Sandra at home surrounded by paperwork

Sandra’s story: ‘In just two months, nearly all of Mum’s savings had been spent on her dementia care’

When Sandra’s mum’s application for NHS Continuing Healthcare was turned down, she had to use her life savings to fund her own care. Read their story, and why we need a Dementia Fund to fix this unfair system.

Sandra got in touch with Alzheimer’s Society in March this year because her mum, Jean, had been turned down for NHS Continuing Healthcare funding.

Jean, who was diagnosed with Alzheimer’s disease in 2016, had been in hospital after a fall. While there it was decided that she needed around-the-clock, specialist care in a nursing home. She was losing weight, becoming very weak and had to be given fluids through an IV.

The system of support for people with dementia is unfair, unsustainable and needs an urgent overhaul. Its stories like Sandra’s that demonstrate the pressing need for action.

Sandra’s story

‘My mum, Jean, went into hospital after a fall at home in January this year.

‘It became clear to me that Mum needed a higher level of care, and she wouldn’t be able to go home. 

‘I applied for NHS Continuing Healthcare funding, but it was denied, even though at that point she had lost her ability to swallow.

‘Mum was discharged to a nursing home, recommended by social services on 5 March. It costs £1,200 a week. Her care is being paid for through her pension and savings.’

Left in limbo

In just two months (March – April 2019) Jean’s life savings are almost gone. At the time of writing, £10,000 has been spent on her care, with her money being spent at an overwhelming pace, and social services due to step in in a matter of days. 

For weeks, Sandra has been trying to find out how much social services will contribute to Jean’s care, once she can no longer afford to pay from her savings. The process has been fraught with difficulty, and Sandra still doesn’t have clarity. She has also been asked by the nursing home to sign a form committing her to paying top-up fees – if she doesn’t, Jean may be forced to leave. 

Left in limbo, Sandra doesn’t know how much she’ll have to pay, where she’ll find the money and whether her mum will be able to stay in the nursing home where she is recently settled. 

‘In just two months nearly all of Mum’s savings have gone. I’ve been asked to sign a form that commits me to paying the top-up fees when the money runs out. I don’t know where I’ll find the money.

‘I really don’t want to move my mum, as the care home is good, and she’s settled there.’

Sandra standing with crossed arms

Sandra's mum is paying for her own care out of her savings, but the money is almost gone

Healthcare lottery

Sandra’s experience is much too common, yet social care reform is at a standstill. The Government’s Green Paper on the issue was recently delayed for the fifth time in just over two years.

For too many families, the situation is desperate. Good care is hard to come by and often eye-wateringly expensive. Over the past two decades, the average cost of a nursing home place has almost doubled and is now nearing £1,000 a week.

People with dementia are at the mercy of a health lottery, forced to spend all their savings on care unlike those with other diseases whose treatment is paid for by the NHS. 

We need urgent action 

Families and carers of people with dementia can’t wait any longer. 

Alzheimer’s Society is putting forward new proposals for a Dementia Fund in this year’s budget. The Fund is designed to shore up the system and give people with dementia greater access to affordable, specialist care. 

The Dementia Fund would provide urgent funding, giving families a financial buffer that means fewer people will spend all their savings on care. People with dementia should be able to access care based on their diagnosis, rather than their finances. 

Why should Jean and Sandra have to struggle without the financial support they need? Help us to make sure people with dementia and their families get the help they need.

Will you support the Dementia Fund?

Stand with us by emailing your MP and demand the Government takes urgent action through a dedicated Dementia Fund.

Email your MP
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53 comments

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Our family are going along this path right now . Unfortunatly i ts both parents Each week we are facing new challenges in their care. As like a huge majority of people its taking its toll on their, and our own health and well being in caring for our loved ones. Also distressing added problems with funding care. This type of care or any sort of care, has such a devastating domino effect on everything with carers
. Where to begin.! !Extra funding however the amount would go a liittle way in easing the situation..and in turn would benefit carers own health and well being, so they would be able to carry on taking care of their loved ones.
There is not a bottom less pit of funding . Long term it could be addressd by paying slightly more into our pension. Which could be set aside for finnancial help in our own elderly care to ease hardship. In the short term now extra funding needs to be directed to carers as soon as possible . Thank you for reading my comment

If you are on low income and depending on the level of care required, it may be possible to pay a percentage of the fee and the government to provide a percentage, but it does depend on financial circumstances. Also with severe cases, it maybe possible to have the care paid for, but it is all ifs and buts I'm afraid.

All my mums savings have now gone , it’s a disgrace, this is a growing disease, over 850,000 people suffering, more needs to be done

this was the reason we decided to look after my MIL who was diagnosed with vascular dementia , she came to visit at xmas and did nit want to go home so we decided to sort the spare room for her. Our daughter was at uni so only came back in holidays. I was a childminder and worked from home so we decided if i had to give up work when she got worse i would as she did not want to go in a home and use her hard earned savings to fund it. the only time i gave up was in the last 2 weeks of her life .i just did not take on children when they when off to school so had time during day to look after her. She died peacefully in her sleep in her own bed with her only family holding her hand . Me and her son. We nursed her for 3/12 years . took her on 2 holidays one to greece as she wanted one last good holiday . She died with no bed sores , and no pain as the local GP was very understanding. If i had to i would do it again.

my mum was diagnosed with vascular dementia, we kept her in her own home for as long as we could, but in the end she had to go into a residential home where she spent just over a year. because she has savings she had to pay for her own care, costing her over £2000 a month. It took alot of her savings to keep her safe and in the home. the last two weeks of her life she was sent to a nursing home, only then was her care paid for my the government. we then lost our mother to this terrible illness. it's not about the money at the end of the day, but getting the best care and help needed. not only for the person who is sick, but for the family who are trying the best to struggle to look after them. we had no idea how devastating this journey would be. I stayed with my mum day and night for four days until she passed away and I'm never going to get over how she suffered the last few months. The government need to do so much more in so many ways !!!

You should be proud of yourself sadly a lot of people don't get this

It’s time the government forced the NHS to recognise late stage dementia as a primary healthcare need. Any other illness you can make use of hospices.

I’m pretty sure hospices are funded by charity and not the government. Perhaps a similar charity needs to do the same, it may be the only way.

Absolutely agree, the government must force the NHS to recognize dementia is a primary healthcare need. Its no different from cancer, its TERMINAL because the sufferer NEVER recovers, and just like cancer gradually fades away. Why should sufferers have to lose their house and all their savings just to be cared for when they are ill. Scandalous

I think it is shocking the way Alzheimers Dementia is treated the NHS should provide care but the insist of putting you into a care home my husband needs specialized care with his Alzheimers and they have nowhere to put him so he is in a mental health ward locked unit hours vist in afternoon and evening its shocking NHS should be made responsible to provide the care they need my husband has been totally failed by Government and NHS no dignity in dying it upsets me so much and more should be done about it I have wrote to Government Ministers Social Care still no answers

This is utterly appalling for all concerned. Not only is the funding issue a disgrace, it can be a lottery finding a home that will properly care for loved ones.

We had the same with my dad using his savings. Sadly he passed away earlier this year and we had to move him as his needs medically progressed with the disease. You are also conscience of the appropriate nursing home you can afford.
The best was beyond our reach however he was cared for well. It doesn’t pay to have any savings in the bank as you get older I’m sure going to spend mine or give to my children so I can see there pleasure before and whenever I leave this world

I would sign up to this but not sure how to do it. I am completely supportive of this petition as I too am a carer caring for my husband with young onset of dementia

Hi Kay, thanks for your support.
Sorry to hear you're having trouble - have you visited this page? https://e-activist.com/page/42504/action/1
There's a short form on the right-hand side which will find your local MP's contact details. Once you've filled that in, you just need to press 'Edit E-mail and Send'. You can then see our suggested response which you can edit however you like, then press 'Send E-mail' to contact your MP.
Let us know if you have any more problems, and thanks again for your support!
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Alzheimer's Society blog team

My mum has been in a home since Oct 17. She has used all the money from the sale of her home for care. The fees are now over £4000 / mth. Its heartbreaking. Social services have been informed we are at the threshold. Not heard anything yet. Such a difficult period to go through. She has vascular dementia. So glad she doesnt understand whats going on. She will be 93 this year.

After caring for our mother at home for the last 4 years we made the heart breaking decision due to her progression of Alzhiemers and myself & sisters didn't feel able to give mam the care she now needs we found a lovely home that can and does take good care of mam but like a lot of others we are struggling to find the funds to keep mam in the home savings have just about gone and our social worker hasn't been a great deal of help in letting us know what help we can or cannot get. Again like others we are grateful our dear mam isn't aware of any of this she would hate to see us struggling in this way. I am 100% in favour of getting this pushed through with the government

My mum was diagnosed in 2017 with vascular dementia. She had to go inyo a residential home. It was impossible for me to give her the care having a 2 and a 10 year old and working too. Her house was sold and the money from that is diminishing fast. The whole matter is extremely stressful for all concerned.

Shocking that the state cannot support these people.

I obtained full funding for my mother although she did not have dementia . I could not have done it without the help of the nurse who told me what to write though. I did have to appeal and won the appeal, but I think it must be a postcode lottery. I do not see the difference in my mother requiring full time care but not having dementia and someone needing care due to dementia. Its all illness.

It really is the most awful position to be in, watching your parents struggle. One of my parents is in a nursing home and is declining in health quite quickly with Lewy Body Dementia. All of the pension and savings is paying for the care and my other parent is having to pay a weekly top-up fee and is having to watch how every penny is spent as funds are running out. It truly is heartbreaking to see your loved ones having to struggle both financially and coping with the devastating impact of this cruel illness.

Hello Helen. My dad had the lewy body dementia which I know how very bad it is and heartbreaking. This tupe of dementia includes hallucinations and can make the kindest gentlest person agressive. Unfortunately my dad was sectioned 3 times. We applied for continuing healthcare but dad died before we got it.
My SIL and myself applied to get it back. It took us 5 years and a lot of heartbreak. We went through all the stages with the local CCG who deal with it and finally went to the Independent Review Panel and won.
This dementia made dad psychotic and he was prescribed anti psychotic drugs and this is another medical condition so that was our basis for reclaiming.
We started with a specialist solicitor but once we got our heads around it managed it ourselves. The CCG showed us a form which explained the different levels of care eg no needs, moderate and severe. You can have copies of all your loved ones notes snd if you can prove severe in 2 sections you get it.
It took a long time and was a lot of work and heartbreak but my dad would not have wanted us to do any less.
I wish you well

I went through this 6 years ago. Because mum had some money saved we paid £600 a week for her care after a fall and a lengthy stay in hospital left her unable to walk. Not enough support or advice available.

This is heartbreaking and disturbing in equal measure. This disease/ condition is devastating for all involved. Come on priorities UK . My thoughts for all who are going through this situation.

My mum has vascular dementia and she had to go in a home
All her savings has gone and her bunglow had to be sold
Lovely home and Carers But just down the corridor is a much bigger place ,
Bigger rooms , bigger dining rooms , more a actives
But you are only allowed in there if you are helped by the social
Mums private and her room is so small
And dining room
Only one staff for 6 people
This home is owned by Norse
This is so unfair they continue to charge my mum over £3000 a month
Because she has money from the bungalow , social won’t help
Government rules

My widowed mum was diagnosed with vascular dementia in 2013 and rapidly declined. 18 months later she was admitted to a lovely care home, the £900 weekly cost of which being met by the sale of her house, with a £250 per week contribution from the local authority plus her state and private pensions. We received increased LA assistance up to a capped amount once her capital reduced to £26250 then once only £16000 remained we would have received full funding, again up to a capped amount. Sadly we lost her last summer to this terrible illness. My heart goes out to anyone who is in this situation but as far as I’m aware no family members should ever be asked to pay top up fees. The local authorities do cap how much they pay but at no point did the care home ask us to pay the difference.

Continuing care - “clinical commissioning groups are not experienced enough to make assessments. You should appeal. If you get a refusal record the assessment meeting. GP records should be taken into account. It could be illegal to be asked to pay top up fees if you are on continuing health care. CCG’s are ignoring the rules. If you are living in your property when one of you dies you do not have to sell your home to pay fees”. Lisa Morgan -
Solicitor, allegedly said

With five family members past - and present, who have needed years of extremely expensive care, I would be the first to plead for more money and support.
Dementia is the most cruel of conditions and heartbreaking to witness.
Family members are tested to the limit, and so are the financial resources.

My ex husband has Alhzeimers and almost ready to go into a home...he has only his pensions but has worked hard all his life, the goverment needs to fund these people !

My dad was a hero in WWII and used his war pension with his savings to pay for the last year of his life in a decent nursing home. I looked after him for 4 years before this and did things for my dad I never thought I would have to do. This is a terminal illness and should be covered by NHS continuing care the same as cancer patients. Maybe one day it will be. But no one wanted to know 4 years ago after letters and meetings with doctors and carers. But was refused funds. Its a nightmare for family.

My mum (85) deteriorated rapidly last autumn, very distressing for my 90-year-old dad who was in total denial. Like many others after 3 infections and stays in hospital, we have had to fund 6 months of double-up care three times a day for her to stay at home bed-bound. The hospital stated she had full capacity as did the district nursing team (notwithstanding she was unable to stand, converse, feed herself or keep herself clean). Initially, she was turned down for Continuing Healthcare Funding. However when I advised the solicitor had stated she did not have capacity we suddenly seem to have had some movement added to which sadly her condition has deteriorated more. Finally, after 6 months the funding has been fast-tracked. I can only assume this is because they do not feel she has long to live. District nurses are now coming in daily and because she is bedbound, with increasing sores, unable to do anything for herself there will come a point she will need to go into residential care which will kill my dad. The whole process has been awful and it seems one has to push to get assessment for CHF and the District Nursing/Social Work team seemed a) suprised to be asked to assess, b) dragged their heels to undertake this. My mum clearly has vascular dementia but no diagnosis has ever been made. Her brother (90) was recently diagnosed but had to be taken 25 miles to the nearest assessment centre which is crazy.

I’ve just applied this week as my dad has reached 27000 enough for one more payment. He’s been paying since November all his money gone, he hasn’t a clue. Now he’ll get £23 pocket money, how disrespectful! He could have another good 10years to live on that handout. So incredibly sad.

I would love to sign this petition to my MP. Unfortunately, I already know that he won’t pay it any credence, as I went to see him two years ago when my Mum was refused funding. We were forced to sell her home and in total pay £110000 for her care.
The Government and Labour do not have a clue how to sort this issue.
It’s so wrong that people with self inflicted health problems get funded ie smokers, drinkers, drug users and obese people. None are diseases unlike dementia 😡😡🤬🤬

I agree with you Martin. It also seems grossly unfair that prisoners and their families aren't made to pay for their care and accommodation. It's all completely free for the prisoner, who has done wrong, and the cost is borne by the taxpayer. How is that equitable? It is discrimination against people who are suffering from a disease of the brain.

I've been in a similar position with my mum. I fought to keep her at home, eventually because of lack of sleep I gave in. We shared costs with LA, refused CHC funding. Mum had the most hurrendous fall because there was no one around staff on handover. Her behaviour was off the scales through the injury and no home would take her, hospital consultant put in place CHC funding with 12 hours a day 1to1. Mum lived another year. What angers me is CHC funding was not granted while at home with me it cost mega bucks for her care eventually, half of which I could of recruited a second to none service and kept her with me.... good luck everyone your stories need to change the current practice. Love and hugs to all xx💖💙💖💙

This is a terrible situation which will unfortunately continue to worsen.
A comprehensive review and overhaul of the system is definitely required.

Following a social services assessment a care package has been put i n place for my 98 yr old father who has dementia.
I have been looking after him alone for 15 yrs. The allocated care package is 4 visits a day. In that time he has had very few showers not enough of fluids and is completely disoriented by 12 different care workers who come and go.
I was at breaking point when I asked for help but the situation now is such that it would be easier and better for dad to not have Carers coming into his home.
We need to provide a N.H.S. funded care service not driven by profit as these so called care agencies are.

I've applied for this benefit on two separate occasions for two different people. It seems to be routine to have the original application refused. As long as all necessary details are in the original request, then when you make the appeal you have to elaborate on what has been written in the original . From what I remember, nothing new can be added in the appeal. Every detail of the refusal needs to be addressed. It is a nightmare dealing with this particular benefit . In my own opinion they don't appear to want to allocate this to anyone. I did get it for both people, however, it did take about 15 months and many hours of hard work.

Thank you for exposing the shameful lottery existing in our Health Service regarding applications for NHS Continuing Healthcare. I have been campaigning since 2016 to help people obtain their Right to financial benefits which are not subject to a means test from NHS. The health condition has to be "complex" but knowing how to make a claim properly is vital to get the desired outcome. Alzheimer's Society have a link to my website set up following the death of my Wife Pauline. She had Alzheimer's Disease & I was not coping on my own in our Home. I was forced to Appeal but won our Rights which enabled the best possible care to be provided for the rest of her life!
Full details are on https://continuinghealthcare.wordpress.com/
Thousands of people have visited this website & received help. Several known to me are getting funding for Nursing Homes charging £1350 every week! Its cheaper if you are able to cope at home of course but space is needed for cover 24/7.
Good luck with your claims for essential help from NHS. Its a shame you have to fight for your rights but that's what is currently required.
Peter Garside

Thanks for sharing, Peter. We hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
Take a look at ‘Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and download our free booklet for further information.
-
Alzheimer's Society Blog Team

Please put www. at the front of my website as it doesn't link at present.
Thanks.

Peter Garside

Hi Peter, both links have been fixed - thanks for spotting that.
--
Alzheimer's Society blog team

My mother has spent 80 thousand to fund her own health care in last 2 years now she is down to 23 thousand and still having trouble with means assessment

I’ve been through this too. Ultimately my mum was ‘lucky ‘ in being granted CHC, which was simply because her condition was variable and unpredictable. It’s deeply unfair that the criteria isn’t severity of need but variability. I recommend using savings to buy an annuity to cover care fees. This worked out well for us, as it covered the period we had to self-fund, and now is providing additional income.

With a MIL suffering from vascular dementia for five years we are getting to the point of needing a care home. With this country willing to spend vast amounts of money on the equality of the population, how come a very sick dementia patient is not equal to a cancer sufferer..it seems that our government is so taken up with Brexit that we have been ungoverned for three years.. it really is a disgrace that those who paid their taxes all their lives are the ones to be ignored and they and their families are put through impossible financial demands in order to allow the truly desperately sick to have a comfortable and cared for end to their lives.

Local authority funding is available once saving go below £23,500 you need to apply in advance as once the money has been spent its very difficult to get it back. Continuing health care funding is difficult to obtain the criteria is aimed at people with unpredictable complex long term conditions who need support which goes beyond the local authority responsibilities. The criteria needs to change and the Government recognise we are at the beginning of a dementia epidemic which can affect anyone of us.

We have a similar story. My mum collapsed earlier this year and was taken to hospital. Whilst there social workers decided she could no longer live alone and recommended she be moved to a care home nearer me. To be honest a huge relief for me. She lived in Essex , I’m in Kent, constantly driving around the M25 was taking its toll on me!
She is now in a home closer to me, however to find her care I have had to increase the number of days I work - just when I was hoping to retire!
She has no money and never owned her own property.
The council pay half the fee and I signed an agreement to pay the top up fund,
I’m constantly worried about how long I can sustain this.

We too face a similar situation with funding. My wife has been in a nursing home for 5 years now and we were initially self funding for her care. Later she started suffering from seizures so applied for CHC, which after an appeal was granted. Lat December a review was undertaken and as my wife had not had any seizures for around 18 months the funding was withdrawn. I appealed and lost so we are now self funding again. The decision to me seems to be based on the fact that my wife although totally immobile, doesnt speak but is compliant and quite passive is no trouble and seems quite well. No account is taken of what happened in the past nor of what might happen in the future. I am going to ask for a reassessment as I think that her dementia is well managed and under control we are penalised for her having good preventative care. Totally unfair in my view.

Something seriously wrong with this assessment Sandra as it's clear that your mother needs CHC and I suggest you seek advice from a solicitor.
No one should have to bear the anxiety caused by the so called assessment people who seem to have no empathy.
Our government give app fourteen Billion pounds to foreign aid every year without knowing where the money will end up.
We also give app ten billion to the European Parliament every year.
How much does it cost to pay for the House of Lords filled with people who have had a privalidged life.
One could go on and on about the wastefulness when people like you require urgent help.
I am 76yrs old and have just been down the road you are going down caring for my lovely wife who I have to feed,dress,wash see to all toiletry needs as well as clean the house, washing,ironing,shopping etc without any respite unless I pay exorbitant costs.i can't have a conversation with her and I take her out in a wheelchair.
My heart goes out to you and everyone who has this dreadful disease and their carers

I couldn't agree more Bill the UK Health Service is broken & needs reform urgently! Unfortunately none of our Politicians are brave enough to even publish the Green Paper promised about 3 years ago. They have cause to worry about their jobs at the next General Election. They are unable to keep their promises about BREXIT, or speak the truth about what is serious to people like you & your Wife.
I am doing my best to campaign about CHC which is what you both need, & have paid your taxes over the years to get. My website details are given above in mid May.

Best wishes. Peter Garside

My mum has mixed dementia and we’re going through this. We have a good labour MP who’s signing this EDM and has been very supportive. If you voted or continue to vote Conservative this is the sort of NHS you get. Put aside all the rubbish and lies written about Corbyn in the right wing media and for once let’s give a caring Labour govt the chance to put things right. They created the NHS and will fix it.

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