Finding purpose in grief – Helen’s story
Helen reflects on her dementia journey and grief after husband Clive died from frontotemporal dementia in 1999.
It’s hard for anyone to receive difficult news, but when you’re breaking bad news to a person with dementia, it can be especially hard, as they may struggle to understand what you have said, or to retain it.
This is due to the changes in the brain which occur as a result of dementia. These changes can lead to increased confusion, difficulties in processing information and, in some cases, heightened emotions.
Families and professionals often struggle with how to break bad news to someone with dementia. This is particularly challenging with situations like the illness or death of a loved one, and made even more difficult for family members if their loved one with dementia forgets that information and have to be told more than once.
When breaking bad news like a death, it is important to think first about the person with dementia and their relationship to the person who has died. If the person was not often in contact with your relative, it may be kindest to not share the news. If it is someone more meaningful, they may already sense that something is wrong through the absence of the person.
Here are a few suggestions for delivering bad news to someone living with dementia:
- Use short, simple sentences and clear language
- If the person with dementia is asking about the person who has since died, this can be an opening to then share the bad news with them. This can provide a more natural flow and can help the person who has dementia to process the information
- Avoid euphemisms such as ‘[name] has passed on’; use clear language such as ‘dead’ or ‘died’
- It helps if you share this information at a time of the day when the person with dementia is at their best; this could be after rest, or eating; morning tends to be a good time for most people
- Don’t delay or put off sharing the news. Try and do it as soon as possible, especially if the person’s absence is causing concern or agitation
- Spending time thinking about the deceased or ill person and memories and times shared with them, or looking through photographs of them can help the person with dementia process the grief, and celebrate their lives
- Continually assess your loved one’s mood. If they seem agitated or upset, you can offer comfort or perhaps seek a distraction by engaging in an activity with them which they enjoy.
In dementia, a person may forget that you have told them about a death in the family so may need to be told a second or third time. However, if the person with dementia has been told several times and is just not retaining or remembering this information, it is okay to stop breaking the bad news.
It’s also important for you as a carer to look after yourself, and you may find that you need extra support during the grieving process. For further information and support, read about grief, bereavement and loss.
Call the Dementia UK Helpline
Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia.
