Alzheimer’s Society chief Jeremy Hughes: ‘Dementia can be a winner from this general election’

https://www.theguardian.com/society/2019/nov/06/jeremy-hughes-alzheimers-society-dementia-winner-general-election

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As the Alzheimer’s Society celebrates its 40th anniversary, the outgoing head is confident social care reform will happen

When he recently stayed in a care home to experience life as a resident, Jeremy Hughes witnessed the admission of an elderly woman from hospital. Before she was even shown her room, she and her daughter were taken to the manager’s office and asked how they intended to meet the difference between the home’s fees and what the council was prepared to pay on her behalf.

“The inhumanity when people are under enormous stress has got to end. We cannot put up with that,” says Hughes, chief executive of the Alzheimer’s Society, the UK’s leading dementia charity, which this week celebrates the 40th anniversary of the letter that led to its founding. The charity wants social care reform to be as big an issue in the general election campaign as it was in the 2017 contest.

It was controversy over the Conservatives’ plans for reform, branded a “dementia tax”, that sent their campaign spinning off course two years ago. The Alzheimer’s Society coined the term in 2010 to describe the penalty – typically £100,000 – that people with dementia already faced for enduring a condition not covered by free NHS care. That remains the case today.

Hughes, 62, thinks there’s “a fair chance” of winning reform if the issue gets traction over the next five weeks. The Alzheimer’s Society will be urging election candidates to meet some of the estimated 850,000 people living with dementia, and their carers, to hear what needs to change. “We’ll gladly help them to do that,” he says. “But we’ll also publicise them if they don’t.”

It’s a comment reflecting his reputation as a wily campaigner who, during his nine years in the job, has more than doubled the charity’s annual income to about £110m, signed up 3 million people to be “dementia friends” – an idea he readily admits to having pinched from Japan – and stimulated the set-up of more than 400 dementia-friendly communities. He has also been willing to work with both the Daily Mail and Daily Express newspapers on their respective campaigns against the dementia tax – even though he acknowledges their main focus is enabling homeowners to avoid having to sell their properties to pay for care.

He is, he says, aware of the risks of framing the debate in a way that not only excludes people whose care is funded by the state, but also makes the economic issue the overriding concern at the expense of care quality, and marginalises younger people with support needs. His relationship with the mid-market tabloids is, he admits, “love-hate”. But it has undoubtedly helped win him regular access to decision-makers up to and including Downing Street.

In September, he accompanied actor Barbara Windsor, who has a dementia diagnosis and is an ambassador for the Alzheimer’s Society, for a highly publicised meeting with Boris Johnson after he had promised extra funding for social care. “He was desperately trying to get her to say how wonderful he was,” says Hughes. “She, to her great credit, stuck to her guns and said, no, it was not marvellous – people still had to pay for their own care.think he thought about it more in that half-hour than he had ever thought about it before.”

Other charities would give a lot for such access. Does he ever sense any jealousy, or get told that the charity is skewing the broader social care agenda? “No, I know what you are getting at, but as [NHS national clinical director for dementia] Alistair Burns says, if you get it right for dementia, you get it right for everyone else. I very much believe that dementia can be in the vanguard of social care reform.”

He is now “more confident than before” that long-awaited reform will happen, including action to address what the Alzheimer’s Society says is a need for a £2.4bn a year “dementia fund” for England to end unfairness in the system. He is also upbeat about the prospects of a breakthrough in research into drugs for dementia, after it emerged

“ that US company Biogen is seeking regulatory approval for a drug, aducanumab, which has shown new promise in tests in slowing mental deterioration. We are not that far from having a non-invasive diagnostic tool to identify those at risk in their 40s and 50s, with the potential now also of developing a statin-type drug that can arrest progress of the disease,” he says.

Hughes has announced he will be leaving the Alzheimer’s Society next year, completing a decade as chief executive, and recruitment of his successor is under way. The news coincided with reports of unrest over management style among the charity’s 2,200 paid staff, but he insists there is no connection, and points out that the most recent staff survey – which achieved an impressive 75% response rate – found that 91% were proud to work for the organisation.

He will stay in the field as chair of the World Dementia Council, which he takes up next year, but he is looking for another executive post in a different, if related, sphere. “Some kind of public services role, which may or may not be a charity,” he muses. “I’ve always helped organisations and causes move forward, make a step change, and I’m keen to do that again with somebody if they want me.”

Curriculum vitae

Age 62.

Family Married, two adult sons.

Lives Dorset; London during the week.

Education Harrow school (son of chaplain); St Edmund Hall, University of Oxford (BA geography).

Career 2010-present: chief executive, the Alzheimer’s Society; 2005-10: chief executive, Breakthrough Breast Cancer; 2003-05: head of external relations and communications, International Federation of Red Cross and Red Crescent Societies; 1999-2003: director of marketing and income generation, British Red Cross; 1996-99: director of public affairs, Leonard Cheshire; 1994-96: director of marketing and communications, Muscular Dystrophy Group; 1991-94: assistant director, policy and information, NCH Action for Children; 1986-91: director, LMS Public Relations; 1983-86: political officer, Co-operative Retail Services, London region; 1980-83: joint general secretary, Chile Solidarity Campaign.

Public life Vice-chair and chair designate, World Dementia Council; member, NHS Assembly; made CBE in 2015.

Interests Walking, gardening, achieving social change.