Why now is the time to call for the end of the Dementia Tax

The Dementia Tax devastates lives. Sign our petition to stop the system from becoming even more harmful for people with dementia.

On Tuesday, we launched our petition calling on the UK Government to end the unjust Dementia Tax once and for all.

For years there has been little public knowledge about the catastrophic costs facing people with dementia and their families in England.  During the General Election, we witnessed widespread uproar about people with dementia having to bear an unfair responsibility for paying for their care.

This issue was highlighted when the Conservatives proposed to make changes to the social care system. These policies – like those from other parties on this policy area - were aimed at improving the system. But when the detail was scrutinised, this became dubbed the Dementia Tax.

What is the dementia tax?

The situation in England now

The reality is that people with dementia already face a Dementia Tax.

They have had and continue to have to spend hundreds of thousands on their dementia care, while people with other conditions receive their care free at the point of use.

While it’s certainly positive that there’s been a debate around the possible negative impacts of the Conservative proposals, it’s crucial that the public is also aware of the current system and the difficulties people with dementia face now.

The current reality sees many people with dementia struggling with the cost of their care and being discriminated against in an unfair system that does not cater for them. The majority of people already face losing their homes and life savings to pay for care.

How can we end the Dementia Tax?

Truly ending the Dementia Tax will only occur when people with dementia have the same access to affordable care as people with other conditions.

Over the last twenty years, UK governments have talked about reforming the social care system and have failed. They could not agree on how to fund the system or on a common plan of action.

And now, people with dementia risk the solution being put off yet again.

Speculation this week has suggested that social care could be dropped in the Queen's Speech and beyond. The Queen’s Speech is a symbolic moment, which marks the beginning of the new Parliament and sets the tone for the Government’s priorities.

If the Government does drop discussions about social care proposals, it is vital that we ensure the public knows this does not end the Dementia Tax. Instead, it means we are back to where we were before the manifestos were launched in May. If this is the case, people will continue to face a devastating reality.

We want the UK Government to know that they cannot use Brexit or anything else as an excuse to ignore the current problems in the system.

People with dementia are already being impacted by an unfair tax – if new and improved solutions are not put forward they will continue to struggle for years to come.

Take action

Maggie and dementia tax

This is why we are calling on everyone to unite with us and call for action now.

We want change in England that will ensure a new system is put forward as soon as possible. We want a system that will prevent people affected by dementia from having to sell their homes and spend their life savings.

Politicians and the public alike should acknowledge that people with dementia have been the primary victims of this crisis for decades.

The backlash over Dementia Tax during the election campaign was much needed to ensure wider understanding but this is not a new issue. It is a potential worsening of a current crisis.

We must deliver a firm message to the new government that dementia must continue to be a priority. People with dementia cannot afford to wait any longer.

Sign the petition now and join us in calling on the UK Government to create a better system of care. A system that ensures no one will have to spend all they have on their dementia care.

How you can help

The Dementia Tax already devastates lives and together we can stop the system from becoming even more harmful for people with dementia.

Sign the petition
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High time this tax was abolished! It is beyond believe and abject cruelty and lack of compassion. Maybe if Teresa May took the time, to come to Norwich and visit The Marion Road Day center to see what dementia is like and talk to the staff, I think she would come away from there really ashamed of herself and her party, hopefully she would then have to take steps towards abolishing this obscene and disgusting dementia tax!!!!!

I'm in the early stage of Alzheimer's Disease, so my partner and I are obviously concerned about the potential demands in time and money as the disease develops.

As far as I can see, the Alzheimer's Society may be attempting to argue that the 'care needs' resulting directly from AD are a component of that illness, and therefore should be provided (or at least funded) by the state under the general principle of a free national health service.

Is that how others understand the situation?

It may be that the NHS is not required to fund 'care needs in old age' unless those needs are not the 'ordinary' result of ageing but result from a definable disease. Alzheimer's Disease obviously adds to, accelerates, and/or intensifies ageing, and does so in a dramatic, prolonged and expensive fashion that is not the same as ordinary ageing.

An Alzheimer's patient like me (i.e. someone who is still mobile and has sufficient brain power to communicate) can get the necessary 'care' (i.e. assessment and palliative treatment) from NHS sources without question, and also has access to resources provided free by charities such as the Alzheimer's Association.

But when I lose mobility and brain power, and need full-time care with medical oversight, I can't see that stage as 'normal ageing'. It's the result of a severe and remorseless illness. How is that stage of Alzheimers not fully fundable by the NHS, since it has been caused by an illness, just like, say, brain cancer ?

The answer seems to be that an Alzheimer's patient's needs are somehow defined by the government as 'simple care' rather than 'treatment'.

Would that care be funded if, for example, the same mental and physical state had resulted from a car accident? I don't know the answer to that, but it might depend on whether anyone could be found to be 'responsible' for the patient's situation, and therefore could be made to carry the can. (Or their insurer, perhaps.) .....?

So the crucial point is the difference (if one exists) between 'normal care for an old person' and 'care for a severely ill person.' The government is arguing that care for an old person with Alzheimer's is no different from care for a normally healthy old person, so it should be borne by the family.

That can't be anything but deliberate evasion, surely? Government doesn't want to pay for our illness, so it has wriggled its way out of it. That is the fact of the matter.

As a rich country, we should face up to the true costs of care for Alzheimers patients, have a proper debate and eventually, perhaps, confirm the decision (whichever way it goes) by a vote of the whole population. But all this evasion and wriggling is wrong, and must surely continue no longer.

I have already signed a protest petition and forwarded to my friends asking them to sign too.

Thank you so much for your support Susan, it's appreciated!

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