Talking about death and dying to someone with dementia

It’s a good idea to start a conversation about what to expect and what sort of care someone might want as soon as possible after they are diagnosed.

This allows time to make decisions about treatment, writing a will, and other practical decision-making.

It might be useful to talk about the following things:

• What to expect as the condition progresses
• Writing a will and granting someone power of attorney
• What to do if they need daily help, for example arranging for extra care or moving somewhere else
• Wishes and preferences about how to be cared for, including treatment they might want to refuse
• What might happen in an emergency, and who should be contacted
• Making a funeral plan
• Organ donation preferences

These might seem like difficult things to talk about, but by having these conversations you are making sure they receive the care they want, and their wishes are carried out

People with dementia can have problems understanding and communicating, but that doesn’t mean they can’t feel grief when someone dies.

It can be difficult deciding whether to tell them about a death, and this will depend on what stage of dementia they have, and what relationship they had with the person who has died. The most important thing is to consider what is in their best interests.

The Alzheimer’s Society advises that if the person is in the early stages of dementia, it is usually best to start talking about the death and see how they react. If they are in the later stages they are less likely to understand, so it may not be appropriate to tell them. There is more information on the Alzheimer’s Society website.

Here are some tips for telling them someone has died: 

• Choose a time to talk when they are well rested
• Use short, simple sentences to explain what has happened, and avoid phrases like “gone to sleep” as this can be misunderstood
• Be prepared to repeat information
• Respond to their mood - if they become agitated, or don’t understand, then it’s not the right time to talk about it
• If they become distressed try comforting them by holding their hand, or giving them a hug

There is a very detailed guide about how to help someone with dementia accept a death on the Pathways website, an American hospice care provider.  

If you’re unsure what to do you can talk to a healthcare professional, such as a doctor or dementia specialist nurse