General Election result shows people with dementia cannot be ignored

Dementia care is an issue that can no longer be ignored. Ending the dementia tax needs to remain an urgent priority for the new government.

The electorate has now spoken and one thing is clear: a thundering message has been sent to politicians that dementia care is an issue that can no longer be ignored.

Dementia tax

This morning we woke up to a hung parliament, which means while the Conservatives are still the largest party, Prime Minister Theresa May has been forced to form a minority government.

This result is significant for the future of dementia care for two major reasons. Firstly, it could see Theresa May’s returning minority government struggle to pass with ease any policies and legislation that impact it. Secondly, it demonstrates that the campaign was dealt a fatal blow from the national outcry over the ‘dementia tax’, which immediately followed the publication of the Conservative manifesto.

The social care solution proposed in their manifesto was included without a full understanding of the real issues at stake, but the public response meant the Conservative Party were left in no doubt about the appalling injustice people affected by dementia face. They had to change or clarify their position within the next four days.

The entire election campaign period now appears a lesson for politicians about the far-reaching impact of dementia, the fear a lack of funding creates, and its grip on the electorate.

What now?

Our own duty, with your help, is clear. We must ensure that ending the dementia tax remains an urgent priority for the new minority government.

The ‘dementia tax’ isn’t new. But we have seen a significant change in that the election campaign has made the public more aware of this terrible unfairness, and the realisation that families up and down the country are being forced to sell their homes and part with a lifetime of savings to pay for essential care.

A recent survey sent to our campaigners asking for their views has highlighted that people with dementia are angry and upset about the current funding of dementia care. One labelled the situation a ‘miserable lottery’, while another said they felt their husband had first been mugged by dementia, and ‘is now being mugged by the Government.’ They argued ‘if he had MS or cancer, his care would be funded. It is grossly unfair.’ If you would like to share your views on the dementia tax with us then please do fill in our survey.

Throughout the last few weeks we worked with our supporters tirelessly to make sure dementia was an election issue. We offered our advice to all parties to help shape their manifesto commitments and worked with candidates to ensure that they are aware of why the voices of people with dementia must be heard. Over 150 candidates made a commitment to meet with us and 100 incumbent MPs tweeted about the need to put an end to the dementia tax.

Keep on pushing

Now more than ever, we need to capitalise on the exposure of dementia during recent weeks and hold the next government to account on their promise to consult with charities on a new, fair system for people with dementia.

The debate so far has been far too narrow and restricted to the confines of party politics. They must consider innovative long term approaches that actually address the true cost of dementia care including access to and quality of support.

This issue has been ignored by successive governments, but the public have shown that they are now united against dementia and they will not let this issue lie. The new Government must finish the job started on the campaign trail, but this time get it right, by listening to people with dementia and their carers.

Take action

Please share your views on the dementia tax with us: Complete our short survey Unite to fix dementia care where you live: Sign up to campaign with us

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When a loved one is diagnosed with dementia it is a truly devastating and emotional time. I have been through this twice: my mum and my husband. I managed to care for my Mum for nine years until she died. My hubby then was diagnosed with a fast moving form of Alzheimer's and vascular dementia. For four months my worry was off the scale as I knew he was too difficult to care for myself (he had started to be violent) and indeed later did try to strangle me in his care home.). I decided to put my house 'on charge'to pay for nursing home care. I was fortunate as he was so difficult to manage in the end I got continuing care. My lovely hubby had three nursing homes in his 18 months before he died. No-one wanted him. It was hell. I reported the penultimate home to the CQC and it was inspected the manager resigned and a new team are in charge. This whole 12 years dominated by dementia has been a nightmare. I feel lucky I got continuous care and feel strongly no-one should have to pay for care of this horrific illness.

This really frightens me I have a brother with dementia, my mother had dementia so if I follow suite I will not be able to pay for my care. My husband needs me as he is very ill and I don't have any help, my son is ill and needs me, where will I be. I now fear for our future.

Hi Gwynneth, thanks for your comment. I’m sorry to hear about about everything you've been through - it sounds like you've been having a tough time. You might also want to give our helpline a call, they can give you advice and support around dementia and dementia care. You can reach them on 0300 222 11 22, or get more information at https://www.alzheimers.org.uk/helpline

Hi. I care for my mum in her own home, she's advanced now and I've been doing it for many years. I care 24/7 365 days a year without even an hour off and people who care for their loved ones in their own home save the government 56 billion a year and yet they want more! This dementia tax has led me to tears and I can't cope with how it's made us feel. We're already unappreciated and unnoticed and now they want more! How many MPs would work 24/7 365 days without a break for 60 a week...its discriminating against the most vulnerable while other diseases get everything for free. I'm appalled to be part of the British if that's how we treat our own. UK give millions to foreign aid while they bleed our older generation dry! My parents worked all their lives and this is the thanks they get. Cruel and heartless. This disease is cruel and stressful enough without our own government putting more on us. We deserve better and dementia sufferers deserve to be treated equally. Afterall they are not of sound mind and most couldn't get POA because of this and yet the government can suddenly take their homes away from them. We save them billions a year being unpaid carers! Cruel government. We need to stand up and be recognised. What sort of country are we becoming. Afterall a couple years ago conservatives said they wanted to support people caring in their own home, well if this is support maybe they need a dictionary. It's broken me and made me so unwell and I can't enjoy what time I have left with mum because I'm so stressed over this dementia tax and I'm ashamed to be British for the first time In my life.

Hi Lisa, thanks for getting in touch. I’m sorry to hear about about everything you’ve been through – it sounds like you’ve been having a tough time. If you'd like any advice or support around dementia and dementia care, please do give our Helpline a call. You can reach them on 0300 222 11 22, or get more information at https://www.alzheimers.org.uk/helpline. Thanks again, and all the best.

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