‘My husband was diagnosed with early-onset Alzheimer’s at 56 – going from partner to carer is incredibly painful’

The wife and daughter of a Surrey man who was diagnosed with early-onset Alzheimer’s aged 56 said they feel they have “lost the person that we loved in different stages”, and describe it as “a cruel disease” that “robs the person of who they are”.

John Green, now 64, was diagnosed with Alzheimer’s disease – the most common cause of dementia in the UK, according to the NHS – in 2018. At the time, his youngest daughter Evie was just 14, and she and his wife Janet became his full-time carers.

“Dementia is not choosy. It can affect anyone at any age, and John was just 56 when he was diagnosed with early-onset Alzheimer’s,” Janet Green, 62, told PA Real Life.

“At first it was just small things, forgetting appointments and struggling with work, not being able to use his computer. But eventually he had to leave his job in the civil service, and he wasn’t able to drive very quickly after that.

“Although the diagnosis gave us answers and we could understand his behaviour better, it marked the start of something completely new to us.

“A whole new life for us, really.”

According to the NHS, Alzheimer’s disease is most common in people over the age of 65, though around one in every 13 people with the disease is under 65.

It is a progressive condition that affects multiple brain functions, and can cause sufferers to become confused and disorientated, have problems with speech, language and mobility, and experience behavioural changes such as aggression.

“No-one can really prepare you for how severe dementia can become,” Janet said.

“The personality changes… The unpredictability of what they might do next. Every new change has brought uncertainty and anxiety to us, sometimes embarrassment.

“But we kept trying to meet it with patience, love and humour where we could, and still do.

“Through everything, we’ve tried to stay positive, to make memories and to enjoy the moments where John is still John.”

When John was diagnosed in 2018, the youngest of his three children – his daughter, Evie – was 14 years old. As her older siblings had already moved out of the family home, Evie became John’s carer alongside Janet, helping him “in ways that children shouldn’t have to”.

“I felt like I had to mature very early on,” said Evie, now 22.

“Especially during Covid, that was a time where mum was still going to work, and I was not at school or college at that point. So then being in a house with just my dad, it really was a confrontational moment for me to actually see what was going on.”

“I felt a lot of anger, where I was like: ‘Why should I be making the meal for my dad? Why isn’t he making the meal for me?’, things like that,” she added.

“We used to have a really close relationship, I was definitely a daddy’s girl growing up. He was one of my best friends. So it was really hard.

“As his condition changed, I found myself feeling things that I didn’t expect: Anger, frustration, even moments of hatred – just really, really angry, and I would avoid him a lot. That’s hard to admit, but it’s true.”

John remained living at the family home until 2025, when Janet made the difficult decision to move him into a care home, which she said she still feels guilty for. As his condition deteriorated, she and Evie found it increasingly difficult to care for him, and Janet said they “feel like we’ve lost the person that we loved in different stages”.

“You go from being a partner to being a carer, and that shift is incredibly painful,” Janet said.

“There’s still a lot of anxiety, worrying about the future and John’s long-term care, worrying about money, but we get through it with support.”

Janet and Evie first came across the charity Younger People with Dementia (YPWD), in 2020. The charity was founded in 2012 to fill a gap in services, with most dementia services designed to meet the needs of older adults.

“They’ve been an absolute lifeline to us, offering us guidance, understanding and a sense of community, like a family,” Janet said of YPWD, who not only offered a community to the mother and daughter but also respite and activities for John to participate in.

“He absolutely loved it,” Evie said of the YPWD activity sessions, which include equine therapy, pottery painting, walking groups, and even a choir that Janet also got involved in.

“We really struggled to entertain Dad at home… We were so lucky that we had these activities for him to go to, because otherwise, honestly, we wouldn’t have known what to do. We’re really grateful for that.”

“The first choir, he said: ‘I’m not going to sing. I’m not going to a choir’,” Janet recalled.

“I’m not actually sure he ever did sing, but he certainly danced. He danced and joined in and loved it, and never stopped going after the first one.”

Evie has been able to access support groups for young carers through YPWD, which she said has “made a huge difference, just knowing that you’re not alone”.

Janet also “started meeting other carers, other partners”, and she said “the connection immediately was great, because everyone was fighting to keep their head above water, really”.

Janet has recently started volunteering for the charity, “because I just love (it) so much”.

It’s difficult to say what the future holds for John. He was recently very unwell with pneumonia.

“Now I’m sort of accepting the fact that he won’t be at my wedding,” Evie said.

“And that’s another hurdle to overcome.”

However, Janet said that “the thing that’s got us through everything is love and kindness and laughter”.

To others facing an early-onset Alzheimer’s diagnosis, Janet said the best way through is to “get out there and find help, because I don’t know where we’d be without help”.

Younger People with Dementia are leading a campaign, Dementia Doesn’t Care, with a new short film titled Little Rock highlighting the impact of early-onset dementia on families. To find out more and to watch the film, visit: www.ypwd.info/dementia-doesnt-care.