This week we are delighted to be able to share Chris Roberts’ Viewpoint piece. Chris has kindly written for us once before, and we’re so pleased to be able to share an update on the wonderful work he’s doing with Dementia Alliance International. Thank you Chris!
I’m your average 53 year old man who cares about dementia awareness, but it has to be good quality awareness, it has to be about promoting education about dementia because it is starting to touch us all, everyone is beginning to hear the word ‘dementia’ but not a lot of folk actually understand it and with over 850,000 people living with this illness in the UK we all need to know at least a little about it.
Power is knowledge, knowledge is power !
Firstly you can’t catch dementia, it’s a syndrome, a set of symptoms peculiar to any brain disease or injury, the most common being Alzheimers, followed by vascular damage such as strokes. Their are over 100+ causes !
It’s not a natural part of ageing, there was a child of four in the news recently, born with Picks Disease and is now showing symptoms of dementia. The only thing it has to do with age, is that with age the likelihood of having any illness is increased as your body becomes weaker and more frail.
Another myth is that it’s all about losing your memory, short term memory loss being the sign most frequently associated with Alzheimer’s disease, this usually prompts someone to go to see their GP. But different diseases present in slightly different ways, sometimes it might be communication – forgetting words or even struggling to talk properly. It could affect your ability to multi task, your vision and even visual perception, it might also affect your balance and mobility.
One could start to find coping with every day tasks getting difficult.
So as you can now see, it can affect everyone completely different because the causes of ones dementia can be quite different.
But one thing about any dementia is that it’s progressive which means it will gradually get worse, which is why an early diagnosis is good to have, you can get your affairs in order, put help in to place, plan for the future because with the right support and assistance it is possible to live well with it.
“Really?” you might say ! Yes, I know it is, you see I have mixed dementia ( vascular and alzheimers) I have made my will, sorted out lasting power of attorney and made plans for the future, I’ve even chosen my care home and visit every so often, so when the time comes, which it probably will, the transition from my home to my second home is made easier. One of the main reasons I did this, was not only for my own peace of mind, but I’d read a lot about caregivers promising to look after their loved ones but when the time came for a nursing home, which, most of the time it will, people were left with lots of guilt about placing someone there. Even though it’s the best place for someone to get specialist care that someone in the later stages of dementia will need. So I decided none of my family would ever go through that.
I look to the future now and never the past, I concentrate on what I can do and not what I can’t, which brought me to what I do now, dementia awareness, because I’ve become an expert by experience, but only in my own dementia because as I said earlier everyone is different, I became a dementia champion for the Alzheimer’s Society, I host awareness sessions, I speak at conferences and write about my experiences.
I’m going to Australia soon, speaking on behalf of Dementia Alliance International (a group of people that have dementia from all over the world giving others a voice) with whom I am a board member, I’m speaking about my experience of living with a dementia at the Alzheimer’s Disease International Conference in Perth.
I’m involved in lots of stuff now, things I hope will make a difference, I only have a limited window to do this in and doing this in turn keeps my brain sharp which can’t be a bad thing and must help, well if think it does.
I’m trying to make a difference while I can and if I can do this, what can you all do 🙂
You can follow Chris on Twitter @mason4233