Writing down a parent's story when they have dementia
Written by Amanda Yaffe-Parker
What is realistic, what is worth doing, and how to have the conversation without turning it into a test.
A dementia diagnosis does not mean a story cannot be recorded. It changes what you are aiming for: not a complete timeline, but whatever the person can reach easily and enjoys talking about, taken on the day they are having. Follow what comes, never correct a date, and treat a story told three times as three chances at the detail rather than a mistake.
If this is why you are here
- Recall is patchy, and some days are better than others.
- You are worried a question will feel like a test.
- The older memories are still there, and clearer than last week.
What I am, and what I am not
I record conversations with people about their lives and write them into a story their family keeps. I am not a clinician, I have no dementia training, and nothing here is medical or care advice.
What follows is about conversation and about keeping a record. For anything about diagnosis, treatment, symptoms or care, go to the people qualified to help, starting with the GP or the memory service. Alzheimer’s Society publish practical material that is actually useful, including a leaflet called “This is me”, which is designed to tell professional carers who somebody actually is. Useful whether or not you ever write anything longer.
What is realistic
Change the aim, and the whole thing becomes possible.
You are not building a timeline, filling gaps or establishing facts. You are recording a person talking about what they can still reach easily, which is often the distant past, a job done for forty years, a street, a song, a route walked every day.
That material is not second best. A childhood described in detail by someone who can no longer tell you what they had for breakfast is still a childhood described in detail, and it is frequently the richest part of any family’s record.
How to ask
Take the day you get. Plans do not survive this. Some days there will be an hour, some days ten minutes, and there is no way to know in advance which one you are getting.
Mornings, usually. Most people are clearer earlier, though not everybody.
One short question at a time, and then wait. Long or double questions are hard work to hold.
Do not correct. Not the date, not the name, not the ending. Correcting turns a conversation into a test, and the person will feel they are failing it. If the facts matter to you, check them somewhere else afterwards.
Do not ask “do you remember”. It is the most natural phrasing in the world and it is the one that closes people down. “Tell me about the shop” works where “do you remember the shop?” does not.
Follow the feeling, not the fact. If someone lights up about a person, stay with the person. Accuracy is not the thing you are collecting.
Use objects, photographs and music. Something in the hands, or a song from the right decade, will often open a conversation that no question could.
Take the repeat. A story told for the third time is not a problem. It usually arrives with a detail the first two did not have, and that detail is the reason to keep recording.
The specific prompts are on their own page: questions to ask a parent with dementia.
When it goes wrong
Sometimes a question lands somewhere painful, or the person becomes distressed or frustrated. Stop, change the subject completely, and do something ordinary. That is not the end of the project and it does not mean you should not have tried.
Sometimes they will not want to talk at all. That is a real answer and it is theirs to give.
Consent, honestly
Someone who cannot follow a long explanation can usually still tell you whether they mind you recording. Ask plainly, ask again on another day, and pay attention to how they respond rather than only to what they say.
If other family members hold power of attorney or are closely involved in decisions, bring them in early. Not because a recording is a legal matter, but because a story is a family thing and it is better done openly.
If at any point it stops being enjoyable for the person, that decides it.
What a finished story looks like in this situation
Usually shorter, and built from more sources.
It tends to be their own words about the parts they can still reach, held together by what the family knows, with photographs doing more work than usual. Where there are gaps, the honest version says so rather than inventing a bridge.
Families are often surprised by how much it reads like them. That is the part worth having.
If you would like help with it
I work at whatever pace the person can manage, in short visits rather than long ones, with a son, daughter or carer in the room if that helps. I do not claim any clinical expertise and I will not pretend a conversation is going better than it is.
Tell me how they are on a good day and I will tell you honestly whether I think there is something worth doing.