Nine o’clock is bedtime in the Ruscoe house. But it’s not the children 58-year-old Emma puts to bed – it’s her husband Simon, 62, who was diagnosed with early-onset Alzheimer’s six years ago. She is now his full‑time carer.

Emma first noticed Simon’s memory slipping on a family holiday to Greece in 2016. On one gorgeously sunny day while she and Simon were out exploring, they discussed what their two teenage sons, Alex and Ollie, might make for lunch back at the villa.

‘Not ten seconds after we had finished speaking about it, Simon turned to me and said, “What do you think the boys will have for lunch?”’ she recalls.

‘We ended up having a huge argument. I kept saying to him: “We literally just discussed this,” and he insisted we hadn’t.’

This wasn’t the only warning sign on that trip. Simon and the boys were ultra-competitive with each other in board and card games, a big part of their family holidays.

‘Usually Simon would win every game,’ Emma says. ‘But when we were away, he couldn’t even play. We couldn’t get our heads around it.’

At the time, she put these changes down to Simon’s stressful job in IT. Back at home in Solihull in the West Midlands, she watched her husband closely over the next few months. But despite working in adult social care herself, Emma didn’t think of dementia at the beginning. Simon was just 51, after all – surely he was too young?

Yet his forgetfulness did not let up and, after a frightening car journey where Simon was at the wheel and kept forgetting the route, Emma sought medical help.

So began a lengthy battle to have Simon’s symptoms taken seriously. The problem was Simon’s age: medical staff were reluctant to assess such a young man for dementia.

In 2018, with his symptoms getting worse, he was finally accepted to an NHS Memory Clinic, but Emma claims they were simply ‘fobbed off’ there.

‘There were no tests,’ she recalls. ‘We spoke to a psychologist, and she told us Simon was stressed. We received a letter saying categorically that my husband didn’t have dementia.’

Meanwhile, clinicians, and even people close to Emma, suggested that she could be imagining the changes in her husband’s behaviour – that perhaps symptoms of menopause, such as brain fog, were leaving her confused.

So she began to keep a diary to document Simon’s unusual behaviour. She remembers sending him to Tesco with a list and him returning with a bunch of bizarre items she hadn’t asked for ‘but he was adamant he’d bought everything on the list’.

It wasn’t until May 2019, when Emma once again dragged Simon to see a doctor, that at last the signs of cognitive decline were spotted. Eight months later, in early 2020, Simon was diagnosed with early-onset Alzheimer’s. He was just 55.

For Emma, it was both devastating and a ‘relief’ because she could finally get some help for her husband and the whole family.

Her marriage now exists in a strangely altered state – day-by-day she watches her husband’s abilities and memories diminish. As his symptoms progressed, Simon had to stop working in 2021.

He recognises his family and seems at ease in the familiarity of their presence and care, but his cognitive abilities have declined significantly. He still speaks to Emma but his words are often impossible to make sense of.

‘Simon’s not aggressive, he’s not that way,’ she says. ‘But he does get frustrated.’

The couple could never have imagined spending their golden years like this when they met in 1992 through a mutual friend. Back then, Simon had ‘stunning blue eyes’ and a ‘wicked sense of humour’. They got married two years later and Simon delivered a rip-roaring wedding speech that left guests in hysterics.

Their sons were born who went on to worship the dad they loved to play football with.

These are cherished memories – but, for Emma, being confronted by times past can sometimes feel painful.

‘I can’t look back at photographs very often because I do struggle,’ she says, admitting that thoughts of the future they’d hoped to have together leave her feeling low.

Nearly seven years on from his diagnosis, the family has fallen into a routine. Four days a week Simon visits the day centre and on the other days, Emma and sons Alex, now 29, and Ollie, 25, care for him at home. Recently engaged, Alex lives just a seven-minute drive away while Ollie still lives at home.

‘There’s nothing I do that they don’t,’ she says. ‘They do the personal care, the toileting. They have to because otherwise I couldn’t ever have a break.’

Emma still sees friends from time to time – trips to the theatre or short holidays away – but it takes weeks of organisation to ensure Simon will have constant care while she’s away.

The respite is much needed. Frustrated by the extreme challenges of caring for someone with dementia, she isn’t always able to keep calm. ‘I have moments of anger and I lose my temper with him. But it’s not Simon I’m angry at, it’s Alzheimer’s.’

It’s the ‘little things’ that make Emma miss her old life with Simon. As the tech whizz of the house, he would set up all the family’s technology, but when Emma bought a new laptop recently, it was Alex who had to help her.

‘Simon and I would have had a laugh. He would have taken the Mickey out of me for being so useless with computers.’

In the months after Simon’s diagnosis, ‘we learnt a lot and adapted’, Emma says – but what really helped her cope was a phone call with the Alzheimer’s Society, which offered invaluable practical support.

‘I had the best support worker ever,’ she says gratefully. ‘I was really lucky.’

Her support worker opened her eyes to the medical, financial and practical rights she and Simon had – including personal independence payments (PIP) and an annual medical assessment.

Emma says routine is the key to maintaining some sense of comfort and order amid the uncertainty of Alzheimer’s.

‘At 9pm I take him up to bed and we get him ready,’ she says. ‘That can be a challenge at times because his ability to understand instructions is limited.’

Emma then gives him a dose of medication – donepezil, which slows the symptoms of dementia. ‘Then he’ll settle, and sometimes quite quickly. I’ve got a baby monitor with a video to watch him, so I’ll go downstairs.’

Afterwards, she enjoys an hour or so to watch television on her own, or calls a friend to decompress from her stressful day. She still shares a bed with Simon.

‘It’s really important that I can reach out and touch him in the night,’ she says. ‘We still kiss each other goodnight and I still kiss him good morning.’

Eating has recently become more difficult.

‘He has lost the ability to use a knife and fork properly. We have a lot of pasta and things he can eat with a spoon,’ says Emma.

Sometimes Simon will lose concentration during mealtimes and stop eating. Then Emma and the boys will have to feed him.

Though Simon’s speech is now strained and confused, from time to time he’ll surprise everyone with a glimmer of his old sense of humour. Watching a news broadcast a few months ago in which Kemi Badenoch was laying out policies she would implement if she was in power, Simon said: ‘Well, just do it then.’

‘I was in the room with Oliver’s girlfriend. We looked at each other and burst out laughing,’ Emma says. ‘So he did understand.’

It’s moments of lucidity like this that remind her that the man she has been married to for 32 years is still in there.

Despite the enormous toll of caring for someone with dementia, Emma insists: ‘It’s not selfless. He’s my husband and I’ve made a vow. I get pleasure out of looking after him because he is a pleasure and because he’s still in there somewhere. He’s still my Simon.’