How much does dementia care cost?

Many people affected by dementia face catastrophic care costs. Our video tells the story of one such family, who have been battling the social care system to get support for their husband and father, who has dementia.


As this video shows, people with dementia pay more for their care than those with other conditions. 

This is due to the fact that dementia costs are often associated with care, as opposed to treatment. Care is not provided on the NHS, but rather through the social care system. 

How much does dementia care cost in the UK? 

At the moment, people with dementia have to fund the complete cost of their care, unless they have assets of less than £23,250. This means many face the daunting prospect of spending everything they have on their care, until they spend under this limit. 

'The total cost of care for people living with dementia is typically £100,000, but can cost as much as £500,000.' 

The cost of dementia to the UK is currently £34.7 billion a year, which works out as an average annual cost of £32,250 per person with dementia. Two-thirds of this cost is currently being paid by people with dementia and their families, either in unpaid care or in paying for private social care.

Why does the cost of care fall on people affected by dementia and their families? 

Dementia can be complex and involve symptoms that need tailored support. This means care providers often charge a premium rate for dementia care.

These extra costs are on average 15 per cent more than standard social care, and we have seen cases of it being up to 40 per cent more expensive. This isn’t covered by the NHS, as many people might expect. 

Even funding meant to cover both health and care needs, such as NHS Continuing Healthcare, is often out of reach for people with dementia. Instead, people affected by dementia who need care end up paying more.

What happens if people affected by dementia don’t have the funds to pay for their care, or if their money runs out?

If people in need of care have assets between £14,250 and £23,249, then the local authority will contribute towards their care, with the individual paying the remainder. If the individual’s savings fall below £14,250 (in England), their savings are no longer taken into account, although other income such as benefits and pensions are counted. 

If you run out of money, your council should start covering the costs of care. However, local authorities often pay a lot less than care homes normally charge, due to their tight budgets. If you can’t make up the shortfall through your own contributions, you may have to move into a different care home.

If all your money is tied up in your property, you can apply for a deferred payment scheme, where the council pays for your care home and you repay it later when you choose to sell your home, or after your death. If you think this is likely, you should contact your council at least 3 months before you think your savings will drop to below £23,250 and ask them to reassess your finances. 

Councils should provide funding from the date you contact them, and reimburse you for the waiting period. You won’t be reimbursed if your savings are less than £23,250 before you contact them.

What does the social care system need? 

To Fix Dementia Care, we need plans for long-term reform to begin immediately.

'These plans should include free universal care, funded like schools and the NHS free at the point of use, and includes the cost of complex dementia care.'

People affected by dementia form a significant population of social care users. A system that’s fairer for them is better for everyone.

The prevalence of dementia is also increasing in coming years. There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051.

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.

What is Alzheimer’s Society doing and how can I help?

The social care system is unfit and unfair for people affected by dementia.

Alzheimer’s Society’s Fix Dementia Care campaign aims to end the injustice faced by people with dementia in the care system every day.

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You can sign up to hear more about the campaign, and what you can do to help.

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This article was first published in February 2020 and most recently updated in July 2020.

16 comments

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What a mindfield ....I hoped to keep my husband at home but in the recent weeks he has deteriorated so much I am finding myself in a VERY difficult situation ...last week I only had one nights sleep ...Now comes the wait for an assessment ...indeed even a wait for a social worker ....I don't dare to even think which homes to go & look at until I know how much help I am going to get .....Interesting reading Thankyou

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Looking for advice. Please. My mum is 82 diagnosed with vascular dementia. Up until vivid 19 she still worked p/t in a supermarket, she had hete routine. Now of course that routine has gone and she is getting very confused. The one person she trusts is her grandson who lives with her but now my family are trying to get him out saying they will not get help with care for mum if he is there. She is a very independent woman who is having lapses in memory but other than that is fit and well. Eats sleeps very well. Please advise thankyou in advance. Mary

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Hello Mary,
Thanks for getting in touch. We recommend speaking with one of our dementia advisers to discuss the situation with your mum and how to best care for her. They will be best placed to provide you with advice and support. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
Wishing you all the best, Mary.
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Alzheimer's Society blog team

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my wife has vascular dementia and has been in a nursing home for two years entirely self funded ,out of our savings pot , the available money is about to run out, however my wife does have an account in her name which i have applied to court of protection for access rights. After twelve months i am still waiting for this,so i am getting desperate now there does not seem any one i can complain to about these cowboys at the court, although its our money they seem very reluctant to give much needed access to it
The nursing home fees are over £4000 per week so i an now at the point of desperation, your advice please

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Hello Kenneth,
We're so sorry to hear about the difficulties you and your wife are facing right now.
Our dementia advisers are available to listen and give you support and advice. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
Wishing you all the best, Kenneth.
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Alzheimer's Society blog team

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I also am in my eighties and have been caring for my wife for over seven years. My wife cannot stand, or speak and is double incontinent. She had the CHC test but was rejected, I now have to pay for care at £80 per day to assist me as I wish to care for her at home as long as possible.

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You 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?

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I 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.

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Having 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!

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My 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

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What 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

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I 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 !!

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It 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.

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In 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!!

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Thank 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

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Good 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.
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Alzheimer's Society blog team

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