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The Purple Angels’ Dementia Awareness Day, founded by Norman McNamara, on September 20th 2014!
I’m looking forward to the Purple Angels’ Dementia Awareness Day to be held on September 20th 2014.
This year’s chosen charity is “YoungDementia UK“, and here is the link to the “Just giving” page which has been set up.
Dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia.
However this is a somewhat arbitary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age.
Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember.
Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
Dementias that affect younger people can be rare and difficult to recognise.
People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.
They are of considerable interest to me, as my own Doctor of Philosophy was passed by the University of Cambridge in January 2001, on “Specific cognitive deficits in the frontal lobe dementias”.
Norman
Norman McNamara from Devon was diagnosed with dementia six years ago when he was just 50.
Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.
He said: It was never really in the back of my mind that I might get it.
“I think it came to a head when I set the kitchen on fire three times.”
After his diagnosis, McNamara, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day.
The event was marked all across the world for the first time on 17 September 2011.
Norman McNamara writes, regarding this year,
“We want this year to be the best ever, and you don’t have to wait until the 20th Sept 2014 to do some fundraising! It doesn’t matter if it’s today, tomorrow, the 20th Sept or even New Year’s Eve!’
“All that matters is that you hold a small event, be it a coffee morning, a football card, car boot, a bingo game, a concert or even a SKY DIVE!”
“It really doesn’t matter, just please be assured that every penny you raise and donate to this link will go straight to YoungDementia UK and be spent on those who need it most, those with Dementia!”
“So please, let me know what you are organising this year so we can advertise it, the more people know about it the more we will raise.”
Wellbeing in dementia: Norm McNamara's interview for 'Dementia Awareness Day'
The ‘Wellbeing in Dementia’ initiative
To follow this initiative on twitter, please follow @dementialives here
To read about the importance of wellbeing in dementia care, please look at the blog here.
Who is Norm McNamara, and what is Dementia Awareness Day?
Norm McNamara (tweet: @Norrms) was diagnosed with early onset Alzheimer’s around 4 years ago and since then has dedicated his life to raising awareness. Last year he organised the first Dementia Awareness Day in the hope of raising as much awareness as possible with DAD events being held up and down the country. This year, Dementia Awareness Day will take place on September 15th and the charity chosen to benefit this year is the Lewy Body’s Society UK.
Interview
1. What is the motivation behind Dementia Awareness Day?
My biggest motivation has to be my family and eleven grandchildren! How could I possibly give up when I see the hope in their eyes and the smiles on their faces, what kind of example would that be if I just gave up and didn’t fight this awful illness?
2. What do you hope to achieve from D.A.D?
We hope to raise as much awareness as possible; awareness about this disease is the key to everything. It will first of all reduce the stigma that’s attached to it, and as people start to talk about it openly and not in whispers, funding will follow and things will improve tenfold.
3. What will be happening on the day?
This year is bigger and better than ever!! We have balloons being released all over the world at 3pm. The Lewy Body’s Sunshine Coast of Australia is also holding a HUGE event in the name of DAD day so it truly is a global event. Here in the UK we are holding a huge event in Torquay and Torquay United are having a collection the week after at a home game. Widdecombe House Torquay is also holding a garden party on the day and coffee mornings are going on in care homes across Torbay. In my home town of Boton they are holding a DAD day awareness event and some homes in Gloucester, Cornwall and others places are celebrating it!
4. How can people get involved?
There are lots of ways to get involved. Head down to your nearest event, support the cause, raise money and most importantly, spread the word. I would just like to state at this point I am just one man, on a computer , in my bedroom, I am disabled and do not work, and we now live in a supported living scheme. If I (as just one ordinary Joe) can organise so much raising awareness about dementia, can you imagine if we all shout “I Can I Will” and “Stand Up and Speak Out” what can really happen?
5. What aspect of dementia awareness needs most attention?
Acceptance, and when I say acceptance I mean not only by the person with a dementia diagnosis but also their family and friends.
6. What are you looking forward to the most on D.A.D?
I am looking forward to raising awareness, meeting new people, sharing the knowledge of this disease and dispelling the myths that surround it.
7. What is the future for D.A.D?
I would like to see D.A.D day recognised as a national dementia awareness day by all dementia related charities and maybe even become a registered charity itself one day helping to install admiral nurses all over the country.
You can find out more at the D.A.D blog
Join the Facebook page here
I am proud to support Dementia Awareness Day on September 15th 2015 on behalf of many
I have devoted a large part of my life to raising awareness of dementia. I have done a huge amount of independent research for this, having written a large number of book chapters, reviews and original articles on dementia, especially frontotemporal dementia.
I have recently even launched a blog on quality-of-life and wellbeing in dementia.
You can go to this blog here. You can also join us on Twitter here.
This celebrates the work being done by colleagues of mine in the academic community on aspects of wellbeing in dementia, including assistive technology and telecare, cognitive neurorehabilitation, built environments, end-of-life decision-making in dementia, definitions of wellbeing, ambient technologies, optimal design of the home, person-centred care, the socio-economic argument, and UK policy.
I am very happy to be writing a book drawing on the work of about ten prominent labs in the UK on this subject. It is a pity that real individuals with dementia or immediates, as well as hard working NHS doctors and nurses and academic researchers, are not given an opportunity to talk about their experiences. This field is dominated by professional third sector officers and their bosses looking for marketing chances sadly, but who do not have a strong working background specifically in this field otherwise.
However, I feel it is an extremely important area, and I am very proud to support it. I am off to an international conference in India in December 2012 for the World Federation of Neurology to discuss the subject with colleagues who are also experts in the field.
