the emotions all over again. They may struggle to process the information that the death happened a long time ago, and be left with the feeling of a recent bereavement. They may also confuse a present loss with a previous one (eg husband with father).

Supporting a person with dementia who is bereaved can present many challenges. However, there are things carers, family and friends can do to help the person feel safe and supported. It is also important for carers, family and friends to address their own needs and feelings of grief during loss and bereavement.