Supporting his gran, who had dementia, had a real impact on Neil Robinson. Now Neil has been an active Dementia Friends Champion for over two years and recently made the switch from face-to-face to online Sessions, as a result of the coronavirus pandemic.
In this interview, Neil tells us about his gran, his experiences of dementia, how he's adapted his Sessions during lockdown and why Dementia Friends is more important than ever.
1) Tell us a bit about your experience of dementia and why you decided to become a Dementia Friends Champion?
I was very close to my gran as I grew up and loved hearing the stories she told, her humour, her sense of mischief and more than anything her love. At one particular family gathering it had been a few months since we’d seen each other so I bounded up to her with a stupid grin on my face and my arms wide open. She hesitated and looked confused and turned to my mum who had been with her for the morning and asked who I was. It stopped me in my tracks and it’s a moment in time I’ll never forget. I wish I’d known more about dementia back then as I would have made much more of the few years she was still with us. But like many people I talk to now I didn’t think it would make any difference to her….and maybe I was protecting myself from facing up to the reality of the disease.
In terms of Dementia Friends, I was introduced through a work community challenge. We attended a Dementia Friends Session and my action was to see how I could increase awareness of the impact of dementia on family/friends/carers. I booked on a Champion training session and since then I’ve run face to face Dementia Friends sessions mostly within the workplace locally but also at different locations in the UK and to several local community groups. Every session I do gives me even more motivation as I see the difference in people’s awareness and most importantly their willingness and enthusiasm to do something different as a result.
2) How did you find the transition from face-to-face to online Info Sessions? What were the most challenging things about it?
To be honest the transition wasn’t anywhere near as hard as I thought it might be. I sat through calls describing how to run both webinars and live streams to see which one I thought was best for me and I’m much happier if it’s not my face on screen for long periods so the webinar was easy to decide as my preferred option.
I did a little bit of a practice run on my own and then delivered a session to 15 people on a call within Microsoft Teams. The only drawback with Teams was that when I ran the slides in presentation mode I couldn’t see the chat box and any comments coming through, nor who had joined or dropped off. I got round that by asking one of the people on the call to tell me what was being written in the chat box and that worked really well. For the next few sessions I do virtually I’ve arranged for an additional ‘helper’ to join me.
3) How have your online Sessions been going? Who have you run them for? What has the response been like?
All people within my workplace so far but I’m aiming to add public Sessions in the next few weeks and then run one or two a month. The response to the first one was fantastic. Everyone that sent me feedback afterwards said that they’d learnt something significant that they didn’t know previously. I had a few concerns about the cut down content in a 30 minute online version compared to a 60 minute face to face one but the impact is exactly the same. The bookcase analogy works as well as ever, as does the new example about a WW2 bomb disposal veteran in a nursing home. Everyone still gets a badge but it’s one they can put on their social media pages or email signatures rather than a physical one. The online feedback also meant people could do it there and then (or afterwards if they preferred) and it didn’t need collecting and posting so it saves time, effort and the postage cost.
4) What would your advice be to other Champions who are unsure about starting to deliver Sessions online?
First of all, pick whichever method (livestream or webinar) that suits you best. The content is exactly the same so it really is just personal preference.
I found it takes less organising doing it virtually, it’s much less time consuming overall as there’s no travel, no restrictions on venue etc and I think I’ll deliver a lot more sessions now that we have this online option. My face to face Sessions were sometimes one a month, sometimes several months in between the next. This way I can pick and choose a Session and it’s open to a much wider audience.
Do your first one to an audience you know relatively well who’ll give you honest feedback. They’ll understand it’s your first time online with Dementia Friends and you won’t feel so bad if you get a bit tongue tied or pause for what feels like an absolute age. I’m much less worried about my next session now I’ve done that first one and I can see the impact is just as good as it’s always been.
5) Why do you think raising awareness of dementia is important? In particular now, during the pandemic?
Raising awareness of dementia will always be important as it’s a disease that isn’t going to go away anytime soon. It will affect many of us at some stage either directly or indirectly and being able to understand the issues that both people with the disease and their friends/families/carers face on a daily basis makes it a little less scary than it may sometimes seem. It also means that people don’t give up and stop visiting or calling because they don’t think it will make a difference to the person with the disease. ‘They won’t remember so what’s the point’ – exactly what I heard myself say so many times with my Gran. I did still visit but I had no idea just what a positive impact I could leave on her by making the visit a fun and happy one. Sounds so simple but when you’re faced with someone who doesn’t recognise you again, nor what they did with you yesterday it can seem like a pointless thing to do. We know now that it isn’t pointless at all and that’s the biggest thing I learnt from that Dementia Friends Session I attended myself.
Raising awareness that a phone call is sometimes all that’s needed to leave the person with dementia with a happy and loved feeling for the rest of the day. You may have been restricted from face to face visits but just like the Dementia Friends Sessions, life still goes on, people still need love and support – we just have to do things in a different way to pre-2020 – just like everything else that we’re having to do a little differently!
