Dementia Support Line
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?
We need plans for long-term reform of the care system 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 number of people living with dementia is also expected to increase. There are 900,000 people with dementia in the UK, with numbers set to rise to over a 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 Cure the Care System campaign aims to end the injustice faced by people with dementia in the care system every day.
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 August 2021.
Janet Collings
saysWendy woodhead
saysMark young
saysJenny
says
Alzheimer's Society
saysHi Jenny,
We're sorry to hear about your experience. Care funding is difficult to navigate, and we continue to campaign for a fairer system.
If you believe the decision on CHC is wrong, you can appeal. Beacon can provide up to 90 minutes free advice on this process, which you can find here: https://www.beaconchc.co.uk/how-we-can-help/free-information-and-advice-on-nhs-continuing-healthcare/
You can find more information in our publication ‘When does the NHS pay for care?’. You can download the PDF or order a copy by post here: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/booklet-when-does-nhs-pay-care
You can also contact your Local Authority for more information and support. Although they have no duty to meet the care needs of self-funders in residential care, they do have a duty to provide information and advice. Paying For Care have a tool on their website so you can find average residential care costs in your geographical area: https://www.payingforcare.org/calculators/
If this is substantially lower than your dad is paying, ask the local authority for guidance on alternative homes which could meet your dad’s needs for cheaper, if a move was in his best interests. This is what the Local Authority would be doing if they were under a duty to meet his needs.
You may also wish to challenge the care home prise rise if this is not clear in their contract terms. The Competition and Markets Authority (CMA) has some guidance on this available online: https://www.gov.uk/government/organisations/competition-and-markets-authority
We appreciate none of the above options are ideal, or stress free. Please know that you can always call our support line on 0333 150 3456 to speak with our trained dementia advisers. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Jenny.
Alzheimer's Society blog team
Jay Linsey
saysGillian Courage
saysFrancesc Giani
says
Alzheimer's Society
saysFrancesc, we're very sorry to hear this - it sounds like a very stressful time.
We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to you. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
You may also benefit from joining our online community, Talking Point. Here people affected by dementia can share their experiences and offer advice to others in similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
We hope this helps for now - and remember to call the support line on 0333 150 3456 if you need someone to talk to.
Alzheimer's Society website team
Andy Whyte
saysMy father has been in a care home with dementia since last October, we were paying £1250 per week, we have just had a letter informing us that the fees will increase by £450 per week over an extra £70/day, how can they justify such a huge increase? Have other people experienced such massive rises?
Sheila Smith
saysZena Travers
saysMy mom has just been diagnosed with vascular dementia she has no savings or assets xx how would we be expected to pay for care XXX world we need to pay
Hello Zena,
We're sorry to hear about your mom's recent diagnosis - it sounds like a really worrying time for you.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss the situation. 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/dementia-connect-support-line
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
Alzheimer's Society blog team
Sue Wilson
saysI moved in with my Mum who has Dementia during Covid to look after her until she had an infection and ended up in hospital and then went straight to a care home as it was no longer safe for her to come home. It was agreed that Mum would receive a Nursing Care Allowance but the care home fee is £1250 a week without the NCA being taken off and as she has savings and a house she is self funding but it is scary about what happens after the money runs out even though that won't be yet it will constantly be a worry. I just want Mum to be looked after but when you add the cost it is just frightening.
David Pinchbeck
saysThe gov.com has thousands of faceless people on there payroll,one crisis worker said when visiting my wife "i dont know what i am doing here" i just visit carers to see how they are getting on.
Its like a plumber coming to your house to mend a leak with a tube of toothpaste (Stupid and a waste of money).
David Pinchbeck
saysMy wife has zero capacity with late stage alzhimers,we built up a sucessful business employing 100 people,it costs me £200,000 a year to support my wife.
I am considering selling my business to a overseas asset stripping company who will lay off most of my hardworking employee's.
How has it come to this !!.No one wins my poor employee's will suffer from a rotten to the core govenment and it has been the same for both political parties.
David, we are so sorry to hear about the difficult situation you are going through. It must be incredibly tough.
Would you be interested in telling us more about your situation? We’re doing everything we can to ensure dementia remains a public and political health priority. Sharing your experience could make a huge impact.
If you’re happy for us to contact you by email, you can either post a reply to this comment or let us know by contacting [email protected] and we’ll go from there.
We hope to hear from you soon, David.
Alzheimer’s Society Campaigns team
Philip George Croft
saysWell, this is an eye opener, some of these cost figures are beyond belief, and frightening. You could stay at the Savoy, for this money. I co-own my house, sharing ownership with a relation, who has dementia. legally, I am secure here, till i die. but if I agreed to one of those arrangements , where any financial 'help', now, is clawed back when i die ? then all my family member's, who's benefits, are willed to, could end up with nothing . Am I correct in thinking, that the savings -and property, of other, close relations, will not be taken into any consideration for financial help from --the N.H.S or whoever ?
Pat Nixon
saysWhat 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
Mary
saysLooking 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
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
Kenneth Russell
saysmy 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
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
David Pinchbeck
saysWhen someone has reduced mental capacity it is essential the family get financial and health lasting power of attorney loged with the appropriate goverment dept.
This will put the attorney's in control which will stop issues the will help people considered not "sound of mind" be protected via the uk law by family and freinds.
Robert Read
saysI 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.