Liz's lockdown story

Supporting people with young onset dementia

I work for YoungDementia UK and have been supporting people and their family members with a diagnosis of young onset dementia for two years now.  My job role is usually based around visiting families, having one to one sessions, running groups, courses and information days.  If anything, I would say that I do not usually get enough office time, and I rarely sat at my desk for longer than a few hours at a time.

As the coronavirus pandemic started to grow, and with little understanding of what was to come, the first few days of office work felt like a treat, a time to be able to catch up on all those little jobs I needed to do, file away some work, tidy up some documents but as things got worse and then the eventual lock down began, I started to realise that we were going to be at a real disadvantage in not being able to go out and about to support people living with a diagnosis. 

Reacting quickly and changing the way we support people 

Our reaction to this issue was pretty swift.  We immediately started to look into how we can bring people together remotely, to explore ways that people could connect and share their current experiences.  We know that sharing with others who are living in the same situation as you is so valuable.  We started up virtual groups using the Zoom app, and over the last few weeks we have seen these groups grow in number and regularity, bringing joy, laughter and much needed peer support to our members. 

Hosting a growing number of online groups 

In the last month we have moved our support groups online with two peer support groups, a weekly group for family members, a group specifically for people affected by frontotemporal dementia, a virtual walking group where we 'hiked' up and down the Stratford upon Avon greenway and hosted an evening group gathering.  We have expanded our online group offering as they have become more and more popular, and I've had lots of comments from people saying how nice it is to be able to support each other going through a similar experience.  Feedback has included, ''These meetings are my saving grace and I can recharge my batteries,' 'It was a real tonic to hear everyone, it has made me more positive this week' and 'it gives us a connection with everybody which is so important to keep.'

Our members are finding that emails afterwards with useful links and information based around the discussions in the online meetings to be useful and allows us to support and provide information remotely.  We also use our office time to call and connect with those who live alone, provide advice and support to family members and are aiming to be a base for people should they need our help.

Helping however I can

Living with dementia in a normal world is hard enough, so you can imagine that living with dementia in lockdown brings its own unique and difficult challenges.  I am amazed daily by the resilience, adaptability, stamina and sheer grit of our members, who are all doing their best in this current situation.  If I can offer support, friendship and help to them, and all from my office then I am more than happy to continue to do so for as long as is necessary.

- Liz Rose is a Young Onset Dementia Advisor at YoungDementia UK, pictured doing a thumbs up top left alongside members of our online PACE group

April 2020

Share this page