Anne-Marie Duff shares heartbreak as brother diagnosed with dementia in 40s

Actress Anne-Marie Duff has called for "systemic change" in caring for people with dementia as she discussed her brother's battle with the disease.

The Shameless and Bad Sisters star, 54, said society needs to "reinvent the system" for helping those struggling with the degenerative illness, adding: "It's very overburdened and we need a whole new approach."

Duff's brother Eddie was diagnosed eight years ago but has been living with the disease for about 15 years, since he was around 40.

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She told ITV's Good Morning Britain: "The level of support and care has decreased. I've seen the services really suffering and the lack of support just increasing."

She added: "We need systemic change, we just do. We're an ageing population, this is not going to go anywhere.

"Alzheimer's Society have really raised this, there needs to be more specialised training for carers, professional as well as familial, but certainly professional, because a lot of carers don't realise how you should speak to someone with dementia.

"People say to my brother, 'Eddie, remember me?' This is literally the worst thing you can say, but it comes from a good place.

"You need to be patient with people with dementia. It's a different approach entirely."

Dementia is described as a 'syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning,' according to the NHS website. Talking about when she first noticed something was wrong with her brother, she said: "I don't think he would have acknowledged it at that time.

"He was in his mid-40s when he really started noticing. There were funny wee things to begin with ... making a cup of tea and he was doing it all in a very strange way.

"He would get on the wrong bus or he would arrive at completely the wrong time for something.

"Then gradually, gradually, he was unable to hold down a job, which of course meant he couldn't pay his rent, which then, of course meant, and it's just a domino effect, and because he was super young, there's all sorts of questions.

"People think, is he drinking? What's going on? Is he having a breakdown?

"Then, one day, he had a kind of panic attack and he lived around the corner from me, and he just walked into our GP surgery and said, 'I need some help. I don't know where I am, and I don't know what's wrong with me'.

"We had an amazing GP and as soon as that happened, then the wheel set in motion."

She continued: "He's now in full-time care but I have had to fight quite like a Herculean soldier to get my brother some care.

"It's really hard for people out there, and I'm not a carer, I'm not exhausted, I'm not sitting at home managing somebody with a degenerative disease and trying to get someone to listen to me.”

Back in January she discussed Eddie's early onset dementia diagnosis in his 40s - and admitted he didn't believe he wouldn't recover from the degenerative condition.

Anne-Marie told The Sunday Times that she had noticed Eddie struggling to cope - turning up to work late or getting on the wrong bus, and eventually he lost his job as a researcher.

She also opened up about Eddie's condition on BBC Woman's Hour back in December.

She told BBC's Nuala McGovern: “We're at a point now where he's going to need much more care, so we're applying for that, so we're going through that difficult process. And my heart goes out to anyone who's going through just the admin and the logistics of all of that.

“I'd say he's been living with it for about 14 years and he's only a couple years older than me so that tells you how young he was, and he had his diagnosis about eight or nine years ago.

“So yeah it's very, very difficult because you are watching somebody slowly vanish before your eyes.”

Those worried about dementia are urged to call the Alzheimer's Society, for which Duff is an ambassador. The charity can be contacted via the Dementia Support Line (0333 150 3456) or visit alzheimers.org.uk.