The details contained in yesterday’s Alzheimer’s Society report on the financial burden placed on those whose lives are touched by dementia came as no surprise to many of us. Dementia is a condition caused by diseases of the brain and yet those who live with it are not afforded the same “free at the point of use” care as, say, someone with cancer. The clue is in the word “diseases”, I’d have thought. Soon after Mum’s diagnosis, when all this was still quite new to me, I asked the then Secretary of State for Health why dementia came under the social care rather than NHS financial banner. The Rt. Hon. Andrew Lansley, for ’twas he, didn’t answer my question but he’s not alone in dodging the issue. Successive governments have done it but, now, I suspect the time for dodging is nearly done.
Last week, the King’s Fund advocated a series of measures which, it believes, would raise the £9bn required to fund social care for those in most need including people living with dementia. Most of us would end up paying in some way – higher taxes for high-earners and the over 40s, the scrapping of the winter fuel allowance and higher prescription fees were some of the extra sources of income – but what the King’s Fund nailed was that the current divide between health and social care is illogical. I’d go further – it’s divisive and unjust.
So will anything change? With a General Election looming, it’s hard to imagine any of the leading political parties littering a manifesto with promises to raise taxes and scrap benefits. But as the numbers of people directly affected by dementia – whether living with it themselves or caring for a loved one – increase, politicians can ill afford to ignore this issue for too long.
However, while the focus of the financial burden is welcome, it’s far from the whole story. Many thousands of people pay a huge emotional price as well. A friend of mine told me she was dreading going to see a relative, not because she didn’t love that person dearly but because of the pain the visit would bring. I know how she feels. There have been times when I felt as if I were visiting Mum out of duty rather than love. That brought with it a sense of guilt which only made things worse. And I’ve had it comparatively easy. After her diagnosis, I lived with Mum for a day or two at a time and at most a week. Mum’s essential character – positive and calm – has remained unchanged and she’s found contentment in her care home. And, in time, I’ve found a level of contentment too, accepting that our relationship is now all in the present. For many, many others it’s so much harder. The Alzheimer’s Society estimates that the cost of dementia to the UK is now £26bn and that people with dementia, their carers and families pay up to two-thirds of that bill. Truly shocking but the emotional bill can’t be so easily quantified. Together, this is the real cost of dementia.