Truth about dementia tv prog tonight just aired

[crybabe]

angela riron alzimerers

Just watching and had to turn off .All she did was grin through the process, the program did not portray what it really is and how hard it is on a day to day routine. Has she really had to deal with this on a one to one basis I don't think so. It really didn't portray the true life of living with this totally all consuming day in and day out illness

 

[Shabba]

Every time theres a tv programme or radio broadcast dealing with dementia I tune in to see how much I resonate with views, opinions etc that I've experienced as full time carer to mum with VD/AD. I am always interested in statistics, research etc and am always willing to learn and be educated.
However, is it just me that, on seeing the title "The truth about ..." I assume it'll discuss/show the nitty gritty, the frightening, the, frankly, smelly/bodily functions, the immobility issues ... I don't have to go on, you all know what I mean
I just watched and feel yet again it's a sanitised version - I do understand that for TV, dignity issues etc come into it, but I feel people watching who have no direct experience of it still don't get the reality of the disease. I can't help feeling the government/NHS think, oh good, a positive light thrown on it. How I wish my lovely mum of 80 looked so well in a twinset and pearls, hair coiffed, able to stand independently, no catheter hanging out. Oh don't get me wrong, she is washed, dressed nicely, I do her hair for her - but I wonder if casual viewers know about the soiled pads that need changing, the hoist to move her, the agitatation that wears you down, the restless nights etc etc
Not really a rant as such, but just a feeling of oh, a bit let down as to the reality of it all!

 

[Shabba]

Oh crybabe! Looks like we were both typing at the same time! At least I know you agree with me!! x

 

[BeardyD]

There were some valid things said such as "only people who care for someone with dementia can understand dementia" but this wasn't reflected in the pictures. There was also a very good example of repetition.

BUT

The words "Dementia" and "Alzheimer's" were used interchangeably which, to me, is the sign of poor research for the programme.

One woman with Alzheimer's was shown running a memory class and then shown needing instructions to make a cup of tea. Instead of using this as an example of how variable and selective dementia can be it seemed to be used to say "think more and you will get better". In fact the theme of exercising the brain seemed to dominate the second part of the programme.

Despite having negligible short term memory and a mixed-up long term memory when Angela Ripon was given the memory test my wife shouted out the answers before the questions were asked - so much be the validity of repeating the same memory test every few months.

So as Shabba says, a very sanitised programme and a lost opportunity. Back to explaining to people that playing memory games won't cure my wife - no matter how much we all wish it would.

 

[Kevinl]

It was about as "fluffy bunny" as you could get, all nice old mild people with a bit of memory loss and they've almost found a cure, learn Chinese.
I'm not if favour of the "in your face" portrayal of AZ but neither do I like the "slightly dotty old person" portrayal either, forgetting your wife has gone for a manicure 5 times isn't the same as getting hit in the face with a can of baked beans (cost me a tooth).
They showed that some people with mild AZ or dementia issues can live a good life nothing about the harsh realities Shabba talks about and many of us live with, not a mention, too fluffy bunny, isn't helping the cause, why should public money be put in when all you have to do is learn a foreign language, not drink or smoke.
She made dinner for someone with AZ, never bothered that if she left a knife lying around she might get hurt...I used to.
Frankly I found it insulting and patronising and diminishes all that many on here have been through, she never got hit once, never mopped up any pee, no one threw anything at her, sorry it was the very soft side of aging passed off as the harsh reality of dealing with AZ. I feel what I do is devalued by programmes like this.
K

 

[Emac]

Every time theres a tv programme or radio broadcast dealing with dementia I tune in to see how much I resonate with views, opinions etc that I've experienced as full time carer to mum with VD/AD. I am always interested in statistics, research etc and am always willing to learn and be educated.
However, is it just me that, on seeing the title "The truth about ..." I assume it'll discuss/show the nitty gritty, the frightening, the, frankly, smelly/bodily functions, the immobility issues ... I don't have to go on, you all know what I mean
I just watched and feel yet again it's a sanitised version - I do understand that for TV, dignity issues etc come into it, but I feel people watching who have no direct experience of it still don't get the reality of the disease. I can't help feeling the government/NHS think, oh good, a positive light thrown on it. How I wish my lovely mum of 80 looked so well in a twinset and pearls, hair coiffed, able to stand independently, no catheter hanging out. Oh don't get me wrong, she is washed, dressed nicely, I do her hair for her - but I wonder if casual viewers know about the soiled pads that need changing, the hoist to move her, the agitatation that wears you down, the restless nights etc etc
Not really a rant as such, but just a feeling of oh, a bit let down as to the reality of it all!

Hi Shabba. I just caught the end of the programme so will have to watch on catch up. To be fair I don't think it was billed as a 'warts and all' expose of how horrible this disease is or how it destroys lives of sufferers and carers. I can't imagine this would attract a lot of viewers! It was as I expected about causes and effects on the brain and how you can give yourself a fighting chance of not succumbing to the disease. Even if a miracle cure were found now, it is too late for us on the forum whose loved ones are already living with it one way or another so not much comfort for us there. You only know what it is like when someone you love gets the disease. Thank good ness there is talking point and people who get the awfulness of it all. Rant all you like! xx

 

[Kjn]

Yer I'm Just watching it now, so annoying .
The woman who to remind her how to make a cuppa using iPad....how do you know how to use an iPad , or where the iPad is my dad would have more chance of making a cuppa with help than knowing what an iPad even is.
Fluffing up .

 

[tigerlady]

It was a lost opportunity to explain the real "truth" about dementia - there was no mention of the aggression, delusions, anxiety, sundowning, wandering and toilet problems. It did nothing to inform the general public about the truth and reality of looking after someone with dementia. I was disappointed - especially as it kept on about using the brain to delay it - what about all the super intelligent people who get it - they never stopped using their brain but it still crept up on them

 

[Onlyme]

If she had a parent with Alzheimer's I can't see that she would want the illness portrayed like that. I wonder how much of her looking after Bob/Bill ended up being cut.

 

[Onlyme]

I can see that one message they were trying to get across was that dementia can't always be seen. iPad thing had me speachless. Mum couldnt turn the TV on as the remote was missing let alone understand an iPad.

I was expecting a warts and all programme but it came across as more fluffy bunnies.

 

[Alison N]

I agree with everything that has been said above but my husband who was diagnosed 18 months ago with young onset AD insisted on watching it. He is not aware of the incontinence and the rest of the nitty gritty that is to come and for that I am thankful. I just hope he forgot about the life expectancy of 8-10 years that the programme stated.

 

[chick1962]

It was a bit fluffy bunny but some of it was interesting . My OH can still use an I pad if I set it up and sign in for him. However it takes me ages to work out his message he is sending me as writing is poor. He can't read that much as he reads the first line again and again but if he watches u tube and sees what they are showing he understands it much better. Everyone with dementia is so different which did not come across very well . It amazes me how OH can do really difficult things and yet can't the simplest ones .


Sent from my iPhone using Talking Point

 

[Jesskle66]

I was deeply disappointed by the programme. It certainly wasn't my 'truth about dementia'. All it did was perpetuate the idea that the main issue is memory loss and in addition they focused on high functioning individuals so that dementia just seemed like a minor irritation. The focus on the programme was on the well, and the average well person's possibility of developing dementia. The only part that made me feel any empathy was the story of those who have a genetic certainty of developing the disease. A real shame when the bbc were brave in their portrayal of dementia in Holby a couple of years ago, when The story was on Serena's physical aggression and assault by her mother with dementia. My truth about dementia is being accused of everything from stealing to murder, being physically assaulted, sectioning, endless care meetings and anxiety about funding a care home place, the gut wrench of clearing my childhood home, mum begging me to go home, hallucinations, more violence. I'm waiting for your call, BBC.

 

[chick1962]

I agree with you totally Kassy xx


Sent from my iPhone using Talking Point

 

[Marnie63]

Just the one fact that they kept interchanging the words Dementia and Alzheimer's really annoyed me. No even basic explanation that Dementia is an umbrella term for all the types of. That's gob-smackingly misleading. If I didn't know any different I would now think dementia and Alzheimer's meant exactly the same thing!

As for the 'truth about dementia'. They got that totally, totally wrong.

I personally think someone from the Alzheimer's Society should put in a formal complaint to the BBC. If I had the time and energy I'd do it myself.

I'm amazed Angela Rippon would front such a misleading programme as well.

 

[nitram]

I am in broad agreement with what has already been said.

One thing that I found interesting that has not been mentioned was included in the bit about nonagenarians towards the end. They showed a brain section from a person that was full of plaques and yet the person had not exhibited signs of dementia. One inference from this is that in the future it might be possible to remove the syndrome even if the plaques remain in place - the illusive cure.

 

[stanleypj]

This was also noted in some of the post mortems of some of the nuns in the nun study, as we've discussed before. I've always been amazed that this phenomenon is not more widely known since, as you say, it may suggest that a cure could be attainable at some point.

It also fits in with the suggestion that the 'memories' (in the widest sense) may still be 'there', they have not been destroyed, but the ability to retrieve them has been lost.

 

[Toddleo]

I'm not if favour of the "in your face" portrayal of AZ but neither do I like the "slightly dotty old person" portrayal either, forgetting your wife has gone for a manicure 5 times isn't the same as getting hit in the face with a can of baked beans (cost me a tooth).
K

Precisely, this programme made me MAD...

 

[Sue J]

It also fits in with the suggestion that the 'memories' (in the widest sense) may still be 'there', they have not been destroyed, but the ability to retrieve them has been lost.

I've not watched the programme yet. But I totally agree with what you write Stanley

ability to retrieve them has been lost

or severely damaged

 

[Witzend]

Yer I'm Just watching it now, so annoying .
The woman who to remind her how to make a cuppa using iPad....how do you know how to use an iPad , or where the iPad is my dad would have more chance of making a cuppa with help than knowing what an iPad even is.
Fluffing up .

I wish I could say I was remotely surprised by this.

Same old thing - they want to make it seem 'cuddly' and 'nothing to be frightened of'.

How long before some clueless 'professional' now suggests to some family carer at their wits' end, that if their spouse/parent has forgotten how to make themselves a cup of tea, all they need to do is buy them an iPad?

PS - off at a bit of a tangent here, but anyone who hasn't seen it, do please search 'German father and iPad' on YouTube. It's all in German but the language doesn't matter - at least it should give you a laugh!