Tag Archives: Young Dementia UK

     blog (1)     

Anything can happen to anyone at any time

I have some personal form on this. At the beginning of 2007, I was physically able bodied. At the end of 2007, I was learning how to walk and again, getting used to a new physical disability.

I do feel that anything can happen to anyone at any time. It just happens to be my experience that the nastiest of events can happen to the nicest of people (and the opposite is probably true too.)

It is a useful art to know how you personally would react to the unexpected. It’s well known that personal views of immortality and invincibility wane with time, even if they lag behind a temperance of personal ambition.

I attended yesterday an afternoon in a pleasant church in Wimbledon, to celebrate the launch of the Dementia Pathfinders document “Approaching an unthinkable future”. Having now read this original contribution, I do very strongly recommend it.

I took along a copy of my own book to give as a present to someone, so please forgive me for the gratuitous product placement.

DSCN0032

This booklet is in two parts: what a diagnosis of young onset dementia has meant to recipients of that diagnosis in terms of getting on with their lives thereafter, and, secondly, how needs of people with young onset dementia are (or are not) met.

The afternoon was stimulating and refreshing.

The panel discussion consisted entirely of people “living beyond a diagnosis of dementia” (a term coined by Kate Swaffer, leading advocate and co chair of the Dementia Alliance International) and those closest to them. As before, many whom would be perceived as ‘carers’ by others did not see themselves as carers. It was later remarked that co-production lies at the heart of all of Dementia Pathfinders’ work from start to completion.

The contributions were candid, thought provoking and, most of all, useful – they all involved with lives affected by dementia personally.

It was lovely to see Keith and Rosemarie Oliver there. I chatted with Keith for some time. Keith like me is very keen on society hearing about personal narratives (and I should like to commend this new book by Lucy Whitman from my publishers). Also, Keith like me is to keen to tell the world about cognitive treatment approaches in dementia as, for example, advanced by the British Psychological Society faculty for older people.

DSCN0033

It was also lovely to see again Peter Watson, of whom I have fond memories from the Dementia Action Alliance Carers Call to Action.

DSCN0062

And of course Suzy Webster – simply great company, and a true ‘expert by experience’ for care (Suzy’s geographically on the far right of this picture.)

DSCN0060

Dr Jeremy Isaacs gave an excellent overview of young onset dementia. I immediately recognised a slide of his Consultant colleague, Dr Peter Garrard, as he’d been at Cambridge under my own PhD supervisor, Prof John Hodges, and had been on the dementia and cognitive disorders firm at Queen Square under Prof Martin Rossor at the same time I had been there in the early 2000s.

In fact Peter’s work is directly related to one of the questions which was asked about how might the worried well prevent dementia. It’s my view that the best of the previous work has been equivocal (see the EClipSE study paper in Brain 2010); but clearly more research is needed. Peter had been involved in the seminal research studies in language breakdown in some forms of temporal variant frontotemporal dementia. Iris Murdoch, married to Prof John Bayley, Emeritus Professor of English at Oxford, was indeed highly educated – and developed dementia.

On a different note, it was very nice to be in Oxford on the day previous to that to learn of the work of Young Dementia UK. I also had a terrific time visiting the Ashmolean Museum there.

DSCN0009

Here are Barbara Stephens, CEO of Dementia Pathfinders, and Dr Jeremy Isaacs at the beginning of the event.

DSCN0035

I was pleased to witness the overall direction of travel, as explained in Jeremy’s initial summary slide.

DSCN0040

In no way do I wish to undermine the excellent work being done into the genetics of young onset dementia. Understanding the products of these faulty genes is a big step towards developing innovative drugs one day in the future. I dare say, with enough motivation and resources, it might be possible to identify those people who are particularly at risk – say for example those people with a very strong history for the presence and manifestation of particular genes – and use new drugs as a way of slowing down the build up of the products of these faulty genes.
DSCN0052

But I do think EEG (measuring brain waves) can have a particular role to play in say determining whether the process a person presents with in ‘memory clinic’ is indeed a dementia (loss of particular rhythms), and indeed whether some brain wave patterns are that of rapidly progressive dementias such as Creutzfeld Jacob.

I am mindful of the service as a whole, so Jeremy’s point that the national campaign had sustained memes like ‘are you worried with your memory?’ such that many people with other causes of memory problems, for example depression, were coming to be assessed in memory clinic. I know also the converse is true – many people come to the memory clinic as the GP felt dementia had to be excluded but such people show neuropsychiatric symptoms including depression and anxiety. And some of them do later develop a full picture of a dementia.

As Jeremy correctly said, many of the young onset dementias do not indeed present with profound memory loss. I am mindful of the behavioural variant frontotemporal dementia – the subject of my own PhD – heralded by changes in personality and behaviour typically. Another example is posterior cortical atrophy – where the initial problems can be in fact perception of objects, judging depth and so on. Also memory can be quite good, although variable from day to day, for many people who’ve just received a diagnosis of diffuse Lewy body dementia.

This is a legitimate question of national policy therefore, where the overall drive appears to be increasing the dementia rates. But one has to presume that there are sufficient resources in diagnosing young onset dementia with an adequately skilled workforce. The figure for the prevalence of young onset dementia varies – it’s around 40,000 – but I suspect due to the lack of timely diagnosis – the figure is in fact much higher. Jeremy lamented that every doctor should be able to do a good bedside cognitive assessment – and I share this sentiment.

I did say to Jeremy before the event that the philosophy of many doctors did seem to be that not much could be offered through the prism of the ‘prescription pad’. I can immediately think of a whole host of issues which merit discussion beyond the diagnosis: such as employment, housing arrangements, creativity clubs, personal relationships, finances, and other social networks and events.

The diagnosis can be profoundly isolating. Professionals without having organisations to turn to (such as Dementia Pathfinders). It’s my view that many feel that they have no one to turn to other than brilliant organisations such Young Dementia UK. There’s no doubt that third sector organisations, including social enterprises, have a huge role to play in increasing the capacity of services for dementia, as indeed I once argued in the Health Services Journal.

I am sure that there’s a conversation yet to be had about ‘age appropriate services’. Views on this vary: for example, one person living with dementia told me that you wouldn’t mix children with adults on wards, and residential settings should be no exception; on the other hand, another person with young onset dementia, said that having young-only services is ageist in itself, he doesn’t mind talking to people much older people, and he said on principle the difference between 55-65 should not be any different to 65-75 or 75-85 and so on.

Equally critical is the question of how to enhance health and wellbeing regardless of care setting – how to get people in and out of hospital safely and in a timely way is now becoming a burning issue. Dominique Kent’s presentation was superb.

I’m still of the view that anything can happen to anyone at any time. Regardless of the precise ‘care setting’, all persons with dementia do deserve access to the very best standards in NHS healthcare too. And as many people pointed out yesterday the community not only has to be ‘friendly’ or indeed supportive but actually need to be educated in what dementia is. Unfortunately, despite the best efforts of many of us, we’ve still got a long way to go (although it’s fair to say we have come a long way).

Share This:

     blog (1)     

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

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.”

Share This:

     blog (1)     

Sale proceeds from Norman McNamara's books will go to 'Young Dementia UK'

Young Dementia UK is a very interesting charity.

The original name of the charity, “The Clive Project”, was a tribute to Clive and Helen. Our name change to YoungDementia UK is aimed at strengthening that tribute well into the future.

Clive was in his mid-40s when his career as an Army officer suddenly nose-dived. He had difficulty communicating with his colleagues. He was made redundant in 1992; he was 45 and his children were 3 and 4. He never worked again.

After a fraught year of failed job applications and difficulties in coping at home, Clive was forced to look for a reason for his difficulties. Clive was diagnosed with early onset dementia in December 1993.

There’s another great initiative worth noting, involving this ‘Give as you live’ website.

This website enable people to donate to a charity of their choice, just by doing their normal shopping online. You sign up to their website, then just do your shopping as you normally would (but via their website), and then they donate a percentage of the shop to the charity of your choice.

Major retailers have signed up for it – John Lewis, Tesco, Amazon etc.

So many people do their food shopping online, or buy presents and household items online. Imagine if a small donation was made to YDUK (“Young Dementia UK”) every time how much money could be raised? And as I say, it doesn’t cost the person shoppping a penny or take up any of their time!

And in another great move – sale proceeds from Norman’s books (twitter here) will go to this years nominated charity of 2014 which is Young Dementia UK.

You can view the books here on Amazon UK.

 

 

Silent Voices “My Battle With Alzheimer`s Rages On [Paperback]

Me And MY Alzheimers: Me and My Alzheimers, join me as fight the fight of my life against this awful illness: 1 [Paperback]

More Than Words, Poems by An Alzheimer`s Sufferer [Kindle Edition]

More than words, poems by an Alzheimers sufferer: My everyday fight with Alzheimers: 1 [Paperback]

The Ghost Of Marnie Jones: 1 [Paperback]

Silent Voices “My Battle With Alzheimers Rages on” [Kindle Edition]

Me And My Alzheimers [Kindle Edition]

Share This: