Do you think high-profile people talking about dementia helps increase understanding?

PompeyNev

Registered User
Oct 31, 2017
12
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I don't suppose it hurts, as it keeps the illness in the spotlight. But I'm not sure what it actually achieves. And I'm not sure it's very representative of what most of us have to go through. As many have said here, celebrities' publicity can appear sanitised, far removed from the nitty-gritty of helping relatives deal with their deteriorating conditions. And it's also true that the prospect of losing everything they've worked for, saved for and sacrificed, just to pay for the right to live and be looked after somewhere, is rarely reflected in the lives of celebrities whose cases are publicised. It will be interesting to see how Alastair Stewart and his family chronicle his journey. Warts-and-all might help highlight the plight that sufferers and their families have to endure.
 

mikeb2

Registered User
May 17, 2022
217
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Me and my OH are often talking about Dementia to all who wish to listen especially LBD which my OH has- what gets me is a lot of people knows what Alzheimer's is but few understand the other types of dementia - how about showing TV adds or Stories in the paper Media on these other types of dementia
 

Saddy

Registered User
Jan 27, 2020
33
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Don’t think they do anything than the usual response I got for years. “Ah bless” They are always articulate, not slow for another appearance and are trying a new wonder drug. Some struggle to get a diagnosis for a Lon time. Such is the problem now so many people have experienced the real struggles as some above have mentioned.
 

JackieFz

New member
Apr 15, 2023
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I feel that the positivity around these people's announcements smacks of the 'living well with dementia' message, although to be fair to Alastair Stewart he does mention his wife having become his carer. These people will disappear from view as their dementia progresses which can leave a misleading impression about how severely dementia affects people. We're not going to see these people being fed, struggling to speak or slumped in a chair showing no interest in their surroundings. In these announcements they are articulate and well-dressed which doesn't hint at the decay to come.
Totally agree. While it's great for celebrities to raise awareness, it does give a somewhat unrealistic impression of the effects of dementia.
 

try again

Registered User
Jun 21, 2018
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I feel that the positivity around these people's announcements smacks of the 'living well with dementia' message, although to be fair to Alastair Stewart he does mention his wife having become his carer. These people will disappear from view as their dementia progresses which can leave a misleading impression about how severely dementia affects people. We're not going to see these people being fed, struggling to speak or slumped in a chair showing no interest in their surroundings. In these announcements they are articulate and well-dressed which doesn't hint at the decay to come.
Agreed
 

Scarlet Lady

Registered User
Apr 6, 2021
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Within the last couple of days there have been a couple of newspaper interviews with Fiona Phillips (former tv presenter diagnosed with dementia) and Timothy West (husband of actress Prunella Scales who has suffered from dementia for 20 years).

Both were interesting. Ms Phillips is on a trial of an undisclosed drug which may slow things down somewhat. As I understand it, she may be on the placebo, she doesn’t know. Her treatment involves injections into her stomach and she has said how sorry she feels that her husband has to do this for her.

Mr West has given many interviews over the years about caring for his wife with dementia. She’s done remarkably well and seems to be functioning better than anyone might expect. He has been able to care for her at home. He admits to having a live in carer who is ‘very nice’ but because she’s relatively new, he couldn’t actually remember her name. Mr West, in fact, didn’t seem to be able to remember very much, which makes one wonder if he too may be exhibiting signs of dementia.

These are sad situations, but they are very far removed from the reality of most people living with dementia. I’m not saying they shouldn’t be talked about, but unfortunately, they don’t always help to show the reality of dementia for the vast numbers of families for whom money cannot benefit them in this way.
 

jennifer1967

Registered User
Mar 15, 2020
22,711
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Southampton
i think that yes they have the money for all the care and help they need so cushioning the affects of dementia but they have dementia and they are the ones that are suffering the same as a poor person. money doesnt change the fact that they have a diagnosis and will go through the same illness as many others. it must be frightening to get that diagnosis and all the consequences of that. yes they have the money and all the services but they also have dementia.
 

Chizz

Registered User
Jan 10, 2023
3,148
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Kent
Yes, thanks @Neveradullday! for your link to that video. Moving and honest.

Lots of people have put up posts that complain that well known persons or "celebrities" who have dementia are not typical of the struggles of the majority of carers who don't have funds available to achieve the best care for their loved ones.

Whilst this is true, not saying anything, not have these interviews, articles, videos etc would say nothing at all. Nothing at all is zero help.

As I understand the AS campaign, it is to raise awareness of dementia and its problems to all the people out there who do NOT have dementia, who are NOT carers, and who, without publicity, would continue to NOT know about it.

Thus, the more publicity, the more that dementia is shown, the more the people who do not have it, or are not carers, will know or get to know. Hopefully, the more money they will donate to AS (or other dementia charities) to help with research, with education materials, to spread the word wider and wider, and/or to lobby those in power - local or central - to give more priority to helping the sufferers and the carers, etc.

Well known persons get taken notice of more than the "every day Joe or Jo"
 

ged626red

Registered User
Jun 10, 2022
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Chadderton near Oldham
Firstly they say knowledge is power. I agree totally about dementia being high profile but we should be explaining all the time what this terrible illness can bring for both the person with the disease and the carer. This way this will have a much greater impact on society and raise the public awareness which in the end is likely to achieve more importantly greater financial rewards for the ones like me caring at home especially as said before how much this costs. The carers are under enough unbelievable pressure as it is and to add to this, the negativity of having to go through these intolerable hoops to get the correct financial help is beyond belief. The mentality of benefits by government or local authority is not to help but to find ways to hinder and stop them paying the money we all actually need and I do speak about only genuine cases as fraud within this area can cause these aforementioned issues. Sort out the wheat from the chaff and pay the genuine ones quickly and with ease and not add to the pressure carers face. Easier said than done I know but we have to as a nation resolve these matters quickly and with great sensitivity.
I will end with the word dementia I literally hate that word, I would prefer a much more sympathetic word like M L ie memory loss.
 

canary

Registered User
Feb 25, 2014
24,701
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South coast
I will end with the word dementia I literally hate that word, I would prefer a much more sympathetic word like M L ie memory loss.
I agree that dementia is an unsympathetic word, but changing it to Memory Loss would not be helpful IMO as this is all the general public thinks that dementia is, but dementia is about far, far more than this and memory loss is just the tip of the iceberg
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,215
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Kent
We all hate the word dementia just like we all hate the word cancer but they are what they are, they are words which when spoken leave no one in any doubt what the problem is.
 

Jan. C

New member
Sep 14, 2023
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I think that it does help. It increases awareness and encourages people to talk about dementia. It can otherwise be a taboo subject. It lets people know that it can happen to anyone.
 

mikeb2

Registered User
May 17, 2022
217
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I have got LBD and watching the video on Nigel is very difficult for me Im so fearful now on what im facing , we at the early stages feel very much in denial
 

Neveradullday!

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Oct 12, 2022
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England
I have got LBD and watching the video on Nigel is very difficult for me Im so fearful now on what im facing , we at the early stages feel very much in denial
I'm sorry for posting it now, @mikeb2 . It was because other posters were saying high profile people weren't giving the full warts and all picture, whereas I remember seeing this nearly 2 years ago.

Mr Starmer - Smith's dementia is a particularly fast acting one - in the Spring he was commentating, in the Autumn he couldn't speak. New treatments seem to be coming on board all the time to slow dementia down - I'm sure things will go better for you. Sorry again.
 

Gosling

Volunteer Host
Aug 2, 2022
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South West UK
I found the Nigel Starmer-Smith video very moving indeed - no surprise there. I certainly agree the 'raising awareness' of dementia and bringing it home, warts n' all is so important. Even now, I can see that same look, and inablity to swallow, and pushing mu own dear Mum round the care home grounds covered in a blanket, as you see in Nigel's video. Well done to his son for doing it. He's a wonderful son
 

Watson1

Registered User
Sep 4, 2023
57
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A lot of great responses.Talk is good money for those in need of care is even better!!
 

PompeyNev

Registered User
Oct 31, 2017
12
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I agree that dementia is an unsympathetic word, but changing it to Memory Loss would not be helpful IMO as this is all the general public thinks that dementia is, but dementia is about far, far more than this and memory loss is just the tip of the iceberg
Absolutely this. It frustrates me when people not directly affected assume it's just a bit of memory loss - just like them! Dementia is appropriate, in my view. The worse it sounds, the better - it's still nothing compared with living with the disease, or with someone who has it.