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

[HarrietD]

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?

 

[Neveradullday!]

Hi @HarrietD
I think it does all those things you mention. Also, it shows that this disease doesn't discriminate (if anyone was in any doubt).

It's particularly helpful when carers such as John Lydon (and Barbara Windsor's husband, I remember, too) can give their accounts of what they and their loved ones go through.

When I first started on this 'journey', before I discovered TP - hearing a couple of celebs describe their experience helped. Nowhere near as good as this forum, though.

 

[SAP]

I do think it is a positive thing , not just for the general public to gain an understanding but also for people with dementia to see someone they know going through a similar thing. To see people with early diagnosis being able to do most things with some support can only be a positive thing when faced with a diagnosis. We have just seen Alistair Stewart do this today ( a bit unrealistic but important to see nonetheless)
These is still an element of hiding dementia away, it’s embarrassing, granny has gone a bit cuckoo kind of thing and this needs to be removed as there are more people getting diagnosed in our growing elderly population.
Scott Mitchell spoke about having to care for Barbara Windsor and acknowledged that they had the funds to do this and other people had to battle to get some support for themselves and their loved ones. These kind of comments are also very important , we need to highlight the discrepancy between being able to afford care and being at the mercy of social care. And what Scott did was to explain how hard he found it with the finances to hand and how hard it is for other carers he had spoken with.

 

[jennifer1967]

can only be a good thing. i remember peter suchet wife had dementia and he highlighted the work the admiral nurses do. it breaks down the stereotype of a sweet old lady in her rocking chair. like terry pratchett shows even when you stimulate the brain it can still develop. the only negative is that it is seen as a sensational headline when a celebrity announces they have dementia. at least they start the conversation around dementia which should be opened up to general discussion higher profile in general

 

[Dave63]

Yes, without question.

But.... it's as if nothing is an issue unless it's been validated by a celeb. Funny ole world.

 

[Palerider]

I think high profile people talking about dementia acts as an ice breaker for many people who may fear talking about it for various reasons and also positions dementia more centre stage, perhaps even helps to dispel some myths.

 

[canary]

I think it can only be a positive thing. It draws the attention to the disease and reduces the stigma preventing it from becoming a thing that only nameless, easily ignored, people get

 

[Scarlet Lady]

I agree with all comments, it’s good that celebrities highlight the issues they’re facing. I think everyone would applaud the commitment that Scott Mitchell, Timothy West and John Lydon (to name just a few) have shown to their spouses. But although it’s been acknowledged that care outside of the home has eventually been needed in many cases, these ‘celebs’ are usually in a much more fortunate financial position than the rest of us and this goes a long way in helping them cope with their situation.
So while not wishing to take anything away from them, I wonder how useful their experiences are to those who can’t even get a Social Worker or GP appointment? It certainly doesn’t seem to be a wake up call to any of our lazy incompetent politicians.

 

[Grannie G]

I agree too.

It continually brings dementia to the public attention and the celebrities who do this do so without embarrassment which I feel is a big positive.

 

[Pacucho]

I consider it helps overall, but there is an issue which does result in confusion where high profile people are seen to be indicative of everyone affected by dementia.

For example, I had a family carer supporting his wife and he couldn't understand why some people diagnosed with dementia - in the media spotlight - could speak so eloquently unlike his wife. I obviously explained to him many reasons why, including the fact that the majority of people diagnosed with dementia are not diagnosed early (which is one of the key factors).

I consider when using such example in the media much greater thought must be given to the overall message, to ensure such confusion that may arise is limited. At present the evidence indicates none of this happens, and it is left to people such as me to deal with such issues when they arise which is common.

Please do not put people diagnosed with early onset dementia in the spotlight, as indicative of everyone affected by dementia. It is much more complex, and can cause some harm.

 

[Lawson58]

I think the documentary by Louis Theroux which was in USA was very revealing about how different people with dementia are and how they are cared for, was most informative.

I am not into the Celebrity thing and half the time I wouldn’t have a clue who they even are. However, there is one woman here who has held some very remarkable positions who has been a true advocate for PWD as her father was a sufferer. This lady was the editor of a very popular women’s magazine, did some TV panel shows and is now CEO of the Australian Broadcasting Corp. She doesn’t think of herself as a celebrity but has been such a hardworking ambassador for dementia over many years. She has spoken at the National Press Club on more than one occasion and travelled the country speaking to various community groups, aged care businesses and more.

People like her can get the message across because she has been consistently addressing the subject for a long time and people listen to her. That’s the way to get the message across.

 

[Veritas]

I don't think it makes much difference to those not already 'in the game'. I find it helpful to hear from people like Timothy West and Neil Kinnock - for example that they find it (being the spouse of someone with dementia) as lonely a business as I do - but I really don't think what they say means anything much to the majority who are not directly affected. After all do people generally pay much attention to yet another celeb talking about their breast cancer or MND or whatever? I certainly didn't, and don't.

Until government (of whatever political persuasion, they've all been guilty of hoping the problem will go away) faces up to its responsibility, recognises that the social care system - especially for people with dementia - in this country is utterly broken and deeply inequitable, and starts to take meaningful action to deal with the underlying issues, we and the people we care for will be mostly abandoned to our fates. Awareness raising has its place, but it doesn't deal with these serious and worsening infrastructural problems, and I think organisations like the AS need to prioritise putting huge, unrelenting pressure on government to get on with dealing with it.

And don't get me started on this 'living well with dementia' fantasy....

 

[Violet Jane]

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.

 

[Chizz]

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!

 

[Lawson58]

I think it’s hard for most of us to relate to celebrities talking about how their lives have changed because they all have enough money to be able to afford appropriate care and to be able to provide anything that is needed. And does that money word ring any bells?

I understand that they are sad and grieving for what is happening with their loved one but I simply don’t feel that they are otherwise particularly relevant to my circumstances. Yes, the publicity is great but tends not to be sustained and if anything is going to change, it needs a champion who is going to drive an awareness campaign over a long period of time.

Our dementia organisation here does some great work in providing information and as I have never used their devices, I cannot comment on that. I suspect that similar organisations in other countries are probably a bit the same. But awareness campaigns? Hmmmmmm!

And television advertising has to be directed towards the next generation, those who are going to be the ones bearing the brunt of solving the problems of an aging population.

 

[jennifer1967]

it seems a bit disconnected

 

[Leva]

I'm not entirely sure. I thought Ed Balls was great when he did those programmes re his Grandma's care home but , for me, the problem is that people don't get a real idea of how incredibly hard careworkes work and for how little money and how little interest the governments take in all the ramifications of care. I've written several times to all the media but they just aren't interested. My husband's care is £1200 a week and there seems to be no help at all with funding. I worked until I was 78, admittedly in an academic job so not taxing physically, and only ceased to work to look after my husband who could no longer cope on his own. He too worked so we paid NI and taxes in full but I'm sure most people aren't aware of these difficulties being faced by so many people today. Hearing that a celebrity has dementia is a momentary news item without follow up. I suppose it's better than not mentioning it but...?

 

[phreeda]

I wonder if these 'celebrities' have to fight to see a doctor, have to stay awake all night while their loved one is wandering around the house, have to shower and change them several times a day, have to beg for help which is not forthcoming, or become desperate for 'normal' conversation and company, not to mention the extra expense on washing, cleaning electricity etc that caring for someone incurs.
Dementia cannot be glamorised by people with the money to pay for help while the rest of us give up the rest of our lives to help our loved ones.
By all means bring the problem to the fore - but please be realistic!

 

[sjs61]

I don't think it makes much difference to those not already 'in the game'. I find it helpful to hear from people like Timothy West and Neil Kinnock - for example that they find it (being the spouse of someone with dementia) as lonely a business as I do - but I really don't think what they say means anything much to the majority who are not directly affected. After all do people generally pay much attention to yet another celeb talking about their breast cancer or MND or whatever? I certainly didn't, and don't.

Until government (of whatever political persuasion, they've all been guilty of hoping the problem will go away) faces up to its responsibility, recognises that the social care system - especially for people with dementia - in this country is utterly broken and deeply inequitable, and starts to take meaningful action to deal with the underlying issues, we and the people we care for will be mostly abandoned to our fates. Awareness raising has its place, but it doesn't deal with these serious and worsening infrastructural problems, and I think organisations like the AS need to prioritise putting huge, unrelenting pressure on government to get on with dealing with it.

And don't get me started on this 'living well with dementia' fantasy....

Totally agree with Veritas. We hear of so many celebreties talking about their 'struggle' I'm not sure many people are interested anymore. Besides, I don't get time to watch TV or read a newspaper or magazine! Most celebs can pay for the very best of care - it would be good to have on TV someone about to have to sell the home to pay for care or someone who is totally reliant on Social Services. It took over a year for me to get a referral to the community dentist to look at my husband's teeth. My husband's hernia was ignored in 2015 - it is now so large and painful but no one will operate - I'm sure the NHS just thought he would die soon so let's not bother. I've just had an horrendous week trying to get a smaller hoist to move my husband - how can a company get it wrong so many times! and when it was finally delivered it didn't work! Not to mention that awful period they all seem to go through - knowing exactly what is going to happen to them and being so frustrated and hitting out at people. How many people on this forum have been told that all their loved ones needs are social needs - despite the fact that my husband can do absolutely nothing for himself.
Let's see the real world for an unpaid carer looking after a loved one with dementia. And as for that new TV ad - how about showing the husband refusing to eat, incontinent and the wife having to clean him or asking the same question over and over again to give everyone some idea of what it is like living and caring for someone with dementia.

 

[Josh60]

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?

I think that high profile people does make a difference but all the high profile people are in a position to be able to care to pay for the extortionate costs of care far better that most people, that's what needs to be addressed as well as the medication issue and the general care of people with Dementia/ Alzheimers.