Assisted dying and dementia

I’m going to talk about a thorny issue this week – assisted dying and dementia. Currently, here in the UK, the Terminally Ill Adults (End of Life) Bill has passed in the House of Commons and now moves on to the House of Lords.

If it’s approved there – which is a big if, with opposition expected from Anglican bishops – it will then require another Commons vote and royal assent before possibly being implemented in 2029 at the earliest.

The bill would allow terminally ill adults (with under six months to live) in England and Wales to opt for assisted dying, with approval from two doctors and a panel consisting of a lawyer, psychiatrist, and social worker.

I’ve been watching this bill’s progress with interest, as it’s an issue that has been close to my heart for years. Giving people the right to have control over how they live and die seems, to me, hugely important. I know we need to be careful that nobody feels pressured to end their life for fear of being a burden – but that’s exactly why safeguards exist.

So what would it mean for people with dementia?

I know that some people are deeply afraid of losing their identity, memories, and the ability to recognise their loved ones. They want to make informed choices about their future while they still have mental capacity – but they also want to enjoy the time they still have, without being forced to act too early.

There is so much life to live and enjoy after a dementia diagnosis. In the early and mid stages, my father still took great pleasure in walks, spending time with his loved ones, and watching operas and concerts – even if it became easier for him to enjoy them on TV instead of facing the disturbance of going into town to see them live.

Not everyone with dementia would want the option of assisted dying, and many find joy and connection even in later stages. This law wouldn’t take anything away from those experiences – it would simply give people the freedom to make choices that reflect their own values and wishes.

But I remember something my father said when he thought he might have Parkinson’s – back in those early days, when we were still trying to work out what was happening. He told us he wouldn’t want to end up in the state he’s in now.

The advanced stages of dementia are incredibly hard. There’s a lot of sleeping. There’s incontinence. There are increasing difficulties with mobility. He can’t really talk to us in a meaningful way most of the time – and he was a great talker. He probably doesn’t know my name, and he might get to a stage when he doesn’t recognise me at all. He might become unable to eat or develop a fear of washing. He sometimes finds it hard to understand why he can’t just leave the care home, or why he needs certain medical care as his body struggles under the weight of all that’s happening to it.

I know that if he had the choice, he wouldn’t be living like this now. My only consolation is that he isn’t aware enough to remember that. He seems quite content most of the time.

In countries like Canada and the Netherlands, people can request assisted dying before losing capacity – often with strict processes and medical review panels. These systems show it’s possible to balance protection and compassion.

I understand that for some, even discussing assisted dying feels painful or frightening. But having legal, ethical frameworks may actually give families peace of mind – knowing that decisions aren’t rushed, hidden, or traumatic.

The current bill doesn’t include dementia specifically, but it opens the door to future discussions. If we can design systems that are safe, careful, and compassionate, maybe one day people with early dementia could make advance choices without fear.

I remember reading about the wonderful Wendy Mitchell’s decision to die after living with dementia for a decade, by choosing to stop eating and drinking. That was a decision she and her daughters had discussed at length.

But I also imagine it was a hugely difficult choice – to deprive the body of the sustenance it craves. Not everyone would be able to be so strong and decisive, I imagine. And she would have had to act early to ensure she still had the ability to make that choice. Perhaps she could have had a bit more time with her daughters. What strength she showed. I can’t get over that.

This isn’t about judging whose life is worth living. It’s about honouring personal agency, and recognising that everyone has the right to shape their own end-of-life experience according to their own values.

This law isn’t about ending lives. It’s about extending control, dignity, and compassion to people by giving them more say in how they face their final chapter.

And isn’t that something we should give to people with dementia too?