TONY OFFERS HELPING HAND
After losing both of his parents to dementia, Sir Tony Robinson has a special insight into how hard lockdown has been for families h by the disease. Luke Rix-Standing reports.
BEST KNOWN for playing Baldrick in Blackadder, Sir Tony Robinson is hard man to pigeonhole.
An avowed polymath, the actorturned-presenter-turned-authorturned-activist has fronted everything from Time Team to a History of Britain, written a ton of children’s books, and spent several years on the National Executive Committee of the Labour Party.
After losing both his parents to dementia, Robinson became an ambassador for Alzheimer’s Society, and during lockdown, has been helping raise money for their emergency fund.
“Both my parents had Alzheimer’s, so for about 15 years, Alzheimer’s was the main thing in my life, apart from my work and my kids,” he says.
“Towards the end of my mum’s life, I made a documentary called Me And My Mum around the issues surrounding dementia and care homes, and the reaction was extraordinary.
“I got so many heartfelt, handwritten letters from carers and people with dementia, saying that their situation was ghastly, and something had to be done. So, when the Alzheimer’s Society got in touch, I was more than pleased to be an ambassador. When you have a terrible experience, there’s very little you can do on your own – large organisations can do a lot more.”
Figures released on Friday by the Office for National Statistics revealed there were over 5,400 more deaths than expected due to dementia and Alzheimer’s disease in England and Wales between March 7 and May 1 – 52 per cent higher than average. The ONS said that undiagnosed Covid-19 was a “likely explanation” for the dramatic rise in death rates among this section of the population.
Speaking before the statistics were released, Sir Tony says lockdown has been very difficult for people with dementia.
“It’s a terrible time – how can you look through a window at your loved one, and say ‘I’m not allowed in’? People with dementia have a tendency to feel frightened and isolated, and now they actually are isolated, and they don’t understand why they can’t see their family.
“The people who look after our elderly are paid very poorly and there’s a huge turnover of staff, so carers don’t have time to learn particular needs. Our care service needs to be integrated with our NHS – every Care Minister, Tory, Lib Dem and Labour, from the last 20 years has said so.”
He says it is vital that people caring for relatives diagnosed with dementia take some time for themselves if possible.
“You have to look after yourself, and let other people help – you’re not going to be any good to anyone if you’re exhausted. I remember when my mum had problems, I thought I was the only person in the world dealing with them, and it made me feel useless and inept.
“One of the most important things Alzheimer’s Society has done is set up a support line for carers and people with dementia, and you can call up and find support virtually anywhere in country.”
Sir Tony’s father Leslie died in 1989 and his mother Phyllis in 2005 – but he says the medical advances he had hoped for since then are yet to come to fruition.
“When my mum and dad had Alzheimer’s, I thought technological advances would solve everything by the time I was old enough to have dementia myself. It’s like with Covid – we all thought there would be a quick fix, and now people are saying we may never find a vaccine.
“Public understanding of dementia has improved, but in the long term, it’s very important we remember that the people who suffered most during Covid were the elderly.”
Sir Tony, who spent almost a year living in Leeds in his 20s as part of his stint in repertory theatre and was the first actor on stage at Leeds Playhouse in 1970, says while lockdown has affected his professional plans, he has fewer cause for complaint than most.
“I had probably my best year for a decade coming up, and in one day of telephone calls, all my future work disappeared. If that was just me, I’d have been mortified, but everyone is in the same boat.
“Three days before lockdown, my wife found a rescue dog at the RSPCA in Derby, so we picked up a westie called Holly Berry who has transformed our lives. I’ve also been exercising – I’ve lost 22lbs, and it was 22lbs I needed to lose – and like so many people, I’ve done a huge amount of gardening. There’s a great pleasure in being around long enough to see bulbs turn into flowers.
“I’m very privileged – I’m not looking after an elderly person, I have a small garden to potter around in, and I haven’t got three kids under the age of five. I’m not complacent about it – I feel bloody grateful.
“I think the world is an extraordinary place, and watching those bulbs grow into seedlings just doubled that belief. The luxury of my life has been that people have consistently asked me to do lots of different things, and when I’m part way through one thing, I’m always thinking ‘I wonder what will be next’.”
He says that one of the changes he has made as a result of lockdown is an effort to read more great literature.
“This is so poncy, but every week I’ve been reading a classic author whose books I’ve never tackled. Last week it was TS Eliot, this week it’s Virginia Woolf, and next week it will be Proust.
“I’ve been tweeting that I don’t understand Eliot’s The Waste Land at all, and the support from the virtual community has been Twitter at its best. When you’re as opinionated as I am, you sometimes get clobbered on social media – but I kind of enjoy that as well.”
Robinson served on Labour’s National Executive Committee between 2000 and 2004 but quit the party in May 2019 after almost 45 years in protest at Jeremy Corbyn’s leadership, its stance on Brexit (he was a vocal campaigner for a People’s Vote) and its handling of anti-Semitism allegation. But he rejoined in April this year following Sir Keir Starmer’s election as leader, describing Corbyn’s time in charge as a “moral disgrace”.
So is he hopeful about the future? “All we can say at the moment is that the country is going to be very different – through financial problems, our relationship with Europe, and the fact that we may have to live with this disease for a long time.
“We can choose optimism and make the best of that, or we can choose pessimism and say ‘everything is going to be awful’. It’s about where we direct our energies.
“I’ve always wanted to end my days having tried to make things better. I don’t want to lie on my death bed moaning about how bad things were, and realising I hadn’t done anything about it. I still believe, as I did when I was 13, that though we can do little on our own, together we can move mountains.”
■ If you’ve been affected by Alzheimer’s, contact the Dementia Connect support line on 0333 150 3456, or visit alzheimers.org.uk.
You have to look after yourself and let other people help. When my mum had problems, I thought I was the only person in the world dealing with them, and it made me feel useless.
Sir Tony Robinson, on caring for loved ones with dementia