Leeds have just recruited 14 Memory Support Workers to support people with dementia and their carers across the city. This week they started their team training and I was invited to go along to share my recent experience of being a family dementia carer – someone they might meet when the job starts.
We packed into a small room but there is no small ambition for this group – these people will make a difference to future dementia care planning and help enable anyone who gets a diagnosis of dementia to find the right information for them and enable positive good choices as they plan their future.
My brief was to shed light on what it has been like to go through the dementia carer experience in the past six years. I had agreed to share the story as a thank you, to the current and previous services that have been doing the job up until now… and I hope, to help inform future services as new initiatives develop. The team all introduced themselves to me individually, which was a great start – it’s always easier to do a talk when you know who you are speaking to. I heard #NHS #LYPFT #OT #Homecare #AlzheimersSociety #DegreeinDementiaStudies #Psychology and more… but it was very clear that we have a diverse group of people who together will make a great team – there’s definitely potential for a 1+1=3 outcome.
I delivered my talk to a very eager audience… the most engaged yet. As I showed the old booklets and leaflets that I had received, the new team quickly retorted with – “here’s the new material you’d get today” (so I look forward to digesting those two booklets – thankyou!). The questions and comments I received filled me with huge confidence that there’s a lot of knowledge in this team and an eagerness to share and support each other. (You don’t see this picture when you are a carer outside the ‘system’ but in the home caring for your loved one.) I invited anyone who wanted to connect to me at @wecaredesign on twitter – the place where I got most info and connected most regularly to support in the UK and around the world – I already have two followers, so that’s a start.
I really want to use my experiences to benefit others and help inspire future services. When I first found out Dad had dementia, I wished that I’d been able to contact other people who had already been through the experience for their wisdom… this proved impossible locally as I was working full-time and most support groups met during working hours. I did find cosupport eventually, but not in Leeds but in the Highlands of Scotland via Twitter, where a guy was caring for his mother and tweeted back to my questions in the early twitter days (before services and charities arrived). This isn’t the experience of a lot of carers because they are either not working and or not really happy with online communications. But I hear the number of ‘working carers’ is going to increase and we will have a sandwich generation where families have to look after their own children as well as their parents at the same time… so the wider the network of know-how in the city the better, and for some that will be online. I didn’t deliver my talk on Digital Tools for Dementia this time, but there seemed to be some interest.
This team are going to deal with lots of different kinds of people in all kinds of situations and from all kinds of backgrounds – Leeds is such a diverse place on so many levels. I was just one carer in a haystack – but one who brought a design/problem solving outlook, ‘working carer’ challenges and ‘digital and social solutions’ to the forefront – lots of food for thought. Working carers and digital savvy carers are not yet ‘typical’ in today’s dementia patient and carer community – but people’s expectations are steadily changing.
I’m looking forward to connecting with the group and sharing more insights over time and maybe even collaborating at some point again – they all have my email, so all I can say is ‘watch this space’. Something tells me dementia care might be slightly less scary with this team around… Good Luck! and thank you for including me in your training sessions at the beginning of this new service.
If you are already online and want to connect to this group – the twitter account is @AlzSocLeeds and if you are a carer you can also follow @CarersLeeds where a wide range of carer support can be found.
Photo Credit: Michael White, Alzheimer’s Society Leeds