As all those who do it know, caring for someone with a dementia can be challenging and at times overwhelming. Caregivers to those with dementia regularly face many uncontrollable situations. Even normal daily activities like dressing, bathing and eating can become sources of deep frustration, not to mention other behaviours often associated with dementia, like wandering or asking questions repeatedly.
It takes learning to understand that the behaviours of a person with dementia cannot be changed. And for many, it takes time to accept that this is a degenerative disease and only has one exit option.
Even GPs find diagnosing dementia challenging. Signs of forgetfulness of tasks, names, places, dates and details, changes in demeanour or poor judgement may be brushed off as inevitable side-effects of growing older and so are not taken seriously, even though these may be the first tidings that the person is experiencing a more serious problem with their memory.
In a BBC News report 3.2.2010, it was noted that for every twelve pounds spent on investigating cancer, only one pound is spent on dementia research. Bridging this gap is urgent given that the numbers of people with dementia are much higher than thought. The Alzheimer’s Society estimated then that there were 821,884 sufferers in the country – more than 15 per cent more than the government had previously admitted to and that they expect the number to pass one million before 2025. Dementia costs were revised upwards to UK £23bn annually – 35 per cent higher than the previous calculations of £17bn.
Researchers from the University of Oxford compared the cost of caring for a person with dementia to the cost of dealing with cancer, heart disease or stroke – the three main causes of death in the UK. Apart from health care expenses, they also considered the costs of social care, unpaid carers and productivity losses.
Every person with dementia costs the economy £27,647 each year – nearly five times more than a cancer patient, and eight times more than those with heart disease.
The financial – and emotional – costs that are met by unpaid carers and incurred by long-term institutional care, push up the burden of dementia.
Yet the costs of these health conditions appear to bear little relation to the respective amounts invested by government and charities in research into causes, treatment and prevention. £50m worth of research is devoted to dementia, while heart disease received three times as much and cancer research, a whopping £600m a year – 12 times more. Only stroke research received less. For every person with cancer, £295 is spent on research, compared with just £61 for each person with dementia.
One explanation for the discrepancy in government funding for research, may be that a larger proportion of the cost of caring for cancer and heart disease falls on the NHS, rather than the individual and their family. Also, cancer and heart charities have had many years to grow into the much larger charities they are today compared to those devoted to dementia.
But the researchers also suggest that it is our own perceptions of this disease – as one associated with old age – that may influence what people are prepared to donate.
And of course, currently, there are no cures for dementia and few ways of delaying or slowing it, so there may well be a feeling of resigned inevitability surrounding it. However, the lack of effective treatments is surely an argument for devoting more effort to research, not less!
When he was Labour’s Care Services Minister, Phil Hope set up a new ministerial group to drive forward research into the causes, cure and care of dementia and help dementia researchers get more access to funding. A report on this has yet to appear.
National Clinical Director for Dementia, Professor Alistair Burns was appointed to provide leadership across the dementia strategy in the hope of helping to improve standards of dementia care across the country. Hard evidence of standards rising as a result is still in the pipeline.
Currently, there is no national strategy for families – who often bear the greatest burden as well as the frustration, stress and distress of caring for someone with dementia – whether they are at home, or in a Home. Worse, few but the most interested know much if anything about it nor how to cope with a loved one who may have it.
I believe that the time has come. We need to start an engaging, countrywide public information campaign in the UK to help families to understand more about dementia and provide meaningful information and techniques that will help them to cope.