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

[mikeb2]

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.

We too have heard this too and it very frustrating and having to justify yourself each time- they expect to see a person who completely loss all function before one hear Oh thats dreadful etc

 

[ged626red]

Hi all
thanks for your replies - I am directly affected and I am certainly not assuming its just a bit of memory loss that is not really what I was trying to get across - Dementia just conjures up the wrong things for me personally as my wife is or was exceptionally intelligent. If there was something better out there that would be good I feel - sorry if I have misled you all.

 

[canary]

Hi all
thanks for your replies - I am directly affected and I am certainly not assuming its just a bit of memory loss that is not really what I was trying to get across - Dementia just conjures up the wrong things for me personally as my wife is or was exceptionally intelligent. If there was something better out there that would be good I feel - sorry if I have misled you all.

I know that you are directly affected and I know that you know its more than just memory loss. My point was that the general public (who are not directly involved) does not know this, so to rename dementia as ML (Memory Loss) gives entirely the wrong impression.
Just my opinion
xx

 

[SeaSwallow]

I know that you are directly affected and I know that you know its more than just memory loss. My point was that the general public (who are not directly involved) does not know this, so to rename dementia as ML (Memory Loss) gives entirely the wrong impression.
Just my opinion
xx

I agree @canary It is so much more than memory loss, that is the least of my husband's issues at present.

 

[Weasell]

I know that you are directly affected and I know that you know its more than just memory loss. My point was that the general public (who are not directly involved) does not know this, so to rename dementia as ML (Memory Loss) gives entirely the wrong impression.
Just my opinion
xx

There will always be pressure to find an alternative name for dementia, there is a whole body of people who’s job description and therefore income, relies on it.

I don’t think the name dementia should be changed.

The best alterntive is progressive brain disease, in my opinion.
But what might happen is it gets abriviated to PBD. Then when no one can remember the correct initials they come up with some slang terms which is even worse.

I think we should have celebs shouting from the roof tops!
A lot of people only care about themselves when you drill right down. Anything that gets them thinking ‘this could happen to ME’ must be good, both financially and in kindness and compassion.

A lot of the celeb info will be misleading, but who cares ? just keep up awareness!

Example of misleading.
Recent celeb
I saw my doctor, who really listened, they arranged an MRI and I received my diagnosis.

Mum
went to doctor, who didnt think there was much to worry about, pushy daughter present, so visit to the house arranged ( some time in the future)

Lady comes to the house, does the comic ‘who is the Prime minister’ test. She says Mum‘s Score doesn’t indicate the need to take action at present, but to contact them if we have any more concerns.

Contact them more concerns.

Appointment with the memory clinic.

Diagnosis via CT scan (cheaper).

This took months. But that will always be the difference between rich and poor, all around the globe, it’s just life.
I would still rather every celeb spoke out, because let’s face it no one wants to hear about ’ normal’ people.

Also while understanding from the public is very welcome, how much knowledge do they need. The thought of me getting dementia paralyses me with fear. I think that might qualify as too much understanding.

 

[Louise7]

I personally think it’s good to have a mix of famous and non-famous people talking about dementia and raising awareness. I read that there was a 12,000% increase in people visiting the AS website in the 2 days following the announcement that Bruce Willis has dementia, plus people like Vicky McClure, Bruce’s wife, and the work that they and others do in highlighting the different types of dementia/symptoms, can only be a good thing in my view.

let’s face it no one wants to hear about ’ normal’ people.

I do! I’ve enjoyed reading the series of articles titled ‘The real faces of Dementia’ which have been in the Metro newspaper daily since last week, including an article about someone who worked on the AS ‘Ultimate Vow’ ‘in sickness and in health’ campaign and talks about her Dad who had FTD:

https://metro.co.uk/2023/09/27/my-d...entia-18552869/?ico=just-in_article_must-read

For those that haven’t seen it, here’s another film that is part of the same AS campaign – Raymond & Cynthia:

For anyone interested, here’s a selection of some of the other Metro articles, including someone who mentions the AS Dementia Support line - “I dialled them, and they saved my life”:

https://metro.co.uk/2023/09/21/you-...ear-those-words-19524771/?ico=more_text_links

https://metro.co.uk/2023/09/26/my-husband-was-diagnosed-with-dementia-at-just-42-19555101/

https://metro.co.uk/2023/09/24/they...o-the-menopause-but-it-was-dementia-19522164/

https://metro.co.uk/2023/09/21/im-g...rs-final-after-filming-grandad-died-18496749/

 

[Weasell]

I personally think it’s good to have a mix of famous and non-famous people talking about dementia and raising awareness. I read that there was a 12,000% increase in people visiting the AS website in the 2 days following the announcement that Bruce Willis has dementia, plus people like Vicky McClure, Bruce’s wife, and the work that they and others do in highlighting the different types of dementia/symptoms, can only be a good thing in my view.



I do! I’ve enjoyed reading the series of articles titled ‘The real faces of Dementia’ which have been in the Metro newspaper daily since last week, including an article about someone who worked on the AS ‘Ultimate Vow’ ‘in sickness and in health’ campaign and talks about her Dad who had FTD:

https://metro.co.uk/2023/09/27/my-d...entia-18552869/?ico=just-in_article_must-read

For those that haven’t seen it, here’s another film that is part of the same AS campaign – Raymond & Cynthia:

For anyone interested, here’s a selection of some of the other Metro articles, including someone who mentions the AS Dementia Support line - “I dialled them, and they saved my life”:

https://metro.co.uk/2023/09/21/you-...ear-those-words-19524771/?ico=more_text_links

https://metro.co.uk/2023/09/26/my-husband-was-diagnosed-with-dementia-at-just-42-19555101/

https://metro.co.uk/2023/09/24/they...o-the-menopause-but-it-was-dementia-19522164/

https://metro.co.uk/2023/09/21/im-g...rs-final-after-filming-grandad-died-18496749/

Yes! You are right!
To be fair I read the Metro article !
But I still think if you filled Hello Magazine with normal people there may be a reduction in sales!

 

[jennifer1967]

bruce willis wife called herself a care partner rather than a carer. i like that as it implies that they are a team and keeps some control for the sufferer if only in the early stages.

 

[ged626red]

I know that you are directly affected and I know that you know its more than just memory loss. My point was that the general public (who are not directly involved) does not know this, so to rename dementia as ML (Memory Loss) gives entirely the wrong impression.
Just my opinion
xx

There are always two sides too every opinion and I can certainly see where you are coming from here so maybe there is a better word out there which meets both of these points.

 

[Agzy]

Yes @HarrietD it really does help. It also makes us full time carers feel a little less isolated. Having some show that they care is a help and a boost.

In this weekend just gone edition of the Sunday Times magazine, the front cover and 9 pages given over to an interview with TV presenter Kate Garraway. I know this is not about dementia, but about her husband's year stay in hospital, and bedbound at home now, with Covid19 and related complexities, but it is about ( their words "the brutal reality of providing 24 hour care") full time care and the enormous effect this has on the carer and the family and the emotional investment a spouse /partner has, often to extent of over doing it and becoming a patient themselves.

A well known person (sorry, I don't like the over use of the word celebrity for some not celebrated) with a high profile can get their words printed, their pictures shown and their story told. The newspapers aren't going to come to me for an interview. Who am I? Just one of the thousands and thousands of spouses / partners/children full time carers hidden away from society. We all know dementia is a physical and not a mental illness, but is the only physical illness ignored and underfunded by government, because there are just too many to pay for. And the number of sufferers will only go up.

A society should be a group of people where the strong look after the weak. It should be judged by how it treats its disabled, under privileged, etc members, which includes not only the dementia sufferers but all their respective families, which is a v large number of people.

Many charities have persons affected by or connected to their cause as champions to spread the world, do all the PR interviews etc (eg, as Esther Rantzen has done for ChildLine and SilverLine)

The more dementia is talked about, shown on tv, or heard on radio, the more publicity that is given, the less strange or unknown it becomes. The higher the profile of the persons doing to PR or interviews etc the more they get listened to. Tis the way of the world.

A few weeks ago, a question about the Carers' Allowance" was raised on Radio 4's Any Questions, and the presenter and the team were amazed that any government offers this help at the rate of about £2 per hour!

More publicity: yes, yes, yes!

👍 👍👍

 

[Anil]

Hi everyone,

Our Media team would like to know if you think that seeing high-profile people talking about dementia helps to increase awareness and understanding.

We regularly see well-known people talking about dementia in the press. This year, for example, we've heard about Fiona Phillips and Julie Goodyear sharing news of their diagnosis, while others like John Lydon have shared how it feels to be the partner of someone with dementia.

The team want to hear how you feel about celebrities opening up about dementia in the media, and what impact - if any - you think it has. Does it help to increase understanding, bring dementia out of the shadows and break down stigma?

Absolutely helps us as carers that others are also going through the same issues and also raises the profile in the public mind

 

[HarrietD]

Thanks so much to you all for sharing your thoughts and opinions on this so far. It's so valuable to hear what you think of high-profile people sharing their experiences, and whether you think this has an impact on the wider public's understanding of dementia.

Please keep sharing any thoughts - this will be a huge help to our Media team

 

[jennifer1967]

i saw a new advert for alz. soc. on the tv friday or over the weekend. i think it was a dad and his daughter. i think it was another aspect of caring for someone. there was no guilt tripping and was truer to life and some of the difficulties.

 

[ged626red]

the ad was extremely hard for me but was absolutely the correct thing to do to get this message across to the general public and hopefully this govt will now start supporting the research for a cure for this terrible disease which robs so many people of their intellect and many other things

 

[HarrietD]

Thanks @jennifer1967 and @ged626red for sharing your thoughts on the latest advert - all really helpful feedback.