My write-up for Dementia Friends

Why Dementia Friends is so important to break down barriers

The Dementia Friends initiative is a very special thing it’s about breaking down the barriers and misconceptions that surround this illness.
The layout and training you receive is excellent. The first part of the training day is to make you a Dementia friend, once you’ve accomplished that it’s on with the training. It’s a very easy format with just enough information without sensory overload.
It’s quick and to the point without becoming too technical or boring. A selection of activities are also used to illustrate the problems people with dementia have in their daily living routines, reiterating the five points about dementia, which are :-

It’s not a part of getting old
It’s caused by diseases of the brain – the most common being Alzheimer’s
It’s not just about losing your memory
People can live well with dementia with the right support and understanding
There is more to the person than the dementia

The message of Dementia Friends came across really strongly and everyone was so enthusiastic. It’s a fantastic and simple idea that will make a real difference to the lives of people with dementia. It’s all about getting the message out there and expelling the myths and preconceptions that revolve around people with this condition.

By going around as many people and groups as we can we will be helping to improve the day-to-day lives of people with dementia and allow them to live normal lives for longer which in turn allows them more time at home with their loved ones, keeping people out of homes and saving the NHS millions! It has now rolled out to Wales where we, Jayne and I, attended the launch and actually ran an info session for Lloyd’s Bank for ITV in the morning prior. Watch the ITV interview here :-
http://www.itv.com/news/wales/update/2014-02-19/charity-launches-dementia-awareness-scheme/

So it’s up to us to take responsibility to change the attitude towards dementia; by becoming “aware” we can shift previous stigmas and misconceptions, creating a dementia aware society and creating dementia friendly communities.

By becoming Dementia Friends Champions, we (the wife and I) hope to play a part in this huge social action movement, and create 100′s of dementia friends.

It is estimated that there are over 45,500 people living with dementia in Wales; two-thirds of them live in the community. Yet sadly they don’t feel part of our community, but with help and support people with dementia can play an active part for sometimes many years.
It’s all about turning understanding into action, it’s about educating people.

As I said earlier the wife, Jayne, and I do our sessions together – as a team. Why you may ask, well it’s a necessity :-

It’s different, people quite enjoy the towing and frowing!
We work well together; we’re a team in the house and out!
But the biggest reason, is that she is there to support me because at the young- ish age of 52 years, I have Vascular dementia and Alzheimer’s, a form of mixed dementia, so if I can be a Dementia Friends Champion ,any of you can do it! So please do!
So you see it is possible to live with dementia, especially when you have understanding and support! Which is what Dementia Friends is all about and which is why we enjoy being part of this fabulous initiative.

Chris Roberts
@mason4233

Dementia Friends Champion
dementiafriends.org.uk

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Day care poem

It’s a lovely evening, Its been a beautiful day
Spring is here, summer’s on the way
I find a room with no one in
Away from the noise and the din
It’s oh so quiet, on my own
It’s not very often I’m left alone
It’s just for an hour
But I feel like a tower
A man of substance, again
With no worries about my brain
Just for a bit I can be anywhere I want
On top of a mountain or in a posh restaurant
No decisions, nothing to say
Just looking out of the window at the closing of the day
“Excuse me, do you want a cup of tea ?”
Really ! are they actually, speaking to me?
Then it’s over, that hour on my own
Back to a room full of people, but still all alone
© chrisroberts

My Day care update

Well after a long search, a very long search live finally found a care home, one with Wi-Fi I might add which is very difficult to find. It’s not ideal looking at my future but I’ve had a rant about that, I think everyone knows my feelings on the matter, but for there is no alternative so let’s just get on with what I’ve got for the moment .
The age group is very varied and there are lots of people in a moderate stage, so happy days ! At least now I got somewhere that I can go and have a day off once a week, time off from being me, time off from being on duty at home where the wife and children expect me to be me ! It’s getting such hard work trying to retain the old me. The time has come to stop looking back and hug the new me whether we like him or not.
Just sat in a care home I can switch off compleatly, become no one ! which I think will help to my stress levels , my idea is for every couple of days compleatly stress free will give me a few more days on the end total.
It’s a nice new elderly care home, with all mod cons, it has a lovely airy feel, they have several community rooms and a couple of quite rooms, a nice secure outside area and the most important – Wi-Fi !
Now that’s one decision that has been taken off my family ! No guilt about homes now or that’s the plan. I’ve got somewhere that I can get used to, get to know the home, the residents and the staff, so when the day comes I’m not carried off screaming and shouting to a strange place.
One less decision for my family to make because I’ve already made the decision I have chosen my own care home

New website

Just a short note introducing a brand new website http://www.youngdementiauk.org an excellent site for people with young onset, packed full of information, blogs, story’s and services. Easy to navigate and view.
A couple of links for you –
http://www.youngdementiauk.org/blogs
http://www.youngdementiauk.org/my-young-onset-dementia-meeting a link to a piece I wrote and http://www.youngdementiauk.org/ken-hs-story a piece by a good friend of mine enjoy !

In the shoes of … | Ken Howard, living with younger onset dementia

Excellent advice ! Thank you Ken

Whose Shoes? A catalyst for change in health and social care

I always feel very privileged when people tell their stories through my ‘in my shoes’ series. But never more so than today.

Today is NHS Change Day and today’s blog is a ‘special edition’ as part of our global #NHSChangeDay campaign to enable people living with dementia to speak out about what is important to them.

Today’s blogpost by Ken Howard has taken an enormous amount of effort on Ken’s part.

Ken is living with younger onset dementia. In the past, Ken was an avid reader but one of the things he really struggles with now is reading and writing.

I have come to know Ken well, over the past year or so. Ken is very articulate and has taught me so much about his life with dementia – how it affects him personally.

Ken enjoys getting involved in my Whose Shoes? workshops and people learn so much from…

View original post 1,645 more words

Intermediate day care rant !

Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.
If one looks around the room you soon see the ones with dementia, the quite ones, the people that find it so hard to filter the back ground noise as the volume gets louder, so much so that one soon finds it easier to just be quite. Why oh why don’t people just take the time to listen to what WE want, cafés should be held in two rooms, one jointly for both parties and the other room for just people with dementia, where it’s quieter, where we can chat unprompted to each other, where we can have some peer support, where we can be truthful and share with out upsetting others that don’t want to hear.
Two hours ! A cafe lasts, usually once a month. We need at once a week, a crèche of sorts, not PC I hear you say, but that’s what’s needed especially for the mild to moderate people out there. We just need somewhere secure with a toilet , a kitchen and one helper, there could be a charge which I know most would pay ! There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left ! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want !
no one leaves till they are collected, could it be so easy, there are 1000’s of empty buildings in every major city in the uk .
Some one could even make a lot of money out of it, so we’ve just invented adult care, a youth club for adults of any age !
I would just like somewhere to go when I need time out from being myself, from being me! It’s bloody hard work ! It’s hard work for those around me too, my wife for instance, she wouldn’t say it but I’m sure a day off to herself would be nicer if she didn’t have to leave me in an Elderly Mental Infirm Care Home ! What do you think ?
So what’s the alternative, as I said earlier , there is the memory cafés ! And day care in an EMI ! NOBODY SHOULD HAVE TO SIT AND LOOK AT THEIR FUTURE ESPECIALLY WHEN THE FUTURE IS SO BLEAK AND SO HORRIBLE !
Yes we can live with dementia, yes we could even live well ! Yes we could live even better !!

Sorry about spelling etc but it has started to become quite difficult, what you see is what I have ! No less and definitely no more x