A few minutes into my interview with the actress Anne-Marie Duff she tells me about one of the last moments she spent with her brother in his care home.
“I’d been sitting with him while he was sleeping,” she says. “When he woke up I said to him, ‘Eddie, say everything you want to tell me before you go, pal.’ For half an hour he looked me dead in the eye and just talked — although, of course, it didn’t make sense. I feel extraordinarily blessed to have had such a profound moment with my sibling. I knew that I was saying goodbye.”
She takes a long pause and draws breath. As someone known for being fiercely protective over her private life, sitting down with a journalist weeks after her brother’s death, aged 57, from pneumonia brought on by early-onset Alzheimer’s must be — well, can you imagine? Even more upsettingly, he was taken into hospital on the day of their mother Mary’s funeral last December.
“It’s extraordinary,” she reflects, shaking her head. “You couldn’t make it up.”
Duff, 55, is speaking to me at the Alzheimer’s Society offices in central London, because of her frustration at the lack of attention given to Britain’s leading cause of death, for which there is no cure. New research by the charity has exposed a dementia care system that is failing those with the syndrome, from early signs going unnoticed to delays in diagnosis and a lack of support.
Those are all things familiar to Duff, who found fame in the early Noughties in Channel 4’s Shameless (where she met James McAvoy, now her ex-husband, with whom she has a 16-year-old son), has played everyone from Elizabeth I to John Lennon’s mother and won a 2024 Bafta for her role in Sharon Horgan’s Bad Sisters.
With Sarah Greene, Eve Hewson, Sharon Horgan and Eva Birthistle in Bad SistersApple TV+
Eddie was 40 when he started to behave strangely, suddenly unable to make cups of tea, getting on the wrong bus or stopping halfway through making a sandwich, unsure what to do next.
“I knew he wasn’t taking drugs. I knew he wasn’t a heavy drinker. But he was becoming terrible with money — I found out that he had five phone contracts and he wasn’t using a single one,” she says. He lost his job at a polling company, where he managed a department, and couldn’t afford to pay his rent, so Duff found him somewhere to live close to her in Crouch End, north London. “He started having panic attacks and I was just thinking, ‘God, he’s making a mess of his life,’” she recalls. “But at the same time, I had a small child and I had to get on with that.”
Stress or anxiety seemed the most likely cause — at no point did dementia cross her mind. And why would it? About a million people in the UK are living with the disease, but only a small proportion are under 65 — 5 per cent when it comes to Alzheimer’s specifically. While no single cause has been identified, it is thought to be down to a combination of lifestyle, environmental and genetic factors.
“Eddie was a man in midlife and really should be starting his next big adventure,” Duff says. Instead she gave the eulogy at his funeral in March, where the room was overflowing with friends and his favourite music played, including the Velvet Underground and Manic Street Preachers.
Duff describes a happy childhood in the west London suburb of Hayes, in a loving Irish family — her mother worked in a shoe shop, while her father, Brendan, was a painter-decorator — in which her nickname was, and still is, Smudge.
“Eddie was a classic older brother in that he found me annoying and I always wanted him to think I was cool,” she says. “He was very funny — if we were ever at a big family wedding and things went a bit crazy, he’d be there taking care of me and making me laugh. And his record collection was unbelievable — I’ve given it to one of my son’s friends who’s in a band.”
Dementia is a cruel condition at any age. Being diagnosed in your forties — as Eddie was in 2017 — is almost unimaginable.
“I’d just come off stage at the National Theatre when the GP called and said Eddie had walked in. I think he’d had a panic attack and didn’t know where he was,” Duff recalls. Miraculously, given the years many wait for diagnosis in the UK, the doctor immediately suspected a serious neurological issue.
“They did a million tests because they thought it might be some new form of dementia, because he was so young,” Duff says. “I remember the moment he got his diagnosis. He was already so far into the illness that he couldn’t compute it. He was saying things like, ‘Yes, but once this comes to fruition and I’m better.’ And the specialist was trying to say, ‘I’m very sorry to tell you…’ That’s when I called my mum and dad and said, ‘You really need to come.’”
It was devastating to face but, Duff admits, “I was also relieved in a way, because I had been the person talking him down off standing on a chair going, ‘I don’t know what’s wrong with me.’ I could lean on something for the first time, because I’d kind of been dealing with it on my own. You go, ‘Oh, thank God, somebody knows how to handle this, because I haven’t a clue.’”
Eddie, who was single, moved in with her for a few months before they found him sheltered accommodation in the local area. Duff, with her mother and father, would visit two or three times a week, doing his shopping and eating meals together. “He was still so joyful and those visits were very good fun,” she recalls. “I think I laughed more with my brother once he got his illness, because we probably spent more time together.”
Duff describes witnessing a moving act between her father, now 78, and brother while he was in supported housing. “I’d be in the kitchen and turn around and Dad would be giving him a shave. I’d just watch the pair of them, and think to myself, ‘That’s love right there.’”
With Eddie as childrenPhoto courtesy of Alzheimer’s Society/Anne-Marie Duff
The larger problems started when Eddie’s condition began to worsen. Because his accommodation allowed him to come and go, he would wander off and be found by the police in potentially dangerous situations. But while he clearly needed to be moved to a secure dementia-specific home, many won’t take patients under 65.
Duff is angry at the hours she spent trying to speak to the local council only to be met by generic answerphone messages or insistences that her brother was “fine” — despite being, by this time, fully incontinent and unable to dress or feed himself. One social worker even referred to him as a “file”.
It felt, she says, like being gaslit. “I don’t think it’s malevolent, but it’s convenient gaslighting because it is cheaper and easier to place the burden on the family or spouse. I felt like I was going mad a little bit during those months where I couldn’t get hold of anybody. And I was lucky — I wasn’t living with him full-time. I wasn’t worn out by it.”
While she doesn’t want to blame social workers — “I’ve seen with my own eyes the overwhelm they’re dealing with” — she says the quality of dementia care in the past decade has been “like a mudslide”. She wants to lobby the government not only for more investment but for a forensic investigation into a care system that is constantly trying to judge which fire to put out first, driving away burnt-out staff.
She mentions going to visit a potential home for Eddie in north London where the residents “were profoundly overmedicated. They were just sitting in a room and the TV wasn’t even on. It was desperately sad and one of the most shocking things I’ve ever seen in my life.”
Eventually the manager of Eddie’s supported housing helped them to find a place just outside London, which his statutory financial support didn’t come close to covering (the average cost for dementia nursing care homes in the UK is £1,585 a week).
“I knew that I’d have to contribute a lot of money, and that’s fine because I’m Anne-Marie Duff off the telly. But they didn’t know that. What do people do?” she asks. “Living with someone who has dementia is exhausting, frightening and can be dangerous for you both. And you’re just left alone.”
She breaks off to briefly check her phone. Her son, Brendan, named after her dad, is sitting his first GCSE that afternoon and Duff is conscious that he may need reassurance. His uncle’s death hit him hard. “When he was about ten we’d go to Eddie’s flat and he found it incredibly sad and would cry a lot,” she says. “He’s lost the man who used to chase him around the kitchen. I’m sure that if he were here, he’d say that he was just a big teddy bear.”
She won’t be drawn on whether she has a partner supporting her through the grief of losing her mother and brother within a year (“and I don’t talk about my ex-husband because it would be all about him if I did, that’s the misogynistic world we live in”). But she has the backing of industry friends — this month Duff completed a 26-mile trek around the capital, raising more than £20,000 for Alzheimer’s Society, with donations from Horgan, Zoë Wanamaker, Christopher Eccleston, David Suchet and Claire Foy.
Her next challenge is returning to work, starring in a new Helen Edmundson play, Some Woman, at the National Theatre this autumn.
“Praise the f***ing Lord!” she says when I ask about it. “I haven’t been able to work for just over a year because of having to be there for Mum and Eddie.
“I knew that I just had to get through GCSEs and then I’m done, universe, taking care of people.
“I can’t wait to get back to work. I’ve felt lost without it, it’s like a piece of you that’s missing.”
I’m left with the impression that Duff has been humbled — that’s my word — by her experiences. All the way through our conversation she calls me pal, honey and mate, which doesn’t feel luvvy so much as someone seeking a human connection after a period that, at times, felt sorely lacking in it. Anyone who has been left feeling bruised by the care system or the NHS will relate.
“It does feel like you’ve lost your mooring,” she says. “Only at the weekend Dad and I were saying we miss the drive out to see Eddie. You like to think that anything you survive can help you be a better version of yourself. That’s all you can hope for.”
Join Alzheimer’s Society in demanding that dementia be treated like other major health conditions by visiting alzheimers.org.uk/campaigns