Dementa: what they don’t tell you…

Independent on Sunday, 23 August 2015

… is to eat healthily, exercise, and stay mentally active – it’s not a cure but it can make a significant difference

Good news about dementia is in short supply. There is no cure as yet, and so many new cases have been predicted that it’s been described as an epidemic. I’ve seen its devastating effects on my mother, who suffered from dementia for the last three-and-a-half years of her life, and another relative has recently been diagnosed with a mild form of the condition. So has one of my closest friends.

All of these women are a generation older than me. Last week’s rare piece of positive news, which shows that the number of people now living with dementia is levelling off in Western Europe, comes too late for them. The other headline finding of the latest study – that a healthier lifestyle in middle age appears to have protective effects – doesn’t have obvious relevance to people who have already been diagnosed with the condition.

The study shows that the expected increase in the number of dementia cases since the 1990s hasn’t materialised, casting doubt on the validity of the “epidemic” label. A review of five large epidemiological studies suggests that figures from the 1980s which have been used to predict an upward trend are out of date. In four European countries there was no increase in prevalence and the UK actually showed a drop; there were 22 per cent fewer people aged over 65 with dementia in 2011 than had been predicted in 1990.

The experts think this may be because middle-aged people have adopted healthier lifestyles, reducing known risks such as having high blood pressure and high cholesterol. “This evidence suggests that attention to optimum health early in life might benefit cognitive health late in life,” the report observes drily. For my generation – the baby boomers – that has meant giving up smoking or avoiding it altogether, taking up running or going to gyms, and eating healthier food. We are very different from our parents’ generation, who missed all the modern messages about what constitutes a healthy lifestyle.

My mother grew up at a time when no one talked about the importance of physical exercise and a healthy diet. She smoked when she was younger, I don’t think she went to an exercise class in her life and she didn’t do much walking either. Like many women of her generation, she lived to a ripe old age but suffered from failing health for years before she died. I worried about her sedentary lifestyle but she lived at the other end of the country and it wasn’t a priority for the health professionals she consulted.

This isn’t an unusual situation but it has dreadful consequences. There were more than 800,000 people with dementia in the UK in 2013 and the impact of the diagnosis on their lives, not to mention the emotional strain on families and friends, is enormous. My mother died last year after a harrowing period in which she suffered delusions and auditory hallucinations; she accused friends of stealing from her and was convinced she could hear men trying to break into her first-floor flat in the middle of the night. Eventually she was unable to look after herself and had to move into a care home.

Dealing with such problems is a huge challenge for the statutory services, which have been criticised for the way they respond. Two years ago, the Care Quality Commission said bluntly that the health and social care system was struggling to care properly for people with dementia.

Here’s an example: even before the latest research confirmed the benefit of exercise and a healthy diet for the middle-aged, evidence existed that changes in lifestyle are beneficial for people who already have dementia. The Alzheimer’s Society is unequivocal on this point, insisting that “leading a physically active lifestyle can have a significant impact on the well-being of people with dementia”. But none of the elderly people with dementia that I’ve known have been encouraged to take more exercise – now I think about it, that applies to virtually all the elderly people I know.

Care homes organise visits from hairdressers, chiropodists and singers but I’ve never encountered one which has exercise equipment or promotes the benefits of regular physical activity. Whether they live in residential care or at home, my relatives’ immediate needs have been met but they’ve been left sitting in chairs most of the day.

When my relative was told she had dementia earlier this year, I hoped things might have improved since my mother’s diagnosis in 2011. This elderly lady has bouts of confusion and forgetfulness, but she’s quite capable of walking if she has someone with her; when I stayed with her last month, I took her to the cinema and we even went on a boat trip around the Farne Islands. But she hasn’t been offered any advice about how she might stimulate her brain, and no one has offered to help her increase the minimal amount of exercise she gets.

Obviously we can’t avoid every case of dementia, especially as more people live beyond the age of 85; around 40 per cent of that age group is estimated to be affected. But with evidence mounting that lifestyle changes in middle age can reduce the risks, it makes no sense that only 5 per cent of research funding is spent on prevention.

At the same time, I’m sure we could make life more comfortable for elderly people who have already received this terrifying diagnosis. It’s too easy for GPs to write a prescription for anti-depressants when what these vulnerable individuals need is emotional support, mental stimulation and gentle physical exercise.

Prince George and the paparazzi: deferring to the long arm of Buckingham Palace

Independent on Sunday,16 August 2015

Few of this country’s institutions retain the power to cow the media. Neither politicians, clerics nor prize-winning novelists can expect to have their pronouncements treated uncritically, which is on the whole a good thing. The one exception is the monarchy, which flexed its muscles to dramatic effect last week.

Two members of the royal family have let it be known that they are furious, a state of affairs so shocking that it led news bulletins. Royal correspondents spoke in sonorous tones about the distress suffered by the Duke and Duchess of Cambridge when people take photographs of their son, Prince George.

Not the photos issued by the couple themselves, obviously. You know the ones I mean, showing George wearing the kind of smock top which had gone out of fashion even in the dim and distant days when I was a toddler. Those are good photos, you see, along with the carefully-posed images of George holding his baby sister, Princess Charlotte. Bad photos, to be clear, might look cute but they’re not because they were taken by unauthorised photographers. These pictures are so bad, in fact, that the police have warned anyone taking them that they risk being shot. Has everyone taken leave of their senses?

This story is a perfect illustration of the absence of journalistic rigour towards any claim made on behalf of the royals. ‘I could do that,’ I often think when a royal ‘expert’ is wheeled out to comment. I could stand in front of a camera, regurgitating the latest press release and adding a few unoriginal observations – legacy of Princess Diana, right to a ‘normal’ childhood, blah blah blah – of my own. I haven’t heard a single interlocutor ask for details of the more lurid claims made in an open letter to the media from Jason Knauf, the Duke and Duchess of Cambridge’s communications secretary. Who are these young children who have been used to lure George into view at playgrounds? How do the couple know that children are being used in this manner?

Then there’s the unnamed photographer who created a ‘hide’ in his car to take pictures of George in a play area. It’s not how I’d want to spend a day but the point Knauf didn’t make (and neither did any of his willing echoes in the media) is that it’s not clear he had broken any laws. People are allowed to take pictures in a public place as long as their behavior doesn’t amount to stalking, in which case it could have been dealt with under the Protection from Harassment Act.

The Duke and Duchess have threatened to use the act in the past, warning a photographer called Niraj Tanna to ‘cease harassing’ George and his nanny after he was spotted by royal protection officers in Battersea Park. The photographer denied harassment, insisting he was entitled to take pictures in a public place, and nothing more was heard about the threatened injunction. The couple may fear a terrorist attack but that’s a reason for reviewing overall security, including the wisdom of allowing George to play in a public park.

What no one bothered to ask following publication of Knauf’s letter is what harm the Duke and Duchess have suffered. They are annoyed, but that’s different from being frightened, alarmed or distressed. It’s a distinction missed by one of their supporters, Hannah Weller, who successfully took the Daily Mail to court after it published photographs of her on a shopping trip with her infant children. You might think that was an adequate remedy but Weller was on yesterday’s Today programme, talking about her wrong-headed campaign for a change in the law to prevent publication of any un-pixelated images of children without their parents’ express permission.

Everyone is entitled to privacy when they are at home or somewhere the public is not normally admitted. The principle is clear and straightforward, and The Sun breached it when it published pictures of Prince Harry naked at a party in Las Vegas three years ago. That piece of bad behavior happened despite the fact that it was the targeting of his elder brother, Prince William, which brought the whole phone hacking scandal into the open. If the News of the World’s royal correspondent hadn’t decided to hack mobiles belonging to members of the Prince’s circle, we might never have had the Leveson inquiry or the Hacked Off campaign, which I ran until a couple of months ago.

With occasional exceptions, the British press is wary of upsetting the royal family these days. Knauf thanked UK publications for refusing to publish unauthorised pictures of the Cambridges’ children, blaming the problem on a handful foreign publications which buy paparazzi photos. Sadly, some British editors are not always as responsible when it comes to non-royal children: last summer The Sun published a picture of a four-year-old boy on its front page, making the preposterous claim that he had the mark of the ‘devil’ on his torso. The paper had the family’s permission, but that doesn’t alter the fact that the child was too young to consent to being paraded in this manner.

I know it’s August, notoriously a slow month for news, but that hardly applies when we’re in the middle of an unprecedented refugee crisis. I’m furious about lots of things, including the demonisation of people fleeing the world’s worst regimes, but the prominence given to this silly-season story about one privileged family takes my breath away. Deference is far from dead, and the royals haven’t lost their capacity to push genuinely important stories down the news agenda.

Joan Smith was executive director of Hacked Off until June 2015

Kids Company: not so much a business model as a recipe for disaster

Independent on Sunday, 9 August 2015

It survived as long as it did because of generous injections of taxpayers’ money

There’s nothing unusual about charities trying to attract celebrity supporters. Kids Company was no different in that respect, counting Damien Hirst, Rowan Atkinson and Coldplay among its starry donors. But its most generous celebrity supporter seems to have been one David Cameron, who was more than happy to share a stage and be photographed with its charismatic founder, Camila Batmanghelidjh.

So, to be fair, were Boris Johnson, Gordon Brown and Prince Charles. But when the charity collapsed last week, Downing Street was accused of over-riding ministers and civil servants who expressed reservations about its performance and management as long ago as 2012. The prime minister and Batmanghelidjh make an odd pair, but no one should under-estimate the yearning of politicians to be associated with funky organisations that speak the language of the street.

There’s more to it than that, of course. Cameron doesn’t talk much about the ‘big society’ these days but five years ago he was full of enthusiasm for it. His argument was that private philanthropy and voluntary work would fill the gap as the state drew back from funding all sorts of projects – always a dubious proposition, but the prime minister was adamant it wasn’t a cost-cutting exercise. He was right about that: Kids Company has received £37m of public money since it was set up 19 years ago, with just over £14m being handed over between 2011 and 2013.

The charity’s work force grew to more than 600, raising running costs to a point where it needed to use £800,000 of a £3m government grant last week just to cover one month’s salaries. Staff who lost their jobs when Kids Company closed were understandably upset, but the trustees had been warned that the charity was living beyond its means. Indeed the most substantial charge levelled at Kids Company to date – that it spent up to the hilt and failed to build up adequate reserves – is more or less admitted in its 2013 accounts. The organisation observed frankly that its business model was ‘to spend according to need, which is consistently growing’. That isn’t so much a business model as a recipe for disaster.

Charities haven’t had a good press lately and it is extraordinary that this one escaped critical scrutiny for so long. One of the effects of government spending cuts is that NGOs need to raise more cash; events like the war in Syria make ever-bigger demands on their resources, but charitable giving is static or declining. What are they to do? Earlier this year, telephone calls and begging letters from charities were blamed for the suicide of a 92-year-old woman, Olive Cooke, even though her family insisted that she was suffering from depression and insomnia. Then the prime minister entered the debate, describing the fund-raising methods of some NGOs as ‘frankly unacceptable’. Perhaps Kids Company didn’t need to use such methods because it could go direct to No 10.

Now the organisation is bankrupt and thousands of children and young adults have lost services they’ve described in glowing terms. Everything else is mired in sensational allegations, briefings from hostile sources and a highly emotional (some would say manipulative) fight-back from Batmanghelidjh. Two days ago, supporters demonstrated at the gates of Downing Street, but Labour is right to call for the National Audit Office to carry out a review of public funding to the organisation. The fact that people are angry doesn’t prove that it was well run or that the money it received was spent wisely.

At the same time, such a high-profile collapse is in danger of drawing attention away from the difficulties faced by the rest of the charity sector. It isn’t unusual for small NGOs to quietly close their doors without anything like the furore we’ve witnessed in the last few days, but with devastating effects on the people who depend on their services. In April, three day centres for people with mental health problems closed in Southwark, leaving hundreds of vulnerable individuals with nowhere to go; a month earlier, two leading charities said that the safety net for women and children fleeing domestic abuse was being ‘dismantled piece by piece’.

One lesson that emerges from this dreadful saga is that a disdain for administration creates exactly the kind of risk that destroyed Kids Company. Charities feel they have to make a point of saying how little they spend on admin – it has come to be seen as an almost wilful with-holding of cash from people who need help – yet effective governance (making sure an organisation is properly run, in other words) is essential to their survival.

Kids Company got into trouble not because it didn’t raise funds but because it spent the money as fast as it came in, assuming that the government would bail it out if it got into trouble. That was still going on as recently as last month, when two ministers over-ruled civil servants and told them to hand over the £3m they are now trying to get back. Not for the first time, an ideologically-driven conviction about the superiority of the private sector over public services has had a disastrous impact on vulnerable individuals and put taxpayers’ money at risk.

Private philanthropy is too piecemeal, and too inclined towards popular causes, to provide consistent services across the board. It has become a beauty contest in which those charities able to produce the most telegenic and articulate victims get more attention than the rest. A flamboyant, media-savvy chief executive helps, but there is an unmissable irony at the heart of this sequence of events. The very project that was supposed to embody the prime minister’s ‘big society’ survived as long as it did only because of generous injections of taxpayers’ cash.

Labour leadership race: Supporting Jeremy Corbyn is therapy, not politics

Independent on Sunday, 2 August 2015

The surge in support shows all the signs of magical thinking

Oh, how I hate to be proved right – on this occasion, at any rate. I pointed out last month that Labour is having a nervous breakdown after its shattering general election defeat, and everything that’s happened since has just confirmed my thesis. Supporting Jeremy Corbyn’s leadership campaign seems to have made quite a lot of people feel better, for the moment at least. But it’s therapy, not politics.

It’s a measure of the state Labour is in that the longest-serving MP among the four candidates has managed to present himself as the new kid on the block. Corbyn’s politics look pretty much the same as they’ve done since he was elected to Parliament in 1983, yet he’s suddenly being hailed as Labour’s future. I’m happy to accept he’s a nice guy, although I’m uncomfortable about his willingness to welcome “friends” from the Islamist group Hezbollah to a meeting in Parliament. I’d love to see Labour renationalise the railways and the utilities, but I’m not clear how Corbyn would pay for it.

Back in May, Labour failed to persuade sceptical voters that the party was economically competent, and I don’t see a Corbyn victory changing their minds. “The Prime Minister, Jeremy Corbyn, has just left Buckingham Palace after telling the Queen he is confident he can form a government ….” Does anyone seriously believe this is what we’re going to hear a day after the next general election?

It’s only three months since Labour’s hopes of getting back into power evaporated with a single exit poll. No one with an ounce of common sense could believe that this was a productive atmosphere in which to choose a new leader, and I always feared that old wounds would reopen with destructive force. The furore over how Labour MPs should vote on the Welfare Reform Bill brought to mind Freud’s famous phrase about the “narcissism of small differences”; Labour has five long years to suffer in opposition and this was not the moment for the party to tear itself apart. And while I’ve never been a fan of Tony Blair, my heart sank last week when the general secretary of the Communication Workers Union, Dave Ward, talked about getting rid of a “virus within the Labour Party”.

Hitler notoriously used the “virus” metaphor to dehumanise Jews, characterising them as a sickness which needed to be eradicated from the body politic. Ward’s rhetoric, which went on to describe Corbyn as the “antidote” to the Blairite “virus”, has absolutely no place in democratic discourse.

One union after another has thrown its weight behind the Corbyn campaign, and it’s widely believed that thousands have joined the party just so that they can vote for him. I don’t suppose anyone knows if that’s true; opinion polls suggest he’s in the lead but I thought the last election had made us all a bit more sceptical about the accuracy of polls. I’ve talked to new members in my constituency party in west London and some are supporting Corbyn, but we nominated Yvette Cooper in a secret ballot.

Part of me wonders whether the Corbyn surge is real or is being talked up. The media always look for a line to inject a bit of excitement; in 2010 it was “The Brothers”, a Cain-and-Abel melodrama which did incalculable damage to Ed Miliband throughout his time as leader. The current contest looked even more unpromising at the outset but a slew of “Corbyn to win” headlines has livened it up no end.

What worries me about the Corbyn surge is that it shows all the signs of magical thinking. In this scenario, his disadvantages as a candidate – including the fact that most Labour MPs don’t support him – suddenly become positives. MPs, what do they know? Others have pointed out the illogicality of assuming that giving the Tories an outright majority is a sign that the country secretly wants a left-wing government; Miliband fought the election on a platform somewhat to the left of Gordon Brown, and the result was even worse for Labour than in 2010.

It’s bad enough that some people believe that Corbyn can win in 2020. Even worse is the argument that it doesn’t matter whether he can because restoring the party’s principles is more important than getting back into power. Leaving aside the fact that many of Labour’s principles are intact – its commitments to equality and eradicating child poverty, for instance – this is a species of political puritanism which has dire consequences for real people. Spiteful policies such as the bedroom tax will go on hurting the poor and disabled for as long as the Tories remain in government.

This brings me to the heart of Labour’s self-inflicted wound. What was supposed to be a contest to choose a new leader is in danger of becoming a protracted group therapy session. I’ll still be surprised if Corbyn emerges as the party’s leader next month. But if he does, an irrational feel-good factor will have eclipsed Labour’s will to win.

 

No children. No problem

Independent on Sunday, 19 July 2015

The German Chancellor, Angela Merkel, is sometimes described as the most powerful woman in the world. She’s had a busy week, struggling with the Greek debt crisis, so she may not have noticed a magazine cover which shows her glancing regretfully at an empty cradle – empty except for a ballot box, that is.

Scotland’s first minister, Nicola Sturgeon, who is on the same cover, did see it and was understandably irritated.  ‘Jeezo…we appear to have woken up in 1965 this morning!’ she tweeted. She later praised the accompanying article but described the image as ‘crass’.

If I were pushed, I would probably have guessed that none of the four women on the New Statesman cover – the Home Secretary, Theresa May, and the Labour leadership candidate, Liz Kendall, are the other two – has children. But I certainly wouldn’t jump to the conclusion that, no matter what else they’ve achieved, they’re all secretly miserable.

Of course we will never see a bunch of childless male politicians looking glumly at a rocking-horse, even though it would be easy enough to put together. Luxembourg’s prime minister, Xavier Bettel, who recently became the first EU leader to marry his gay partner, doesn’t have children, as far as I know; neither do the former Tory ministers, Eric Pickles and William Hague. But while statisticians collect masses of data on childless women in the UK – currently around one in five by the age of 45 – they’re not very interested at all in childless men.

Helen Lewis’s article in the New Statesman rightly identifies the greater pressure on women to have children or explain the fact that they don’t. She identifies a ‘motherhood trap’ that causes problems for both groups: working mothers are assumed to be less committed to their jobs, while childless women are accused of being selfish and less rounded.

But why is it ‘an uncomfortable truth’ that high proportions of successful women in politics are childless? Attitudes to motherhood vary dramatically, from women who passionately want children at one end of the spectrum to those who definitely don’t at the other. For centuries, this fact was obscured by the fact that sexually active women didn’t have much choice; my great-grandmother on my mother’s side had six children, my grandmother had four and my mother one. It’s a typical story of the impact of education and widening choices on women’s lives.

I don’t doubt that there are women who find infertility incredibly painful, while others don’t find a partner at the right time. But the picture is confused by an expectation that any woman who hasn’t had children should sound sorry about it, regardless of how she really feels; she’s supposed to say things like ‘I left it too late’ or ‘It just never happened’. It’s OK not to be a mother, in other words, but only if women express sufficient sadness about it.

Someone has to put a stop to this, so here goes: I chose not to have children, and I’ve never regretted it for a moment.