Did someone say dementia tax?

Dementia tax refers to the enormous injustice in the care system for people with dementia. We want the Government to fix dementia care once and for all.

The facts and why it needs to end now after years of campaigning

Dementia is now most certainly a General Election issue.

As you will have seen over the past few days, all of the major political parties in England have made commitments to addressing the social care crisis. We know that this broken system is the biggest challenge facing people with dementia and their families today.

As an organisation, since 2008 we have been campaigning with you, our supporters, on scrapping the dementia tax once and for all and Fixing Dementia Care. So what did we mean by a dementia tax?

The dementia tax

The dementia tax refers to the enormous injustice in the care system for people with dementia. In the lottery of life, people with dementia are forced to spend hundreds of thousands on care – unlike those with other conditions, such as cancer and diabetes.

This is because a large proportion of care that you receive when you have dementia is social care (such as help with washing, dressing and eating) and this is means-tested, meaning you pay. Whereas with many other conditions, you will receive the majority of your care on the NHS, which is free at the point of use.

Being diagnosed with any condition can be challenging and stressful, but in the current system people with dementia are facing the added worry of financing their care, which could cost thousands of pounds.

We believe this system is unequal and needs overhaul. Regardless of the condition you have, you should have the same access to high quality and affordable care, including for people with dementia.

For a long time, this major issue has been brushed under the carpet by successive Governments. Finally in 2017, we have increased public awareness of the impact of this dementia tax.

It appears that for the first time our political leaders are now listening, but it is essential that we see action from 9 June onwards. With your help we can ensure the next Government, whatever its colour, deliver change needed. Given the number of people with dementia using social care, this is our time to capitalise on these commitments and ensure that no one has to pay catastrophic costs for their care.

Dementia Tax

We need your voice

This is only the beginning. To keep the momentum and ensure the next Government fixes dementia care once and for all, we need your voice:

  • If you have had experience of the broken dementia care system, we want to hear from you. Share your story. 
  • Keep shouting about the unfair #dementiatax on your doorstep with candidates, in your community and on social media.
  • By uniting our voices on this issue, we cannot be ignored. Join our campaigns and hold your future Government to account.

Whichever way you are voting in this election, this is a step forward for people with dementia. Thanks to your support and tireless campaigning we made dementia a General Election issue.

If you need support or have questions about paying for care, call our helpline on 0300 222 1122.

Fix Dementia Care

 

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18 comments

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My Husband , aged 60, has just gone in for respite to give me a break.
I have discovered that social services do not fund a continuous social care bed. I want to plan a circle dancing break in October; they can't guarantee my dates. Where is the support for us carers.
I am 50 and still have a life to lead and much to give but I do need a break.

This just isn't fair, my heart goes out to you x

Hi Deb, we're so sorry to hear this. If you'd like any information, advice or someone to talk to, please contact our Helpline team on 0300 222 11 22. You can find out more about this service here: https://www.alzheimers.org.uk/info/20012/helpline Thank you and all the best.

Dementia care is indeed a huge burden to hundreds of thousands of us... It worries me greatly that my dear Annie could lose her house to pay care bills for my Alzheimer's. But it does seem that the issue is now out in the open, and features in a lot of the election coverage. Let's keep on shouting!
Martin Corrick

None of us a with A Genertive conditions should be treated in this way don't do it for Cancer MS,you don't

It's pretty clear, like most issues in this election, that only Labour cares about finding a real solution to this problem in order to help the average person.

Why would the tories care about this issue? Neither they or anyone they know will likely ever require financial support for social care or use the NHS because they're all signed up for private health and social care. The tories just look after the rest of their 1% club whereas Labour are for the many, not the few.

Vote Labour and stop the tories unfair and immoral dementia tax!

I think it is appalling that they are not investing in Social Care when they recognise their is a problem. Is it not bad enough that you have the misfortune of being ill yet the system lets you down by not even looking after your basic needs . It's a disgrace. I shall no longer be voting Conservative. My Mum has paid her taxes all her life & this is the payback she gets ? She should be looked after by the State just like any other patient on the NHS is . It is so unfair to those suffering with complex long term illness. Teresa May should come & stay with us for a week & see the amount of unpaid looking after we all have to do just to keep my Mum safe. It's a disgrace to strip families of their only asset.

I agree that patients with Alzheimer's should be looked after by the state just like any other patient on the NHS is.
How have we arrived at a situation where anyone in this country ,or coming to this country, can access free health care but elderly people with assets have to pay for their care ?

My aunt had to sell her bungalow to pay for 5 years care in a home. Leaving her family so much less than she had wanted. She worked and paid taxes her whole life. Totally unfair.

Both my parents have dementia and are in a secure care home. The monthly bill is £5,000 and they are having to sell their home (£120,000) to fund the care. The present system lets them keep £23,250 before the state steps in to help. Under the proposed new system at least £100,000 would be protected and if a cap is introduced as well this would be very welcome. I do not think the facts are being explained very well. I do not think that care should be free though but at least this would be a halfway house.

Pamela - is the £23k they can currently keep only money in savings? So even if they sold their home, under the current system would they actually get to keep £23k of the profit from sale? Just want to know the facts.

Also is the current protected £23k only available if it is domiciliary care whether than if having to move to a care home. Either way it isn't fair but would just like to know.

Thanks very much.

Luke, the £23,250 is all each parent is allowed to keep and yes, this includes savings AND house. Even when they needed care at home before going into care they had to pay all the costs themselves.
Hope this helps.
Thanks.

My brother was 55 when he was diagnosed with Alzheimer's, he only lived for 4 more years. He was 59 when he died from this terrible disease. Our parents died not knowing he had this disease, which I am grateful for, it would have broken their hearts. He had to sell his house to pay for care in a fantastic care home he was in. He was a timed served joined, and managed a joiner workshop. It is disgusting people have to sell their property, especially when he had fully paid up his mortgage, and should have been able to enjoy it. The government at the moment does not care about normal working class people, never have, they want the poorly people who need full time care to pay for their policies, and leave the upper class to keep their's. It's very unfair. Something needs to change, and soon. Just to let you know also, besides my brother 3 other members of my family suffered the same fate. Grandma, mum, aunty, and brother.
Just think how much the government have made out of 3 of them.

Thank you

My husband is 71 and I gave up work four years ago to look after him as he had been diagnosed with vascular dementia. I thought I only had one year to work as I was a few months off my 60th birthday and had expected to draw on my state pension. I was dismayed to find out that my pension date was extended and had to resort to applying for Carers allowance which has in no way covered our expenses. Added to that I have used up my redundancy payment to remodel the house along with other equipment to cater for my husbands needs such as a special bed downstairs toilet and walk in shower and special shoes and clothes etc. My friends who are the same age as me all be it born in a different month in 1953 and would have been in the same year at school are collecting their pension whereas I have to wait another year. Have I drawn the short straw or have I been cruelly discriminated against because of my birth date. My pension would have made so much difference to our quality of life as I could have bought in extra support that has been so needed. I am now an exhausted carer. I think this issues of pensionable Carers need to be addressed as a matter of urgency.

Hi. Does dementia tax apply to only the elderly with dementia but also the elder population who need social care to survive , sick or otherwise ? basically , dementia tax is a cut in public funding to social care and making people pay more . But to which of the two categories?

Hi Kavya, anyone who meets the criteria and is deemed to need social care (ie does not have a healthcare need) will be means tested whether they have dementia or not (whereas healthcare is free).

The system as it stands means that it’s very difficult for people living with dementia to have their needs identified as healthcare needs and be funded by the NHS. The term ‘dementia tax’ is being used to illustrate the fact that if someone has cancer or MS or another condition which is accepted as being ‘health related’ they receive free healthcare from the NHS. People living with dementia are generally not acknowledged as having a healthcare need, which is unfair. They are seen as having social care needs and consequently they are means tested.

Beyond the dementia specific issues there are many older people who need social care and local authority funding cuts mean that it is harder for them to access it. It will be means tested for them too though.

I hope this helps, do let us know if you have any other questions.

It is very worrying. I will probably live another 40 years. So if part of our house is 'remortgaged' to care home payments then interest added on fir 40 years, when I die , I will probably loose the whole house due to interest

The current system discriminates against SINGLE people. Single people have their property included in means testing for care costs, married couples do not. Single people end up paying exponentially more in care costs than married people.

May's attempt to change the system would have evened this out so that EVERYONE regardless of their married status would have their property included in means testing. For single people it would have been a massive improvement.

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