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.