Dementia Support Line
Real stories
The dementia care 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.
In 2019, 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 are still facing 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 a 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.
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
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
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
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
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
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
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
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
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
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 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'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
This article was first published on 18th July 2019 and last reviewed on 9th July 2021.
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Liz Barton-Rossall
saysAs a family we've only experienced this issue for around 10 months. Mum has no savings or property and myself and sister aren't in a financial position to provide 3rd party top ups. We've spent endless time on the phone/internet trying to find a decent care home that has good CQC reviews, is covered by Social Care funding and doesn't look like a hovel. The decision to place a loved one in the care of others is hard enough and could be made easier (on a families emotions) if there was a cap on fees and a better standard of environment expected to be allowed to operate.
Whitedove
saysDiscrimination sums up this issue for me.
Maureen
saysDementia is a terminal illness and unfortunate people are ignored so unfair on an illness that destroys them, the government should act now to help these poor people
Mark Bailey
saysThe scandal just keeps getting kicked down the road. Consider the two individuals trying to become the next Prime Minister. One wants to cut corporation tax for companies in the UK, estimated cost 13 billion. The other wants to raise the higher rate tax threshold from 50000 to 80000, billions again. Even if you support tax cuts surely taking care of the elderly and frail should be a higher priority. Can we cut the soft words, hushed tones, etc. It just makes me feel sick. So the richest in society get more and those with Dementia and their caring families can go hang.
Looking out for my mum it has become clear to me Dementia sufferers and their Carers are just cannon fodder ignored by the political class. That is all of them. Thirteen years of New Labour and five of the coalition showed the Liberals are just as bad. Their priority was increasing the personal tax allowance. You keep kicking innocent people. Well be careful Dementia is not picky who it strikes and you might get a front sit one day. Then maybe you will wise up, get a sense of decency and so something, not just promise to do so.
Sorry if that sounds harsh but we are not talking here about nice to haves, etc, but real basic n ends. The health service is meant to provide collective cover for illness. Strange cancer no one has to sell their house, get the cheque book out,etc. Why is Dementia so different be careful how you answer that, as we are each just one turn of the cards away from meeting Dementia.
Elizha
saysMy Dad is in respite whilst my Mum recovers from her hip operation. The care home has a separate dementia wing which I decided he was not sufficiently ill enough to be in. However, despite him having vascular dementia and Alzheimer's, the care home, with staff looking after residents with dementia, are of the opinion that my Dad is fine and doesn't appear to have dementia!! How they can look after people with dementia yet not recognise my Dad has it? My Mum needs both her knees replacing but there is no way my Dad will be going back in a care home, it seems I will have to look after him myself at home. Best get playing the lottery so I can afford to live!
I also know of a lovely young woman who went to work in a home with advanced stage dementia sufferers and she had no training before being thrown in the deep end and could not cope. The advert for the particular home is very inviting though, you would never know the true story of the lack of experience and expertise in 1 or more of the staff.
Maureen Gascoyne
saysTo find that your lifetime partner has been diagnosed with Altzheimers Disease is stressful enough as it creates long term unresolved grief as you slowly say goodbye to the person you love. For the one who is left to care this creates anxieties enough, without the overwhelming burden of knowing that by the end of the 'long goodbye' there could be no money left from lifetime savings to make being the survivor worthwhile. Altzheimers is a disease, as are other forms of dementia, and those who suffer from it should be treated in the same way as any other NHS patient. not penalised because of the nature of their illness. Care is a disgrace in this country, and I dread the time when I can no longer meet all my loved ones needs.
R.J. Clarke
saysSpend on our aged who have worked and paid taxes, not overseas aid/druggies/and alcoholics, My wife would have free treatment in prison, why not in our local care home.
Catherine Ping
saysIf you have contributed to the NHS through paying your taxes, how can it be right to force people to sell their homes and use their savings in order to pay for their care. Both of my parents are now in care with enough funds for just another year. When the funds are gone the State pays for their care anyway with all that they worked hard for gone.
Margaret park
saysThis is heart breaking that so many lovely people are being treated beyond worse and badly in care homes. Who ever are these people who are being cruel to any one that is in care, They need to be punished immediately and publicly exposed.
then locked up.
Terry
saysOur elderly dementia sufferers deserve to be treated as all NHS patients suffering from a terminal condition now , it’s time the UK cared for it’s elderley and middle classes whom have worked all their life.
Linda Blythen-Hall
saysMy mother has dementia. Her brother (now deceased) also had dementia. Their sister too, is currently in a care home with dementia.
My uncle’s home was taken and sold by his local council to pay for his care whilst others on the same centre who had never worked (apart from the social care system) didn’t contribute a penny to their care.
He was charged at the time (almost 20 years ago) £15 for a weekly haircut. He was bald! The situation is appalling for those who need care and their families trying to support them.
What will happen to the current carers if they too succumb to the disease and have already spent their savings and capital looking
after a parent??
Alan Brett
saysTony Blair's speech at Party Conference before becoming PM "No old person should have to sell their home to pay for care." Applause Nothing happened.Coalition Government, watered down version of Dilnot's recommendation accepted but deferred by Cameron and abandoned by Teresa May. Green paper? Where is it?
Thirty years of inaction reflects a total lack of concern. Find money for wars and State functions? No problem! Find money to care for the aged, physically and mentally infirm? No money, you're on your own! Where is the concern, the care, the compassion, the conscience,of our politicians? It's a scandalous shame for a country that is supposed to be rich. It's self,self,self all the way. Maybe in the next century there will be some action at last? I doubt it. People with dementia don't vote1
Christopher J Edgerton
saysAnd let's not forget a Care Bill at the end Labours last government was talked out of time "filibustered" by all political parties
R A lake
saysYes all parties sould take note of there roll and understand more about it because they do not know if will effect them at anytime or one of there family at anytime
Ellis Jones
saysThough dementia has a much higher profile than it dis a few years ago. The increased publicity has not prompted the government to give it has much financial support as it should give
Patrick
saysI was in the second year of my doctorate in psychology when my mum underwent tests for vascular dementia. The illness deteriorated rapidly. I owe a great deal to friend who helped me get to graduation by looking after my mum when I attended lectures.
I onetime worked as a manager in an elderly local authority home and realised it was as good as the staff you worked with when it came to valuing elderly residents, but... there was a large staff dropout rate. I couldn’t put my mum at the mercy of ‘maybe she’ll be ok’. I’ve looked after her for three years at home along with a few carers. I can’t work as a psychologist and at times feel so let down by the system in place. At least I know my mother is in a familiar and safe environment with people who love and cherish her. This, I believe, is worth more than putting her at risk. Shame on our government for not supporting enough home carers to allow them to continue to work knowing their loved ones are safe at home with professional help.
My mums receiving palliative care at home now and I know she’s at peace in these difficult days ahead.
Patrick
Kate Swaffer
saysExcellent initiative 👏👏👏