Today DEEPers welcomed Tessa and Catherine from the Young Dementia Network to our session https://www.youngdementianetwork.org/
Worth having a look at all the resources created around young onset they have on their website. Tessa highlighted, as we all know, that young dementia remains an under recognised and poorly resourced part of the dementia world. Catherine welcomed new ideas, new membership and joint working in order to raise the profile of young onset dementia.
In our discussion with group members and facilitators we touched on a few issues. One issue was around the development of different forms of identification people are using to let people know that they may need support. Chris talked about going to a hospital for an unrelated to his dementia health issue. He had purchased a lanyard and badge which simply had ‘I have dementia’ written on the lanyard and badge in big letters. Nobody asked him about his dementia but he was mindful that his lanyard had been noticed and that staff took particular time with him to explain things (a bit too much time he remarked!). People talked about perhaps the overuse of sunflower lanyards in supermarkets and exploitation of getting to the front of the queue. Dementia NI have developed a photo membership card which is working really well by all accounts. They wanted to develop a form of ID because people were getting fed up of being challenged with ‘You don’t look like you’ve got dementia’. Young Dementia Network also have developed a card which can be downloaded or you can ask for one to be posted to you – one card includes the words ‘This may surprise you but I have young onset dementia’. You can find the link here https://www.youngdementianetwork.org/resources/young-onset-id/
We also talked about groups involved with creating travel guides and information, This feels particularly important to many people with young onset. Lifting the Cloud in Derby are currently working on a guide for tourist attractions in Derbyshire and SURF have previously created a guide to Liverpool. D-Mob also created a guide to Brighton when Congress was held there a few years ago. It was suggested that perhaps a template to encourage the creation of such guides with a young dementia focus may be useful.
Several people talked about the very successful ‘tea’ sessions with the network host every month and can be watched here https://www.youngdementianetwork.org/news-and-events/our-webinars/
Do you have any thoughts about how your young onset group may be able to contribute to the work of the Young Dementia Network?
Thanks as ever to all who came along today and took part in our discussion. Always in good spirit and very informative.
Please note there will be NO facilitator session next week (Wednesday 6th April).
