Making a difference with Dementia

By Sarah Goodyear, Dementia Friendly Leeds Campaign Manager

‘See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination’.
– Ralph Marston

Dementia can bring stereotypes. Many people have preconceptions about what a person with dementia can and can’t do. You can’t work, you can’t go out alone, you can’t do new things. Yet I know a group of people who might surprise you.

In Leeds we have a ‘DEEP group’. No, it’s not about discussing really deep topics. It stands for ‘Dementia Engagement and Empowerment Project’. It aims to empower people with dementia to increase awareness and services locally.

Our local Leeds group is called ‘Up and Go’. Our group members live with dementia and give guidance to businesses and services in Leeds. They also raise more positive awareness about living with dementia.

“I will forget today, but that doesn’t mean that today doesn’t matter”
– Lisa Genova, Still Alice

On 16th October 2017, four members of ‘Up and Go’ DEEP group and our Dementia Friendly Volunteer, Rebecca, took part in the student ‘Tech Challenge’. This challenge is run by Premier Farnell in partnership with Leeds Beckett University and Ahead Partnership.

It brings together students from colleges and schools across Yorkshire. They design and create innovative technology for people living with a condition.

The students are encouraged to talk to a group of people living with the condition chosen for that challenge. This year, the condition was dementia.

“I’ve got lots of ideas for the students. I’ve been writing them down”
– Marlene (DEEP member)

We arrived at Leeds Beckett at 10am and were led into a lovely, grand room and given a lovely, grand cuppa. We then split into two groups to talk to students about dementia throughout the day.

The students asked our member’s for their own experiences of dementia. The students also received feedback on their technology ideas. Below are some of the insightful questions and answers we had throughout the day.

How does dementia affect you?
  • Marlene: I forget to put oven gloves and burn myself. I also can’t judge how full liquid is in a regular cup – coloured cups are easier. Black mats are also difficult, they look like holes.
  • Bob: Me too, black mats are difficult. I poke them with my stick to check sometimes! I can get lost too. I know Leeds like the back of my hand, but sometimes it just goes and I don’t know the name of where I’m going. Have to keep calm when it happens, as stress makes it worse.
Do you have any coping strategies?
  • Marlene: I have a memory dog, she helps me a lot. I also leave things together. So a warm coat is always with the dog lead to help me remember it.
  • Bob: I leave notes for myself in doorways so I know I’ll look at them. I write them the night before and I write the date. Even though I won’t remember the date later on, I feel better if I know the date first thing in the morning.
What do you think to the idea of a light sensor for the oven Marlene? Or an app on your phone to track where you’ve come from Bob?
  • Marlene: Yes that sounds useful. Something to get my attention – I only have a small sticker on there at the moment and it’s easy to miss.
  • Bob: Yes that would be helpful to get back to a place, or for a regular trip.
How has your life changed since diagnosis?
  • Bob: When I was first diagnosed many years ago I thought that was it. But then I joined the dementia peer support network and it was the best thing I could have done. I’ve got good friendships with people I would never have met otherwise. I’ve started painting which I really enjoy. I lead a happy life.
  • Marlene: I don’t feel that different really, I’ve just carried on as normal. Stayed independent. I deliver dementia friends sessions, I go to talks and meetings. I go out with the dog. Just normal things. Because I’m still me.
 “We’ve really enjoyed today. Nice to think you might make a difference”

Peter and Nancy (DEEP members): It was wonderful to see the two generations working together to create new technology. But it was also wonderful to see the new understanding the students left with.

I saw the look of surprise on some students faces when they realised how active, independent and tech-savvy people with dementia can be. Of course, not all people with dementia do use technology, but some do. Avoiding any assumptions about dementia is vital.

“Thank you very much for your time”

Student: One of my favourite moments of the day was when a student group were leaving for lunch, and Bob reached out to shake a student’s hand. The student thanked him for his time. It was a lovely moment of connection and mutual respect.

I left even more aware of how dementia affects each person very differently. One person might have challenges with how they see things. Others may have challenges with navigating, or with language use.

Dementia can be very challenging. But it is a condition. It is part of a person, that’s all. People with dementia are still unique people. And all people, whether old, young, and living with dementia or not, have the ability to do remarkable things.

We are all really looking forward to seeing the technology the students come up with in the final competition next week.

 Useful Links

Language Use – A handy guide on what language to use when describing dementia

Environment Guide – Giving tips on how to make a building or space more accessible

Dementia Diaries – Hear people with dementia’s voices and opinions from across the UK

www.opforum.org.uk/dementiaOur website with more resources and support in becoming more dementia friendly in Leeds