Radio 4 BBC Dementia Month - Have you been affected by dementia?

[CraigC]

Hi All,

Just passing on a link I came across.

Starting the 7th November, the BBC Radio 4 will be running programs for dementia month. They are looking for input for stories and the issues that people would like to see covered.

http://www.bbc.co.uk/radio4/youandyours/dementia.shtml

Kind Regards
Craig

From the BBC Site -

Starting on November 7th a special month-long series looks at the often devastating effect it can have on people's lives, and those who care for them.

Our panel of experts will examine the causes of some of the 200 different kinds of dementia, including Alzheimer’s and vascular dementia, and who is at risk of developing them. We investigate key issues surrounding care, drug availability and the latest scientific research. We look at the power of memory, the role of music and alternative therapies, and how to tackle challenging behaviour. And we talk to families struggling to cope, as well as couples who feel dementia has made their relationship stronger than ever.

Have you been affected by dementia? Tell us your experiences, and what issues you'd like us to cover. We will be featuring some of your stories within the series.

Also many thanks for the society supporting the program!
You can find out more at:
http://www.alzheimers.org.uk/News_and_Campaigns/News/051027youandyours.htm

 

[Sandy]

Hi Craig,

Thanks for that. I find Radio 4 such a wonderful resource for staying informed about all kinds of things.

There is also another series of four programmes which they are doing at the moment called Building a Healthier Britain. The first episode, airing on Tuesday of this week, was on diabetes. The third episode will be on Dementia and it will be broadcast on Tuesday 15th November at 9 pm and again on Wed 16th November at 4.30 pm. After broadcast, the programmes will be availble over the internet:

http://www.bbc.co.uk/radio4/science/buildingahealthierbritain.shtml

The programme on diabetes was really informative, so I hope that's a good indication for the series as a whole.

Many thanks,

Sandy

 

[daughter]

Hi Craig and Sandy,

Thanks for the links and info. I thought the first 'You and Yours' on dementia today was very good.

If anyone missed it, they can listen again here:

http://www.bbc.co.uk/radio4/youandyours/listenagain/monday.shtml

Thanks again,

 

[CraigC]

Excellent, thanks Hazel!

 

[Kathleen]

Thank you Craig and Hazel,

I have just listened to the programme via the link as I am at work when it is broadcast and I found it very interesting.

There was a good mix of information,opinions and personal stories.

I will "tune-in" daily now thanks to Hazel's link

Kathleen
xx

 

[Sandy]

Hi Hazel,

I also heard the programme and was similarly impressed. It was a really good mix of personal stories and expert opinion. It was the first time I'd actually heard Barbara Pointon speak on the subject. I thought her comment on her husband's changing attitude towards dancing was really intriguing - the loosening of inhibitions.

If anyone didn't catch it, I would heartily recommend the "Listen Again" feature, thanks for that Hazel. So many of the topics were familiar - like an audio visit to TP.

Take care,

Sandy

 

[connie]

Not at home at present, so thanks for the link to Listen Again. Will do that as soon as I am back home. Connie

 

[Rosalind]

I found yesterday's Y and Y rather depressing, as the two sufferers they had on were so positive. I particularly admired the man from Scotland with VaD who was involved in a self help group. In contrast, my husband spends a lot of the time being like Kevin the teenager, and would no more attempt self help than fly - self pity yes, but any suggestion as to how his life might be made a bit more enjoyable for both him and those around him is dismissed instantly.

The doctor claimed that nowadays there were so many treatments that could be given, which again could raise false hopes, as Aricept did nothing in our case and nothing else has been offered.

But it is a good thing the subject is being aired.

 

[JoJo]

Rosalind,

Your post really made me smile as my mum, dad and I were one of the family's featured and we were very worried that we had been nothing but negative!

Mum can easily identify with what you have said - Dad has just been put on anti-psychotic drugs after he was violent to her (that was included in the radio 4 interview but whether they'll use it I don't know)

I think what is interesting is that if my dad had known he would get dementia before he became ill he would have been destroyed. But as it was, he was so unlike himself, he was just pleased that it was an illness causing him to be this way and not a fault of his own.

JoJo

 

[JoJo]

Nada,

Thanks for the praise - I've relayed it to Mum and Dad as they are the real stars! If them speaking about their experiences helps one family, they say it has been worth while - although I think Dad just thought Carolyn, the reporter, was a nice woman who'd popped round for a chat! Mum also chuckled at Rosalind's Kevin the teenager analogy - Dad is just like a truculent toddler she says - throwing his toys out of his pram if woe betide anything gets in the way of his daily nap/painting/watching Countdown!

For instance, during the recording of the interview, Dad interrupted a totally unrelated discussion to demand his lunch!

You and Yours is tackling 'who to tell' tomorrow (Weds) which my very brave 10 year old daughter spoke to Radio 4 about and they'll be looking at NICE's proposals to withdraw dementia drugs soon as well.

JoJo

 

[Stimpfig]

Just listened to the BBC programmes (Monday and Tuesday). Does anyone know how to get hold of the 1999 BBC documentary featuring Barbara and Malcolm ? Couldn't really locate the archives.

Sue Stimpfig

 

[Stimpfig]

Dear Jo Jo

Your dad came across as eloquent Seems like his level of awareness is pretty high. That he asked for the meal and he could remember he had bought the bread in the morning impressed me. He only didn't remember that it's called 'sandwich'

I am looking forward to listening to Wednesday's prog. on drugs/withdrawal of Dementia drugs. The issue relating to Dementia drugs is so complicated

Regards

Sue Stimpfig

 

[daughter]

Sandy, yes, it did feel like I was listening to the posts here! I personally would have prefered less of the soulful piano playing in the background in certain parts, but still. JoJo, you and your family really are an inspiration.

I'm looking forward to the rest of the series including the "hope and humour" mentioned, which is often over-looked in articles on dementia.

I mentioned in another thread about how Dad's unpredictability can be very hard, but I have to say it can also be the funniest part - as when JoJo's "Dad interrupted a totally unrelated discussion to demand his lunch".

Dad was nearly always cheerful and laid-back but now he often becomes irritated at petty happenings. A few weeks ago, when visiting, we were walking around the grounds and I picked a dandelion seed head (anything to entertain and try to get some positive reponse) and I blew the seeds.

Unfortunately the wind blew them backwards, all over Dad's jumper. His reaction was a sarcastic "oh, very nice". He used to joke at times like this, pretending he was upset, and Mum and I would laugh in response to his faked annoyance, but now he gets genuinely irked.

Mum and I still chuckled though, because of the irony that his reactions were the complete opposite of how he was before - it's hard to believe that Dad, of all people, would get upset over something as trivial as that!

 

[Sandy]

Hi Hazel and Jojo,

Hazel your story about your dad sort of reminded me of my father-in-law. In some ways he has become more sociable, especially with strangers, as his inhibitions have lessened. Sometimes little things do provoke him more than they would before, but I think that his sense of perspective has been distorted by AD. He does so little now, that a trivial little thing may become the focus of his attention in a way that it never would before.

Jojo, I just heard today's segment on "To tell or not to tell" and you, your mum and your daughter were all brilliant! I have a nine-year-old daughter myself so can sympathise with your daughter's point of view, which she put across so clearly and sympathetically. Please tell her Well Done from me.

I have to say your family's approach to telling others certainly came over as very sound. I liked the way the doctor said, without trying to dictate what an individual family did, that by not talking about the condition, people ran the risk of allowing misinformation and stigma to go unchallenged.

You and your family have done a great service for all of us.

Take care,

Sandy

 

[Lynne]

Perhaps I expected too much, but ...

I find myself disappointed with the You & Yours Dementia broadcasts, by and large. As is common with 'headline' subjects in all the different types of media, the first offering on Monday seemed promising, but each successive day seemed to have less and less impact. Perhaps it is because I have been spoilt by joining this excellent forum, which pulls no punches & asks for no quarter, but I found their coverage superficial & wishy-washy. I have nothing but praise & admiration for the actual AD-sufferers & families who took part, but felt the "experts" could have been better chosen or coordinated. I feel the BBC lost heart, once they realised what a distressing & depressing subject they had taken on. I also feel I may be the only dissenting voice, so I'll shut up now!

 

[daughter]

Hi Lynne,

I also felt it did rather loose a bit of momentum after the first day. As you say, the real-life stories were excellent, but in the other parts where was that "hope and humour" that they mentioned on Monday? You're right, I suppose it's difficult for anything to live up to expectations when comparing with TP.

 

[Sandy]

Hi Everyone,

I just saw Jojo's family's story on the frontpage of the BBC News site (one of the most popular sites on the internet):

http://news.bbc.co.uk/1/hi/health/4427544.stm

The story also has a link to the Alzheimer's Society home page.

Good job!

Sandy

 

[Brucie]

... now if we only had the in-the-face link to TP from there.....

[sorry Nada, not digging, honest, Guv...]

 

[daughter]

"I just saw Jojo's family's story on the frontpage of the BBC News site (one of the most popular sites on the internet)"

Briiliant publicity and excellent article. Thanks Sandy and thanks again JoJo - oh, and thanks BBC.

 

[CraigC]

Goodness me. Another story that brought tears to my eyes. Great to see such genuine emotion in the public forum - well I guess the BBC is as public as it gets.

Empathy - that is all I can say.