Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at firstname.lastname@example.org and we'll be happy to ask them on your behalf.
I agree it's sad that it takes that to raise the profile of such a devastating illness, but like you every time anyone connected with the media is able to 'highlight' the problem may hopefully change people's perception and therefore provide better facilities for sufferers.It's sad that it takes a celebrity or the death of a celebrity to raise the profile of a disease, but the BBC story did contain some sensible information from the Alzheimer's Society and a link to their website, so something positive may come out of the lady's sad demise.
Did she really?The Kray twins must have been busy!Money can make the practical issues go away but the emotional distress is just as painful.
And you have no idea who posts on here, that is the beauty of it that we can be totally honest because no one knows who we are.
FYI I have never seen Eastenders, I am old enough to know she took Kenneth Williams and his mother ( another relationship dogged by AD) on her honeymoon.
That's interesting, and lovely to hear. Barbara seems to have been at an anxious stage for a while, from what Scott has said. Maybe that will pass, as you say it's different for everyone.It`s best not to generalise when living with dementia.
We had the best four years in the later stages, when my husband was in residential care. By then he had lost insight into his illness and was not as frightened. He welcomed me with every visit and we regained the closeness which had been lost for years.
Well now, I used to contribute to the national press in one of my other lives and I would be willing to tell the truth. The only reason I haven't pitched to write an article about it with no holds barred is simply this. I am afraid it will terrify anyone who is newly diagnosed. Opinions welcome.There have been follow up discussions on breakfast TV etc. It is good to raise awareness but I always have problems with the media almost glamourising the disease as if a bit of recognition is going to make it all better. On the back of the Barbara Windsor announcement, rhere was a lady who sadly has dementia telling everyone how positive she is and how she can go anywhere by herself as her family use a tracking device to help her. She was saying how positivity is the key. It was all so jolly. We know the reality is different. When my mum was first diagnosed we went to dementia cafes and singing for the brain together. She could watch a bit of TV and have some conversation. To be fair we had a positive 2 - 3 years together. However 8 years on we have been through one traumer after another as dementia has advanced and I'm afraid that is the reality. The poo, the screaming for hours, the lack of sleep, the continuous infections, having to go into a Home as I could no longer cope, not eating, not recognising me anymore, doubly incontinent and no longer mobile. The desperation you feel as a carer because there is nothing you can do to take away the pain and suffering from someone you love but really isn't there anymore, knowing there is no way back and the only peace will be in death which could take months even years. The media needs to show what dementia is really like for those who have it and their carers. The portrayal in the media of people apparently getting on with their lives and even finding positive sides isn't helping as it isn't the true picture. Dementia is a relentless treadmill and wears you down however positive you are. Yes, raise awareness but tell the truth.
There is no justice. I didn't post as a 'fan'. I posted as I hope her diagnosis, and her husband's openess about it will make unaffected people more aware about what we go through, on a daily basis. Sorry if I offended you, kevinlSomeone famous gets anything and there's a national outpouring of grief, daily people post on here saying their loved one has been diagnosed...where's the justice in that?
If you follow the celebrity culture then OK, I don't the things people say on here are way more meaningful to me mainly because we're just ordinary people facing an extraordinary challenge.
Barbara Windsor has enough money to buy the best care you can get, she won't be LA funded, having to apply for AA or a council tax disregard.
I feel as sorry for her as I do for anyone diagnosed with AZ but just because she's famous doesn't make me anymore or less sorry for her, OK she's famous but her family and friends won't ever have to face some of the challenges carers on here do every day, they can just buy help in.
Emotionally her family will be no different to anyone on here, but they won't be on here posting how they're emotionally broken just trying to care for someone with AZ.
Every diagnosis is just so sad, be that someone famous or not famous, as I say I don't do celebrities so the grief of a bunch of Eastenders fans like she's the first person ever to be diagnosed leaves me a bit cold.
I'm not in any way offended but my guess that this will only show the good bits and she'll be shown as getting a bit dotty and should she become aggressive, violent, verbally abusive or incontinent none of that will ever make the papers and AZ will again be shown as just a bit of forgetfulness and not the reality so many have to live with.There is no justice. I didn't post as a 'fan'. I posted as I hope her diagnosis, and her husband's openess about it will make unaffected people more aware about what we go through, on a daily basis. Sorry if I offended you, kevinl
I can see what you are saying. We haven't reached the advanced stage yet (we are at the scratching until she bleeds, on a daily basis, craing sugar, flooding the bathroom etc) so I guess I was being naive hoping the publicity would help raise awareness. My bad.I'm not in any way offended but my guess that this will only show the good bits and she'll be shown as getting a bit dotty and should she become aggressive, violent, verbally abusive or incontinent none of that will ever make the papers and AZ will again be shown as just a bit of forgetfulness and not the reality so many have to live with.
The whole disease will be sanitised for public consumption which totally undervalues and undermines what so many on here are doing and have been for years, none of the ugly side, should it happen to her will ever get reported.
I appreciate that it wouldn't be fair to her to show her with advanced AZ so it'll come across to many that AZ is just getting a bit confused and not the reality of what it can be like.