The Long Goodbye: our new advertising campaign

[luggy]

I have been reading these comments with a growing sense of despair.

Yesterday I watched Stand up 4 Cancer and during this was a video interviewing a man whose wife died from cancer 4 weeks after their wedding. The pictures showed on their wedding day and then another one taken in hospital showing her with drips and tubes and things. It couldnt have got more graphic. If something like that had been shown about dementia there would have been huge uproar on here, yet there has hardly been a peep in the cancer community.

It seems to me that the outrage of depicting the realities of dementia has all come from within the dementia community. People around us are indeed sympathetic and I think would be open to being told about dementia, but we dont want to tell them what it is really like. It feels like a huge family secret where no one must talk about it, no-one must tell anyone about it, there must be no mention of anything to do with it and it must all be swept under the carpet.

@canary spot on! There is a huge stigma associated with dementia and it comes from within the dementia community itself. My mum has had Alzheimers for nearly 20 years and neither my mum or my dad would ever admit to anyone outside the close family circle of the 2 of them, myself and my brother, that mum had it.

This was a real and frustrating barrier for myself when it came to trying to arrange the necessary care and support which they both desperately needed. It took me 11 years to persuade them to get mum properly diagnosed - and this was only achieved because I went with them after they failed to turn up for a previous appointment a couple of years earlier (I subsequently found out).

 

[maggie6445]

Please can there be a campaign for 15 hours of free dementia day care. It's there for children and benefits society. It will reduce isolation and loneliness, improve provision of day care around the country and make a difference to carers. Surely there must be people on this forum and charities who can lobby politicians to make the case.
If politicians read a bit of this forum, the grief and devastation of dementia is starkly evident in almost every post.

Definitely would support this .

 

[nitram]

Please can there be a campaign for 15 hours of free dementia day care.

Fifteen years ago my wife had 3 days a week at an LA run day centre in a purpose built building, attendance free after needs assessment, lunch everybody paid, transport if required means tested.

In the ensuing years the LA have turned social services into a LATCO (no need to join if requested, just dismiss), the building is no longer use with a small suite at a different centre being given its name , and everything is means tested with a self funding rate of ~£80/day

Not much chance of success for campaign here.

 

[lollyc]

Mmm not quite sure about that. A few years ago people were saying they would pay more to have fully funded NHS and care. The problem is that successive government have raided the money. If it were ring fenced in law and cross party policy then it might be accepted.

I think people were happy for money to go to the NHS (who in my opinion should not be allowed anywhere near any money, as they are incapable of spending wisely - but that's a whole different argument), but were not happy for that money to be used for social care. I saw / heard several interviews ,mainly with younger people, who felt that the wealthy, elderly home owners should pay for their care.

Today I asked my 3 work colleagues (no dementia experience) what they thought of the new AS ad, given the division it has caused here. Not one had seen it. I then had a further discussion with one colleague, who has worked in the health sector for more than 20 years. She believed that Alzheimer's and dementia were the same thing, and had no idea that there were different types of dementia. And in fairness, why should she know any different? All I can say is whatever AS is doing to increase the profile of dementia, it ain't working.

 

[Anthoula]

The advert/message regarding dementia should be more like the cancer campaign - "Give us your money so we can fund necessary research and find a cure"! The AS advert/message just says that those with dementia are going to die. Sorry, it fails miserably.

 

[John8501]

The Long Goodbye
Raising the awareness of dementia in the general public is a worthy goal but I would take issue with the wording and emphasis of this video.

During seven years of caring, I have witnessed the same heart-breaking progress of the disease but I have never once felt that my mum had ‘died’ each time a memory or an ability was lost. I can still cherish the recognisable parts of mum that remain precisely because she hasn’t died; all the while knowing that mum is slowly being taken away from me. It’s a very important distinction to make, rather than the blunt comments made in the video that attempt to say the same thing.

The video highlights some of the effects of the disease in the person with dementia and the upset that those effects then cause to their loved-ones; however, it fails to mention the years of emotional anguish, stress and suffering it also causes to carers – something that might actually have been informative to the general public. Finally, I have concerns about what effect the video’s emphasis on ‘dying again and again and again’ will have when viewed by a person with dementia.

In its desire to be hard-hitting, the video completely misses the opportunity to present a full and accurate account of the effects of dementia on all the affected parties. I have no issue with hard-hitting videos - I actually feel that this one is limited in scope – it’s just that this video only portrays the son’s feelings of his mum’s memory loss rather than including the associated loss of ability that causes the very difficult health, social and hygiene issues in the person with dementia that carers then have to deal with. Carers know this, but I doubt the general public does.

 

[RaeC]

This advert is so distressing for my mum with early stage dementia, her husband and family to watch when it comes on TV. Appreciate it is hard hitting to raise awareness but this has just added to the pain and suffering of those living with this nightmare that are still able to understand what the ad is saying. I actually cannot believe anyone would think this is ok.😢

 

[Hartwick]

Yes, it a powerful message, because all full times carers know the situation, but don't want to think too much about the future.
Yes it's sad, but dementia is appalling.
It's a useful tool to try and explain, without the nasty side being shown.

No advert can really get across to someone who isn't a full time emotional investor in the family suffering on a daily basis what is the reality of the pain, hurt, helplessness, the everyday reminder through things like non-recognition, incontinence, etc etc.

When a diagnosis is given the doctor and/or nurse never say that the PWD has a terminal illness and I think they should say this to the family, but not necessarily to the PWD who is in shock (as well may be the family too).

Too many people do not fully understand the illness, the living hell that awaits. Nearly all the info and adverts never seem to be that bad. They lie, and mention living well with dementia. Dementia eats the sufferer and the family bit by bit - there is NO living well with a terminal illness, just an attitude to help the acceptability.

Unfortunately for me, I thought too much about it. I had to have counselling for anticipatory grief. It helped a bit, but doesn't take away the knowing what's going to happen. You can never un-know it.

 

[Hartwick]

It is so true they do die a little every day reminded me so much of mum who has vascular dementia and was so full of life up until May 2023 its happened so quickly. Its such a cruel condition for our loved ones and their families. I just look at mum and wish her to go to sleep as I know that is what she always wanted.Trying to stay positive can be hard as you know what is coming over the hill .

 

[Violet Jane]

I just don't know what these adverts should be trying to show. I watched a cancer advert last night. A man was running past some ill looking people receiving treatment but at the end of his run he was greeted by an older man who I assume was his father who had recovered from cancer. There was a message of hope: you can recover from cancer and your money can help us find better treatments. What message of hope can dementia adverts give? And should the adverts be trying to raise money for research into treatments or trying to raise money to provide more support for carers? It's harder to do the latter as people don't realise what a toll caring takes and, of course, the carers are not the ones who are ill.

I don't like this latest advert but I don't think that you can avoid causing distress to people with dementia unless the adverts give a misleadingly rosy picture of what dementia is like; if dementia is not that bad then why does it need more money? Dementia is a terminal illness like many other illnesses. I recollect that the recent heart disease advert was pretty hard-hitting, showing people dying. Did people with heart disease complain about that?

 

[Violet Jane]

@Chizz, I was told by my mother's consultant that dementia is a terminal illness but I don't know whether he would have told me this if I hadn't asked about life expectancy. I think that people (PWD and carer) should be told, just as they are told about other terminal diagnoses. That way, people can put their affairs in order and make the most of their remaining years, ensuring that they do things in the early stages before they become impossible. In the months after my mother's diagnosis I took my mother to her home country and to Scotland, a place she had always enjoyed visiting. These trips were quite stressful but worthwhile. Two years later they would have been impossible.

 

[Chizz]

@Chizz, I was told by my mother's consultant that dementia is a terminal illness but I don't know whether he would have told me this if I hadn't asked about life expectancy. I think that people (PWD and carer) should be told, just as they are told about other terminal diagnoses. That way, people can put their affairs in order and make the most of their remaining years, ensuring that they do things in the early stages before they become impossible. In the months after my mother's diagnosis I took my mother to her home country and to Scotland, a place she had always enjoyed visiting. These trips were quite stressful but worthwhile. Two years later they would have been impossible.

Well done @Violet Jane
Everyone has to do as much as they can for as long as they can.
That phase for a PWD will pass. Yes, we're well past ever going out again.

 

[maisiecat]

I don't mind the reality of PWD being shown but I would like it attached to a more aggressive campaign about the lack of help.
My mother had vascular dementia from 1999-2008 although things weren't ideal there were proper day centres staffed by mental health staff. There was transport that you didn't have to beg for. The price of care homes bore some relationship to income and there was better funding. Now dementia is viewed as a social issue and the price of my husband's nursing home each week is more than the 2 of us combined have ever earned.
The irony is that those of us who pay taxes are paying for free childcare for parents and still having to pay for every thing our loved ones need.
Thats where I would like a campaign to focus

 

[annieka 56]

Hi everyone,

Alzheimer's Society will be launching a powerful new advertising campaign on Friday 22nd March aimed at raising awareness of both dementia and Alzheimer’s Society amongst the general public.

There will be an exclusive first look at the advert tomorrow morning, during Good Morning Britain.

One in three of us born in the UK today will develop dementia in our lifetime. It’s the biggest health and social care challenge we face, but we know awareness of and concern about dementia amongst the general public are low.

Research shows that:

• 22% believe that dementia is likely to affect them or a loved one
• 20% of people are confident that they understand what dementia is
• Only 37% believe that urgent action is needed to support people with dementia.

These stats mean that it’s not the priority it deserves or needs to be, which is why it’s so important we run these emotive campaigns that also highlight the help and hope we provide.

This advertising campaign will be aimed at the wider general public who might not know much, if anything, about dementia. It reflects the devastating reality of dementia that we hear about so often at Alzheimer’s Society and on this community. We know that one advert can't represent every single carer's reality, but we hope that you can see your experience reflected somewhere. Really importantly, we hope it also shows how we are there for you again and again and again.

The advert will also run on TV (on ITV, Channel 4 and Sky), radio (including Smooth, Boom Radio and Greatest Hits), cinema (in chains including Odeon, Cineworld, Picturehouse and Empire), podcasts and paid social media, as well as on our Alzheimer’s Society website and social media channels.

Content warning: if you're going through a difficult time at the moment, this film is hard-hitting and it may not be the right time for you to watch it. If this is the case for you, please feel free not to check back.

If you'd like to watch the film, we'll be sharing this as soon as possible once it's live, and we'll then open this thread for you to share your thoughts and opinions.

 

[annieka 56]

I agree with you. Personally I don't like the advert. It is inaccurate in that in that the person with Dementia that "dies over and over", it's a part of them, again and again, and yes, a part of me each time. My experience is that I get flashes of the past where she remembers things, and flashes of the future where a little set back shows me what the future will hold. Currently I am spending an amount of money that would purchase a modest home, to try to make our home fit the future needs of my wife. I am looking to ways of our house remaining her home and being thwarted at every turn by the "professionals" Who say things like, we would not support that idea, or we don't think that is a suitable solution, We think it best that Your wife use the down stairs bedroom and loo, we could support a conversion to the loo. My opinion is the OT is wrong, very wrong and her plan is impossible to execute. Moving her to another bed room flies in the face of the sufferers needs. The bedroom they want to ban her from has been our room for over 20 years. We have had to use the guest room during the conversions and every night as traumatic for her "where am I" "I don't know what to do" "Where am I going" Why are these professionals so ignorant of the needs of our loved ones? Ignorant of trying to keep things as "the same" as possible? I am going along with the move to have a specialist trade company look at the feasibility of their plan, before I slam dunk the OT driving it. DUring her visit.... the answer was "No", "now what's the question". Why is everything so difficult and time consuming, when we carers have very little spare time as it is? I don't think the Ad' covers any of this, and doesn't really represent any typical Journey, if there is such a thing, through living with Dementia (both of us). My experience is that it is a fight, every day, to try to keep my wife's life as normal as possible. Continually adapting to today's issues, and trying to get the people paid to assist to understand, and not drive their own opinions home.

 

[annieka 56]

I'm sure the advert may influence the 82% of people surveyed who don't think dementia will affect them. But to do what, I'm not sure. Make a donation? Be more aware? Love their family members more? I doubt they will campaign.
Like you in some ways I am going through carers hell - my husband has been basically upstairs for 5 months after a second bad fall backwards while going upstairs. Not a trip or a slip, just freezing and falling backwards...
OT advice next day - make a micro bedroom (!) for him downstairs so there are no stair risks.
He will feel more involved in family !ife and can access the garden. (There is no toilet downstairs or bathroom downstairs.) He can have a commode downstairs...He can be washed with bowls of water. Carers can do this if I can't. (Family life takes on a different perspective entirely doesn't it? With 4x daily carers, a commode, and me running up and downstairs like a bat out of hell.)
Meanwhile he's back upstairs in his/our familiar bedroom in a single bed while I sleep on a sofa bed. This ensures he actually sleeps at night and feels comforted when he wakes up.
(He had a respite placement in February which was wonderful in some ways - staff were lovely - but he didn't sleep at night, they could not repeatedly pick him up off the floor when he got out of bed so he napped half the day in a chair in the lounge ....)
I'm now having to get equity release to make adaptations to keep him at home and as you say, whi!e dealing with day to day stuff, it's very difficult.

 

[annieka 56]

I'm sure the advert may influence the 82% of people surveyed who don't think dementia will affect them. But to do what, I'm not sure. Make a donation? Be more aware? Love their family members more? I doubt they will campaign.
Like you in some ways I am going through carers hell - my husband has been basically upstairs for 5 months after a second bad fall backwards while going upstairs. Not a trip or a slip, just freezing and falling backwards...
OT advice next day - make a micro bedroom (!) for him downstairs so there are no stair risks.
He will feel more involved in family !ife and can access the garden. (There is no toilet downstairs or bathroom downstairs.) He can have a commode downstairs...He can be washed with bowls of water. Carers can do this if I can't. (Family life takes on a different perspective entirely doesn't it? With 4x daily carers, a commode, and me running up and downstairs like a bat out of hell.)
Meanwhile he's back upstairs in his/our familiar bedroom in a single bed while I sleep on a sofa bed. This ensures he actually sleeps at night and feels comforted when he wakes up.
(He had a respite placement in February which was wonderful in some ways - staff were lovely - but he didn't sleep at night, they could not repeatedly pick him up off the floor when he got out of bed so he napped half the day in a chair in the lounge ....)
I'm now having to get equity release to make adaptations to keep him at home and as you say, whi!e dealing with day to day stuff, it's very difficult.

 

[Kevinl]

Well said to the lady above, says it all. K

 

[Hels05]

Hello to everyone! My lovely Mum (aged 78) was diagnosed with dementia last year, and, thankfully, she's currently been doing well on medication and with huge family support. That said, since she has seen the most recent TV advert "the long goodbye" she has gone downhill rapidly; to the point that she's seriously contemplating suicide. I appreciate fully the need for awareness of dementia; however, you should be aware of the impact these tv ads have on sufferers of the disease. My mother trying to drown herself so that she "isn't a burden" is horrific to say the least. We have now decided everything she watches on TV must be pre-recorded, so that she never sees this again. Surely there are better ways of raising awareness? I'm almost certain our family isn't the only one dealing with this horrible issue? Please re-think !

 

[Chizz]

I'm sure the advert may influence the 82% of people surveyed who don't think dementia will affect them. But to do what, I'm not sure. Make a donation? Be more aware? Love their family members more? I doubt they will campaign.
Like you in some ways I am going through carers hell - my husband has been basically upstairs for 5 months after a second bad fall backwards while going upstairs. Not a trip or a slip, just freezing and falling backwards...
OT advice next day - make a micro bedroom (!) for him downstairs so there are no stair risks.
He will feel more involved in family !ife and can access the garden. (There is no toilet downstairs or bathroom downstairs.) He can have a commode downstairs...He can be washed with bowls of water. Carers can do this if I can't. (Family life takes on a different perspective entirely doesn't it? With 4x daily carers, a commode, and me running up and downstairs like a bat out of hell.)
Meanwhile he's back upstairs in his/our familiar bedroom in a single bed while I sleep on a sofa bed. This ensures he actually sleeps at night and feels comforted when he wakes up.
(He had a respite placement in February which was wonderful in some ways - staff were lovely - but he didn't sleep at night, they could not repeatedly pick him up off the floor when he got out of bed so he napped half the day in a chair in the lounge ....)
I'm now having to get equity release to make adaptations to keep him at home and as you say, whi!e dealing with day to day stuff, it's very difficult.

Yes I know how it is @annieka 56 with my OH bedbound since July 22, but she is downstairs in what was our dining room. She no longer needs a bathroom or toilet as she can't weight bear or get out of bed other than by a hoist into a chair in the lounge.
You are not the only one. I know that doesn't help you.
Lots of hugs to keep you going.
(I wish I could run up and down the stairs but arthritic knees slow me down somewhat. You'll have look upon the running up and down as therapy at your free home gym!)