Reflecting on the outcome of this year’s general election campaign it is undeniable the ‘dementia tax’ became a defining issue – and one that many believe undoubtedly contributed to the shock outcome.
Dementia has long been a highly discriminated against condition. This will continue as long as people with dementia have to spend hundreds of thousands on their social care while many with other conditions – for which there happen to be treatments and cure – receive the majority of their care free on the NHS. Every week, hundreds of thousands of people with dementia face selling everything they have worked for to pay for the basic care they need to live day-to-day. For this and many reasons, the system clearly does not work for people with dementia, even though it is they who make up two thirds of the people using it. The Conservative Party proposals on care reform were during the election dubbed ‘the dementia tax,’ but we need to be clear this is not new. It is a horrific reality for many. However what the election campaign achieved was to bring the idea of this terrible inequity between conditions to the fore.
The solution put forward in the Conservative Manifesto did not account for the far reaching impact of dementia and its grip on the electorate. The outrage sparked across the country revealed a public deeply troubled by what the lottery of life could mean for them, and what the future could hold should they develop this condition as opposed to some other.
At Alzheimer’s Society, we were inundated by people affected by dementia, angry and upset over the widely-publicised manifesto pledge. One branded the situation a ‘miserable lottery’, while another urged us to ‘tell the Government dementia is a disease, it’s not a lifestyle choice.’ A third said they felt their husband had first been mugged by dementia, and ‘is now being mugged by the Government.’ They argued: ‘It is grossly unfair.’ Indeed, Judith from Surrey whose mum, Joan, had Alzheimer’s disease told us: “My mum ended up spending over £500,000 on her dementia care. She would be devastated to know her money was gone and she could only leave her grandchildren a fraction of what she had hoped. She was so proud to think they would be sorted financially in the future.
“By the end of her life mum couldn’t eat, drink, speak or move anything but her eyes, yet she still wasn’t applicable for state funding despite paying taxes and National Insurance all her life. She paid for all her care right until she passed away.”
For years the social care crisis has dogged political debate, too complex and unwieldy to tackle head on and burgeoning by the minute. This social care crisis is a dementia crisis when two thirds of people receiving care have dementia. Their experience, and that of their family carers, should be listened to. Policies to tackle social care cannot be formulated either in a vacuum or in an ivory tower from Whitehall.
The true impact and implications of a hung-parliament are still uncertain for people with dementia and the crumbling social care system. Will the suggestion of consultation go ahead or, as Government grapples with Brexit and many high profile policy issues, could it be discarded or pushed into the long-grass yet again? One thing is clear however; the electorate have sent politicians a thundering message about the grip of dementia on lives up and down the country. Alzheimer’s Society and others in the sector as also doing everything we can to ensure we are heard. The public simply won’t accept a drawn out consultation that leads to no resolution. The Prime Minister should recognise there is support across all political parties for action on dementia. We have waited long enough for action and workable solutions.
Consultation must lead to the system-overhaul for people now and in future. This matters to all of us, whether young or old, or affected directly by dementia right now. We will all be at some point affected by the devastating and catastrophic costs associated with dementia care in the current system.
A long-term solution for social care must create a fair and transparent division of responsibility between government and the individual in terms of who pays for care. We must ensure we have a system that shares risk across all of society, in the form of social insurance model, so that no one is penalised anyone for having one condition or another.
Alzheimer’s Society stands ready to help shape these solutions. The voices of people with dementia must be heard and listened to if we are to see a health and care system that works for all well into the future.