Dementia Information I may have dementia... When I was 50 I was diagnosed with Alzheimer’s disease and vascular damage. My memory started to get worse, I was getting lost in the car and finding words was getting difficult. I didn’t notice at the time, but sorting loose change was becoming problematic so I compensated by paying with notes instead. At the start we put it down to my emphysema but my doctor insisted on tests. It took 13 months to be diagnosed but I didn’t mind how long they took. I just wanted a correct diagnosis, not a rushed one. We noticed my driving wasn’t so good anymore. I kept looking down to see where my feet were supposed to be, forgetting where the controls were. I thought we lived in a world where everyone beeped their horns at each other. It turned out most were just beeping at me! I decided to give up my licence. This actually empowered me a little because instead of them asking for it, it was my own decision. We were relieved when I was first diagnosed as at least I now had a label. I wasn't going mad and it wasn't a brain tumour. We did however feel completely lost and alone. I was too young to be looked after in the memory clinic as I was under 65, and my assigned CPN (Community Psychiatric Nurse) was away on holiday and we knew nothing about dementia. We called the family together to discuss my diagnosis and decided to post it on Facebook to educate my friends about dementia. We needed to know more so we interrogated my CPN and Googled everything. We became sponges to keep my mind busy and alert. I decided to concentrate on what I could do, not on what I couldn’t. Tomorrow was always a new day and we had to enjoy our life during whatever time we had left. Nobody could answer our questions about prognosis so we didn’t know whether it was two or 20 years. We soon realised how little most people, including ourselves, knew about dementia. This got us thinking about what we could do about this. I saw the advert for Dementia Friends and looked up the organisation, only to find out that it wasn’t yet available in Wales – where I live! I altered my postcode to make it look like I lived in England and found myself attending a Dementia Friends training session. We attended the session with apprehension but also eager to learn. We thoroughly enjoyed it and could not wait to get out and share our newly found information. It empowered me and exercised my brain. My wife and I decided to do it together so she could help me with the difficult bits and give me a nudge when I strayed off topic – which I do regularly! We’ve now completed over 20 sessions making over 350 dementia friends all over the UK and have really enjoyed it. I call it brain exercise, or ‘brainercise’! Thanks to Dementia Friends life became much better. I was asked to attend a conference to talk about my experiences with dementia so far. I was very nervous and anxious but did it. Sharing my story and hearing the applause was empowering. I wasn't on the scrap heap just yet - I was still contributing! I found dementiamentors.com a site where people with dementia put up three minute videos on a topic that might help others, giving them and others confidence and allowing people to see how real we are and how we still thirst for life. It’s great to help each other. Socialising is crucial to stay engaged and focused. I don't get out as often as I used to so use my iPad and social media as my window to the world. I was asked to be a founding member of the Dementia Alliance International, an international group for people with dementia, run by people with dementia, but at the time didn’t have the confidence. However I’m now an active board member and enjoy advocating for them. I have also recently been invited onto the Alzheimer's Society User Involvement Advisory Group and am a keen supporter of DEEP, Dementia Empowerment and Engagement Project, and am working with the Mental Health Foundation on a paper regarding dementia as a disability. My big secret to living with dementia is to live! Surviving dementia for as long as you can is all about having focus, living and enjoying what you can do, no matter how little. I can’t multi-task, I can’t write (I can type when the letters are in front of me), I struggle at crossroads and I can’t always distinguish which way traffic is going. I struggle to balance myself and walk with a stick and I get mixed up between dreams and reality, but I’m still alive, living and enjoying life. I may have dementia, but it doesn’t have me…yet. Chris is shown third from the right in the photo. Jane is to his right.