A woman whose mum and partner suffer from severe dementia says she is fearful about the future as the UK faces a looming social care crisis.
Jane Tomlinson, from Corby in Northamptonshire, had to give up work nearly four years ago to look after her partner Alex, who was diagnosed with early onset dementia aged just 51.
“He was finished up from his job and in hindsight I should have looked into what happened more,” she said.
“I suspect that he wasn’t doing the job properly, because we first noticed something was wrong when he started doing odd things.
“He would forget I’d made lunch for him and say I hadn’t told him and quite often when we went shopping he would just stare at the trolleys that you needed to put a pound in and not know what to do.”
Jane and Alex made an appointment with a GP, who said the former managerial shift worker was depressed.
“I knew it was something more, so we saw a second doctor and he said straight away he was going to refer him to a memory clinic. It confirmed what I’d suspected but tried to put to the back of my mind.”
Six years earlier, Jane’s mum had been diagnosed with Alzheimer’s disease and just a few weeks later her dad discovered he had terminal cancer. Both had to move into a home as their needs were too complex to be met at home - at a staggering cost of £900 each every week.
Jane gave up her job with Oxford University Press to look after Alex full time as his condition worsened - but the family were unable to cope with the increased financial pressure and their home was repossessed just weeks after Jane’s dad died.
“We get no financial help whatsoever with the costs of my mum’s care. She is 81 now and her dementia is advanced,” she said.
“We are paying for it out of her savings and the inheritance from selling my parents’ house.
“We get no financial help whatsoever and we have already lost our home. But we only have about another 18 months before the money runs out - then we will either have to apply to the council for funding and if they say no, we will have to uproot my mum from the place she is used to.
“It isn’t what you expect to happen at the end of your life. It’s not what you work hard and pay your mortgage off and save for. People try to make sure they have enough aside for when they are older and maybe a little bit to pass on to their children, but it just doesn’t work like that.”
Jane, who has four daughters, said 56-year-old Alex’s needs are also becoming too difficult for her to cope with alone.
“It is really difficult. He is at the stage now where when you are trying to help him, he basically behaves as if you are killing him. It is hard. The two people I love the ends of the earth and I am unable to ask them for any support. But I am grateful they are still here.”
Jane’s story is one of thousands across the country as more and more families struggle to meet huge care costs and services come under increasing pressure from the twin demands of an aging population and stringent budget cuts.
Current policy requires anyone who has more than £23,250 in savings or assets, including property, to fund the full cost of their own care if they are in a residential home.
During the election campaign Theresa May proposed making pensioners pay for care in their own homes as well under a means-tested system - dubbed the ‘dementia tax - but later U-turned on the policy, imposing a £100,000 cap after criticism from political opponents, charities and campaigners.
A YouGov poll carried out a week after the election revealed social care came out above both education and crime when members of the public were questioned about the country’s most pressing issues.
Worry about not being able to pass on anything to loved ones, because it would all be swallowed up by dementia care bills, has jumped 19% since before the election was called, with 60% of people now concerned any savings they have will be spent on care or support. Tory voters in HuffPost UK-Edelman focus groups held before polling day also said they believed the Conservatives’ policy was ‘not fair’.
According to the Alzheimer’s Society, people who develop dementia in the current social care system lose an average £100,000 over their lifetime as they’re forced to fund their own care, in contrast to people with heart disease, cancer or diabetes, who receive care for free from the NHS.
Ahead of the Queen’s Speech to Parliament this week, the charity’s chief executive, Jeremy Hughes, has written to Theresa May to call for an urgent meeting calling for an urgent meeting about what can be done to avoid people diagnosed with dementia having to ‘sell everything they own’ to pay for their own care.
“In the lottery of life, people with dementia remain the principal victims, forced to spend hundreds of thousands of pounds on care — unlike those who develop cancer, heart disease or diabetes,” he said.
“Public outcry means the government simply cannot pass up this opportunity to address this injustice and create a care system that is equitable for people with dementia, and fit for the future. The outrage and anger amongst the electorate is not abating, and makes kicking this issue into the long grass impossible.”
He said the debate around social care had been ‘far too narrow and restricted’ and said the government must find workable long-term approaches.
In the longer term, the charity seeks for society to unite against dementia, and for the government to put in place a system to share the risk of dementia care costs across society, and end the dementia tax once and for all,” he added.
The Alzheimer’s Society is also calling on the public to sign their petition demanding the government creates a better, fairer system of care for people with dementia, at alzheimers.org.uk/fixdementiacare.