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.
Join our campaign for quality social care
You can stand with us to ensure that people affected by dementia are heard loud on clear on their demands for social care reform. Become a campaigner to stay up to date with the latest Alzheimer’s Society news and to support future campaign actions
John Yapp
saysDementia should be treated like any other illness and get appropriate help from our taxes.
No one knows what is in store for them in later life. We all deserve as much help as humanly possible!
Ray
saysI had a terrible time with my dad, a year after he was diagnosed with dementia (after a stroke) my mum died. i had to try and juggle work and trying to care for him until he went out one day and got lost 150yds from his home. I was told by social services to find a care home for him immediately - or they would ! My dad refused to go into a home so i was told i must take him there and then just leave without him noticing ! it was the hardest thing i have ever had to do in my life. He was attacked by another person in the home, so i moved him to one i thought was a better one but i found that he was being abused by one member of staff but had no concrete proof. In the meantime all his savings were dwindling as it cost over £300 ( this was 10 years ago) he ended up in hospital as he was just skin and bone due to not eating or drinking hardly anything, after a few weeks in hospital i was told they needed the bed and i must find another care home, and again, or they would. The one he was in said they didn't want him back and i didn't want him to go back there anyway, so i found another place and after a few weeks in there he died, which to be honest was a blessing as he ended up so pitiful. I ended up having a breakdown myself due to all the stress i went through, i had no help with my dad whatsoever and had to use most of his savings on his care. I can't understand why this illness is means tested, there should be more help given to people at what is a very distressing time and nursing homes should have more rigorous checks on their staff as with my my own experience and also other stories i have heard it isn't good enough.
Elaine Hindley
saysMy mum (passed away 2017) suffered with Front Temporal Dementia. It took 6 years and her buying an apartment in the Dominican Republic for her GP to take us seriously. When she needed care t home we had to pay for those visits 3 x 1hr visits (£50.00 per day). When we finally had to move her to a home it was against her will. This opened the dreadful and mind breaking world, door of DOLS, court against them local authority, solicitors, barristers the lot. At the same time paying £1070.00 per week for her care. By the time she died she’d paid over £100k for her own care. She’d as did my father worked hard (teacher) paid taxes all their lives. They saved hard for rainy day. At the time she needed something back from the government she was completely let down by a system that’s not fit for purpose!! In addition so were we. The stress involved in a families journey through the Dementia world is mind breaking. 2 years on from her death and I’m still mentally broken as is my sister. Something must change!!
Martin Green
saysDementia care should be treated like cancer; provided by the NHS and not means-tested; many voters are very scared by the prospect of dementia without getting free help
Lola McFarland
saysWE spend billions on drug addiction treatment and do not impoverish those affected, nor their families. Why do they not have to become poor to get help, because addiction is considered a disease. Really, and what is alzheimers, a moral failing. Did we choose this disease? When will those with Alzheimer's and related dementias become worth caring for, or is it because they are mostly elderly, expendable, and not wanted anymore?
Graeme George McCredie
saysOn my wife's first evening in a Care Home, the manager when off for the weekend without informing the Carers about my wife's conditions and needs; my wife is neurologically blind, has no spatial awareness and no short-term memory due to dementia. I found her in a near catatonic state siting ignored on her own in her own faeces. Staff smoking next to open windows feet from residents. With PCA form of Alzheimer's she is severely disabled but she is aware. We have to ensure standards are the best possible and they are upheld.
Graeme George McCredie
saysMy wife is 65 and has seen escalating decline due to Alzheimer's over the past 11 years, most steeply in the last 7 months. My issue is that Norfolk SS have never given us any help at home and seem to prefer mandatory Residential Care to Day Care and assistance at home. Help that has been recommended by the local NHS Dementia Team has been denied us. Norfolk SS have used subterfuge to get my wife in to Residential Care and my initial experience of it was terrifying. At some point I accept that my wife condition will become impossible to deal with by myself, alone. But, I care about my wife, as well as for her and no salaried Care Home worker is going to make her remaining years as happy and dare I say it, as long and as health, as her loving husband.
Mrs Rozalia Ernsting
saysMy husband has Alzheimer’s and I am at the end of my tether as he has become very aggressive and abusive, I am struggling to find a place in a care home for him.
More care homes please
pam thomas
saysBrutal treatment for the individual and brutal for families
Keith xxxxxxxxxx
saysThe worst disease imaginable, no future to look forward to, a life sentence for the carer the only consolation is knowing you care enough to care as the person you care for at some stage won't remember, add to this the financial worry no wonder people are so desperate.
Liz Dalton
saysHaving removed Mum 14 months ago from a"Dementia Nursing home" A 4 year ordeal of inconsistent basic care ,safe guarding, carers not to blame, the management is. A good manager provides good support good training and enough care givers with right person centred approach to deliver effective care.
People who self fund their own care are at more risk of poor care as trying to support your loved ones who cannot advocate for them selves.
CQC look at paper work and if it's written down its happend. When you experience concern raise it with the care Management. They simply defend themselves. Not make right what's going wrong.
I worry about People with advancing dementia without people to help them.
Top up fees ( Dont get me started) its criminal.
How ever Me and my family celebrate and support our Mum in her last days as I type. Dying well at home .
Janette Aiken
saysMy husband and I have worked very hard all our lives and have our own house, savings and a good pension . My husband, at the age of 70 was diagnosed with Dementia with lewibodies. I looked after him for four years but sadly he has deteriorated and a year ago, after a long hospital stay when he contracted pneumonia I had to put him in a nursing home. I had to remove him from the first home as it was not good enough and I was worried for his safety. He is now being looked after in a very good home but I am paying £1,600 a week! I have had to use our savings which are depleting rapidly and am now taking Equity Release on my House. He has been assessed to see if I can get some monetary help with his fees but have been turned down. He can do nothing for himself and has to be fed, given fluids, is unable to walk or make himself understood and needs constant care. If he was violent and had been sectioned we might have been able to get some help but as he sits quietly, dependant on carers to look after him and live, we get nothing. Why should my money pay for other patients who are disruptive and violent in the same home?
Ann Hawkes
saysThe criteria for continuing care seem heartless to me. How can someone who has the needs of your husband be turned down for help with payment towards very necessary full time care which is not sustainable at home.
Slaney
saysI have worked in homes way back 20 years ago,I reported them twice, still 20 years on same old same old,people being abused not tight enough restrictions or training ...my mum now has dementia, it's not bad enough that this disease robs us little by little of our precious mum,a mum who used to be so independent now dependent,my dad and my family rally round and care but the worry of having my mum and dad finally being robbed of what they worked so hard to achieve in their lifetime is so so cruel,the government needs to step up and fast,dementia eventually leaves these once independent people behind closed doors all but forgotten....... As they say "is everything ok" NO NO NO!!!
Michelle
saysThese people are human beings. They have no choice but to go in a home that have high costs and run by minimum wage people that really do not care for these people. They deserve respect and the government should give money for better resource not allow the home owners to take ridicously high charges. This is a life changing disease cut the wages of politicians that are seen on tv sleeping and fund the people rhat deserve it
Pamela baldwin
saysMy husband is in a mental home at the moment. I hopehewill be back at the care home soon, this is a terrible disease for them and the family.which I do not get much help from.It is so lonely most of the time,but we all just carry on.