What is the right way to handle the death of a loved one when the surviving relative is living with dementia?
Look After Yourself
In any bereavement situation it is important for carers to acknowledge their own grief and emotions. It may become difficult to care for someone living with dementia and to help them to come to terms with the bereavement if you yourself have not done so.
Finding friends or others to talk to, doing activities that you enjoy (making time for yourself) may seem like luxuries, but they are fundamental to your ability to care and support others.
Time to Readjust
Life does not return to being the same after bereavement. However it does get easier over time.
Readjusting can be easier if you are able to talk about the person who died and the life they shared with the person living with dementia. It may be helpful to create a photo album of the person who has died – this may be a good activity to share with the person who is living with dementia, as well as something to come back to as a reminiscence activity.
Grieving and People Living With Dementia
People living 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. Much of the process will depend on the level of cognitive function the person living with dementia has – and will depend on how they understand information.
The grief process has five steps – Denial, Anger, Bargaining, Depression and Acceptance. As a person living with dementia moves through each step, carers will encounter these emotions – just because someone has dementia does not mean that they are unable to feel emotions at the bereavement, nor does it mean that they don’t experience grief.
Telling a Person Living with Dementia About a Death
- Provide information clearly, simply and without euphemisms (‘died’, not ‘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 distressed, try a different approach
- Make sure that you are supported as well
Ways that a Person Living With Dementia May Deal with Death
They may come up with an alternative reason for why the person is no longer around (e.g. they are on holiday or at work). This could be caused by denial, poor memory or confabulation (filling in gaps with things the person believes to be true) – or a combination of all these things.
They may mistake others for the person who has died, e.g. a son for a husband. This can be caused by memory loss and/or problems recognising people.
Changes in the brain mean that someone living with dementia may have difficulty regulating emotional responses, and may express grief through behaviour rather than language. They may become attached to one possession and not want to be parted from it, or they may refuse to take part in an activity they enjoy. Try to address the emotion behind the behaviour rather than the behaviour itself.
Supporting the Grieving Process
Involve the person who is living with dementia in conversations and arrangements after the death, e.g. the funeral. This may help them to take in the loss and start the grieving process.
If the person does not appear to be grieving, it may be best to let them be.
In general, the best approach is to acknowledge the person’s feelings and encourage them to express themselves. Providing outlets such as art or music activities can help them to express emotions. Reminiscence activities can also be a helpful way of coming to terms with the death.
Asking for the Person Who Has Died
A person living with dementia may forget that someone has died. They may ask about them repeatedly or wonder where they are.
This can be very difficult for family and carers.
If the person living with dementia is repeatedly told about the death, they may hear it as if for the first time and experience those emotions all over again.
Family and Carer responses to this situation to this will depend on the individual and what is in their best interests – if they are in the later stages of dementia, it may be kinder not to remind them about the death.
It may also be helpful to look for patterns around when the person is asking for the dead person. If there is a pattern to this, e.g. around 5pm when they always had tea together, you may be able to put distraction techniques in place to help.
My Life Films Charity offer a free service creating films for people living with Dementia. They create life story films made up of 10 chapters showing the best memories from birth to present for people living with Dementia. Each film helps a person with dementia to reminisce positively over their life on a regular basis, boosting their mood and helping them to recover from low moods quickly. The film also helps people with dementia reconnect with their friends, family and wider community by giving them personal topics of conversation and the self-esteem to socialize with people.
For this service contact My Life Films:
Phone: 0208 948 7560
This fact sheet should only be used as a guideline and we recommend you seek professional advice.
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