Advice

Talking about death and end of life with a person who has dementia

There’s no denying that it's difficult to talk about death – it’s easy to put it off until you absolutely need to have the conversation.

But speaking about it openly as early as possible means that a person’s wishes can then be respected.

Every person’s experience of dementia is different, so whatever approach you take, it’s important to communicate in a way that is personal to them.

We asked members of Dementia Support Forum and Dementia together magazine readers for their advice. 

Stages of dementia

northumbrian_k says, ‘Some who are aware and in early stages may welcome the opportunity to make their views known. 

‘But for those like my wife who have advanced presentations, there doesn’t seem anything to be gained by raising the subject.’ 

As with so many other life decisions, it is those who care for people with dementia who have to represent and articulate their views. 

Val55 says, ‘My friend with dementia and I were sitting in a lovely park listening and watching the river when he told me out of the blue, I’ve decided I’m not going to die. I said, you’re so right, your body will die but your soul will always live on forever. He accepted that explanation. 

‘I think that conversations about death would be very appropriate and helpful if the dementia patient is at a stage where they are able to discuss these things.’ 

Opportunities to talk

sdmhred says, ‘We had discussions pre diagnosis about DNR (do not resuscitate) and mum always said quality rather than quantity. 

‘I found the ReSPECT form a quite helpful tool to revisit these with mum. She was mid stage vascular dementia but able to reiterate her desires in terms of both these and her wish to die at home.’ 

anonymous says, ‘I seem to remember when my mum and dad wanted me to be lasting power of attorney, there was a suggestion somewhere on the health and welfare form that you discuss your wishes with regard to illness or DNRs etc.’ 

So we did, and I’m so glad that I know what they wanted, it’s made it so much easier than guessing or making assumptions.

Talk while you can

Chizz says, ‘We had discussions about DNR and euthanasia when we discussed our wills etc many years ago, well before diagnosis. Then we had those discussions again after my other half’s Alzheimer’s diagnosis, when she still had mental capacity. 

‘Then as she started to lose some life skills, and losing interest in doing things she used to love, she would say she didn’t want to be like those people at these groups – please, please, please promise me you’ll put me down, now will do before later! 

‘Then she would plead with me about this every day for quite a few weeks before forgetting about it. It was very difficult and upsetting for both of us.’ 

RoyalOilfield says, ‘I do not understand people’s reluctance to discuss death, death’s inevitable. 

You just ain’t getting out of here alive, whoever you are. Preparations must be made while it’s possible. 

‘Then, all being well, you can relax and enjoy what time you have left.’ 

Plan ahead

lollyc says, ‘We discussed and arranged funeral and advanced decision whilst Mum was at the “resolving delirium” (it didn’t) stage. 

‘She most certainly had dementia symptoms but was very clear that she wanted to die at home and did not want treatments to extend her life. 

‘She handwrote in the advanced decision that she did not want to become a “vegetable” (her words, not mine) and understood that her decisions may shorten her life.’

Although we already knew what she wanted, it was a comfort to have it confirmed by her. 

Complete denial

Lawson58 says, ‘My husband is in complete denial about dying and always has been. 

‘Even through a recent decision-making situation about possible risky surgery, there was never a mention from him about death though the surgeon mentioned it as a possibility.’