Dementia blues: Caring for an ageing population

At the beginning of this month, Vitangeolo Bini, a retired policeman from Florence, visited his 82 year old wife, Mara, in hospital, in Prato, Italy. Mrs Bini had been suffering from Alzheimer’s disease since 1995 and was in the terminal stage of the illness. Unable to recognise Vitangeolo, Mara had lost the power of speech.

For years Vitangeolo had cared for his wife, and this day was like many others in the little ward of the hospital which specialises in care for people like Mara. Vitangeolo sat quietly by her bedside, gently stroked her face and murmured softly to her. He then placed two towels over her head and chest and shot her dead. He turned to the other patients in the ward and explained: ‘Excuse me, but I couldn’t bear to see her suffer any more. I did it because I loved her’.

How many of us will have to bear similar burdens of care and anguish in future? The ravages of incapacitating diseases such as Alzheimer’s and dementia, in all its many debilitating forms, will increasingly affect far greater numbers of our populations. In Europe, over 18% of women in Mara’s age group will suffer from Alzheimer’s, and as women grow older the figure nearly trebles for those women in their 90s. In England, a fifth of all adults will experience some form of dementia before they reach 70. It is estimated that nearly one million of the UK’s population suffer from some form of dementia.

Across Italy, despite its strong Catholic aversion to mercy killing, Vitangeolo’s act generated huge sympathy and support. It raised the profile of those who suffer from such debilitating conditions, and made the plight of those who care for them daily far more visible.

Two thirds of the UK’s 250,000 care home residents have some form of dementia, yet only 6 out of 10 are in special dementia registered units. Only a month ago, the Alzheimer’s Society revealed that ,in British care homes, people suffering from dementia are ignored for hours at a time and condemned to live out their lives in isolation, lost in their own inner worlds.

In the next 20 years the number of British people expected to suffer from dementia will grow by 40%. By 2027, over 1 million people in Britain will experience a form of dementia. By 2074, the New Scientist magazine predicts over 1 million of Britain’s population will be over 100 years old. Currently, average life span is increasing by 2.2 years a decade, or five hours a day.

Meanwhile a poorly resourced system of ‘care’ struggles to cope, especially in England. For many the treatment is appalling and undignified. Government appears trapped in blinkered thinking and unrealistic expectations. Not only is institutional care bereft of resource and a clear strategy to equip it to meet the demands of demographic trends, informal carers, are being asked to shoulder a huge burden of responsibility, thus saving the State millions of pounds each year.

Care is becoming a scarce and expensive resource only available to the better off and only available if people sell their homes and use their life savings to pay for the inadequate care they receive. And many more children of loved ones, approaching retirement, will have to shoulder the responsibility of caring.

Respite for carers is institutionally limited and is a postcode lottery. For example, where the person I try and help to care for lives, there is a marvellous state of the art dementia residential and day centre where she can receive expert and loving care, while carers can receive some invaluable respite. But a few miles away, in her neighbouring county, there is no such facility.

Our civilisation deserves better from its Governments, not least a uniform and national approach to the welfare of the elderly. Spending billions on what I think are illegal and unwanted wars, for example, seems folly compared to the primary task of caring for our own. Vitangeolo’s single act of mercy elicited a wave of sympathy not just in Italy, but here in Britain. But sympathy is no substitute for a fully funded and caring system for all the Mara’s in this world, everywhere, and carers like Vitangeolo. He cared too much.

It is time to act before it is too late. We have been fiddling with other mistaken ventures while Rome burns. Between 1995 and 2005 the total number of households in England receiving social care services fell from 513,600 to 354,500, a fall of 31%. Over 160,000 people fell out of the net of social care in the decade as care, by the State, was rolled back.

An ageing population and its welfare are expensive. The Kings Fund estimate that just to stand still would mean raising the £10.1 billion spent in 2002 to £24 million by 2026. The Fund, unrealistically perhaps given the past record of Governments, predicted that at least 4 times that investment will be needed.

Caring for an increasingly elderly population is one of the key responsibilities of any country which likes to boast it is civilised. Ageism, as evinced by Government short sightedness, is a bigger threat to our national well-being as global warming, climate change, or even terrorism. Our failure to support and care for our vulnerable elderly, especially those with mental health problems, is the biggest scandal of our age. At Christmas, 2007, I would not raise your hopes too high that the Brown Government will change dramatically, but look out in the New Year for a new vision statement on community care for the elderly. Let us hope, this time, it is not simply hot air.