It’s not cool to talk about old age. It’s even less cool to talk about illness in old age. But that’s exactly what Ruth Sutherland, CEO of the charity Alzheimer’s Society, is doing. Dementia – the name given to brain disorders that trigger a loss of cognitive function, including Alzheimer’s disease – is a fact of life for 750,000 people in the UK. And death, for that matter: the illness is terminal and a third of people over the age of 65 die with it. As Sutherland puts it, we all feel “the economic and human toll of dementia.”
Alzheimer’s disease – named after a German neurologist who discovered abnormal clumps of brain cells in a woman who died of an unidentified mental illness – is one of the main causes of disability later in life, ahead of cancer, stroke and heart disease. That’s why Alzheimer’s Society is keen to challenge the stigma of mental decline, and bolster investment in a condition that is “desperately underfunded.”
You might ask what is the point of investing money in an illess from which – crude as it sounds – people will die anyway. “Dementia will cost UK taxpayers £27 billion a year by 2018,” Sutherland answers. Put in perspective, that’s £5 billion more than the Transport budget. “Research by Alzheimer’s Society shows by cutting the average length of hospital stay for a person with dementia by one week could save the NHS at least £80 million a year.”
But it’s not about throwing money at the problem: “We all have a vested interested in knowing that what we pay in tax is providing good value for money. But with dementia, we need to ensure that the money spent is invested in good quality care. This will eliminate expensive bills for crisis care.” Even if it’s thought that investment in terminal illness is futile, let’s not forget the “millions more” who struggle to care for sufferers. The charity promises to “strive for universal access to quality services,” seeking to reduce the £690 million income loss for those who reduce their working hours to care for dementia sufferers.
There is a cruel irony to Alzheimer’s disease. “Thanks to substantial investment, we have also seen real progress in the development of treatments and understanding the causes of diseases like cancer. This means more people are living for longer,” Sutherland explains. Whilst – mercifully – survival rates of other diseases are slowly improving, more people are living long enough to succumb instead to cognitive decline.
What is the government’s funding role? Has Sutherland had to rethink plans to push for state contributions of £96 million over the next five years? “The Liberal Democrats made a pledge in their election manifesto to increase investment in dementia research. We want to see this commitment honoured by the new coalition government.”
Sutherland sees the charity’s role as a springboard: “Today’s PhD students are the professors of tomorrow. We have an extensive dementia research programme [but] the projects we fund are to allow students to learn research techniques. Hopefully, [they will] have a long and distinguished career in dementia research.”
What practical help can we give to sufferers of what is currently an incurable disease? “People with dementia and carers can become isolated, but something as simple as popping round for a cup of tea, or to do the weekly shop can make all the difference.” And looking further afield? “It would be fantastic to see more young people getting involved with Alzheimer’s Society. We have a number of exciting opportunities, which range from trekking the Great Wall of China to cycling Jordan…we will support you all the way.”
Ruth continues: “People with dementia have reported losing friends following a diagnosis or neighbours crossing the road to avoid them.” In civilised society, we wouldn’t dream of scarpering at the sight of someone with a broken leg. Why should broken neurological pathways be any different?Dementia is far closer to home than we like to admit. One million people are likely to develop the disease over the nest ten years. That’s a lot of grandparents. A 2010 report from Alzheimer’s Disease International put the global cost of the condition at $604 billion this year alone, equating to 1% of world GDP. Memory loss, old age, and ultimately death are facts of life. But that doesn’t give us the right to shove the aged to the bottom of the pile, nor to give up on their friends and family.
Talking to Ruth about the impact on carers pushes me to research their experiences. Talking about dementia might be uncool, but it’s necessary. A son writes: “I often find myself describing my father in past tense – though he is still alive. This is because dementia has a cruel way of stripping away everything that made that person who they were. He can no longer recognise me and he is unable to walk more than a meter. The worst of it is when he looks at you and for a brief second it’s as if he recognises you and he smiles. That’s when I feel like I could run around the world if it would make him better.”
To find out more, go to the Alzheimer’s Society website, www.alzheimers.org.uk