“Twitter family… I NEED yr help, friend going for consultant formal #youngonsetdementia diagnosis next week, can’t accept it, family in shock any advice on how to help & also key things you wish you did or asked at that meeting”
I saw this tweet this morning, a plea for help and advice for a person who is about to get their formal diagnosis of young onset dementia. So here are my ideas. Others will have plenty more.
Dementia is not the end of time our life, but it is bereavement. So it is never going to be easy to take the diagnosis. You are losing the future you assumed you would have. But you will also be starting a new life.
Dementia at working age, whether or not you do paid work, affects your ability to carry on in the same ways you are used to. It does NOT, however, mean you can no longer work and get paid for it.
Nor does it mean you suddenly lose all that experience and those skills and knowledge you have built up over your life.
You are the same person after your diagnosis as you were the day before, or the year before. You are not just a person with dementia. You are who you always have been.
You probably have been noticing, and possibly struggling with, the developing symptoms and effects of your brain disease for months or possibly years. You may have been finding your work increasingly stressful and difficult to keep up with.
So the confirmation that there is an underlying cause, ie disease, may be a comfort, as you now know the cause of your difficulties. See it as positive in that respect. Better to know the cause, and then find ways of dealing with it, than to struggle and feel anxious and depressed in now knowing.
No one wants to have dementia, but you are far from alone. You may feel terribly alone just now, but you are not, and you need to talk to others with the disease.
Take heart and some comfort that you are one of 850,000 in the UK who have the disease.
Ask the Memory Service to give you contact details of others living with young onset dementia, and some time in the coming days and weeks call someone. Talk. Find out how they are getting on.
Ask if you can meet an occupational therapist (OT). They provide support and help you develop solutions to get round difficulties you may be having now, or will have later. OTs are wonderful and will help you you go on living as you choose and want for as long as possible.
Ask your consultant for the name of the person who will provide you with support, and be someone to talk to when you need to.
Remember that the brain disease ghat causes dementia can progress at widely differing speeds. Some people’s disease gets worse very slowly. You may well be one of these.
Dementia affects everyone differently. We have different symptoms, and different parts of the brain are affected, depending on where the disease is. There is no one pattern of effects. Yours will be your own. Don’t look at the stereotypes in pictures and newspapers and assume that will be you soon.
You have not suddenly, almost overnight, become a person who is unable to think, speak, feed yourself, or take active part in your community. Remember that.
Ask if you have Admiral Nurses in your area. If so, get in touch. Or call their excellent and very helpful Helpline.
0800 888 6678
Contact the 3 Nations Dementia Working Group via their website and ask if they can put you in touch with someone you can talk to. They do this.
Look on the DEEP website and see if there is a DEEP peer group in your area. DEEP stands for Dementia Empowerment and Engagement Project.
These groups are social groups, all run by people with dementia for people with dementia, at all ages and stages, and there are 130 around the UK. Go along. Say hello. Talk to people about how you feel and ask their advice. Just listen if you want. You will find them welcoming and understanding.
Avoid for the moment Dementia Cafes run by Alzheimers Society and Age UK. These are mostly attended by much older people, further on their journey, and may be off putting or depressing at your stage.
But above all, please don’t sit at home and feel miserable. Go out and do what you usually do. Do what you enjoy doing. And try not to be frightened about telling people. Most will try to understand. Being open about tour disease is often a way of accepting it and getting on with life. Perhaps not ‘as usual’, but living nevertheless.
And do what you enjoy doing. What gives you pleasure.
Ignore people who tell you not to take risks. Medical and other care professionals will often suddenly treat you as if you have changed overnight into a person whoo cannot do things, and cannot make safe decisions.
Ignore them. Go on doing just what you choose to do. You might even want to start doing things you have never done before. Take Wendy Mitchell. She has done zip wires, parachute jumps and walked over burning coals since her diagnosis.
Read Wendy’s book, ‘Somebody I Used to Know’. She was diagnosed in her late 50s. And read her blogs, “which me am I today?”.
Read my other blogs, and others’. Contact me if you want to talk.
Go to the Young Dementia UK website and use their resources and ideas.
Are you using social media? Twitter? Facebook? You can find lots and lots of people talk to and share with via twitter. Look at and follow people who are listed as followers in other twitterati profiles.
If you don’t have a tablet or ipad or equivalent, get one. Learn to use it. It will become your companion and your bridge to lots of people, ideas and information.
After diagnosis we often start new lives, meet new friends, and do new things, have more fun, not less. Life can open up with a fresh honesty and openness. You may lose some friends and acquaintances, but if you go out there you will find lots more, who understand you and help you and encourage you.
So good luck to you. Life is just starting again. Life is for living, so go out and live.