Find out more about life with young onset dementia and how you and your family can adapt after a diagnosis.
Dad was the nicest person you could ever hope to meet. He was very calm, happy, caring, and generally enthusiastic about life.
Dad was also very intelligent and had a PhD in biochemistry. He always loved helping us with our homework when we were younger. I could go to him with any issue and he would always find a way to help me fix it.
Dad was diagnosed with young onset dementia aged 62
We first noticed changes in Dad’s speech. He struggled articulating himself and couldn’t find the words to express what he wanted to say. Dad knew something wasn’t right and decided to book a private consultation with a neurologist. He was diagnosed with young onset dementia aged 62 – I was 22 at the time.
The initial progression of Dad’s dementia was very slow. He decided to retire following his diagnosis, which meant we got to enjoy time together as a family and went on lots of holidays. He remained independent for around four years.
It felt really unfair
Over time, Dad lost the ability to form words. It got to the point where family and close friends couldn’t understand him and eventually, he stopped talking to us altogether.
My grandmother was also living with dementia at the same time as my dad and was in a care home. Watching her deteriorate prepared me for what was to come with Dad. It was strange to have both a grandparent and parent with the condition.
It felt really unfair that Dad had to go through this so young as my grandmother was 20 years older. I didn’t have any friends who were going through anything similar. Their parents were young, fit and healthy.
The Dementia UK website was a great source of support
When Dad started to deteriorate, I looked at the Dementia UK website to see what support was available. There was a lot of useful information about young onset dementia that helped us to care for Dad. We also called the Helpline and spoke to a specialist dementia nurse who helped us find local community centres that could meet Dad’s needs.
Reading other people’s stories on Dementia UK’s website was comforting. It was helpful to see that people living with dementia could still enjoy life and that other families were in the same situation as us. It made me feel less alone and helped me find ways to cope.
Dad is still motivating me
Towards the end of his life, Dad was admitted to a care home and sadly passed away in November 2021. Mum tucked him into bed one evening and we had a call an hour later to say he had died. Even though it was expected, it felt like a shock. I had been grieving for the dad I lost to dementia for years, but it still hit me like a tonne of bricks.
My mum, siblings and I remember and honour Dad every day. My sister and I even ran the Royal Parks Half Marathon for Dementia UK which is a testament to him. He is still motivating me and pushing me to break through boundaries that I never thought I would, even though he has left this earth. I’ve enjoyed remembering him this way and giving back to a charity that did so much for us at such a difficult time.
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