Dementia Support Line
Information
How much does dementia care cost?
The total cost of dementia in the UK is £42 billion. It is estimated that 63% of these costs are shouldered by people with dementia and their families. The cost of dementia in the UK is set to rise to £90 billion a year by 2040 unless action is taken.
How much does dementia care cost in the UK?
People living with dementia often face catastrophic care costs – an individual with dementia spends an average of around £100,000 on their care over their lifetime. Dementia can be complex and involve symptoms that need tailored support. This means care providers often charge a premium rate for dementia care.
Dementia care is on average 15% more expensive to deliver than standard social care. This isn’t covered by the NHS, as many people might expect.
Increasing numbers of people living with dementia
There are currently around 1 million people living with dementia in the UK. By 2040, there will be 1.4 million people living with dementia in the UK. This is an issue that is not going away, making it all the more important that we fix the injustice in the system as soon as possible.
People affected by dementia form a significant population of social care users. A system that’s fairer for people living with dementia is better for everyone.
The social care system needs sustainable reforms that result in people living with dementia being able to get high quality and easily accessible social care. This must be provided by a social care workforce that is appropriately trained in dementia, to at least tier 2 of the Dementia Training Standards Framework, or equivalent.
The care system must be backed up by long-term sustainable investment across the sector, underpinned by a funding model that is centred on achieving affordable care for everyone living with and affected by dementia.
Reforming the social care system for dementia
The current social care system is not set up properly to deliver care that meets the needs of people living with dementia. There is hope for the future for dementia with disease-modifying treatments in development, but we must also focus on help for today and for those who will not be eligible for such drugs.
Many people living with dementia will continue to be reliant on the social care system to help manage their symptoms. They will continue to require accessible, high-quality, affordable, personalised care. It is therefore vitally important that the current and future care system is fit for purpose.
Campaigning for improvements to social care for people living with dementia
Improving social care for people living with dementia and their carers is a priority for Alzheimer’s Society and we are calling on governments in England, Wales and Northern Ireland to deliver these three things:-
- A long-term strategy in each nation to cultivate a skilled and supported workforce equipped to deliver high-quality personalised dementia care. This must include mandatory high-quality, evidence based dementia training for all care staff supporting someone living with dementia.
- More support for unpaid carers who should be proactively offered an annual needs assessment by local systems and be able to access sufficient dementia-specific respite care.
- A sustainable funding model which pools the risk of care costs across society to ensure quality, personalised care is accessible to everyone living with dementia.
Get involved to help us call on governments for change
We rely on our campaigners to help us to get attention from people who can make meaningful change happen. Becoming a campaigner can involve signing and sharing our petitions, writing to your MP, or attending parliamentary events.
Together, we can make a difference to the lives of people living with dementia, their loved ones and carers in the UK.
Will you help us Cure the Care System?
Let’s make sure that people with dementia are able to access the care they deserve, when they need it. Become a campaigner today.
This article was first published in February 2020 and most recently updated in June 2024.
Elizabeth Owen,
saysYou haven't even mentioned the refusal of Social Services to alllow an 'off his feet' Alzheimers victim to go in a Care home leaving his 80 year old wife to care for him with 8 Carers a day to lift and turn him. She is expected to do everything else.: shopping cooking, laundry , nighttime care,.......... costs so far for Carers is 8x14x7 . You do the sums.
. What quality of life will they have?
Jacquie
saysI don’t think it is helpful to give the impression that the costs of dementia care are always related to care home feeS. My husband died recently at the age of just 69 from Alzheimer’s. I cared for him at home and the costs of the very small amount of care we had - 2 days a week of day care near the end and occasional weeks of respite - cost over £100,000. Add onto that loss of income - we both had to give up work when he was diagnosed, plus special supplies and equipment and the overall costs were immense. It’s not always about residential care.
Peter Williams
saysHaving gone through this whole process now with my mother I have lost all faith in our political system. I wrote to my MP a number of years ago while the Dilnot Report was being considered. He passed my letter onto the Minister in charge at the time who assured me that action would soon be forthcoming. Such action was of course delayed and then abandoned! Several ministers and several years later nothing has happened to alleviate the grotesquely unfair system which discriminates against those with dementia and Alzheimers Disease. As a social worker commented to me; 'you have to be near death to get CHC'...even the recent award of c.£160 a week nursing care fund goes straight to the nursing home and is not deducted from the £950 a week fee my mother has to fund. Her move from care home to nursing home after a fall and broken hip has ended up costing her more per month which again seems unfair! With over £120,000 spent on care so far the whole system needs to be related to actual income rather than a single notional savings level of £23K. This would be based on common sense and fairness...sadly our political representatives do not understand such concepts!
MRS Karen Ashton
saysMy husband as dementia and alzheimer's ,Oldham council would only give my husband 8hrs a week,that's if I paid them £464 a month and that's only for someone to site with him,I refused
2 weeks ago my husband fell all the way down stairs,broke his pelvis,aspirated and ended up with pneumonia,I nearly lost him 3 times. Thankfully he is on the mend,12 days ago Oldham social services where contacted by the hospital to put a care package in place for my husband,the hospital and my self are still waiting to here
Rob Peachey
saysWhat is there to say? I have started Alzheimer's so am on the way. I think my only route is to seek the best way to commit suicide before I get there . I don't want my life savings handed over to a greedy No 'Care' Provider. Rob Peachey
Christine Dunn
saysSo sad, criminals are treated better, prison fees paid for & no doubt a better standard of care.
M.Price
saysI am a full time carer for my hubby for the past 7yrs and when I applied for respite care for him found I had to pay almost £600 for one week the council paid towards a second week..It makes you reluctant to make a request for more respite when you desperately need it again !!
Chris Archer
saysIt is the fact that one person with dementia must pay £100'000's towards their care and others are being subsidised by them. I am not saying that the vast majority of those being subsidised have found themselves in a financial position they could have avoided but when I see my mother lying there in a bed, in a nappy, unable to feed herself or communicate properly and having to pay around £1,000 per week for the 'luxury' of being kept clean and fed I get VERY annoyed by the system.
I only found out after she had to be admitted to a care home that my dad had done those 'duties' for about 3 years. Sadly he became terminally ill just after she was admitted and died soon after. But he would have not been alone in NEVER asking the state for a penny as he felt it was his 'duty' to care for her. It's a pity that the state doesn't feel the same way.
And that it isn't doing anything about the rip off for the allowance she (and many others) will get such as Nursing Care which, when it was brought in under Blairs government, was meant to contribute TOWARDS a persons overall care costs but the system allows care homes (most of who are private and of course profit making) to add such allowances on top of care fees.
Rant over for now.
Alan McGee
saysToo be honest, it feels like successive governments have used this part of health care to find another way to tax the vulnerable. Any other form of health care is covered through our amazing NHS. I have a mother in this position now, and it feels they are now stealing money from an amazing person, who worked all her life on the message, work hard save and protect your future. Only to have it taken from you at your lowest point, end of life.
This is a forgotten health catastrophe that is now getting out of control.
Better to work, spend your money, do not buy a property just rent. Otherwise dementia is just a death tax.
Very despondent with all of this.
Janet Reed
saysIn my view as a past advocate for an unfortunate man needing CC funding it is a farcical procedure. After ten years of funding this poor man had his funding withdrawn as was deemed to have improved, despite a significant change. (No longer able to walk). All this meant was the cost had to be met by Social Care and self funding. He passed away two years later. It was all about money!!
Peter Garside
saysThank you for this campaign & the helpful advice provided by your Society. The Pointon Case proved that NHS will pay for Care Costs when looking after a loved one at home with advancing Alzheimer's Disease. Details are on my website at https://continuinghealthcare.wordpress.com/
Barbara Pointon is a supporter of your Society & her example enabled me to fight NHS at Appeal to do the same for my late Wife Pauline. NHS do a wonderful job caring for people with acute health needs. They are less effective in my opinion caring for people with long term needs. This is what "Continuing Healthcare" benefits are paid to provide. Funds are needed in this part of NHS to get more people nursed in their own homes, & essential help for the family members who can no longer cope on their own. Please campaign for this benefit as well as a better Social Care system. NHS benefits are not means tested which is how it should be if dealing with health issues in a compassionate society.
Best wishes. Peter Garside
Anonymous
saysGood to hear from you again, Peter - thanks very much for your comment.
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.
We recommend visiting our page on 'Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and downloading our free booklet for further information.
-
Alzheimer's Society blog team