My Husband Was Diagnosed With Alzheimer’s at 55—These Signs Were Missed

In the Ruscoe household, 9pm is bedtime. But 58-year-old Emma is not putting young children to sleep. Instead, she is helping her 62-year-old husband, Simon, into bed. He was diagnosed with early-onset Alzheimer’s six years ago, and Emma is now his full-time carer.

The first signs that something was wrong appeared during a family holiday in Greece in 2016. One bright, sunny day, Emma and Simon were out together discussing what their teenage sons, Alex and Ollie, might eat for lunch at the villa.

‘Less than ten seconds after we had finished the conversation, Simon turned to me and asked, “What do you think the boys will have for lunch?”’ she recalls.

‘We had a massive argument. I kept telling him, “We’ve literally just talked about this,” but he was adamant that we hadn’t.’

That was not the only worrying incident during the trip. Board and card games were a favourite part of the family’s holidays, with Simon and the boys fiercely competing against one another.

‘Simon normally won every game,’ Emma says. ‘But on that holiday, he couldn’t even play. We simply couldn’t understand what was happening.’

At first, Emma blamed the changes on the pressure of Simon’s IT career. Once they returned to their home in Solihull, in the West Midlands, she began watching him more closely. Although she worked in adult social care, dementia was not her first thought. Simon was only 51, and surely that was far too young for Alzheimer’s?

But his memory problems continued. After one alarming car journey in which Simon was driving yet repeatedly forgot where he was going, Emma decided to seek medical advice.

Emma Ruscoe first became concerned about Simon’s memory during a 2016 family holiday in Greece

What followed was a long struggle to persuade professionals to take Simon’s symptoms seriously. His age appeared to be the main obstacle, with medical staff reluctant to investigate dementia in someone so young.

By 2018, as his condition continued to deteriorate, Simon was finally referred to an NHS Memory Clinic. Emma says the appointment left them feeling dismissed.

‘There weren’t any tests,’ she says. ‘We spoke with a psychologist who said Simon was stressed. Then we received a letter stating categorically that he did not have dementia.’

Doctors, and even some people close to Emma, suggested that she might be misinterpreting what she was seeing. Some wondered whether menopause-related brain fog was making her confused about Simon’s behaviour.

Determined to record the changes, Emma began keeping a diary. On one occasion, she sent Simon to Tesco with a shopping list. He returned with a collection of strange items she had not requested, yet insisted he had bought everything written down.

It was not until May 2019, when Emma once again took Simon to the doctor, that his cognitive decline was finally recognised. Eight months later, at the start of 2020, he was diagnosed with early-onset Alzheimer’s disease. He was 55.

The diagnosis was devastating, but it also brought Emma a sense of relief. At last, she could access support for Simon and the rest of the family.

Alex, right, and Ollie, left, once enjoyed playing football in the garden with their father

Their marriage now continues in a profoundly different form, with Emma watching Simon gradually lose memories and abilities. As the illness advanced, he had to leave his job in 2021.

Simon still recognises his family and appears comforted by the people and surroundings he knows. However, his thinking has declined considerably, and although he speaks to Emma, much of what he says is difficult to understand.

‘Simon isn’t aggressive; that’s not his nature,’ she says. ‘But he does become frustrated.’

When Emma and Simon met through a mutual friend in 1992, they could never have imagined their later years would unfold this way. She remembers his ‘stunning blue eyes’ and ‘wicked sense of humour’. They married two years later, and Simon’s hilarious wedding speech had their guests in stitches.

The couple went on to have two sons, who adored their father and loved playing football with him.

Those memories remain precious, but revisiting the past can also be painful for Emma.

‘I don’t often look at photographs because I find it difficult,’ she admits. Thinking about the future she and Simon once expected to share can leave her feeling low.

Almost seven years after Simon’s diagnosis, the family has established a daily routine. Simon attends a day centre four days each week. On the remaining days, Emma and their sons, Alex, now 29, and 25-year-old Ollie, care for him at home. Alex, who is engaged, lives only seven minutes away, while Ollie remains at home.

‘There’s nothing I do that they don’t do as well,’ Emma says. ‘They help with personal care and toileting. They have to, otherwise I would never get a break.’

The family marked Simon’s 60th birthday five years after his Alzheimer’s diagnosis

Emma occasionally meets friends, going to the theatre or taking short breaks away. But each trip requires weeks of planning to make sure Simon has round-the-clock care.

Those periods away are essential. The demands of dementia care can be overwhelming, and Emma admits she sometimes struggles to stay calm. ‘There are times when I get angry and lose my temper with him. But I’m not angry at Simon; I’m angry at Alzheimer’s.’

Often, it is the smallest things that make her miss the life they once shared. Simon was the family’s technology expert, setting up computers and devices for everyone. When Emma recently bought a new laptop, it was Alex who had to help her.

‘Simon and I would have laughed about it. He would have teased me for being so hopeless with computers.’

In the months following Simon’s diagnosis, Emma says the family learned to adapt. A particularly important source of help came from a telephone conversation with the Alzheimer’s Society, which provided practical advice and guidance.

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

The support worker helped Emma understand the medical, financial and practical assistance available to her and Simon, including Personal Independence Payment and an annual medical assessment.

For Emma, maintaining a familiar routine is one of the best ways to create a sense of stability in the uncertainty of Alzheimer’s.

‘At 9pm, I take him upstairs and get him ready for bed,’ she says. ‘That can be difficult because his ability to understand instructions is limited.’

She then gives Simon donepezil, a medication intended to slow the progression of dementia symptoms. ‘After that, he settles, sometimes quite quickly. I use a video baby monitor to keep an eye on him, so I can go downstairs.’

Emma usually spends the next hour watching television alone or phoning a friend to unwind. She and Simon still sleep in the same bed.

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‘It matters to me that I can reach out and touch him during the night,’ she says. ‘We still kiss each other goodnight, and I still kiss him good morning.’

Mealtimes have also become increasingly challenging.

‘He can no longer use a knife and fork properly. We eat a lot of pasta and other foods that he can manage with a spoon,’ Emma explains.

Simon sometimes loses focus while eating and stops altogether, leaving Emma or one of the boys to feed him.

His speech is now strained and confused, but occasional flashes of his former humour still emerge. A few months ago, while watching a news report in which Kemi Badenoch described policies she would introduce if she came to power, Simon remarked: ‘Well, just do it then.’

‘I was sitting in the room with Oliver’s girlfriend. We looked at each other and burst out laughing,’ Emma recalls. ‘He had understood what was being said.’

Those brief moments of clarity reassure Emma that the man she has been married to for 32 years remains present beneath the effects of the disease.

Caring for someone with dementia has taken an enormous emotional and physical toll, but Emma rejects the idea that her role is purely selfless. ‘He’s my husband and I made a vow. Looking after him brings me happiness because he is a pleasure, and because some part of him is still there. He is still my Simon.’