if they
forget
your name
for you, not the grown ups
Your grandparent has dementia. Now what? Real ideas for what to do, what to expect, and where to turn when you need a bit of help too.
why i made this
I always had the best time with my grandma. She made me happy. Then she got sick.
I was pretty young, so at first I did not really understand what dementia meant. I just knew things were changing. She was changing. But I also knew that when I was with her, it made her happy.
That did not mean visiting was always easy.
Sometimes I did not want to go. Sometimes I had no idea what to say. I did not know if I should correct her, distract her, keep talking, stop talking, act normal, act differently. There were definitely times when I felt awkward, bored, sad or just completely out of my depth.
But I kept learning one thing.
Showing up mattered.
It did not have to be a perfect visit. I did not have to say the right thing or somehow make everything better. Sometimes just being there was enough.
Over the years, and after a lot of visits, I started to notice the little things that made being together easier. What made her smile. What made conversation flow. What made things harder. What I wish I had understood sooner.
Then I started talking to my friends and realised I was definitely not the only one figuring this out as I went. Lots of them had grandparents with dementia too. They had the same questions, the same awkward moments and the same feeling of wanting to help without really knowing how.
There is loads of information about dementia. There is loads of advice for carers and adults.
There is not much for us.
For the kids and grandkids who still want to make their grandparent laugh. Still want to hang out with them. Still want to bring a bit of light into their day, even when things do not look quite like they used to.
So this website is everything I learnt along the way. The things that worked for us, the things I tried, and the things I now wish I had known earlier and done more of.
I hope it makes things feel a little less confusing.
And I hope it helps you keep showing up.
find your way around
ideas for when you're together, when you're not, and gifts that actually mean something.
make a playlist
Find the songs they loved before they were your grandparent. The ones from first nights out, crushes, heartbreaks, bad haircuts, whatever being 17 looked like for them.
Music can hang around in the brain even when newer memories get harder to hold onto.
If you have no idea what they were listening to back then, head to our .
put on a performance
Show them your thing.
Dance, sing, act, do football tricks, play something, make them watch the routine you have done 400 times in your bedroom.
You do not always need loads of conversation. Sometimes giving them something to watch is enough.
karaoke
Pick songs they know and sing them together.
There is something kind of amazing about someone forgetting a name, then suddenly knowing every word to a song from 40 years ago.
Lyrics on your phone. Volume up. Done.
make a bouquet
Buy some flowers or pick a few from the garden and make something together.
Let them choose what goes where. Let them tell you that one looks wrong. Move it. Move it back.
The point is not the bouquet. It is having something to do together that does not need loads of talking.
look through old photos
Old photos can open up whole conversations.
Try "What's going on here?" rather than "Do you remember this?"
Maybe you get a story you have never heard. Maybe you get three completely different versions of the same story. Maybe nothing comes up at all.
You are not checking their memory. You are just seeing where the photo takes you.
watch old videos or a classic film
Put on something from their world.
An old home video. A film they loved. Something with faces and music that already feel familiar.
They might remember every second. They might barely follow it.
You can still watch it together.
For ideas from their era, head to our .
colouring
Pick a page. Sit down. Colour.
No pressure to talk. No pressure to make the visit deep or meaningful.
Sometimes doing something quiet next to each other is the nice bit.
make a scrapbook or memory box
Photos, tickets, postcards, random little things with a story attached.
Put them in a book or a box and keep adding to it.
It does not need to be neat. It definitely does not need to tell their whole life story.
Just keep the things that feel worth keeping.
go for a short walk or sit outside
Get out of the room for a bit.
Walk somewhere if they can, or just sit outside together.
It changes the mood, gives you something to look at, and means you are not sitting face to face trying to invent conversation.
chair yoga
Put on a simple chair yoga video and try a few stretches together.
Five minutes is enough. Two minutes is enough.
It is not a workout. It is just something different to do with your body for a bit.
dance
Put on one of their songs and move.
Standing, sitting, tapping a foot, whatever works.
It does not have to look like dancing to count.
read short stories
Read something out loud.
A story, a poem, a few pages of a book.
They do not need to remember the beginning by the time you reach the end.
Sometimes hearing your voice is enough.
tea time
Make tea. Bring something good to eat. Sit down.
It sounds almost too obvious, but some of the best visits are the ones where nothing much happens.
You have tea. You sit together. That is it.
And that can still be a really good visit.
Enter your grandparent's age to find out what songs and movies were popular when they were young.
Pop in an age between 1 and 120 to see their era.
Songs from then
Films from then
Based on well known hits from each year, not an exact chart from any one country or week.
Visits can be funny, awkward, boring, sweet, upsetting and weirdly normal, sometimes all in the same hour.
You can love your grandparent and still not know what to say to them. You can be happy to see them and also want to go home. You can laugh at something, then feel guilty for laughing. None of that makes you a bad person. It just means this is hard sometimes.
It might feel awkward. Maybe you used to talk without thinking and now you suddenly have no idea what to say. There are silences. You become weirdly aware of where to sit, what to ask, whether you should be doing something. You do not have to force it. Having something else going on can make everything feel easier. Our has ideas for exactly that.
You might get bored. You can love your grandparent and still be bored out of your mind after two hours in the same room. Both things can be true. Bring something to do. Put a film on. Plan around lunch. And do not feel guilty if they are not joining in with everything. Sometimes just being there is the thing.
Everyone else might seem stressed. Your mum is snappy. Your uncle is doing ten things at once. Someone is having a whispered argument in the kitchen. Caring for someone with dementia can put everyone a little on edge. Help if you can, but do not automatically make yourself useful every second. You are their grandchild, not another carer.
They might completely surprise you. One week they might not know your name. The next they are laughing at something, telling an old story and feeling so much like themselves that it catches you off guard. Dementia is not a straight line, so try not to decide what kind of visit you are about to have before you walk through the door.
You might get annoyed. Maybe you have answered the same question six times. Maybe they keep interrupting you. Maybe everyone keeps telling you to "just be patient" and you are trying, but your patience has officially left the building. Take five minutes. Go upstairs. Get some air. Look at your phone. Being frustrated does not cancel out how much you love them.
You might feel really sad. There is no easy way to say this one. Being forgotten by someone who has known you your whole life can hurt. They might call you your sibling's name, think you are your mum at 17, or look at you like they have never seen you before. You can know it is the dementia and still feel completely crushed by it. What they can remember about you has changed. What you have meant to each other has not.
Some visits will be brilliant. Some will wipe you out. Some will feel completely ordinary until something about them pops into your head three days later.
There is no perfect way to be the grandchild of someone with dementia.
You do not have to entertain everyone. You do not have to be endlessly patient. You do not have to act fine because everyone else already has enough going on.
This is happening to you too.
And if it starts taking up more space in your head than you know what to do with, tell someone. A parent, a teacher, another adult you trust. You do not have to wait until it feels massive before you talk about it.
Head to if you want somewhere to start.
Every person's dementia looks a little different, as dementia comes in many types and phases. This story reflects one common pattern of memory and recognition, but isn't a story that everyone will recognise, and that's okay.
You ring the door bell. It's a Saturday visit, just like every week.
I wasn't expecting anyone.
The door opens, for a second they look surprised and then they relax a little.
Oh, someone familiar is at my door. I know I know them. I just can't find the name yet.
"Hi grand__, it's (name), your granddaughter/son. How are you?"
You go in for a hug.
I'm not quite sure who they are, but something about them feels safe, so I'll let them hug me.
You feel the pause before they hug you back, and loosen your grip a little.
If you ever feel like this is overwhelming, make sure you reach out to get support.
Talk to someone you feel comfortable with, such as
- a parent or guardian
- a teacher
- a friend
- an aunt/uncle
- a counsellor
If you want to get further support, you can contact
Childline
Call for a free chat on 0800 1111
Send Childline a message
Young Minds
Call on 0808 802 5544
Use their free webchat service
real kids, real grandparents, real stories. you're not the only one going through this.
I'd heard of dementia, but I didn't really know what it was. I never really knew what to say or what I was meant to do. My grandma loved Neil Diamond though, so we used to put his songs on and sing together. That was always nice. It made her happy, and it made me happy too.
We used to take Nanny out for meals. I sometimes found them really long and a bit boring, but she loved my drawings and the stories I'd made up. So I'd sit next to her and show her everything. I think she probably liked that more than the food.
Sometimes he'd say or do something funny and I'd laugh, then wonder if I was actually allowed to. But then he'd start laughing too, and that made it feel okay. It was just really nice hearing him laugh again.
I know it was hard for her when she had to start using a wheelchair, but we called it her Rolls Royce. She thought that was really funny and loved it.
We made her a calendar with photos from the year and she loved looking through it. It was good for me too because if I didn't know what to say, I could just pick a photo and we'd talk about that.
He'd always loved watching football. I'm not sure he always knew exactly what was happening anymore, but whenever we scored I'd make sure he knew. It was just nice having something we'd always done that we could still do together.
Sometimes he was just like normal and other times he felt really different. I found that hard and I used to think maybe I had done something wrong.
Then I talked to my friends and some of them felt the same. That helped me understand it wasn't me. It was the dementia.
We all love our grandparents so much. We just miss how they used to be sometimes.
Want to do something with all of this?
Raise money.
And no, you do not need to raise thousands, let alone millions. A bake sale, a sponsored swim, a slightly chaotic talent show. It all counts.
The money can help fund dementia nurses, research and support for families, but your fundraiser does not need to be huge or wildly impressive to matter.
Make it fun. Make it competitive. Make people care for five minutes longer than they were expecting to.
ideas that do not feel like homework
purple bake sale
Take over a table with purple everything.
Cupcakes, icing, sweets, cookies. The more chaotic the colour scheme, the better.
Sell it all. Donate the money.
sponsored walk, run, ride or swim
Choose the one you hate least.
Set a distance, get sponsored and make it just difficult enough that people believe you have earned the donation.
quiz night
Get teams together and charge to enter.
Make the questions good. Make one round impossible. Make someone far too competitive.
Winning team chooses the dementia charity.
purple day
Convince your school to let everyone wear purple for the day.
One item or full commitment.
Charge to take part. Extremely low effort. Surprisingly effective.
grandparent match-up
Collect photos of grandparents and grandkids and mix them up.
People pay to guess who belongs to who.
There will be baby photos. There will be questionable hair. There will be arguments.
Perfect.
raffle
Get prizes donated and sell tickets.
Simple. Reliable. No one has to run 10K.
movie marathon
Pick a series. Get snacks. Start watching.
People sponsor you per film and you keep going until someone falls asleep.
The worse the final film, the more impressive the achievement.
assembly takeover
Talk about dementia for five minutes in assembly.
Tell people why it matters. Keep it personal. Skip the lecture.
Then share a donation link or collect afterwards.
hair and nail bar
Set up somewhere at school or at home and charge for braids, nails or simple designs.
People leave looking better. You raise money. Everyone wins.
forget-me-not pins
Forget-me-nots are a symbol of dementia awareness and remembrance.
Sell official pins, wear them, give them out, make them part of your fundraiser.
Tiny object. Quite a lot behind it.
battle of the bands or talent show
Music, dance, comedy, whatever people can actually do.
Charge for tickets, crown a winner and let them choose where the money goes.
Much better than another lunchtime bake sale if your school likes a bit of drama.
dance-a-thon
Build a playlist and keep dancing.
Get sponsored by the hour, do it in teams and let people pay extra to hijack the playlist.
This can get unhinged very quickly.
digital detox
Put your phone down.
Yes, properly.
Get sponsored for every hour you stay offline and make it competitive with friends or family.
Probably the most brutal challenge on this page.
how to plan your fundraiser
You have the idea. Now you just need to make it actually happen.
Do not overcomplicate it. You are planning a fundraiser, not Glastonbury.
Pick your idea.
Choose something that fits the time, people and energy you actually have. A bake sale can come together pretty quickly. A dance-a-thon might need a little more organising.
Pick a target.
Decide how much you want to raise and where the money is going.
£100? £500? More? Give people something to aim for. Watching the total creep closer to your goal is also weirdly addictive.
Get the boring permission bit done.
If it is happening at school, ask a teacher. If it is somewhere public or involves money, get a parent or adult involved too.
Not exciting. Still necessary.
Choose when and where.
Avoid exam week, the day everyone is on a school trip, or anywhere nobody is actually going to walk past.
Basically, make it easy for people to show up.
Tell everyone.
Friends, family, classmates, teachers. Posters, group chats, school emails, assembly. Use whatever gets people to actually notice.
And ask other people to share it too. You do not have to do all the promoting yourself.
Make donating easy.
Cash works, but an online fundraising page can make life much simpler.
People can donate straight from their phone, you can see the total going up, and there is less chance of ending the day with £47 in coins sitting in your bag.
Tell people what happened.
Share how much you raised and say thank you.
People like knowing that the thing they joined in with actually did something. Plus, if you ever decide to do another fundraiser, you already have people on side.
Dementia can be a lot to get your head around, especially when it is happening to someone you love.
One minute they seem completely themselves. The next they are asking the same question again, forgetting something you just told them or doing something that feels really unlike them.
So first things first, dementia is not one single disease. It is the name for a group of symptoms caused by changes in the brain. Those changes can affect memory, thinking, language, behaviour and how someone understands what is going on around them.
It is also not just part of getting older. Dementia is much more common in people over 65, but it is caused by changes in the brain, not simply by age.
About 1 in 3 people will develop dementia in their lifetime.
why dementia can look different
There is not one version of dementia. Different types affect different parts of the brain, which is why two people can both have dementia and experience it in completely different ways.
Alzheimer's disease
Alzheimer's is the most common type of dementia.
It often affects recent memories first. So someone might forget what happened earlier that day but still remember every detail of something that happened decades ago.
It can also make thinking, speaking and finding the right words more difficult.
Vascular dementia
Vascular dementia happens when the blood supply to parts of the brain is reduced, often after a stroke.
Memory can be affected, but you might notice other things too, like someone struggling to concentrate, make decisions, plan something or work out how to do things they once found easy.
Dementia with Lewy bodies
Dementia with Lewy bodies, or DLB, can affect attention, movement and sleep.
Some people also have visual hallucinations, which means they see things that are not actually there.
Even if you know what they are seeing is not real, it can feel completely real to them.
Frontotemporal dementia
Frontotemporal dementia affects areas of the brain linked to personality, behaviour and language.
That can mean someone starts saying or doing things that seem really out of character.
It can feel strange, upsetting or even embarrassing sometimes. But the dementia is changing how their brain works. They are not suddenly choosing to become a different person.
Mixed dementia
Some people have more than one type of dementia at the same time.
This is known as mixed dementia.
what happens over time?
There is no single timeline for dementia.
It usually gets worse over time, but everyone's experience is different. There can be good days, difficult days and days that are a bit of both.
Some changes happen slowly. Others can seem to happen much faster.
The first signs can also be quite subtle, like forgetting things more often, getting confused or struggling to find the right word, so it can sometimes take a while before anyone realises what is happening.
Dementia is not contagious, and there is currently no cure. But medication, care and support can help with some symptoms and make everyday life easier.
And this bit matters.
Dementia can change someone, but it does not erase everything about them.
They can still laugh at the same joke. Love the same music. Want their favourite food. Enjoy being with you. Have a good day. Have a really good moment.
You also do not need to become an expert in dementia overnight.
You are allowed to find it confusing. Sad. Frustrating. Funny sometimes. Or all of those things at once.
You do not have to get everything right.
Being there matters
find out more
If you want to find out more about dementia, you can visit these websites:
Dementia UK
Full of useful information and short videos about dementia, with a dedicated section for kids and teens.
dementiauk.orgAlzheimer's Society
The UK's leading dementia charity, focused on dementia support, advice and care.
alzheimers.org.ukAlzheimer's Research UK
Focused on dementia research happening right now, including how to get involved through fundraising.
alzheimersresearchuk.org