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of exchanging some good coping mechanisms – with lots of humour added in. On occasions there have been tears – but the support from everyone is invaluable and you always come away feeling stronger and more posi ve.
‘Just over a year ago, having Andy accompany me to work was becoming more stressful and I started to explore the possibility of a day centre. I came across Daybreak Oxford online and phoned them for more informa on, thinking there would either be no places or that it wouldn’t be suitable because of Andy’s age. But we were invited for a visit the following week, and in the end Pat and Liz, our good friends, also came along. As soon as we walked in I could tell it wouldn’t be suitable as all the people were so much older and more immobile, but we stayed for lunch only to be told by Liz that she and Andy had been cha ng and they definitely weren’t coming here again! ‘Pat and I managed to have a chat with Julie, Daybreak’s organiser, and explained there were no regular places for people with young onset demen a to visit other than the YoungDemen a UK monthly get­togethers – which, although fantas c in their own right, don’t offer regular respite care without being accompanied by a partner or carer.
‘Leave it with me,’ Julie said and incredibly within a month the Monday Club was up and running with an ini al membership of just three
About...
‘YoungDemen a UK provides a wide variety of support groups and social ac vi es as well as providing individual advice when needed. I’m currently being helped by Emeline to pursue respite care and she has told me how to get help from the local con nence team. I have only men oned the groups that Andy likes to a end, but I know through cha ng to other carers just how important and invaluable all these different avenues
of help are’.
YoungDemen a UK is an Oxfordshire based charity that provides informa on and support for people whose lives are affected by young onset demen a.
They provide ac ve, individual support for people living with young onset demen a and prac cal and emo onal support to their family members. They also run a regular programme of social and crea ve groups and events that provide opportuni es for people to meet,
with lunch and transport included! Just over a year later there is now a regular a endance of around eight to nine people providing much needed respite for family members and a s mula ng, safe and happy atmosphere for those who a end. Most of the people and / or their carers are s ll of working age, and are on the whole physically fit, so it’s very important to have s mula ng and interes ng things to fill your  me. This is a great example of a service really listening to us and as a result, changing what they provide.
‘YoungDemen a UK also provides one to one support workers carefully matched up with the people they support. Simon was allocated to Andy and has been taking him out and about for the last couple of years for three hours a week. He has become so much part of the family, that when I was asked by Andy’s consultant if we had any outside help I replied ‘no’ only to be reminded by Emeline about Simon! Emeline offers to come in with us to most of our hospital appointments. It’s really helpful to have another set of ears to listen to what is said and then have someone to ask when we have ques ons in the following weeks. I’m sure it’s very useful for Emeline too, to know where Andy’s ‘at’ and what’s happening away from our social mee ngs.
make friends and gain peer support.
YoungDemen a UK leads the Young Demen a Network; set up to create a community of people united by an interest in young onset demen a.
About young onset demen a
• Demen a is termed ‘young onset’ when it affects people under the age of 65.
• There are over 42,000 people es mated to be living with young onset in the UK.
• Demen a in a younger person can be difficult to diagnose. On average, diagnosis takes four years, twice as long as it takes older people to get a diagnosis.
• Problems with language, vision, behaviour or personality may be the first symptoms, rather than memory issues.
Posterior Cor cal Atrophy (PCA)
Posterior Cor cal Atrophy (PCA) is the degenera on of the cells at the back or posterior of the brain. The changes in the brain resemble those in someone with Alzheimer’s disease but the effects are very different. People with PCA will o en first experience problems with their sight. This is because their brain is having trouble interpre ng the informa on sent to it by the eyes. People may also struggle with spelling, wri ng or maths.
Rare Demen a Support
Posterior cor cal atrophy support Oxfordshire/Central Regional Mee ngs are coordinated by Mar na Wise: mrsmar nawise@gmail.com.
h p://www.raredemen asupport.org /pca/mee ngs/regional/
       • Rarer or gene cally inherited forms of demen a are more common.
• People are likely to s ll be working, having financial responsibili es, be physically ac ve and have children or parents to care for.
• The whole family feels the impact.
Contact Us
YoungDementia UK PO Box 315,Witney. Oxfordshire OX28 1ZN
Tel: 01993 776295 (general enquiries) Email: web@youngdementiauk.org Website: www.youngdementiauk.org
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