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Cure the Care System: our new short film

Whisperer

Registered User
Mar 27, 2017
271
0
Southern England
Well slowly we are moving in the right direction. Remember the advert under the Cameron government where a confused loveable gentleman could not remember where he had parked his car in a large car park. Well this one moves matters on somewhat, but as others have stated the PWD is very placid. The poor lighting does not to me convey a grim situation, it is just poor lighting.

I strongly recommend the advert reaches out to the audience more directly. If you think this will never happen to you think again. One in six people over 80yo will develop Dementia. Remember they will need family caring support, so even at only one to one that gets us to one in three people at least impacted by Dementia at some point in their life. Then again we have not considered other illnesses like Parkinson’s, etc. Have a careful think. You can help to bring about the change so desperately needed. Even if you get lucky and Dementia does not enter your family life, surely we owe it to those less lucky to help. Caring for the most vulnerable elderly citizens in our society can be done.

I have to confess until mum developed Vascular Dementia I was ignorant of the illness. Not turning a blind eye but it had never effected anyone I knew. I feel some shame now at that level of ignorance. An advert with punch lines like the above would have caught my attention, certainly make me stop and think. Again try the same thing on politicians. As the care scandal drags on more and more voters get dragged into it. Carers have votes. Carers have long memories. Carers do care.

Just a thought.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,366
0
Yorkshire
some background of the actor's personal experience of dementia

 

Hazara8

Registered User
Apr 6, 2015
621
0
As mentioned above, here's the video. The actress herself, Kate Dickie, has personal experience of dementia and wanted to be part of telling this story.


---

What do you think?

We wanted to give you a space to share your thoughts on the film. Does it reflect your own experience? We'd like to hear what you think, and your honest feedback would be really valuable.
For the unitiated this short film will have some impact. For many who are committed to Care for a loved one it might seem perhaps mild in the light of actuality. By this l mean the sheer level of angst and despair which can come about when dementia presents with aggressive behaviour or paranoia and the fact that this stems from an "abstract" source - i.e. Alzheimer's - because you never know the actual derivative, what brings it about. (UTI or a noise, the colour of a sofa etc. There needs to be a raw and uninhibited representation of the "reality" which might seem almost beyond comprehension to those who ' imagine ' forgetfulness and awkward moments within the context of ' being managed ' come what may. Dementia is so varied and so unpredictable and different in every case. The torment and heartbreaking regime which can be the lot of a Carer ( at home) is very real and very destructive.
I think if you could capture a single minute in anybody's life in which they were amidst a bereavement and then say quite legitimately that this one minute of raw feeling and emotion and say "loss" represents what can be a continuous challenge for someone Caring for a loved one with dementia. It is that real and that profound .
I do not think that many in authority ( government) truly understand the nature of this disease. It changes lives and not only the life of the soul whom it inhabits.
 

Anon33

Registered User
Jul 28, 2019
36
0
This made me cry. A starting place in getting people to understand. I agree it could go further.
 

LynneMcV

Volunteer Moderator
May 9, 2012
4,083
0
south-east London
It is a powerful starting point and I related to the portrayed experience in many ways. However, I do feel that it falls short by not acknowledging that facing paranoia, agitation and aggression can contribute to a carer eventually becoming overwhelmed by the extreme level of care that they are often called upon to provide with little or no support. Not everyone experiences that, I know, but I feel it is a disservice not to acknowledge it for the many who do.
 
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nae sporran

Volunteer Host
Oct 29, 2014
7,799
0
Bristol
I mentioned this on a mental health mates chat earlier. So much respect there for carers which was rather sweet, and a little embarrassing. They accepted that most people don't understand OCD or Asperger's either unless they have lived with it.
This went some way to help break down barriers, but that is the challenge underlined.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
6,597
0
London
Thanks so much everyone for continuing to share your thoughts and insights.

Re: @kindred's question near the start of this thread about what we would like the reform to do, this post has some more information about the campaign which I hope is helpful: https://www.alzheimers.org.uk/news/...r-social-care-for-people-affected-by-dementia

Re: @DennyD's question about making the film, our Marketing team based it on the evidence of carers' experiences, who feel the impact of the broken social care system. Before launching, the team carefully tested the film with 214 people including people affected by dementia.

Like other charities, we've struggled for years to get social care and dementia the attention that they desperately need, and this is the start of bolder campaigning around this. We're hoping that the film will stand out and grab attention to reach as many people as possible, and highlight how important this is.
 

AbbyGee

Registered User
Nov 26, 2018
215
0
Portsmouth, South Coast
I've watched this several times. I wish I could still find tears, like the carer in the film, but I'm too washed out, dried up, tired, drained and dead inside to even cry anymore.
Yes, it's a nice intro but it reminds me a bit of the sad Spanish donkey films. I'd like to ask buddies to see it and give opinions but buddies are a rare find these days. At least buddies know my name.
***EDIT*** Having gone away for a few minutes I think I may sound a bit off here but Hell's Bell's ... is the public at large ready for the unpalatable truth that is caring for a once-loved almost zombie version of the PWD? Do they really want to know about the pee and poo and the endless questions, the pointless cooking of enticing meals that may as well be cardboard, the lack of sleep caused by being half awake all the perishing time, the loss of own self-worth, the virtually suicidal state of both, the walking on egg-shells, the mumbling stumbling shell of a human who needs support to even find the next room, the stressy nastiness that invades almost every response to the repeated half-formed questions?
 
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kindred

Registered User
Apr 8, 2018
2,674
0
I've watched this several times. I wish I could still find tears, like the carer in the film, but I'm too washed out, dried up, tired, drained and dead inside to even cry anymore.
Yes, it's a nice intro but it reminds me a bit of the sad Spanish donkey films. I'd like to ask buddies to see it and give opinions but buddies are a rare find these days. At least buddies know my name.
***EDIT*** Having gone away for a few minutes I think I may sound a bit off here but Hell's Bell's ... is the public at large ready for the unpalatable truth that is caring for a once-loved almost zombie version of the PWD? Do they really want to know about the pee and poo and the endless questions, the pointless cooking of enticing meals that may as well be cardboard, the lack of sleep caused by being half awake all the perishing time, the loss of own self-worth, the virtually suicidal state of both, the walking on egg-shells, the mumbling stumbling shell of a human who needs support to even find the next room, the stressy nastiness that invades almost every response to the repeated half-formed questions?
Abbygee I have been through this and it broke me. I am still suffering from the long term effects of it, of having to care for someone. Please consider a nursing home. This must not take your life too. With love Kindredx
 

AwayWithTheFairies

Registered User
Apr 21, 2021
141
0
I’m with you on that @AbbyGee, I’ve just been reading a good article but towards the end it instructs how to be positive and smiley. Well I can’t. I’m worried to death, I’m tired and I have unhappy feelings. I’m not that good at hiding them anyway and this is my mother and I am with her 24/7. I also feel bad that I just can’t lay on constant entertainment chat and activities for her, I am not a very good carer I guess! I have occasionally gone shopping for groceries briefly but this morning while I was at home on a zoom meeting (I’m also working from home full time) she took a phone call and then obediently went to get her handbag to give out her credit card number, which I have just changed, to the same scammy Charity. “The police” which cause the last change. I lost my rag a bit and said they don’t need any more of your money! And gave the guy on the phone an earful.

So I will be quietly cancelling the card, keeping the phone plugged out when I can’t get to it first, and not going out anywhere without her in future. It’s a blow because I thought she was improving and might holdsteady for a while without constant supervision. I told my cousin and then uncle (her only sibling) to please chat cheerfully with her and not keep asking her about moving to UK or her passport or the idiots who strummed off her flowers, so he complained to his wife and didn’t bother phoning her (she texted me as she disapproves of his attitude). My aunt keeps saying why didn’t mum pay attention when dad was alive so she wouldn’t be a victim of scammers, she isn’t recognising at all that although mum functioned fine for years, this is new. I feel very alone and that no one understands.
 

None the Wiser

Registered User
Feb 3, 2020
222
0
So many, many anquished cries for understanding, recognition of the reality of our situations and cries for help on this thread. So many people exhausted, bewildered, heartbroken and suffering. But nothing changes. Why are we unable to be heard? Where are our high profile champions? Where is the government ‘opposition’ and drive? Where is the blanket press coverage this week?
 

RosettaT

Registered User
Sep 9, 2018
572
0
Mid Lincs
I wrote to my MP last week saying how disappointed I was to hear only 9 words on Social Care in the Queens Speech and pointing out bringing forward the debate is a far cry from actually doing anything.
She responded by saying.....

'At the Spending Review in November 2020, local authorities were enabled to access over £1 billion of spending for social care, through £300 million of social care grant, and the ability to levy a three per cent adult social care precept. This is in addition to the £1 billion social care grant announced during 2019, and the £3 billion provided to local authorities to address COVID-19 pressures, including in adult social care. I know that this Government is committed to sustainable improvement of the adult social care system'.
She then went on to say money alone can not cure the problem there needs to be better ways of encouraging collaboration between health and care services, such as the Better Care Fund which assists local government and the NHS with the implementation of integrated services.

I do wonder where that money is going because very little of it appears to be getting to the coal face to support respite and companionship to enable carers time to themselves and thus help preventing carer breakdown.

In our situation my OH is self funding and for me even then it's the inflexibility of the system that causes problems.
We were going out today but OH is not well and has gone down with a cold he caught from a carer, so I've left him in bed, he just didn't want to wake up. If that cold lasts and I want day cover for him so I can go out the care company need 2 weeks notice.
 

Seaholly

Registered User
Oct 12, 2020
73
0
@RosettaT, I would dearly love there to be an independent review into the way our local authority is managed! Those figures are eye-watering. I know from the last few years that there is seemingly precious little join up or collaboration. Perhaps better deployment of resources and more accountability from local government is what we ought to be lobbying for?

It was sad reading all the propaganda that plopped into the porch recently concerning local elections because not one candidate even mentioned dementia.
 

nimby001

Registered User
Sep 16, 2020
11
0
Very Powerful and true, portrays the feeling of being forgotten and helpless by the 'Faceless System'. Agree with DennyD comments.
 

Andrew_McP

Registered User
Mar 2, 2016
272
0
South Northwest
Like many, I pre-record most TV these days, so don't watch many adverts. But having bumped into this campaign a couple of times now I had to log in to commend everyone involved in having the courage to portray part of the stark reality of dementia. For the first time I feel like a campaign is telling it like it is for many (most?) of us. I can see why some may consider is as potentially unhelpful as the 80's AIDs campaign (stigmatising and frightening) but where has the softly, softly approach got us?

The problem, as ever, with this condition, is that there's no cure and the only hope you have is that you or your family member's going to be in the (tiny?) minority whose dementia fades you away slowly and gently, leaving your dignity and intellect intact for as long as possible. So whereas it's possible to engage positively with a cancer campaign -- where there's hope in many, many cases and occasional medical miracles -- getting the general public to engage with something so depressing is hard. Far easier for them to just dismiss 'that gloomy ad about that thing nobody wants to think about' and tune out mentally until an advert for ice cream wakes them up again. That's exactly what I'd have done, I'm sure, until dementia came knocking on our family's door with a sledgehammer. Then a wrecking ball.

But I'm a firm believer that the time for sugar coating -- no matter how well intentioned -- dementia's public face is over. On the kitchen floor at the moment is a newspaper from 2016 that Mum had in a heap in the garage that's useful now the dog's very elderly and almost as challenging in the loo department as Mum. There's an article which caught my eye this morning saying how scientists were optimistic that within ten years there would be drugs to halt dementia's progress.

Anyone have any faith we're only a few more years away from that? No, thought not. No harm in hoping, but in the mean time the years tick by and the sledgehammer keeps hammering doors down, putting thousands more on the dementia treadmill, each family having to learn the hard lessons for themselves... you're on your own to negotiate a complex system of benefits and paperwork and inadequate support options and general headaches while trying not to lose the plot yourself.

Yes, local reps from the AZ Society and the like can be wonderful signposts, but.. But I still remember the day the lovely lady came round to see us and talk very calmly and helpfully to Mum and I about her diagnosis. I also remember Mum saying horrible things about her the moment she'd gone, telling me what a barsteward I was for letting her in, then tearing up the leaflets and throwing out the booklets. It was one of my first 'trials by emotional fire'. The AZ rep was lovely, and gave me the feeling I wasn't on my own trying to stop Mum's life melting down completely. But within minutes were were back on our own and out the door "going home" again... the treadmill continued revolving.

Help is there, but it's never for long, never enough, and never there at 2am when your Mum's trying to kick you out of the house because she doesn't know who you are. And yet as Mum sits there stroking her teddy, oblivious to most of what goes on around her now, and only capable of hobbling back and forth to the loo and bed with my extreme support, I'd go back to that early chaos in a heartbeat. She was angry and confused, fearless and terrified, crashing from one UTI to the next, furious at me one minute, grateful the next, off out the house at the drop of a hat to go who knows where, but... But she was still Mum.

Now she's just Mum-shaped, and my job is to stay sane and make her end as dignified as possible.

Ultimately, each person with dementia and their family is on their own in this, and that's what this TV campaign portrays in a stark, but IMO necessary way. Nothing will change until we address it head on and be the sledgehammer rather than be sledgehammered. We've worked miracles curing or helping so many conditions. But if we only live long enough to get dementia, that's a curse, not a miracle. Society needs to face up to that, because there is no crueller condition.

Reading my extended, self-indulgent rambling is possibly equally cruel. But I can at least log out again for a while and cure that!

Anyway, it's a well done from me. No campaign or social support network will ever be perfect, or anywhere close, but as the NHS struggles to get back on top of cancer and other conditions, and as the government has to face up to the dreadful financial burden covid has placed on the next decade or more, everyone's going to have to fight for their cause a bit harder. I doubt there will be time for subtlety if anything's to change. So thank you for trying something different.

I think my Mum would thank you too, if she could.
 

WJG

Registered User
Sep 13, 2020
108
0
How thoroughly depressing. I know the film is aimed at social care reform, but this just reinforces Alzheimer's as misery. It's not my life that is portrayed here, nor that of my friends. It's misery porn.
 

kindred

Registered User
Apr 8, 2018
2,674
0
How thoroughly depressing. I know the film is aimed at social care reform, but this just reinforces Alzheimer's as misery. It's not my life that is portrayed here, nor that of my friends. It's misery porn.
I take your point completely. But as for misery porn. No, in fact, my life as a carer was way way worse than what is shown, Kindred
 

AwayWithTheFairies

Registered User
Apr 21, 2021
141
0
Will anyone watch it, is what I wonder.

Here in US they have resorted (again) to showing people in tv ads advocating for not smoking, with horrific disfigurements, a few days from death from smoking related illness.

Anyone who already smokes is addicted and will switch off. The young people who are not yet hooked, do not watch television.

As a committed non-smoker who watched my dad die from it, the ads make me feel ill and depressed. But so I campaign to prevent others smoking? No. How?

What do they hope to achieve? I thought it was well known the scare tactic doesn’t work? Did any of us imagine that WE would be the unlucky ones shouldering the worst disease of all, a fate much worse than death? Nope, that would never happen to ME! Yeah, Right.
 

jennifer1967

Registered User
Mar 15, 2020
4,594
0
Southampton
How thoroughly depressing. I know the film is aimed at social care reform, but this just reinforces Alzheimer's as misery. It's not my life that is portrayed here, nor that of my friends. It's misery porn.
i think it is depressing. not sure what misery porn is? i hope that people watching the film will bear in mind that it is dementia[all kinds] that is being shown and not just alzheimers.
i know they overlap but there is presentations where some are not necessarily started with a poor memory.it could be other factors that present therefore it should be inclusive.
 

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