That's your opinion - it's not everyone's. Not every person living with dementia changes into a nasty person. My OH is still gentle and cheerful. He lives well with dementia, and I like to think I have done my bit to keep him happy.

 

I do rather wonder how our members with dementia would view your characterization. If there's anything I think we can all agree with about dementia is that it affects everyone differently.

I'm merging this thread with the existing one.

 

well your correct the TV adverts don’t show all sides Dementia however I agree with your comments how some people are effected and how their lives change , but not everyone with a diagnoses goes down hill, hundreds live very normal lives very little or No change in the condition for many many years with and would appear not to have the diagnoses at all , unfortunately talking or making a film of these patients
living normally don’t fit the raising awareness and I should know I was diagnosed with Alzheimer’s 16 years ago

 

I think the point that dementia affects everyone differently is very valid, and that ads like that certainly speak to the large number of people who can and do 'live well' with the condition. I am so glad, for the sake of those individuals and carers, that 'living well' is possible for them. I wish, with all my heart, that it was possible for everyone

But - it isn't. So where is the 'awareness raising' that tells people that there is another side to the coin? Why is the 'not living well' being ignored? How is showing only that some people can and do 'live well' going to help all those that don't?

I get Kevin's point about 'compassion fatigue' - its an area I researched a little for my dissertation when I covered the use of controversial images in the media, advertising and art - and horrific, in your face, warts and all type imagery will make a large number of people simply switch off. But you can be honest without being 'horrific' and thats what's needed.

How about starting an ad with a black screen, where the words 'Dementia can be more than just memory loss' are voiced over as the same message appears in type. Fade in a persons face and have different voices of 'carers' come in - "My Dad used have what they call 'sundowning' - every night, for a couple of hours, he would pace and cry and want to go home - even though he had lived in the same house for 50 years" - the face on the screen could reflect the distress. Then fade in another face, looking angry "My Mum didn't believe she had dementia and got so angry when we tried to help her". Fade in another face, looking scared and something like "People I know who hadn't experienced dementia thought my husband having it meant he was just forgetful - they didn't see how frightened he could get". There are any number of issues that could be covered, using just a face to reflect the emotions/feelings and a brief comment from a 'carer' - it wouldn't be explicit, but it would get people realising that there is so much more to the illness than just feeling a bit isolated, or being just a bit forgetful or confused. End the ad with the black screen, the 'Dementia can be more than just memory loss' again and add information about where the viewer can make a donation/find out more.

Something like that would I think be more effective than the total sweeping under the carpet of the less well known and difficult issues, without causing people to switch off.

 

I think that sounds good as it wouldn't put people off but still raise awareness and show different aspects. I'd hate for someone violent or nasty to be shown because the general public would associate that with dementia as a whole and I'd always have to say: but he isn't like that!

 

The advert made me angry. I think it perpetuates the myth that dementia just makes the sufferer a bit quiet and forgetful.

If I was, say, newly diagnosed with dementia, this advert is just what I'd want to see. Reassurance that there is help available, and life doesn't end here.

But as a carer, it's really unhelpful. If this is all dementia is, why can't my mum live at home with us? Why do carers need help?

The society is there to support sufferers - the "and their carers" seems to come very firmly second. Maybe if a carer's association made an advert we'd see a more realistic portrayal of what carers struggle with, and how awful dementia can be.

 

I agree the ad is one sided. It just shows a gentle side to this awful disease which is not the case. One only has to read most of the posts on this forum to get a glimpse of the devastation and horror of it all. I believe if people were more aware of this more would be done. For instance i for one had absolutely no idea how awful Alzheimer's was until i experienced it first hand with my MIL and i certainly would be non the wiser from the current advert. How can we get more support and funding for research if people are unaware of all the facts?

 

Isn't part of the problem (from the persepective of the person making the ad) that people who may get/already have dementia will be viewing too, and that it could thus prove terrifying beyond measure? It's not like cancer, for example, which can often be cured with early enough intervention. My mother is still in the very early stages, but is aware that she has dementia - I often find myself shielding her from the brutal realities of what her future may offer, and I can't imagine how upset she would be to see an advert showing a distressed sufferer.

I am in no way advocating trying to sweep anything under the carpet, but I think an ad based around giving information on support for carers might be the way to go, rather than one forcing fairly brutal truths on an audience. I think the initial ad could work well as an introduction to a longer series of ads, maybe? Maybe ads that made sense as part of a series, rather than on their own? It's a very difficult one!

 

I appreciate that there are concerns about sufferers being frightened by ads that are too graphic - but I still think that there could be a better balance shown. Otherwise, you are merely perpertrating the myths that currently surround the illness, NOT raising awareness.

Without the awareness, carers and sufferers alike will continue to encounter well meaning medical and other professionals who don't have a clue and who will inadvertantly make life harder by their mis-handling and lack of knowledge - just read the number of posts where this is an issue on these forums.

Without awareness, carers and sufferers will continue to suffer isolation as their friends/aquaintences/workmates who have absolutely no idea what exactly they are going through fail to understand and offer support - again, read the posts on the forums - its something else that's mentioned, a lot.

Without awareness newly diagnosed and their carers have no idea where to turn to for support, or how to access help. How many on the forums said that they were given the diagnosis - and then nothing? No idea where to turn and what to expect - and how frustrating and frightening that is.

Without awareness, its easy for those who hold the purse strings to continue to underfund dementia care and research.

Raising awareness is an issue that needs to be addressed - but for goodness sake, it has to be done properly and honestly - sugar coating and telling only half the facts is as detrimental and useless as going too far the other way

 

Ann Mac, you are obviously a wordsmith, and you continue to write with such care, compassion and honesty - in your writing about your MiL, I can see the love shining through. I know it has been previously mooted that you consider writing for a wider audience, and I wondered if you had come across Standard Issue online magazine? I read this article Who Cares? (not dementia related), and wondered if there might be a place for a similarish article written from the perspective of someone such as yourself. (I am not affiliated with the magazine in any way).

 

AnnMac, thank you for your knowledge and eloquence being so well shared. Thank you. Just wondered if within your format the unpredictability could be included. The great variance in states that can be encountered eg don't write someone off because you saw them during a bad moment eg sun downing. Further the effect that weariness, infection, constipation, fear, unknown etc can have on the Patient. Even the weather! Emotional memories kept for longer.
Would a campaign comprising of a series of short information films eg after the news (radio and TV, cinemas) like election broadcasts hit a wider audience. Not everyone watches adverts. Just a thought.
Really feel the wider population / organisations need SO much education for all stages of the illness.
Regular reinforcement needed that everyone experiences different symptoms according to which part of brain is affected, but that what is portrayed could happen to any patient.

 

I do love Mil, GarageDragon (not sure that always comes across, though!) and yes, I have batted about the idea of writing 'something' - just not sure if it would be worth reading, lol! I'll have a look at the link you posted - thank you for that

Thanks Oxy - but the only person with dementia I am maybe knowledgeable about is Mil - when I read the posts over the rest of the forum, I often feel that I don't know the half (or even quarter) of what people face. I do agree, 100% that the varience of how this illness can impact, sometimes from hour to hour or even minute to minute, is something that needs to be shown - again, a carer's voiceover saying 'I could never be sure how Mum would react - dementia meant her emotions were all over the place. One minute she could be quite happily chatting, then suddenly she could get cross and agitated, with no warning - then back to calm again' - and again, the face going from calm and smiling, through to anger and back. A carers voice saying 'I didn't know how so many things could impact on my dad's dementia - a chest infection, or any illness really, could make his confusion so much worse'. A carers voice saying 'It took me a while to realise that while my husband might not remember why he had been upset, the feeling of being upset could stay with him for hours'.

I think it would only take one or two short sentences on each instance/potential issue, to give people viewing more of an idea, and to maybe get them thinking. Nothing spoken or shown needs be graphic in detail - just enough to let viewers know that the issues actually exist.

Short information films shown after or as part of regional news programmes would be great - but the benefit of ads is that they are short enough that viewers may well just let them run, rather than reach for the remote to turn over. Running both, at the same time, would be the best option, add in radio ads featuring just the words spoken, and magazine ads with the 'Dementia can be more than just memory loss' as a header, featuring a still of one of the ad faces and the printed accompanying carers words, and details for donation/info contact at the bottom, and you have full coverage where the same messages /information are repeated - and the more they are repeated, the better chance that the awareness sinks in, I guess.

 

I’m sorry but I think were gone to far raising awareness now it only make life more difficult for those living a normal life with a dementia diagnoses the stigma around dementia today with all the adverts and TV programs which only show people with dementia either living in care homes or being looked after by careers why don’t we see those with dementia going on holidays , playing golf, or bowles like me still driving , and sometimes working all on their own because I have had dementia for 16 years and meet other people with dementia older than myself but all still living active very normal lives may not good media coverage though believe me their is as brighter side to dementia

 

Well said Tony, wanted to respond to your post further up this thread, but couldn't get on line. When I first saw this advert I viewed it as a carer and thought it was too soft, but now each time I see it I change my views and I did notice a few weeks ago that the length of the advert changes i.e some cutting and then some additions that were not in the first screening, which is all normal for tv advertising. For me this is now all about fund raising. Alzheimers Research Uk advert had far more impact on me.

 

Still disagree with thinking the advert is good im afraid. There may be a brighter side to dementia but we personally didnt see any of it for over 7 long years, and unless you have lived it that advert doesnt even give a tiny insight into what its like. I believe you are only seeing different aspects of it Tin because you have experience of what its really like - joe public wont. We need more people to know and know just how many people are going through a living hell- only then will we get more funds for research to beat this horrible horrible disease .

 

Watch videos showing people living with their dementia

Dementia Engagement & Empowerment Project (DEEP)

Can groups provide a stronger collective voice for people with dementia?
A growing number of people with dementia in the UK are becoming actively involved in groups to try to influence services and policies affecting people with dementia. The Dementia Engagement & Empowerment Project (DEEP) was a one-year investigation aiming to highlight groups and projects involving people with dementia. The report offers specific ways forward for organisations wishing to engage with people with dementia. This report found that:
• There are only a small number of groups led by, or actively involving, people with dementia that are influencing services and policies.
• 'Influencing' work includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising, and speaking at events.
• Most groups undertook influencing work alongside peer support and social activities, and were local and relatively informal.

 

AnneM, you are so right that a multi pronged approach is required. Your ideas for translating dementia symptoms into reality for an advert/info screening appear very good to me. Quite frankly they should have employed you for this!
You can't possibly and would hope not to experience all aspects of dementia. A virtual whiteboard with issues by members followed by your able 'translation' would be best but I'm sure you would in reality not have the time.
Clearly I understand that Tony is concerned. At end of each screening adding 'but remember this is a symptom that may not be experienced by all and indeed some people with a diagnosis can have many productive years ahead. Every case differs'
I would hate anyone to be stigmatised by any dementia diagnosis and at the same time the world out there needs to know what many do experience.
The diverse nature of this illness is probably what makes it so difficult and indeed the fact that so many dementias exist on top of it but clearly from posts there are many many commonalities.