Mum has dementia and now Dad’s dead she will have to sell her home. Why?
Britain operates a cruel health lottery that discriminates against dementia patients. Struggling families need social care
Mon 9 Apr 2018 05.00 EDT Last modified on Mon 9 Apr 2018 11.12 EDT
View more sharing options
‘Suddenly we were going to start burning through money and face the catastrophic costs recognised by the Dilnot commission in 2011.’ Photograph: Kirsty O'Connor/PA
When my father died suddenly in January at the age of 91, family and friends gave him a great send-off. We had a private cremation, an uplifting memorial service at church, and rounded off the day with a buffet at the golf club. The next day, Mum couldn’t remember anything about it. She kept asking whether Dad had died, how he had died, and obsessed about having to organise the funeral.
About 10 years ago Mum was diagnosed with dementia, the creeping and cruel illness that has stolen her short-term memory although not – yet – her vibrant personality. Thanks to round-the-clock care by my father, her memory problems worsened only gradually until his death. But in grief, her confusion has deepened significantly.
In the first weeks after he died, my brother and I would have to relive every few minutes, in response to questions from Mum about how he’d fallen down the stairs and knocked himself out. She kept on discovering for herself that he wasn’t there. Once she wandered into my bedroom in the middle of the night with her handbag under her arm, saying she was going to call the police because Dad was missing.
The doctor said that we should start with a social-needs assessment by the local authorities, which would help us with a care package. However, they told us that Mum would have to consent to an assessment by phone, which seemed surreal given her belief that she was running the household unaided. More than two months later we are still waiting for a face-to-face appointment and have been navigating the system on our own. One of my first discoveries was that because my mother has more than £23,250 in personal assets, including her house, she would be among the hundreds of thousands of “self-funders” forced to pay all her costs if she ended up in a care home.
While I was in the process of talking to care agencies and visiting homes trying to find out what would be in her best interests, Mum – who is very mobile and fit at 89, despite her condition – had a fall. She spent a day in hospital, which prompted us to take the wrenching decision to find a place for her in a residential home where she would be safe. How quickly we had reached the point where suddenly we were going to start burning through money and face the “catastrophic” costs recognised by the Dilnot commission in 2011.
Like so many others watching their savings being wiped out, I feel that our situation is unfair because dementia is an illness for which there is no cure and which strikes at random. My father never claimed a penny as one of the cohorts of unpaid family carers who now total 8% of the UK population. If Mum had been diagnosed with cancer, she would have received free care on the NHS, but with dementia she’s having to fend for herself. Why should she be penalised when others with a different illness are not?
Nothing has been done to reform this arbitrary and unjust policy of adult social care since the Dilnot commission recommended a cap on lifetime care costs and a more generous means test. After the coalition government backed the principle, Theresa May last year postponed the reforms that would have limited individual liabilities. Now the best chance for overhauling the funding system will be in a long-awaited green paper in May or June – which the government has said will contain options for asset caps and a means-tested floor.
With May proposing £4bn a year in extra spending for the NHS, Jeremy Hunt spelled out on 20 March his seven principles, in which he said social care should be the shared responsibility of the state and the individual. Adult social care has been led by local authorities since 1990 but now they are struggling to cope with budget cuts as well as the needs of a swelling elderly population living longer than ever. Having lost his grandmother to dementia, Hunt said he wants to end this illness “lottery”, which defines financial wellbeing under the current punitive system.
He hinted that younger people might take out social insurance for their care needs in old age, as part of an “equitable” approach to funding. Other options, also reviewed in a recent working paper by the King’s Fund, could include a dedicated tax for social care, including a possible tax on people’s homes after they die.
Resolving the social care crisis with a long-term financially sustainable approach will take time. It will cost billions and will be too late for my Mum, who will have to sell her house if she stays in the care home.
Why should young people care, saddled with debt from university fees and struggling to get a foothold on the housing ladder? Because dementia is a timebomb the devastating effects of which are being felt by families across the land. With cases steadily approaching the one million mark, it’s time for solidarity across the generations. We all pay for education, whether or not we have children. Whatever solution is found for social care in the future, it must be earmarked and include the principle of “we all help one another”.
• Anne Penketh is a journalist and author
'The spark will ignite': how poetry helps engage people with dementia
Shops, cafes and round-the-clock care: life in a ‘dementia village’
'Nothing has changed!': May as she announces social care U-turn – video