YoungDementia UK runs a monthly group called PACE, which is part of the DEEP network. All of the group members are affected by young onset dementia and they join together to act as positive activists, consultants and educators. They aim to teach others about what it's like to live with dementia.
The group has continued to meet during the coronavirus lockdown using Zoom and our members are keen to share their top tips of how to cope with the challenges the new way of life has brought.
Below is a list of their suggestions so far, but keep checking back, they are sure to add more as time in lockdown goes on!
Top tips from people affected by young onset dementia in lockdown
- There are free courses run by the Open University. We need to keep those old cogs whirring for as long as we can! - Edward
- Take advantage of the daily exercise, make yourself do it. Don’t let the day drift away - Des
- Exercise, running or cycling - it allows you to see the world around you. You have to keep your distance, but you can still feel like you belong - Mike
- Make the most of where you live, explore places on your doorstep – Jonathan
- The fine weather is a positive, take advantage of it and be in the garden – Phil
- Don’t get obsessed with the news, keep informed but don’t over-expose yourself to it – Neil
- If you need to, and it helps, you can take two walks. Look at the wildlife and nature around you, point out what you can see – Mick
- Get a camera out and record the things going on around you. Make a point of noticing and recognising the changes around you like the seasons, weather, plants growing etc - Jacqui
- Just try things; just try and see if you can do new things – Jacqui
- I take a walk at sunset, it’s the universe telling me it’s time to unwind and relax and start an end to the day – Jacqui
The whole group agreed on some other tips
- Being outside and doing the gardening, tending to the plants and gives you a sense of purpose and can really improve your wellbeing
- Routine and structure are really important
- Find pleasure in small things
- Learn and use mindfulness techniques. Take time to be in the moment, relax and just be...
And finally, one of the PACE group members, Jacqui, shared her personal daily checklist for maintaining well-being during lockdown
- Drink water
- Clean one thing / space
- Tend to something growing / living
- Be mindfully present to a sound or song: a sensory feeling, something you see, a spiritual practice
- Reach out to a human outside your home
- Do one thing that gets your heart rate up
- Do one thing that you will be glad you did later
- Do one thing just because you want to
- Get in at least one good laugh!
- PACE, Oxfordshire, April 2020