What to Say When You Want to Record Someone Who is Living with Dementia
There's a particular kind of grief that arrives too late. It's the moment a family realizes they have photographs of someone, but nothing of their voice. No recording of the way they told that one story. No trace of the laugh. With dementia, that moment has a deadline nobody circles on a calendar, and it tends to arrive sooner than anyone expects.
We built the leaf app so that families could have an effective way to record these precious memories. And over the last year, the families using leaf to record a parent or grandparent living with dementia taught us something we didn't fully understand at first: recording someone who is living with dementia presents unique challenges. The questions that work beautifully when someone is living with a typically aging brain can quietly wound someone whose memory is changing. “Do you remember when...” becomes a small test they can fail. And once someone has been made to feel they've failed, they often stop wanting to talk at all.
So the real question isn't whether to record. It's what to say.
Meet the person in front of you
The most useful idea we've found for this comes from Teepa Snow, a dementia care educator whose Positive Approach to Care® organization has shaped how families and professionals around the world approach brain change. Teepa’s GEMS® State Model describes dementia not as a straight decline but as a series of states, each with its own strengths still intact. A person can move between states across a single day. The point isn't to diagnose a stage and treat someone as if they are fixed there. It's to notice who is in front of you right now, and meet them there.
That single shift changes everything about recording. When you stop asking someone to prove what they remember and start inviting them to share what they still have, the pressure lifts. The conversation opens. And what you capture is not a record of decline. It's them.
A few things that help, at every stage
Never quiz. Trade questions like do you remember for prompts such as tell me about, and skip yes/no questions. One approach that helps is what Positive Approach to Care® calls I Share, You Share: you offer your own answer first, so it feels like a conversation rather than a test. A question with one right answer is a question someone can get wrong. A story cannot be failed.
Pick a good moment. Record when they're alert and at ease. Use their preferred name to gain their attention before you begin, and allow enough time that they don't feel rushed. A calm, unhurried moment gives you far more than a scheduled one.
Let silence sit. Especially as dementia progresses, answers may come slowly, or arrive as a sound, a gesture, a smile rather than words. Those count. Some of the recordings families treasure most are barely words at all.
Thirty seconds is enough. You are not making a documentary. A greeting, a hummed few bars of a song, one sentence in their voice. Short is plenty.
When words get harder, change what you’re capturing
Early on, you can ask for the big stories, the ones they've told a hundred times, the ones the whole family knows by heart. Those well-worn stories are gold, and they last the longest.
Later, the interview quietly retires. You stop asking questions and start capturing what's already happening: the humming while they fold a towel, the way they say your name, a familiar song they'll join if you start it. Music reaches people long after conversation gets hard, so singing together is often the truest recording you can make.
And near the very end, the direction of recording can reverse. Hearing often remains when little else does. So the recording becomes something you make for them, your own voice telling them what they've meant to you, played gently at the bedside. Families tell us these are among the most meaningful things they've ever made.
We made a free resource to help
Knowing all of this in theory is one thing. Sitting beside someone with your phone, not sure what to say, is another. So we put it on a single page: gentle question prompts and things to say, organized by GEMS® State, that you can keep on your phone or print and bring with you.
It was created using Teepa Snow's GEMS® State Model, with permission from Positive Approach to Care®.
View the resource · Download the PDF
However you use it, and whatever app or recorder you reach for, we hope it helps. You won’t wish you had one more photo. You’ll wish you could hear them again. That’s what this is for.
Positive Approach® content is based on the GEMS® and the techniques, strategies, and overall approach to care created and developed by Teepa Snow with Positive Approach, LLC. GEMS, POSITIVE APPROACH TO CARE, and POSITIVE APPROACH are registered trademarks of Positive Approach, LLC. PAC is a trademark of Positive Approach, LLC.
