Good to see everybody (21 of us) today and thank you so much for a really productive (and hopeful) chat.
Special thanks to Tessa from the Young Dementia Network for joining us. If you want to join the Young Dementia Network you can find more information here. https://www.youngdementiauk.org/young-dementia-network
and you will also find the link to their resources: https://www.youngdementiauk.org/request-network-resources
If you would like to watch and listen to the webinar Tessa mentioned you can find it here: https://www.youngdementiauk.org/generosi-tea
Whilst it is clear there is excellent stuff going on out there it is no surprise, sadly, that it is a postcode lottery around diagnosis and support.
Some key points stressed at the meeting included:
- The very different needs of people with young onset dementia – (diagnosed up to age 65).
- The significant unique needs of people with young onset e.g. – Speech and language therapy (SALT).
- Lack of co-ordination and working together across organisations and areas.
- Whilst a call out for national connections through technology – some people will experience significant difficulties with engaging on Zoom due to communication difficulties. Smaller, slower pace meetings on Zoom adapting some strategies for helping people to have a voice.
- People have so much to give, and want to, but may need extra support to do it.
- Hopeful expansion of young onset roles and profile through Young Dementia UK and Dementia UK merger.
- Admiral Nurses roles (nurses specialising in dementia) on the increase.
- The growth and development of the Young Dementia Network which now has over 3,500 members.
- Challenge the assumptions that professionals should have the solutions. Ask people living with dementia about what they wants and what works for them.
- A suggestion that there should be young onset hubs across the UK where people and groups can connect.
- There is a Young Dementia Network steering group which consists of mixed membership -if you would like to find out more about this contact Tessa –
- There is a monthly newsletter
- You can express an interest in being involved https://www.youngdementiauk.org/get-involved-network
Please do let us know about what you are doing in your groups.
Please also do let us know if you form a group and want to join the DEEP Network. The DEEP network is formed by groups across all agencies and ages.
Take care all and thanks for being part of the conversation.
The next facilitators Zoom is on Wednesday 10th March between 12.30 and 1.30. Please contact to book your place.
This meeting will be facilitated by Rachael Litherland from Innovations in Dementia
On Wednesday 17th March James Nagra from Making Space in Derby will give a short overview of his work supporting people to use (tablet) computers. This includes the support and information he has given to people.
