How to talk about death with someone living with dementia
It’s a delicate subject at the best of times, but in this instance, it’s very much, not about a box ticking exercise or making rushed plans. It IS about honouring your person’s voice, even as their cognitive abilities may be changing. These conversations can be meaningful, comforting, and even empowering, but they need to be approached with care, patience, and compassion.
Here’s 10 tips for talking about death with someone living with dementia to help you navigate it thoughtfully:-
1. Start With Where They Are
People with dementia experience the world differently depending on the stage of the condition. For some, memory loss may be mild, and they’re very much able to engage in conversations and planning. For others, communication may be more limited.
Before diving into any conversation about death, meet them where they are. Tune in to their mood, energy, and level of confusion or clarity on that day. If they seem distressed, tired, or disoriented, it may not be the right moment. You might need to gently revisit the conversation another time.
2. Use Clear, Gentle Language
Avoid euphemisms like “passing away” or “going to sleep forever”. These can be confusing, especially for someone with dementia. Instead, use kind but clear words, “Do you ever think about what you’d like when you die?” or “I’ve been thinking about what I want for my funeral, would you like to talk about what you’d want for yours?” Keep your tone soft and reassuring, and allow time for pauses.
3. Don’t Force It All at Once
These conversations don’t have to happen in one sitting. Think of it as a series of gentle check-ins over time. A chat over a cuppa. A comment while looking at old photos. A question prompted by a song, or someone they knew who has died. Bit by bit, you might gather their thoughts, wishes, and feelings, without overwhelming them.
4. Use Memory-Friendly Prompts
For people with dementia, abstract questions like, “What kind of funeral do you want?” might be too open-ended. Try using specific, memory-friendly prompts instead…
“Do you like the idea of a burial, or being cremated? Would you like people to wear something bright, like your favourite colour? Is there a song you’d want people to remember you by?” These can evoke emotions and preferences even if their memory is patchy.
5. Focus on Feelings, Not Just Facts
Even if a person can’t plan in detail, they can often still express feelings. Do they want to be remembered as joyful? Traditional? Earthy? Do they want something peaceful or celebratory? Knowing how they want to feel, or how they want others to feel, can be incredibly useful in shaping a ceremony or legacy that honours their spirit.
6. Write Things Down Sooner Rather Than Later
If they’re still able to express themselves clearly, help them write down or record their wishes. This might include:-
Funeral or memorial preferences
Favourite music or readings
Who they’d want to speak or attend
Preferences around medical care and end-of-life decisions
Simple tools like a “wishes” booklet or a “conversation starter” card can help.
7. Be Present, Not Perfect
You might worry about saying the wrong thing or upsetting them. That’s natural. But your presence, your willingness to listen, and your respect for their dignity will mean more than any perfectly-worded question. Sometimes just saying, “I don’t want to upset you, but I’d really like to know what matters to you when you’re not here anymore” …can open the door.
8. When They Forget You’ve Talked About It
Yes, it might happen. And yes, that can be hard. But remember: even if they forget the details, the feeling of being listened to and respected often lingers. If the topic keeps upsetting them, you may need to shift focus from direct planning to simply creating comfort, calm, and legacy in more gentle ways, like memory boxes, music, or photo albums.
9. Involve Them in Rituals While You Can
If they enjoy music, flowers, nature, or spiritual practices, you can begin weaving these into your time together now. Doing so can help them feel connected, valued, and celebrated long before the end. It’s not just about talking about death…it’s about living fully until the end.
10. And Finally… Trust Your Heart
There’s no script for this. Every person with dementia is different, and every family dynamic is unique. But the fact that you’re thinking about this conversation at all means you’re already approaching it with love. And that, more than anything is what matters most. Be gentle with yourself as well through this process, it will take a lot out of you.
If you want to know more about becoming a dementia friend or any help, reach out to alzheimers.org.uk. Everyone has the right to a dignified end of life, and living with dementia should not be the barrier it is for so many.
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