'Slowly fading away' - Living with young onset dementia
"The laughter is what I miss the most about Jacqui. She was a very able, confident person. [now] I see that slowly fading away."Paul's wife Jacqui was diagnosed with young onset dementia aged 57. He says it now "affects every single minute of every day".When someone develops dementia before the age of 65, this is known as young-onset dementia. According to the latest NHS figures, almost 1,000 people in Devon and Cornwall have a diagnosis, with over 3,200 in the wider South West region of England.Paul and Jacqui have since sought support at a "wonderful" early onset dementia group run by Plymouth-based charity Memory Matters.
Noticing the changes
Paul said he started to notice Jacqui getting confused and forgetting things during a family trip away, just before his 60th birthday."Jacqui, who had always been exceptional at her work, and the go-to person, suddenly became the person who couldn't do her work. She was struggling, that was really alien to me."With Jacqui's symptoms initially thought to be due to the menopause, and after numerous medical tests, she was diagnosed with young onset Alzheimer's dementia in June 2024.The Plymouth couple have two sons and have been married for almost 40 years.
'Jacqui's still Jacqui'
Paul said his wife was now much quieter than she used to be and her condition affected every moment of daily life."She moves and walks slower. You have to constantly provide support in every area of what she does," he said.However, he said they both remained pragmatic about the future.He said: "The future is what it is. You just have to pick up the pieces and deal with it. "Jacqui's signed up to a drug trial and we're going to travel at every opportunity until the day when we can't anymore. "We'll make the best of it and enjoy while we can."Jacqui's still Jacqui. We can still have a good time, it's just different. You have to stay positive."Jacqui said she "can't wait" to meet her first grandchild, a baby girl, due in early June.
The couple have sought help through Plymouth-based charity Memory Matters since February 2025.Also commissioned to run groups in Cornwall, it provides dedicated, age-appropriate support through its tailored services, access to expert information and on-the-spot drop-in dementia advice, helping people live the best life they can.Paul said, "It's really useful. You can talk openly about anything, as [we're] all going through the same thing. Jacqui seems to love it."
To access such support, a diagnosis is vital, something which can become more complicated in later life. The NHS estimates at least one third of people in Devon and Cornwall with such conditions do not have one.Lorna Robertson, from the Alzheimer's Society, said: "Sometimes women can be misdiagnosed with the menopause or other conditions, such as depression or stress. At that age, there is a lot going on. "So it's really important to seek support, to rule out other things that can be treated."The Alzheimer's Society highlights the six main symptoms of dementia by using its online checklist tool.The NHS said: "Anyone with young onset dementia symptoms - which can include behaviour and personality changes and a decline in language skills - should speak to their GP."Young onset dementia is much rarer than in over-65s.If you or someone you know has been affected by this topic, you can visit the BBC Action Line website.
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