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.
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.