Tori's story

I work for Dementia Together as the Young Onset Community Navigator.  I have now been supporting people with young onset dementia and their families for nearly a year now.  This is a pilot project and therefore a completely new job role supporting people all across Suffolk. 

Day to day I am usually travelling around the county making home visits to families, making connections with local organisations to promote the support, planning future activities for the Suffolk Young Dementia and taking phone calls with service users to continually support them and their families. 

With this role I run The Suffolk Young Dementia Network which is a monthly support group where we take part in different activities everything month.  So far we have already; been on walks, played footgolf, painted ceramics, made landscape collages, animal therapy with Bert’s Amazing Creatures and had a coffee morning.  It was great to see the group enjoying a different range of activities with their loved ones and meeting and supporting others on the same journey.  The network was really growing!

Just before the lockdown began, we had lots of exciting activities planned for the network, including singing with Pop Chorus, a day trip to the imperial war museum in Duxford, visiting the Eden Coppice Trust and a picnic in the summer.  However, due to the lockdown we had to stop the face to face meet ups, meaning we had to adapt the way our support service is delivered.

When the lockdown started the Dementia Together team completely adapted the service so we were able to support, give advice and signpost entirely over the telephone.  We were receiving an increasing number of calls to the service as the challenges of lockdown began.  We were also offering holistic assessments to support people whether this were over the phone or over a video call.  Additionally, we have been able to set up virtual support on Zoom including; Monday lunch chat, wellbeing sessions, creative sessions with reminiscing and a Friday Pub Quiz.  All of these being very informal and some light relief from the uncertain times we are all experiencing.

When the lockdown eases and rules allow I am hoping to offer a distanced meet up with the Suffolk Young Dementia Network in an open space, maybe a picnic or a little bit of exercise in the park.  There have been many challenges faced by people with dementia and their families but I have seen service users being so open-minded and positive during these times and being able to stay connected is really driving people through.

For anyone in Suffolk who would like the support or access to the virtual meet ups, I am working full time hours during the week to support people with young onset dementia and their loved ones.  I am also always open to new ideas to provide support during lockdown and welcome anything that people with young onset and their family think of that will benefit them. 

I can be contacted via email or you can contact our helpline on 08081 688 000.  Alternatively, our website can be found here.  

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