If you haven't seen it yet, visit the ARUK Lab www.dementialab.org and then vote for it here in the awwwards!
This is an amazing bit of tech, but more important is the story it tells about dementia research.
Thank you.
Showing posts with label alzheimer's. Show all posts
Showing posts with label alzheimer's. Show all posts
Tuesday, June 25, 2013
Amazing dementia lab
I have to post the quickest blog about this ever - this on line lab is just amazing! I like the way it uses a Facebook interaction in a very clever way - try it out and see what I mean. It makes it personal and also gets across a very pertinent message.
If you haven't seen it yet, visit the ARUK Lab www.dementialab.org and then vote for it here in the awwwards!
This is an amazing bit of tech, but more important is the story it tells about dementia research.
Thank you.
If you haven't seen it yet, visit the ARUK Lab www.dementialab.org and then vote for it here in the awwwards!
This is an amazing bit of tech, but more important is the story it tells about dementia research.
Thank you.
Tuesday, April 23, 2013
From heartening to heartbreak
On Friday and Saturday I was at the Alzheimer's Show. 'How can you have a show about Alzheimer's? It's not an entertainment!'. But what else do you call it? An exhibition? An exposition? Max Pemberton of the Daily Telegraph said 'An Alzheimer's show does make sense.' (His article is available on line here.) Show is just about the only word to describe the collection of talks and stands full of information around Alzheimer's and dementia. And calling it anything else could have been disingenuous.
The first show like this ever run in the UK (and anywhere else? I don't know) we didn't know what to expect. Who would attend? What did the people who visited the show expect too? But it went ahead, despite some challenges in the early planning. And, in my opinion, it was a success. Others' too, I hope.
What I can give you is my experience of the event, which was both heartening and heartbreaking at the same time.
Alzheimer's, the most common form of dementia, is a disease. Diseases can be beaten - but we are a long way off from a cure, partly because we know so little about the complex human brain. So research is happening (not enough) and progress is being made, but we are years behind other diseases like cancer and heart disease. I was there to help provide information on what research is being done and what real progress is being made, but there were also stands with practical help - everything from phone call screening machines, through legal advice to the admirable Admiral Nurses.
I was on a stand and talking to the visitors - a myriad mix of people, including occupational therapists, trainee nurses, and people with the disease. Though every conversation had was in its own way powerful - and we had very many indeed - there were a few that stood out.
The first was a nice looking man of about 40. He approached the stand and asked for information about Alzheimer's. I asked what his area of interest was. 'I am a policeman,' he said 'and we often get called out to help find people who have got lost, or we pick up wanderers. And sometimes we visit families who are just at breaking point. I want to find out more to help us manage these people properly.' Right then and there I found my hero for the year.
I met one family, husband about 45, son perhaps the same age as mine (early 20s). The wife told me that the husband had just been diagnosed with early-onset Alzheimer's. The future ahead for them is not going to be easy, but maybe we'll find a cure for his grandchildren.
I met many people who had recently been diagnosed, and I met their carers, families and friends. Every single story, every exchange we had, there was a heartbreak. One way or another, nearly a third of the UK population has a close friend or family member with dementia (more stats here in this simple animation). The impact of the disease is huge - not just on those with the disease, but on everyone around us.
Another conversation that really stood out was with a young lady from South Africa. She is a dementia carer here in the UK, but her main ambition is to go back to South Africa, to the townships where she came from, and educate people about dementia being a disease. What she told me was shocking - that people with dementia who wander into dangerous areas, or even just into other people's homes and gardens (such as they may be) are considered to be possessed - to be affected by witchcraft. It was almost unbelievable to think that in this day and age people do not understand about Alzheimer's and attribute it to witchcraft, but there is evidence that this is so. When she told me that many of these people are killed through fear and misunderstanding, I realised just how serious this young woman was.
I'm not sure what difference we can make to perceptions world-wide, but every little bit of progress in education and in moving closer to the treatments and cures for dementia that research is unearthing, has to be a good thing. An Alzheimer's Show was, in my humble opinion, a good idea.
Useful links:
Admiral Nurses
Alzheimer's Research UK
Alzhiemer's Show - 16 and 17 May 2014
Alzheimer's Society
Dementia information
Dementia statistics
Dementia UK
NHS About Dementia
Photo credit: Policeman from Strawberry Fair by George
The first show like this ever run in the UK (and anywhere else? I don't know) we didn't know what to expect. Who would attend? What did the people who visited the show expect too? But it went ahead, despite some challenges in the early planning. And, in my opinion, it was a success. Others' too, I hope.
What I can give you is my experience of the event, which was both heartening and heartbreaking at the same time.
Alzheimer's, the most common form of dementia, is a disease. Diseases can be beaten - but we are a long way off from a cure, partly because we know so little about the complex human brain. So research is happening (not enough) and progress is being made, but we are years behind other diseases like cancer and heart disease. I was there to help provide information on what research is being done and what real progress is being made, but there were also stands with practical help - everything from phone call screening machines, through legal advice to the admirable Admiral Nurses.
I was on a stand and talking to the visitors - a myriad mix of people, including occupational therapists, trainee nurses, and people with the disease. Though every conversation had was in its own way powerful - and we had very many indeed - there were a few that stood out.
The first was a nice looking man of about 40. He approached the stand and asked for information about Alzheimer's. I asked what his area of interest was. 'I am a policeman,' he said 'and we often get called out to help find people who have got lost, or we pick up wanderers. And sometimes we visit families who are just at breaking point. I want to find out more to help us manage these people properly.' Right then and there I found my hero for the year.
I met one family, husband about 45, son perhaps the same age as mine (early 20s). The wife told me that the husband had just been diagnosed with early-onset Alzheimer's. The future ahead for them is not going to be easy, but maybe we'll find a cure for his grandchildren.
I met many people who had recently been diagnosed, and I met their carers, families and friends. Every single story, every exchange we had, there was a heartbreak. One way or another, nearly a third of the UK population has a close friend or family member with dementia (more stats here in this simple animation). The impact of the disease is huge - not just on those with the disease, but on everyone around us.
Another conversation that really stood out was with a young lady from South Africa. She is a dementia carer here in the UK, but her main ambition is to go back to South Africa, to the townships where she came from, and educate people about dementia being a disease. What she told me was shocking - that people with dementia who wander into dangerous areas, or even just into other people's homes and gardens (such as they may be) are considered to be possessed - to be affected by witchcraft. It was almost unbelievable to think that in this day and age people do not understand about Alzheimer's and attribute it to witchcraft, but there is evidence that this is so. When she told me that many of these people are killed through fear and misunderstanding, I realised just how serious this young woman was.
I'm not sure what difference we can make to perceptions world-wide, but every little bit of progress in education and in moving closer to the treatments and cures for dementia that research is unearthing, has to be a good thing. An Alzheimer's Show was, in my humble opinion, a good idea.
Useful links:
Admiral Nurses
Alzheimer's Research UK
Alzhiemer's Show - 16 and 17 May 2014
Alzheimer's Society
Dementia information
Dementia statistics
Dementia UK
NHS About Dementia
Photo credit: Policeman from Strawberry Fair by George
Tuesday, July 31, 2012
Music, music and more music!
What a weekend! First of all I played at a private party which was it's own mini-festival! Most of the guests were musicians and from four until late, there was non-stop live music from all sorts of different bands. There was a young lass called Sophie who composed her own songs and sang with a couple of other bands, there were the 'old rockers' and even some young lads playing Shadows' tunes.
The band I played with, the 'Two Tones' (thus named because two of the band are called Tony) was formed through a link with my work. I met the band leader, David, as he is a fundraising champion for our charity. He's done amazing fundraising work in memory of his mother, who had dementia in her later years.
We first got together to do a charity ball gig that David arranged back in June. We had such fun, that a further opportunity to gig could not be missed, hence our performance at 'Lenborock'. The party was an all day event with a covered stage area, barbecue, marquee for audience and a 'Gladiators' bouncy. The party was in the grounds of a lovely house in the Buckinghamshire countryside - beautiful views and the most lovely house.
We played a couple of sets - one in the afternoon and one in the evening. Even though Sophie and her young friends had done their mashup version of 'Stand by Me' we still did a version with Tony keys singing. It was a really nice gig with really nice people, even though I didn't know most of them.
On the Sunday I went with my musical partner in crime, Shani, and we mooched around the festival catching a bit of Seth Lakeman, a few others and, after our own set, watching Rachel Sermanni and her friends (wonderful!). We stayed to watch Rachel as we had come over on the artists bus with Rachel and the others from the car park. Very glad indeed we watched Rachel and the gang, what a refreshing and entertaining act.
The talented Blair Dunlop played a great set too. Whilst walking along the boardwalk I overheard someone say 'There's all these young people in folk music now...' Well hooray I say! What's the use of a tradition if it dies out? Given what I saw this weekend, there's plenty of life, youth and imagination in the folk world still. Put away your arran jumpers, your tankards and take yer finger out your ear. Folk music is a vibrant and positive force in the music scene.
Our set was short and sweet, but went well. It was a bit of a shame that the brief but noisy thunderstorm (which included hail) created pools of water in the club tent that meant there was lots of mud, but it was still a grand craic.
Though I'd like to have stayed to see Joan Armatrading, I was tired out, so Shani and I headed back to the car park. As we walked past these two huge RVs, my digestive system decided to issue its own comment on the proceedings. With a wheel-trembling trump, I alerted the attention of Ms Armatrading's road manager who gave me 'a right old fashioned look'. Apologies Ms Armatrading for my trumpet involuntary. On our way out the car park we waved madly at the RVs and the road manager waved kindly back.
A good, musical, and varied weekend. Until next year...
 |
| David's son Stuart (left) and Tony Keys. Rehearsing... |
The band I played with, the 'Two Tones' (thus named because two of the band are called Tony) was formed through a link with my work. I met the band leader, David, as he is a fundraising champion for our charity. He's done amazing fundraising work in memory of his mother, who had dementia in her later years.
We played a couple of sets - one in the afternoon and one in the evening. Even though Sophie and her young friends had done their mashup version of 'Stand by Me' we still did a version with Tony keys singing. It was a really nice gig with really nice people, even though I didn't know most of them.
 |
| Rachel Sermanni and friends |
Sunday was a whole different kettle of music. I went to Cambridge Folk Festival again. The Friday evening I had popped over and seen the amazing Gretchen Peters, the entertaining Lucy Ward and the great June Tabor and the Oyster Band. On the artists bus I met the Moulettes - lovely ladies. They asked if I was playing and I said yes, on the Sunday, in a duo. I happened to mention that I'd also played in a band, 'Shave the Monkey'. 'Oh,' said Ruth, 'My dad loved them!'. Time to get the zimmerframe...
On the Sunday I went with my musical partner in crime, Shani, and we mooched around the festival catching a bit of Seth Lakeman, a few others and, after our own set, watching Rachel Sermanni and her friends (wonderful!). We stayed to watch Rachel as we had come over on the artists bus with Rachel and the others from the car park. Very glad indeed we watched Rachel and the gang, what a refreshing and entertaining act.
 |
| Blair Dunlop |
Our set was short and sweet, but went well. It was a bit of a shame that the brief but noisy thunderstorm (which included hail) created pools of water in the club tent that meant there was lots of mud, but it was still a grand craic.
Though I'd like to have stayed to see Joan Armatrading, I was tired out, so Shani and I headed back to the car park. As we walked past these two huge RVs, my digestive system decided to issue its own comment on the proceedings. With a wheel-trembling trump, I alerted the attention of Ms Armatrading's road manager who gave me 'a right old fashioned look'. Apologies Ms Armatrading for my trumpet involuntary. On our way out the car park we waved madly at the RVs and the road manager waved kindly back.
A good, musical, and varied weekend. Until next year...
Tuesday, November 01, 2011
Are celebrities ashamed?
I have worked in the charity sector for some time and often used this resource 'Look to the Stars' which tells you which charities celebrities support, and which charities are supported by which celebrities. It's useful when you are researching someone to see if they support a charity like yours, or have a particular interest. And also interesting if you just like finding out about celebrities.
When I looked at education, cancer, environment and child related charities the numbers of celebrity supporters ranged from 85-115. Yes, a big charity with a wide emotive appeal may have more than a hundred celebrities who are prepared to put their name down next to that charity and offer support in whatever way they can. Sometimes it's just a name on a list or attending a function, sometimes it's full fledged fundraising or financial support. Most of the time it falls somewhere in between.
When you look on the site and find out how many celebrities have nailed their colours to the mast of Alzheimer's - you get ten. Just ten. Yet dementia is one of the most pressing issues in the western world. So my question 'are celebrities ashamed?' is a valid one. Are they not willing to put their name to a charity that deals with addressing a challenge that very possibly faces us all? At least 50% of the UK population know or have a relative with dementia, and something like one in three over 65 will die with a dementia related illness over the next thirty years. So why aren't there more high profile individuals who support research and care for dementia? I don't suppose any celebrities will pipe up and respond to my question.
My thoughts are - and these are just my personal thoughts - that they are if not ashamed, perhaps embarrassed. I think most people have a cautious reaction to dementia because the symptoms manifest in behaviour change. Dementia patients are very often fit and healthy - yet their behaviour and cognitive abilities make them 'difficult' to manage in a society where we have a culture that aspires to youth, health, beauty and (I think there is irony here) celebrity.
Yes there are celebrities who support dementia and they will have a tale to tell of close personal involvement and the distress that is unavoidable with this degenerative disease. Sir Terry Pratchett has been very active in his media awareness campaigns about Alzheimer's - understandably as his own health deteriorates with the rare version he has. Glen Campbell has openly told people he has the disease and is doing a last tour 'while he still can'. Actors Tony Robinson and Larry Hagman, entertainer Russell Grant and musician Sir Cliff Richard have lost loved ones to Alzheimer's. But with dementia affecting nearly a million people in the UK alone - surely they aren't the only ones?
But I am not laying the blame for lack of public understanding of dementia at the feet of celebrities or any one part of society. Every single one of us must look into our own hearts. There are very few of us who will not be coming into contact with it over the next thirty years.
Useful links:
Alzheimer's Research UK
Alzheimer's Society
Dementia statistics
Look to the Stars
Photographs - from Look to the Stars website
 |
| Annie Lennox supports more than 30 different charities |
When you look on the site and find out how many celebrities have nailed their colours to the mast of Alzheimer's - you get ten. Just ten. Yet dementia is one of the most pressing issues in the western world. So my question 'are celebrities ashamed?' is a valid one. Are they not willing to put their name to a charity that deals with addressing a challenge that very possibly faces us all? At least 50% of the UK population know or have a relative with dementia, and something like one in three over 65 will die with a dementia related illness over the next thirty years. So why aren't there more high profile individuals who support research and care for dementia? I don't suppose any celebrities will pipe up and respond to my question.
My thoughts are - and these are just my personal thoughts - that they are if not ashamed, perhaps embarrassed. I think most people have a cautious reaction to dementia because the symptoms manifest in behaviour change. Dementia patients are very often fit and healthy - yet their behaviour and cognitive abilities make them 'difficult' to manage in a society where we have a culture that aspires to youth, health, beauty and (I think there is irony here) celebrity.
 |
| Sir Terry Pratchett |
But I am not laying the blame for lack of public understanding of dementia at the feet of celebrities or any one part of society. Every single one of us must look into our own hearts. There are very few of us who will not be coming into contact with it over the next thirty years.
Useful links:
Alzheimer's Research UK
Alzheimer's Society
Dementia statistics
Look to the Stars
Photographs - from Look to the Stars website
Friday, June 24, 2011
Booksale!
I know many authors think that selling books second-hand is selling them (the authors) cheap, but it may also have a beneficial effect; introducing readers to new authors (who then go out and buy more by the same person).
Authors aside, we are readers. We (I speak for myself for those people who read this who like reading books, if you don't, please ignore this post. In fact if you don't, you probably aren't reading!) like to read books!
In clearing my house ready for a move, I had two bagfulls of books (having already taken several loads to the local charity shop) and thought I would sell them at work. Then a thought occurred to me - to sell them for charity.
I put a note round at my employers and not only did I advertise the sale, but I had more contributions of books! So at lunchtime today I spent an hour and a half in a meeting room surrounded by books: including the true story of a call girl and XML programming (in Chinese). So plenty of variety!
I am delighted to say that my kind colleagues helped me raise over £100 for Alzheimer's Research UK. Oh, and I picked up a few books for myself.
Authors aside, we are readers. We (I speak for myself for those people who read this who like reading books, if you don't, please ignore this post. In fact if you don't, you probably aren't reading!) like to read books!
In clearing my house ready for a move, I had two bagfulls of books (having already taken several loads to the local charity shop) and thought I would sell them at work. Then a thought occurred to me - to sell them for charity.
I put a note round at my employers and not only did I advertise the sale, but I had more contributions of books! So at lunchtime today I spent an hour and a half in a meeting room surrounded by books: including the true story of a call girl and XML programming (in Chinese). So plenty of variety!
I am delighted to say that my kind colleagues helped me raise over £100 for Alzheimer's Research UK. Oh, and I picked up a few books for myself.
But the most important part of the exercise was the personal stories I heard, and of how Alzheimer's has touched so many people's lives. The stories were, of course, not happy ones. Suffering is part of the human condition. But wouldn't it be nice if we could, in time, actually remove this one from the list?
I know there are many good causes out there, and I have indeed shown my support for conservation well beyond my employment in that area. However, if you have five minutes and even just five pounds, your support could make a tremendous difference to the long term solution for curing dementia.
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