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'CRUEL DISEASE'
TV HARDMAN Ross Kemp has stared down terrorists and dodged bullets in his gritty documentaries. But nothing prepared him for the emotional toll of filming his latest one.
Two-part ITV series Ross Kemp: Living With Dementia sees the star, who played Grant Mitchell in EastEnders, chat to his friend Scott Mitchell, who is married to Ross’s former on-screen mum Barbara Windsor.
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Scott is 82-year-old Barbara’s primary carer following her diagnosis with Alzheimer’s disease six years ago.
Here, Ross reveals the devastating effect the disease has had on her and those closest to her.
“WHO are you? What are you doing here?”
I’ve been in Barbara Windsor’s house for just a few minutes. I’m sitting down with a cup of tea and a biscuit with my friend of three decades. I’m taken aback, but I can’t show it.
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When I arrived, she greeted me with a hug, as one of her closest friends.
Barbara was my “TV mum” on EastEnders and is hilariously funny and vivacious, with a rapier wit — we’ve always had a giggle, on and off set. But now she clearly has no idea who I am.
On the wall opposite where I’m sitting on the sofa, Barbara’s husband Scott has put up a “memory board” to remind her she is married to him, he loves her, and that this is her house — but mainly to remind her who she is.
The impact of her dementia can lull you into a false sense of security.
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This is a disease where your own home becomes unfamiliar, your memories slip from your grasp and you don’t recognise your best friends or the man you’ve been married to for 20 years.
Scott describes Barbara’s Alzheimer’s as like a computer screen with all the graphics being wiped from the top down, with the short-term memory going first.
It is the reality for many people and their families living with dementia, one of Britain’s biggest killers.
Currently about 850,000 people have it in the UK — with the number predicted to double in the next 30 years — and someone is diagnosed with dementia every three minutes.
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I’ve been exploring the issue for a new series of Living With on ITV, to get a vivid insight into the reality of their lives.
I’ll be honest — it was an emotional rollercoaster and their stories often brought tears to my eyes.
It’s impossible for me to walk in their shoes. But by spending time with them and their carers — generally their loved ones — I’ve tried to gain a greater understanding of how they cope with this devastating disease.
My own grandmother had dementia during the later stages of her life, but the immediate inspiration for making this two-part special was speaking to Scott.
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I’ve been friends with Barbara and Scott for 25 years. Seeing how Barbara has suffered, and the effect it has had on Scott, drove me to take a look into the issue.
I found it is fast becoming central to Britain’s social care crisis. Due to her condition, Barbara didn’t take part in the film.
I see her as often as I can — every couple of months before the lockdown — and the deterioration in her condition has been shocking and to those of us close to her, deeply upsetting.
Scott spoke candidly, to give people an insight into this horrendous disease and the human cost and financial burden it places on sufferers and their families.
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As her main carer, he told me in the six years since Barbara was diagnosed with Alzheimer’s — a form of dementia — it has turned their lives upside down.
He says: “It’s not the Barbara that I knew. It’s not my wife Barbara any more.
"I’m Barbara’s carer, I’m still her friend, you know, I still love the bones off the woman but it’s not the Barbara I knew, and you [did], that I live with.”
He spoke to me about the moment he realised there was an issue: “There was a change in her personality.
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“You and I both know Barbara had many facets of her personality, but there was just something about her that started to go.
“I felt her joy had started to go, and a slight vacancy had started to creep in. There was a more serious side to her.”
Scott describes the moment the specialist told them she had Alzheimer’s: “She [Barbara] just looked at me and she held her hand out and said, ‘I’m so sorry’. She almost whispered it to me.
“I just held her hand and said, ‘It’s OK, we’re going to be OK’. Inside, I went numb. It was such a shock, Ross. At that moment in time, I don’t know really if I comprehended the whole way forward.
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“Her life has been incredible and to think that there’s so little memory of that now is just quite awful.”
Scott admits the emotional turmoil has been difficult to handle. He says: “My heart sank the first time Barbara looked at me and said, ‘I’m sorry, who are you?’
"Because your whole history — 24 years or so at that time — is just gone in their eyes. She’s just looking at a stranger and that’s very hard to take.
“It flips between now, that I am the most important part of her world, or she will look at me and say, ‘Do you know where my husband Scott is?’
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“Sometimes she’ll say to me, ‘Don’t be so stupid, you’re not my husband!’ I actually like seeing those glimpses of her, Ross — because it’s the old Barbara, when she comes out with something funny like that.
"And that’s the other thing about this illness — it’s cruel, because it can lead you into a false sense of security.”
My heart sank the first time Barbara looked at me and said, ‘I’m sorry, who are you?
Scott Mitchell
In the first of the two ITV programmes I meet 56-year-old Jerry Beckman, who has early onset dementia — one of 42,000 people aged under 65 with it — and Parkinson’s disease.
Jerry, an actor, can no longer work, his mobility is deteriorating and Louisa, his wife, is his carer. He tells me how this cruel disease is affecting his state of mind.
He says: “That’s the word, it’s cruel . . . I don’t know how you [his wife] are still here. I wouldn’t have got past step one without you.”
Louisa is the family’s sole breadwinner and takes on much of the responsibility of bringing up their 12-year-old son, Jack.
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She is one of 700,000 people in the UK who are carers for someone with dementia. She tells me: “I feel huge guilt . . . There are many different levels of guilt. I feel guilt because I can actually escape.”
In the second film, I meet Andrew and Kelly Mills, whose five-year-old daughter Penny has a rare disease called Sanfilippo syndrome.
It is a form of childhood dementia, and the average life expectancy is between 12 and 20. Last year, Penny knew 150 words, but the disease reverses her development.
Kelly says: “She used to be able to say Mummy, Daddy . . . but now all we get is noise, we don’t get any words from her. It’s heartbreaking.”
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Her parents have decided to put aside their feelings of despair to concentrate on making the rest of their daughter’s life as full of laughter as possible.
Kelly says: “That’s the part that scares me the most, her not knowing who I am and forgetting who we are.”
Scott and Barbara have been vocal in campaigning to help people with the cost of caring for those with dementia, and in 2019 Prime Minister Boris Johnson pledged that people should not have to sell their homes to pay for care.
Around 400 people are forced to do so every week.
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In the second programme I meet Meryl Smart, who faces having to sell the house of her mum, who has dementia, to pay her £70,000-plus annual care home fees.
The PM’s pledge has come too late for Meryl, who says of her mum: “She’s never spent a penny on herself. The one thing she really loved was the house and the garden, this is where she loved to be.”
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Making these programmes, it became clear that those suffering from dementia, and their families, are in great need of quality affordable care — something that needs not to be forgotten.
- Ross Kemp: Living With Dementia starts on ITV tomorrow night at 7.30pm.
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Dame Barbara Windsor says Alzheimer's is a 'cruel illness' in Good Morning Britain video
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