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Awareness Week - Younger People with Dementia

Gayle

Registered User
Feb 15, 2005
11
London
Dear TP members,

Here at the press office we are currently working on promoting this year's awareness week to the national media, to help raise awareness of the fact that younger people can have dementia too.

We are asking people to think again about dementia.

A number of TP members already help us as media volunteers, I know Anne has posted here about her article in Women's Weekly and Bruce recently appeared on This Morning.

We are now looking for any willing volunteers who feel they could help with media work, perhaps a radio interview, an interview with a magazine or newspaper to volunteer to help this year's awareness week.

If you are a younger person with dementia or a carer of a younger person do send me a private message, or reply to this post, if you want to find out more.

Thank you so much,
Regards
Gayle

Press Officer
 

JoJo

Registered User
Sep 25, 2003
38
Shropshire
Hi

I am a journalist and pr consultant who helps the Shropshire Alzheimers Society with raising awareness locally. My dad is 61 and has Alzheimers and the lesser known Picks Disease (although he only knows he has Alzs). I am writing a feature for our local paper about how we have dealt with his illness and the effect on him and our family as well as arranging interviews with local radio.

Dad is right behind me on this as he is keen to 'do his bit'. One thing I am keen to do is make people realise dementia is not just a disease where you forget things!

I would urge everyone just to contact your local media and do what you can to raise awareness. The more of us who speak up the better!

JoJo
 

Gayle

Registered User
Feb 15, 2005
11
London
Hi JoJo

Thanks for your message and your great work on promoting the Society in the local press!

I would echo your plea for people to promote the Society in their local area! There has been alot of interest nationally about this year's theme of younger people with dementia, so I am sure that local papers would also be very interested in covering the issue.

If anyone would like help with contacting their local paper, press releases about awareness week or the details of their local media I'd be happy to help. Every bit counts in helping to raise awareness of this very important issue.

Thanks to all our media volunteers who have been helping us promote Alzheimer's Awareness Week this year! We are still working with a number of different publications who are interested in speaking to younger carers so do get in contact if you feel it is something you would like to do.

Thanks again,
Gayle
 

JoJo

Registered User
Sep 25, 2003
38
Shropshire
Hi Gayle

I don't care for Dad on a day to day basis - that's my mum who is 59. I am happy to talk to anyone to help and am well versed in doing radio interviews if that helps. I can always ask Mum if she is prepared to talk to media for you.

If I can help at all please get in touch! Send me a pm and I will give you my phone number if you want to talk.

Jo
 

Margarhett

Registered User
Apr 30, 2004
22
Manchester
I'd be happy to speak up, and would enjoy the chance to let people know.
I'm an ex nurse and now carer of my husband. I also have public speaking experience, and would be willing to do all types of interviews.
 

janey21

Registered User
Mar 11, 2004
29
sunderland
i am young carer

hello

iam a young carer and would be interested in talking to someone. i care for my grandad along with my mam also though. i am turning 22 this week and know that it can be hard for young prople to be carers as i am still studying at university and have made alot of changes since my grand became ill, he has both AD and vascular dementia!

i would be interested in chatting to someone so feel free to get in touch or PM me.

thanks jane x x x
 

Vik

Registered User
Jan 29, 2004
12
Derbyshire
Hello. I am 29. My dad was diagonsed with alzheimers when he was 56. He died last year, aged 59.

I am used to pubilc speaking (I am a postgraduate lecturer) and am happy to do all I can to raise awareness about this awful disease. Also, I can give a slightly different perspective I guess, now that Dad is no longer suffering.

I did phone in to the Jeremy Vine talkshow on radio 2 and talk about Dad. I think it is so important to make people realise that this is not "Old Timers Disease" as I so often hear it referred to.

Let me know if there is anything I can do. Again, if you would like to chat, please send me a private message and I can call you.

Kind regards

Vikki
 

C.Waring

Registered User
Feb 6, 2004
21
Lancashire(East)
Willing Helper

Hi, I'm Vik's mum and it is exactly 12 months since we lost Jim to AZ at 59. I cared for him at home till 12 weeks before his death. Since then I have done fund raising on my own but I would be more than willing to help with any awareness raising at all ,particularly if any one wants to know what it is like to live through the disease and then to cope the loss afterwards. If I can be of use any where please let me know at any time. Carole
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Well, it may take a week or so...

Following my visit to Parliament to talk to MPs, my own MP, who could not make it on that day, visited me at home.

I drafted a long article for the local paper, and sent several photos and had almost given up on their publishing anything - until today, when they published it in full. I have a full quarter page of the Haslemere Herald, plus two of the photos.

... and Talking Point is quite heavily featured! :D

Unfortunately they changed my headline from "Local MP learns of early onset dementia" to "The living hell that is Alzheimer's Disease", but, papers will be papers!

Scan attached but you won't be able to read it as I had to reduce its size.
 

Attachments

JANICE

Registered User
Jun 28, 2005
23
71
SOUTHAMPTON
Dear Brucie,

I have just read your article and found it very moving. My husband is in the early stages of Alzheimers, being diagnosed last year at the age of 57 but looking back I think it started much sooner than that but was so gradual that I and my daughters didn't really notice it to that extent. Your article was excellent in bringing the problems of younger people with dementia people's attention, especially the bit about employment. I don't think people realise how distressing it is for the family and the sufferer when they have to give up work at an early age.

I'm afraid I am not very well up on how to use these web pages and find it difficult to get it right! I hope you get this but it's always a bit hit and miss when I try and reply to someone.


Janice
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Bruce,

The article was excellent. Personal stories are such a powerful way of communicating the devestation that AD produces, much better than all the statistics. The picture of Jan made it so poignant - she's looks so vital in that shot.

Now for a completely trivial coincidence. You used to work for SAS? Well ,my first job in Silicon Valley after university, included writing reports using software from the SAS Institute. I was extracting information from our home-grown ERP system. That was over 20 years ago :eek: !

Take care,

Sandy
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Sandy

Nice to see you also used SAS!

I introduced it at the University of London in 1980, the year the UK SAS office was opened. So I knew all the original UK SAS folks. I always loved the software itself and the company and the people who used the software. In 1991 I left the university to join SAS and was there until last year. These days the company and its view of its software has changed greatly, but it is still very, very special, and I miss the people a lot.

However, Jan's decline rather trashed me as far as work is concerned and the daft meaningless things you have to do in business, and no company would want to employ continually someone who takes a random 3 + hours out of each day to visit his wife, so here I am.

I've attached a picture of Jan with me at the SAS UK HQ, taken in 1993. Ah, she was already starting to be affected by then. SAS has a company policy of always buying [not leasing] fabulous office locations, hence the building behind, which housed my own office.
 

Attachments

Sandy

Registered User
Mar 23, 2005
6,847
Hi Bruce,

What a terrific picture - you and Jan look so happy! Looks like a wonderful place to work. Your NeXT shirt (obviously not the high street retailer) gives your IT identity away for sure.

Thanks,

Sandy
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Sandy

as you were around Silicon Valley parts you no doubt know that Steve Jobs, part creator of the Apple computer, left that firm to start Next, which was a super [but short lived successor] multimedia computer way before these were readily available.

I was at the UK launch at the London Palladium, which was where I got the T-shirt. I remember it well because digital sound was unusual then, and Steve Jobs played a duet [him on the Next machine] with the lead violin of the London Symphony Orchestra [on his fiddle of course]. Amazing.

Also got to meet Michael Dell in my travels. And of course Jim Goodnight, President of SAS Inc.

Ah, all water under the bridge now.

Jan's T-shirt was from Flamingo, in the Everglades.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Awareness Week outcome part II

Because Jan and I now have to live in different constituencies, we have two MPs of course.

My own MP James Arbuthnot has already visited me [see above], and tomorrow, Jan's MP Sir George Young is coming with me to her care home to see the place. This is as a result of the Alzheimer's Society Awareness Week Parliamentary Tea.

I will write another, slightly different article that, after agreement with Sir George and the management of the care home, I hope to submit to the Basingstoke Gazette.