South Devon´s
peer support group
for younger people
with a dementia
Top tips for after diagnosis
The Young Ones is a peer support group for younger people with a diagnosis of dementia and their families and carers
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FINANCES It is important that you get good advice on what benefits and allowances may be available to you. Contact Citizens advice on 0344 411 1444 to book an appointment with them. You could be entitled to PIP (Personal Independence Payments) and ESA (Employment and Support Allowance). You may also be able to get a discount on your water rates. To find out whether you would be eligible for a discount contact South West Water on 0344 346 1010. It is also useful if you register with your energy supplier as a vulnerable person so that you can be treated as a priority if there is a problem at any time.
WORK You may still be in work and struggling to cope with your diagnosis as well as the pressures of work. Speak to your HR department to get support. Your employers are legally bound to make “reasonable adjustments” in order for you to remain in work.
MEDICATION You may have queries about the medication you have been prescribed. If so, you can contact your GP and ask to be referred to the Older Persons Mental Health Team to get clarification.
SUPPORT It is important that you can get the support you need when you need it. You can get support from the following organisations:
Alzheimer’s Society – Talking Point is the Society’s online community where anyone affected by dementia can receive support day and night. You can access this via the Alzheimer’s Society website. The Society also has a Young Onset support group that meets via Zoom.
Rare Dementia Support (RDS) – If you register as a member with RDS (which is free) you can then access their support. They have a Zoom support group for people with young onset of dementia as well as a group for their carers and these are run by Karen Tapson who is our local Rare Dementia Advisor. Karen also runs a face to face support group at Powderham Castle.
Young Dementia Network – The Network’s purpose is to improve the lives of people with young onset of dementia and their families now and bring about significant changes that will have a lasting benefit for people living with the condition in the future. They have a very informative website and have regular webinars that are very useful and interesting.
Adult Social Care – You can ask for a care needs assessment to see whether you would be eligible to receive help with any care and support you may need. To ask for an assessment you need to contact Care Direct on 0345 155 1007.
Don’t forget to try and stay as active as possible. A diagnosis of a dementia can affect your confidence but try to do all the things you usually do and keep your brain active.
What people say.
“I come to the group because I find it very helpful. When I was first diagnosed I felt on my own but coming to the group makes me realise I’m not on my own and we all suffer with the same symptoms.”
“A dementia diagnosis was a very frightening situation for us. Joining this brilliant group of people meant we then felt that someone had got our back at all times, which was wonderful."
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“We would be lost without the group as we are a group of people coming together to share our journey and to support each other through this devastating condition with our loved ones. WE ARE NOT ALONE”
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“As a carer, I am new to everything about dementia and I have found going to the support group I am gaining so much knowledge and insight from listening to other people around me, as I want to do my best but don’t always get it right. Thank goodness for our support group it’s my lifeline too."
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