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Posted on 12 Apr 2019

Nottinghamshire Healthcare is celebrating ten years of its Working Age Dementia Service, which supports people under 65 who have a suspected or confirmed diagnosis of dementia.

The specialist service was set up in April 2009 in recognition of the diverse and often complex needs of people with working age dementia. The service offers a specialist diagnostic service to individuals below the age of 65 years who are experiencing progressive problems with their memory and thinking skills where dementia is suspected as a possible cause.  Following a diagnosis of dementia, the post diagnostic treatment service aims to help people to manage changing needs associated with dementia, maintain their independence, and promote health and wellbeing. A peer support service, a direct response to ideas from service users, carers and families, is also offered to facilitate links between people with similar lived experience.

Shelley, aged 45, from Nottinghamshire, who uses the service, said: “In November 2017, at the age of 43 I was told I had early onset Alzheimer’s disease. It was the most shocking and devastating news I had ever received. I thought my life was over.

“Fortunately for me, I was about to receive a phone call from the Working Age Dementia Service to arrange a home visit. At the first home visit everything was explained to me and my family and what the Working Age Dementia Service would be able to do for us. Straight away there was a friendly face giving us words of advice, encouragement and most of all reassurance. A care plan was made whilst practical support was offered. Having someone there so soon after diagnosis was so invaluable, I knew we were no longer alone. 

“Soon after diagnosis I was invited to attend a memory strategy group that would run for seven weeks. As a group we shared a lot of laughter and tears. We all had a mutual understanding of each other and how we were learning how to live our new lives. When the group came to an end, I’d gotten a new life to live, thanks to the given strategies and most importantly new friends and a better understanding of my dementia. With the continued support of the team and regular visits, just having the reassurance that they were there for anything, I started to notice a change in me. My moods were getting brighter and I no longer felt so detached from life, I had hope. 

“So, when I was invited to attend another seven week course with my husband, I couldn’t wait. This time it was for managing changes. Because dementia diagnosis is often lonely and isolating, especially under the age of 65, these friendships become so important so fast as we all understand each other’s struggles and you are no longer alone. In this group I learned to understand my dementia and myself. 
Changes will happen and we won’t be able to control them but having strategies in place for the future gives me confidence that I will be able to live my life with dementia. 

“I realise from doing recent dementia projects how fortunate we are in Nottinghamshire to have the support of such a wonderful team and all the amazing things they have helped us understand. Without their words of advice, I wouldn’t have gained the confidence I have today or have the ability to live my life to the fullest. I thank the service for their continued support, without them I know I wouldn’t be saying that this is still my life for living, it’s just my ending that’s changed.”

To mark the service’s anniversary, a special celebration event was held at Highbury Hospital in Nottingham, where people could also find out more about the service and the support it offers. 

Tracey Evans, Working Age Dementia Service Lead, said of the event and service: “We’re so proud to be celebrating our ten year anniversary. Our service provides vital support to help people to remain active and well in the community. We empower both individuals and their families to live well with dementia and to play an active role in the management of their care and needs. The event has provided a chance to celebrate the support we provide, highlight our achievements and to raise awareness of working age dementia.”

The service is available to people across Nottingham City, Nottinghamshire County and Bassetlaw and complements the Trust’s dementia services for older people. For more information visit: www.nottinghamshirehealthcare.nhs.uk/working-age-dementia-service