What John Ramsay Learnt Living With A Loved One With Dementia
Two years ago John Ramsay called time on his career as a corporate lawyer to work on bringing a Dutch innovation called Tovertafel to the UK. The word means “magic table”, and it’s a variety of games that can help engage people with mid- to late-stage dementia using interactive light animations that are projected onto a table.
We spoke Ramsay about his own experience of living with a loved one who has dementia, and why he dropped everything to work on Tovertafel.
How did you come to be involved with Tovertafel?
I wanted to do something that gave me more purpose, particularly outside of the courtroom. About two years ago I sat down with a good friend of mine called Dr Hester Le Riche and she told me about this amazing product called the Tovertafel and how it was dedicated to creating moments of happiness in people with dementia. From that moment on I opened up more about my own story. My dad was diagnosed with dementia when I was about 12. He was 52 and a consultant at Guy’s and St Thomas’. Growing up as a teenager with your role model gradually becoming someone else, going on this journey where he’s not really able to interact with you, left quite a mark on me.
The Tovertafel is an interactive projector, which projects light animations on to any table. The light animations have been designed to spark the greatest level of interaction in someone with mid- to late-stage dementia. It’s about putting the loved one with dementia in the middle, and working out what is best for them in terms of interaction. When I saw it myself for the first time… you’d have to have a heart of stone not to be moved by it.
What are the best ways to interact with a loved one that has dementia?
It’s important to understand that it’s a journey and you have to prepare yourself. You have to understand where that journey is going to take not just your loved one, but you yourself. It’s important to try to build the environment around their needs, to take external advice and to understand what sort of things will affect a loved one with dementia – short-term memory loss, confusion, a lack of language.
I always try and make the language as positive as possible, because there’s a lot out there that talks about suffering and patience, and negative words like that. It’s obviously clear that that can happen, but people are still living with dementia and they can still be in the present. Once you get dementia that is not the end of everything. Yes, you have a condition, but it’s important to recognise that there is still a life to lead.
Looking back I wish I’d done more of that with my dad. He loved rugby, he loved gardening, he loved doing lots of different things, and we didn’t really build them into his daily routine. We actually thought we were protecting him from it. Therefore he did not feel quite himself and at home and couldn’t focus on things, because it wasn’t necessarily what he enjoyed doing.
The bigger problem with dad was that he was literally working in an NHS hospital on the Friday, and then on the Monday not allowed to drive, let alone work. Can you imagine if I told you tomorrow that your entire routine, your entire daily life, is to be taken away from you? With or without dementia, that’s going to be hard to take, but with dementia as soon as your routine goes it has a really profound effect.
It’s important to give as much love, patience and understanding as possible, but it’s also important to see where the condition and the man lie. I see a pendulum. It might be the condition that’s making dad act in a certain way, but you’ve got to recognise that and not take it out on the man, who’s still there. Sometimes you get frustrated but obviously he’s still your dad, still a man and he’s not doing it intentionally. It means taking a deep breath and treating him as a human, no matter what, and finding the things that are really going to engage him. The onus is on you.
So it’s important to remember that people still enjoy the same things?
Yeah – find a way to bring those into their life. For instance dad loved gardening, but as soon as he was diagnosed he was not allowed to mow the lawn because that could be dangerous. Whereas maybe we could still have been doing gardening in a safe way and he would still have been doing something that he really loved.
How important is a routine?
You’ve got to try to have a routine. You find out what works, and invariably what works one day is likely to work the next day, especially when it gets to the stage when each day is a whole new day. It’s important to find out the things that help spark interaction and create the happy moments. Moving on to Tovertafel, when you hit the mid- to late stage of the journey, it’s designed to spark interaction. It might seem to just be lights on the table, but they’re designed in such a way that it triggers interaction in a very safe environment.
Is the Tovertafel a personalised experience?
Actually we shy away from that – it’s the other way around. What we’re trying to do is be as inclusive as possible. We find general themes like bursting bubbles, sweeping up leaves or catching fish, so you create a social environment. If you weren’t on your journey you might be playing bridge or going down the pub, and it’s replacing that moment.
You don’t want hundreds of games, because it doesn’t work. You want repetitive games. In the really late stages every ten minutes is a new ten minutes, and people don’t necessarily understand that when you’re not confronted with it. So it’s important that if something works, its going to work in ten minutes’ time, or half an hour’s time, and that’s how you gain the structure you need.
Is there something similar you can do with a loved one in the early stages of dementia?
Absolutely, but I think it’s more about traditional activities then. You’re still able to go for walks, go out for dinner and make sure they don’t get isolated. Try to keep them in their world for as long as possible. But at some stage they will become less mobile or talkative and engaged. It’s technically termed passive, but I prefer to say something like withdrawn. And that’s where the Tovertafel is key, because 90% of people with dementia become withdrawn, so what we’re trying to do is stimulate them to be more active.
Some people might reach out and touch the lights, and some people might just watch them, and that’s brilliant, because they weren’t watching things before, so it’s having a profound effect. Or other might start socialising, communicating to people around it, or looking you in the eye when they didn’t before, because the brain is more stimulated.
Where can people find Tovertafel?
We started 18 months ago and we focused on care homes and day care centres. We’re trying to get them installed in the community. They get bought by care homes, libraries, GP practices, surgeries, hospitals, village halls, a church… We’re in 250 to 300 centres in the UK and almost 2,000 across Europe. The goal is to get to ten million people using it every single day.
One of the things we’ve just launched is the Tovertafel buddy scheme, where with each Tovertafel we reach out to a local secondary or primary school and we try to make sure that we can get regular visits from maybe sixth formers on work experience, or primary-school kids to come in and play. The advantage of this is we’ve created an intergenerational activity and young kids have something they can do when they’re spending time with their grandparents.