Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.
I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.
You see “I” have dementia, mixed dementia, vascular and Alzheimer’s, but with emphasis that I may “have it” but it certainly doesn’t have me!
Who am I? ;
I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.
For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.
But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly!
It was during a regular check up at the doctors that we mentioned this, she said no, no!!
So the testing began.
My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.
No support or information was given during this process.
At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!
I was given what I call my ‘welcome pack’ and shown the door,
We knew absolutely nothing; we were just left all alone!
We stood in the car park and cried.
We called family together for a holiday, the last one,
We were grieving and I wasn’t even gone yet.
Total lack of support and information!!
But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around!
Dementia is not death on diagnosis
After researching, we realised it wasn’t death on diagnosis!
I pulled my socks up and decided to look forward now, not back, to embrace my new future.
Affairs were put in order; I even chose a care home for the future.
Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.
We realised how little folk know,
Everyone has heard the word… “dementia” but most don’t understand what it means!
We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.
I was feeling empowered again! Worthy!!
We now meet with our local council services and now advise for them, even started a new social group for all ages and their families
Joined the dementia friends initiative, trained as a dementia champion and with my wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means.
I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member !
Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!
They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international.
What about my family?
That’s me but what about my family? My diagnosis was also given to all my family, even my friends!
We can’t ever forget that, they will long remember when I can’t.
It can affect them just as much.
As much info and support is needed for them, younger carers especially fall through the net.
My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!
But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.
Research is being funded better than ever, education is being promoted and stigma is being reduced.
Care and appropriate services are being supplied and more importantly being improved upon,
But still there is a long way to go yet!
From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.
Thank you very much!