Breaking difficult news to a person with dementia

May 27, 2020
Man and woman looking serious

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. We have some more information in this blog post.

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, you can look at our leaflet on grief, bereavement and loss.

John’s story

John* called the Admiral Nurse Dementia Helpline after his father had been urgently admitted to hospital earlier that month with a chest infection. It was later confirmed that he had coronavirus. He had died the day before John called the Helpline so the grief was still raw for both him and his family.

John called specifically to ask for advice on breaking the news about his father’s death to his mother. John reported that his mother had been living with dementia for a few years which caused short-term memory issues, often prompting her to ask the same question repeatedly. He also said that whilst his father had been in hospital his mother had frequently asked where his father was.

To add to the difficulties, his mother was more confused than usual because her routines had been disrupted by the lockdown. Whereas she had previously attended day care three days a week, she had also had her husband caring for her and supporting her at home before he became unwell and then taken to hospital.

The Helpline Admiral Nurse listened carefully to John’s concerns and acknowledged his own loss and grief, showing empathy at the difficulties he may have in explaining the bad news to his mother. Time was spent talking through a range of approaches with consideration given to his mother’s personality, focussing on the strengths she has retained, such as her being supportive and a pragmatist, as well as her close relationship with her husband and family. The Admiral Nurse helped John to use a recent experience of sharing the news that his father had been seriously ill and admitted to hospital, as a gauge to help him decide on telling his mother about his father’s death.

This led to a conversation about whether the bad news should be repeated to his mother as he feared this may prolong her reaction and distress. John felt that he would only repeat this if the family agreed it was in their mother’s best interest to remind her, such as in advance of the funeral.

The Nurse suggested that it may help when his mother asks about his father to use some phrases like: “what is it you miss most about dad?” or “what is it that I can do to help now that dad is no longer around to help?” Both would imply that his father had died but would also open a conversation with his mother to allow her to talk about him in the past tense.

It was suggested to John to see his mother’s reaction to sharing the bad news about his father’s death first before deciding on how best to involve her with the funeral arrangements. John was offered future support from the Helpline to help him come to terms with his grief.

Please note: the names in ‘John’s story’ have been changed to protect anonymity

Grief, bereavement and loss

This leaflet provides advice from our Admiral Nurses on coping with grief, bereavement and loss

Find out more

Dementia Helpline

Our free Admiral Nurse Dementia Helpline is here for anyone with a question or concern about dementia

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Meaningful activities

Head of Research and Publications at Dementia UK, Dr. Karen Harrison Dening, introduces this series of blog posts pointing to why meaningful activities are so important for someone with dementia

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