Dementia care: The crisis behind closed doors

We held a parliamentary photo exhibition, highlighting the human cost of the social care crisis to MPs. Here you can see some of the images and hear from the people affected by dementia who were photographed.

For too long, the dementia care crisis has been hidden behind closed doors, lived by people who rarely have opportunities to be heard. ‘Dementia Care: The Crisis Behind Closed Doors’ tells the stories of 12 families from across the country, all of whom have struggled to access affordable, good quality care.

We invited MPs from across all the main political parties to attend and meet some of the families featured in the exhibition to hear more about their experiences. We hope that these often unheard, powerful stories illustrated the wide range of challenges people with dementia face in the current care system. We want these images and stories to inform the debate on social care and encourage MPs to take action to fix it. 

Read the stories behind the photos

Below we have collection of the photos from the exhibition which took place on 9 July 2019. You can read quotes from the people affected by dementia who took part. Most importantly, you can help make the Dementia Fund a reality by signing a public letter to the future Prime Minister.

Dementia Care 1

Christine’s husband Bernard was moved from multiple care homes due to poor care.

Christine and Bernard

'My husband was in five different care homes, almost all of which he had to be removed from for his own safety. No other family should have to go through this.

Bernard’s story does not make for easy reading. Before passing away in 2017, he repeatedly experienced the kind of appalling treatment that no one should ever have to endure. His treatment in one care home is still subject to a criminal negligence case. As I see it, he was dangerously let down again and again by staff who lacked the training and the understanding to keep my husband safe. He had to be moved into different homes multiple times because of very poor care.' - Christine

Dementia Care 9

Sylvia and Philip have spent £160,000 on nursing care.

Philip, Rosemary and Sylvia

'Mum wouldn’t survive more than 48 hours without nursing care. Why have we had to spend £160,000 to make sure that doesn’t happen? If you want the process of applying for dementia support to be efficient, transparent and straightforward, then our experience – as we’ve sought support for our mum, Sylvia – could hardly have been further from the ideal.' - Philip

Dementia Care 10

Enomwoyi and Pearl pay £570 a month for private carers.

Enomwoyi and Pearl

'For just two hours of care each day, we pay £570 a month for private carers. The previous carers, sourced by the local council, would not even say hello to my mum and I would have to explain her needs repeatedly.

It was only when I really put my foot down, after seven months of waiting for a social services assessment and mum ending up in hospital, that mum’s care finally began to move forward – and still our savings are disappearing fast.' - Enomwoyi

Dementia Care 2

Atherton and Deborah are worried about what will happen when their savings run out.

Atherton and Deborah

'We pay an extra amount every week in fees just because my husband has dementia. The savings covering these costs won’t last forever. I am constantly thinking, then what?

With each week that passes, the stress of covering the costs of Atherton’s dementia care grows. By the end of the year, he’ll have nothing left.' - Deborah

Dementia Care 3

Julia and her husband Bob would benefit from night care but it is too expensive.

Julia and Bob

'Dementia has not only robbed my husband of the life he built, it’s also stolen his identity. I need some help to get us through this.

My husband Bob, who lives with dementia, needs care during the day. But it is the nights that are extremely difficult. Every night Bob wakes up shouting, keeping me awake throughout the night. It’s loud enough to wake the neighbours too. Night care would massively reduce the strain, but the only option I’ve been offered is too expensive.' - Julia

Dementia Care 5

Ivana and Val worked hard and saved for the future but now have almost nothing left. 

Ivana and Val

'Watching the person you love experience this cruel disease is heartbreaking enough. We shouldn’t have to go through this financial stress too.

For many years, Ivana and I lived a very busy and happy life together. We worked hard and saved well for our future together. Initially, when Ivana was diagnosed with Alzheimer’s, we stayed focused on the future. But when her health began to decline in 2018, I stopped thinking about the future we had planned together. Ivana needed to move into a care home, and our savings began to disappear. One year on, Ivana has almost nothing left and my bank balance is falling fast.' - Val

Dementia Care 7

Sharad and his daughter Nimisha have found dealing with the care system distressing.

Sharad and Nimisha

'We were told we would have to fight to get dad the right support. But nothing prepared us for how hard it would be.

I don’t think dementia ever affects just one person. It affects everyone close to them too – their family, their friends. And my experience is that the care system hasn’t helped any of us. It’s actually made things more distressing – for my dad, Sharad, and for all of us who are trying to make dad’s life with Alzheimer’s as comfortable as possible.' - Nimisha

Dementia Care 4

Jenny: 'All the money we made selling our family home has now been spent on care.' 

Jenny and her mum

'After two and a half years, the money from selling our family home had been spent on mum’s care. We had to move her because the home wouldn’t accept the rate available from social services.

Ever since mum was diagnosed with dementia, all we have wanted is to find affordable, good quality care for her. But it feels like there have been many barriers to cross to achieve this – all the money we made selling our family home has now been spent on care.' - Jenny

Dementia Care 8

Paul's brother was let down by the care system.

Paul, Hillary and Karen

'What my brother went through while in a care home was devastating. I won’t let my family go through that again.

I was recently diagnosed with the early stages of Alzheimer’s, and I’m already putting plans in place to avoid living in a care home. Having seen how the care system let down my brother, Edward, I’m doing everything I can to stay in my own home, with care workers visiting when I start needing extra help.' - Paul

Dementia Care 6

Sandra has not been told what will happen when her mum's savings run out.

Sandra and her mum

'We are days away from mum’s savings running out. Why will no one tell me what will happen to her care?

Imagine being asked to sign a contract agreeing that you will pay a regular sum of money, without the contract specifying how much. You’d think someone was having a laugh, wouldn’t you? But that’s exactly the situation I found myself in earlier this year, as I tried to organise payment for my mum’s dementia care.' - Sandra

Jag

Jag has found it very difficult to find culturally appropriate care for her mum.

Jag and her mum

'Why, in a society like ours, am I having to seek culturally appropriate care for my mum? And why do I have to pay extra for it? It’s never been easy finding support for my mum that takes cultural differences into account. She has to have female care staff and they ideally need to speak Punjabi. Arranging that really shouldn’t be as stressful as it has been.' - Jag

Lesley

Lesley's experience of the care system has been distressing for her whole family.

Lesley and Shelley

'I fear for people with dementia who don’t have relatives because they become so vulnerable. Who fights to stop them falling through this broken care system?

I became my sister Shelley’s carer overnight, with very little idea of what was ahead of me. From that moment on, getting the support we both needed seemed like an endless struggle. It’s been an extremely distressing time for the whole family.' - Lesley

Sign our letter to the next Prime Minister

At the exhibition MPs will be invited to sign a letter to the future Prime Minister asking them to address the issue of dementia care by including a Dementia Fund in this year’s Spending Review.

We are also collecting signatures for a public letter alongside the letter from MPs. If you want to help to make the Dementia Fund a reality,  sign a public letter to the future Prime Minister, demanding that the next Government takes urgent action on dementia care.

Demand action on dementia care

Help make the Dementia Fund a reality by signing a public letter to the future Prime Minister.

Sign now
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55 comments

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I think it time all of government done something about this now and not hope it will go away and put it on the back pack and hope will forget about this

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10

I keep seeing comments about a them who are state funded vs those who self fund. I know there is a misperception. What is more whilst this divisive perception plays out those truly responsible will continue to ignore what is needed. Please do not think for one minute that being state funded or chc is all its cracked up to be. It brings limited choices. It brings deserving and undeserving.
The truth is the under funding continues to affect all! There are no winners when living with dementia. Coming together is the only way otherwise it diverts attention on the truth. Where money flows into bankers coffers. Oh yes our taxes all went on bankers but not on our loved ones living with dementia.

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Well. Here I am again on the Eve of my Mums celebration of her life. I posted last on 9th July. Mum passed away peacefully at out home 11th July 0607hrs. We celebrate the 4 siblings had time to say our goodbyes in the comfort of our home. Mums grandchildren, great grand children and all our partners. Mum died well with dignity care and love.
Now for the sad bit. Mum was fast tracked by Community Nurse and GP on 3rd July for Continuing health care. This was declined by the CCG due to lack of evidence provided by the community Nurse. No consent form or best interest form provided. CCG said until more evidence provided fast track cannot be agreed.
Our Mum had hours to live. She is dying.
What if our Mum wanted to die at home and didn't have family to sit with her in her home in her last hours ?
Self funding people who have no advocates, family, good domiciliary care providers like i had for Mum to help me. CHC Funding isn't just about money . Its about the services that person is entitled to in their last days of life.
I spoke with continuing health care at 1530hrs on 10th July 2019. Mum died at 0607 11 July still fighting for for funding when Mum was taking her last breath.
Come on polatitions. Come on Continuing health care this has to improve. It's too late for our Mum. She has paid inaccess of 120k for her care. Let down in her last 2 weeks of her tax paying life .

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16

Hello Liz. Sorry to hear that you and your mum had to go through this at such a difficult and emotional time.
You aren’t alone in your negative experience with NHS Continuing Healthcare, which is why Alzheimer’s Society are calling for change with our Fix Dementia Care campaign. We want no-one else to have to go through what you have in the future.
For anyone reading this who needs information on NHS Continuing Healthcare, you may find the following free booklet useful; When does the NHS pay for care?https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/whe…
We hope this helps, Liz.
-
Alzheimer's Society Blog Team

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14

My mum passed away in 2016 with FTD dementia and we cared for her at home for her last 4 months, my mum did not have to pay for 24/7 care as I'm a fully qualified Dementia specialist my dad is also a carer so my mum was extremely luck to have us by her side, I understand people frustrations with care/nursing homes and the lack of care and knowledge but please don't tarnish all carers as "abusive horrible people" I have worked with amazing carers in my career and pride myself as going above and beyond to provide quality person centred care, I'm not saying all carers are "perfect" but in my 20 years experience in the care sector I've met more exceptional people who do actually care our job is HARD WORK we have rubbish pay, long hours, bad backs from years of lifting and bending but most of us get up and go to care for the people we look after despite most of the time a very stressful ,,all I ask is that we are not looked down on and classed as "just carers" and all painted with the same brush cos believe you me we are not!

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Sadly, both my parents died last February. Both had dementia. All my parents wanted was to stay together in their own home to the end of their days. Consequently, all their savings disappeared on the 24/7 care they needed. When my mum became eligible for 24/7 CHC funding they still had to pay towards my step-dad's social care as he was not CHC funded. If my mum had been on her own, nothing would have had to be paid for the 24/7 care. However, the worst thing of all was the delay and procrastination by the 2 funding bodies (NHS and social services) to agree mum's care plan and how the two different funding structures would resolve the situation, whereby two people were living together at home and recieving support towards their care from different funding sources. This is still very painful to recall. Both parents were unwell and near end of life. When I should have been spending more time with them, I was having to try and get the funding sorted.

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13

Of course we need properly funded care. Please will politicians firstly look at what we spend on and where we waste money and then make an admittedly probably unpopular, but necessary decision, to put a little more on tax or National Insurance, ring fence it and use it for care funding.

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It can happen to any person at any time. Until you see a friend with Dementia you don't know how it effects them or the people who love them who are around them. No matter, we should always help them to find a cure for this terrible diease which effect so many people and as the population of the Country gets older this will effect all the more people.

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9

It is irrational and unfair that unlike other long-term illnesses Altzheimer is treated and funded as a social rather than health care issue

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16

My husband has suffered enough ,on top of his dementia he has had dreadful care ,he has Dols ,I am desperate to move him,the home have lied and professionals are making him stay their .they don't like me because l have. Spoken out ,taken photos of his injuries ,he has escaped twice it was not noticed for two hours that he had gone,police hospital,smashed face, I am. Told this is how care is l have photos of lots of injuries ,one which had a naked man in the back ground.They barred me ,and then gave six hours back they have shut me up and out.its making me so il nobody cares

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Hi Pamela, I'm very sorry to hear about your husband and your experiences with the care home. If you call our Helpline one of our advisers would be glad to discuss it with you and offer advice.
Our Helpline is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.
Thank you

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Thank you for your comments – unfortunately we hear so many stories of poor dementia care experiences, which is why we are working hard to ensure our Fix Dementia Care campaign is heard loud and clear by the Government. We are currently working on getting as many signatures as possible for a letter to the next Prime Minister, asking him to make fixing dementia care a priority. Please contact our helpline on 0300 222 1122 for any advice or emotional support you might need.

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11

My husband has alzheimers thankfully his nursing home is excellent. But the costs are very high. All our money will be used, why is,not dementia on the same footing as other long term illnesses.

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9

The current position is scandalous. Care for dementia sufferers cannot be abrogated. Care needs are demanding and to present partners of sufferers with what appears to be a binary choice between self help and an inadequate Care system cannot be morally right. Resources have to be found to overhaul the care offered and more public money allocated to Social Care.

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9

My husband has Lewey Bodies Dementia. We have both worked all our working lives, paid full tax contributions - we have both paid into a Health System - and were lucky never to be hospitalised. I have now waited 6 weeks for emergancy rest bite ! Please, WAKE UP politicians !

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14

I lost 2 of my friends because of Dementia, and I lost my aunt to it 3 year before she died. Few of her family grieved at the time of her death, because we'd grieved for her loss already.

Dementia is a terrible disease, that ruins everyones lives.

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9

Both my mum and dad had vascular dementia, and I've fought and lobbied for adequate care for them for years. It's exhausting. I've met good people along the way, but on the whole, it's been a very upsetting journey. Financials aside for a moment, the lack of understanding of issues surrounding dementia in allied health professionals and carers made the journey harder than it needed to be.

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