Dementia care needs fixing – and you can help

At Alzheimer’s Society, we believe that we must – and can – Fix Dementia Care. Sounds simple, doesn’t it? Three simple words but actually quite a daunting task.

You’ll have seen the stories in the news over the last few weeks about the enormous costs of care borne by people with dementia and their families. Our estimates put the figure at almost £15 billion over the last two years.

The money to pay usually comes out of the life savings of people living with dementia, the sale of treasured family homes and through families clubbing together to pay for the care their loved one needs, and deserves.

Daily Mail Friday 19th July 2019 Dementia Care front cover

Today's Daily Mail front page (Friday 19 July) highlights the appalling cost of dementia care.

For too long, the dementia care crisis has been hidden behind closed doors, lived by people who rarely have opportunities to be heard.

Highlighting the dementia care crisis

We are determined to bring these stories to decision-makers across the main political parties – and we recently did so by hosting a photo exhibition in Parliament, featuring the stories of 12 families affected by the dementia care crisis.

120 MPs attended the event, where they spoke with many of these families and took action in support of our campaign – strong evidence that we are building the cross-party support we need to tackle this problem.

We know that it means so much to people experiencing the difficulties of dementia care to have their stories told.

Sandra at home surrounded by paperwork

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

Sandra, who was featured in the exhibition and whose mum, Jean, has Alzheimer’s, pointed this out after the event, saying:

“I was so pleased to be given the opportunity by Alzheimer’s Society to take my experience of the broken support system endured by my mum and myself directly to the MPs themselves, something I never thought I would be able to do. I hope this is the beginning of helping others who are facing the same challenges as ourselves.”

We also want to draw attention to these stories outside Parliament, and make sure that they get the media attention they deserve. The public needs to know about the challenges so many families face – and the families facing these impossible situations need to know that they are not alone.

The catastrophic cost of care

To that end, we have been working with the Daily Mail on their End the Dementia Care Cost Betrayal campaign. 

Every day we are contacted by people with dementia and their families who are struggling to access the care they need. They experience stress, anguish and exhaustion in fighting for appropriate support.

All too often, we hear of care that is of poor quality, or bureaucracies that stop people getting the care they need, and have to pay for at enormous – sometimes catastrophic – cost.

Our support of the Daily Mail’s campaign will ensure that we are shedding a light on these battles, which have been fought in private for far too long.

You can help fix dementia care

We want the public to know about the dementia care crisis, and we want them to take action.

You can help us by adding your name to our public letter to the new Prime Minister, demanding that dementia care is a priority for the Government. 

Tell the new Prime Minister that dementia care can't be ignored

We are standing with people affected by dementia by letting the new Prime Minister know that the dementia care crisis cannot be ignored any longer. Will you add your name to our letter to show your support?

Add your name
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107 comments

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My mum went into a care home on March 1st. All her pension and dad’s pension ( who died 7 years ago with Alzheimer’s disease) is being used to fund her care. Also as a family we had to sell the family home to fund the rest of her care! There has been no support whatsoever from the local authority.
Mum could no longer remain at home as she was wandering out of the house. She had so much funding and care in the community.

This happened to our family selling the family home to pay for my moms care ,but she sadly Died in 2012

May God allow to discover medicine of alzheimer.

Hi all
My mum also suffered from dementia. I fail to understand why there is so little progress looking for a cure? It devastated a lot more family than cancer. Why there is no force behind the research I do not understand. Is it because they think it effects only old people, of course we know this is not the case.

Dementia patients NEED HELP

moreso their carers who try to do their best, usually when they are older and infirm themselves. So I could get a much needed respite break about a month ago, I had to pay out of my own pocket £2,325 for 12 days for my husband to go into respite care. It was not the Ritz, just a comfortable, well run, care home.

The suffers of dementia should not have to surrender their house , their security and memories of the past by being forced to exchange home for care .

We need more help from the government to help with the cost of care, its devastating enough to loose a family member to Alzhimers and Dementia without losing your home to fund it! I deliver Foundation level in person centred care for Dementia and The intermediate level for Person centred care in Dementia to a local care home to help staff understand more. Maybe government leaders should come on the training! Made more aware of the needs of our country living with Dementia

Chc assessements need addressing, the brain is largest organ in body to mis function and when it gets to needing help with Every part of daily care for health & safety reasons chc should be automatic

This growing problem is brushed under the carpet while the elderly are robbed not of their mental capacity by this cruel disease alone but also of their assets they have worked hard to own and hand down to their families.

It will be more expensive to control and implement any concessions than to let things stay as they are. Many old people are going without food to stay warm there can be no justification to make things even harder.

we all need to look after our older community, more needs to be done to care for dementia patients, the disease is devastating enough.

We must admit we have a crisis

It's scary and sad to see. I worry about it more than cancer. Please help

When you see a family member loosing their identity and not remembering their loved ones. Struggling to cope with every day living, how can this not be recognised as a mental health illness under the NHS umbrella is beyond me. A working class person cannot ever raise enough money for this and have done without to leave a little to their family cos most have already given up their time to dedicate to the care until they no longer can, some just spend it! It is wicked that we as a nation do not look after people with dementia at their time of need. Families are struggling to cope. Shame on us!

It's an outrage that whilst serious physical conditions are treated automatically Altzheimer patients and their families are left to financially, and largely pastorally, fend for themselves. How can this be justified? The new Prime Minister needs to address this anomaly in health care provision and take action to bring an end to this callous disregard for this disabling mental illness in line with the resources offered to those who are physically incapacitated. Cherry picking which diseases to fund is indefensible.

Yes that's right we should not afto found our care we have paid our tax and all the other things we have to pay for out of our wags all our life so we need the help so we are still paying for it and so we should get the help and not have to pay any more for it so government sould do something about it and put us down we did not say we will have this .

Going through end of life treatment with my mother in law, the whole of alzheimers needs to be looked at. We have lived with this for nearly 16 years and are journey is coming to the end. In that time nothing, nothing has really changed.
I ask you Boris Johnson be a prime minister and make changes, but I do this knowing you and your government will not. I and many people do charity events to help people and more importantly for me research in to curing this disgusting disease. Is this how it's always going to be come on Mr Boris Johnson make the changes that we need.

My husband has Alzheimer’s and Cardiovascular Dementia I am his 24/7 carer, it is taking a toll on my own health now but help is there we have to pay for, we have both worked all our working years, paying tax and national insurance, what little we have managed to save over the years is dwindling. I need more respite but it’s added expense. The government MUST step in to help both patients and families, you give far to much to immigrants and far too little to pensioners and next to nothing to Alzheimer’s patients who never asked or even did anything to get this frightful disease , look at how the Netherlands canoe their Alzheimer’s/dementia people, copy them and just maybe things will improve a little.

Please make dementia care equal to any other illness. Why should people who have saved all their lives have to loose everything they had managed to accrue, while people who saved nothing get the same care for free. Illness makes us all equal and we should be treated that way. We have not even been able to get the higher rate of disability living allowance, the forms are ridiculous for people with memory issues living alone. How can we answer questions like how often do you need help in getting out of bed at night? They can’t remember and a specific form should exist to accommodate this fact.

Please government look at the needs for people with dementia it’s hard enough for families having to deal with this cruel disease when it hits a family member or friend without the struggle of worrying where the money will come from to help care for them.

I doubt whether our arrogant self-centred politicians will care a jot, since their pre-occupation is with the needless Brexit. All of this wasted time and money would have been far better spent on health care and we might still have a prime minister that didn't just care about his career

We need action from government.

More funding desperately needed for dementia sufferers and carers.

My mum had Dementia and eventually had to go into a home as she was no longer able to care for herself. Sadly I lost her to this horrible thing.

It’s great to see this letter. But I think you need to add an „add your name“ link to the top of this page too, as otherwise we might lose people who perhaps don’t find it easy to navigate online.

Our dad who is 96 has dementia and been in lovely Carehome for the past 9 month.
His lifetime savings are now depleted and have made a deferred payment application to LA end of Jan 2019 but have not heard from them after continually chasing.
We now need to sell his house which he lived in for 80 years to pay

We all worked hard to buy our homes and a little bit on the side but those that haven't bought there
homes get there fees paid so those who pay are subsidising those who cant pay. So if some get it free those with the same illness should get it free also

I am a main carer for a lady with advanced dementia who now lives with her daughter and son in law.. They have had to use all her savings for full time care and money from her house to keep her out of the care home system... This is ridiculous and a farce as if she had no monetary funds of her own.. She would have had the same service in situ... It makes you at a younger age feel what's the point of working hard all your life and saving......

we need ear marking sufficient amount for research in the treatment of dementia and depression, already lot of amount is spend on the care giving of patients and
their opportunity casts.

Alzheimer’s is an illness just like cancer so why do we have to find our care when cancer and other chronic illnesses are cared for on the NHS

At the age of 62 I was diagnosed with Alzheimer’s. I am coping well currently but I have to rely on my husbands help. It is a growing concern as more people succumb to the disease.

Increasing life expectancy means increasing numbers with dementia.
We need to prepare for this in every size of community.
THIS REQUIRES GOVERNMENT INVESTMENT NOW!!

This illness is the cruelest ever and effects the whole family firstly government Instead of wasting money should employ the best to find cure 20 billion if need be then if your going to charge for dementia then charge for cancer MND and all other debilitating illnesses let see if your prime minister then it is so important a cure is found

I would like MP,s to visit nursing homes to see dementia in its later stages ,
double incontenance, hoisted into lay out chair, no speech, puréed food, challeging and strange behaviours, unable to wash, dress, medicate, doesn’t know family of friends anymore, robbed of all dignity. My mother is like this . It coste £1420 per week in her nursing home . Seems unfair she is paying twice as much as people who are payed for from social. Services . Owner of the home has told us he needs to charge us more to cover their costs?
Mum had no savings but my dad bought their small two bedroom ex council house before he died aged 65 in 1995. They both worked hard and never and dad didn’t even get his pension for very lon before he died, mum is now 86. She has already paid Over £100,000 so not much left . CHC is a mine field to get through ,It needs to be looked at , so confusing , assessors twist and turn every domain to suit themselves so funding is almost always refused but must cost a fortune to administer the asssesment process, we had 4 people in the room with us all getting paid and not even knowing our mum. I would like MP,s to go athrough the stress of one of those meetings .
It maybe to late for my mum , she didn’t want or deserve this terrible illness which is what it is ,
An illness.

We live in what is supposed to be Sheltered Housing. There is someone here with borderline dementia. He needs to be treated with affection and care despite the fact some people find him annoying. Places like this need to have a full time Warden so that he/she may may be more fully aware of the needs of those who live here.

My mum has Alzheimer’s and is in a very good home but is getting worse and she needs one to one nursing but we can’t afford the £2000 plus a week it would cost please please help!

Both my parents, grandmother uncle and aunt had dementia. Trying to care for my parents while working full time in dementia care unfortunately ended in me having a breckdown

It took me two years to find a suitable nursing home for my brother who had vascular dementia. There were lots of care homes but non would take him. Finally I found a place for him just for him to die 2 weeks later. Everything needed for dementia sufferers and family needs a shake up.

Dementia patients need help not more worrying and confusion about what’s happened to their lives care and homes they have worked for all their lives , please is this really fair ,it can’t be it’s cruel and heartbreaking .Please do make this situation a priority I beg you as someone who lives with this pain and suffering every day please help us. Thank you

People who are on drugs and need help rightfully get it but not to the detriment of people who have worked hard and paid their taxes all their life and then cursed with this horrific illness and find they might as well have not worked and made no provision for their old age because the handouts are much greater for the drops out of this country

I lived with my husband and dementia.All the time I was worried about the future.Not only was I living in day to day fear but no one could reassure me about the future and because I appeared to be in control of how everything was going ,the more needy seemed to get what little help there is out there.

CHC funding should be automatic as dementia is a terminal disease affecting every aspect of the way the body functions eventually. Instead families are left undersupported, affected emotionally, financially and in their own health.

Alzheimer’s. Dementia and Mental Care should be covered by the NHS. They all need greater and wider knowledge and cover.

I worry every day that my husband will have to go into Care. If that happens then our finances are split with local authorities taking a huge whack and leaving me to carry on in my home with very limited finance. They will then wait until I die when they will be able to claim our home if my husband survives me. Horrendous way to live. My husband served his country then worked in the Ambulance Service for 30 years. We struggled to raise our family. We should have been better off being spendthrifts.

If I save the government 78,000pounds a year recent headlines how come I have to pay so much for my husbands care when he becomes worse does the government not know dementia is an illness and should be treated as such care should be free

On the other side, my partner has no property and the two homes I was shown for respite which would be funded by Surrey County Council were appalling. No en suite in the rooms and no shower facilities at all in one home. When I asked about en suite the reply was ‘We will show him where the toilet is’ had they forgot he has dementia and will not remember. Where is the dignity in him wandering round in pull up pants looking for the toilet!,

Thats exactly the same as I found when being shown places for my mum.
Basically if you can’t afford to pay you have a place that resembles a prison cell.
I’ve given up my plans for retirement so I can afford to pay for care for mum .

We are at the beginning of our journey with my mum’s dementia and I am feeling very bleak
about the future. It has had a devastating impact on our family so far and my 87 year old dad is spiralling into depression coping with it. They have saved all their lives and will now have every penny taken for mum’s care.

We are trying desperately to keep my Mum in her own home as here she feels safe. I dread the day when we will be forced to put her in a home. We will have to sell her house to pay for it and all her assets . Why should she have to do this when all her life she has worked hard to own her home home and is so proud that she will leave something for her family after she dies.

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