Dementia is a set of symptoms that causes problems with memory, thinking and understanding. Because there is currently no cure, these symptoms get worse with time and it can become harder to communicate with the person. The advice on this page can help to plan their future care, and to talk to them about death and dying.
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
Telling someone with dementia a loved one has died
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
We have a leaflet, produced by the Dying Matters campaign, which you can download and keep for reference.