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St George's Hospital Charity funds support for young onset dementia

3rd January 2020

Elaine Eager is a Young Onset Dementia Support Worker at St George’s Hospital. Her crucial role is funded by St George’s Hospital Charity and we caught up with her to discuss her work, her personal journey with dementia, and her hopes for the future.

What does your role involve?

My role as a Young Onset Dementia Support Worker involves supporting people throughout the course of their journey with dementia. The charity funds my role – it’s a new post and I started on the 21 October. I am based at St George’s on Wednesdays, Thursdays and Fridays. My role starts right at the very beginning of someone’s journey with dementia, contacting people before they come into the hospital to make sure they know where they are coming to and answering any questions they might have about coming in. I go into clinic with consultants whilst the patient is being given the diagnosis and then take them out after the diagnosis and let them talk and ask questions. I then signpost them to what they need to do next. We focus on the immediate term, medium term and long term support networks that they can contact. I am someone that they can call and email if they have questions; it’s more holistic and social than clinical.

Tell us a little bit about dementia and your journey?

For dementia, young onset is anyone under 65 years, and many of those people are still of working age. Suddenly people get this diagnosis and think ‘Gosh, I have a mortgage to pay, I have young children.’ I point people in the right direction of where to get help. The reality of dementia is that there is no cure, no light at the end of the tunnel; it’s only going to get worse because it’s a degenerative disease. It varies from person to person; you don’t know the speed at which  your loved one will deteriorate.

My husband has young onset dementia. He was in his early 50s when his first symptoms appeared. Our youngest daughter has just turned 20 now – but she had just started secondary school when it all happened. It was devastating for her.

When we were given our diagnosis it was as simple as ‘Here is your diagnosis, off you go, get on with it’. I did lots of research and had to find out everything for myself. This role just developed from there. We went to a ‘carers and living with dementia’ course and I knew more than the person taking the course. I had so much knowledge and I knew I needed to share it.

Over the years we have got involved in the young onset dementia support groups at St George’s and now I volunteer at the support group – which is once a month on Thursdays. If the carers have questions, I try and answer them – and if I don’t know I will go and find the answer for them. It’s about having a contact point, and because I have lived experience I really understand.

What are your hopes for the future?

I would hope to be able to put packs together so that there is specific information for people with dementia, based on their specific needs. There is generic information from the Alzheimer’s Society currently, but I would like to have a more in-depth database so I can signpost people to where they need specific help.

Initially after diagnosis people still function as normal, but it’s difficult to put things into place when you are trying to plan for a future in an uncertain time frame.  It’s all about easing the pressure on families. I had one young couple come into see me, they asked how long the appointment is for, I said “as long as you need”. It was 2 hours. I just want to share this knowledge and help as many people as I can.

 

Elaine is based in the Dementia and Delirium Nurses’ Office in Neurology in the Atkinson Morley wing. You can contact her on extension 4051

 

 

 

 

 

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