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Johnty’s story: "I felt like I was going to lose my best friend"

Johnty’s best friend Jude was diagnosed with young onset Alzheimer’s disease in 2021, at the age of 57. Here he reflects on Jude’s diagnosis and the impact it has had on their lives.

Johnty and Jude

Jude and I have been close friends for over 40 years. We met when we were teenagers and shared flats in London together for many years.

Along with Jude’s partner, Becky, we share two children, and with my partner, Andy, we’re a family.

Becky and I first noticed changes in Jude’s behaviour in 2016. She was anxious, confused and started forgetting things. Initially Jude assumed these were symptoms of menopause, but things got progressively worse and eventually Jude’s work as a stage manager was affected.

Becky encouraged Jude to go the GP and she was diagnosed with young onset Alzheimer’s disease in 2021, aged 57.

When Jude got the young onset dementia diagnosis, it was an awful confirmation of a suspicion that we so hoped would be something else.

I felt a mixture of emotions. I was devastated, frightened and overwhelmingly sad. I was worried that I would lose my best friend. I was also angry at the cruelty of it.

Jude was understandably shocked and upset too. She was most worried for the people around her and the impact the diagnosis would have on our family.

Jude and Johnty

I think there is a stereotype that a person living with dementia has a seriously reduced capacity to live life. It was remarkable how quickly Jude adopted her usual positive approach after the diagnosis and embraced her new way of living.

It’s important for Jude to stay active as it boosts her self-worth and mood. Jude says yes to most things, and she is always busy. She takes part in lots of activities including volunteering, outdoor swimming, learning Spanish and singing in a choir.

Jude has lots to contribute to the world. She has always loved life and seized its opportunities, and she still does. She inspires me to live every day to the fullest.

My advice to anyone with young onset dementia is to grab life and live in the present.

It can be frightening when your whole world changes, but you’re not alone, so it’s important to reach out for support. It’s comforting to know that Dementia UK is there to support us when we need it. Sometimes we just need to talk to someone who has expertise on young onset dementia and who understands what we’re going through.

Jude is an amazing example of how you can carry on living your life after a dementia diagnosis. She is embracing her new life and making the most of every moment.

Her life has changed, but it’s not over.

Jude and her family are supported by Young Dementia Oxfordshire, a service provided by Dementia UK.