Real stories

Facing dad's young-onset dementia diagnosis as a family

Dad was always active. He played golf, hockey and loved swimming, even completing triathlons. He was a very hard-working and successful management consultant, travelling the world for business meetings. 

He was popular at work and very sociable, always helping younger colleagues to progress.

In hindsight, we noticed signs of confusion and strange decision-making as early as 2016, but it was early 2019 when we realised his symptoms had worsened.

Dad masked dementia symptoms

My siblings and I remember noticing different signs of dad’s dementia. 

Driving became difficult even though he always loved cars. 

My sister noticed dad spilling water when making tea, and my brother noticed it when golf – a sport dad loved –  became extremely challenging.

Dad was great at masking and always had a joke ready to explain why he had only unloaded one side of the dishwasher, but we knew he wasn’t quite right.

His confusion was becoming noticeable to others too.

No quick fix

Dad realised he was struggling and took himself to the doctor in May 2019. We’re so proud that he took that first step. 

Initial blood tests were followed by appointments with specialist doctors. 

There didn’t seem to be a quick fix, and we started to realise something serious was going on.

In early October 2019, I came home excited to tell mum and dad about my first day at work after graduation. I found Mum on the sofa in tears because dad had been diagnosed with young-onset Alzheimer’s disease. 

Mum always says this is the day that all our lives changed forever.

We couldn’t change it – even though we desperately wanted to – and would need to adjust to it instead.

Dementia changed our dad and our lives

Life for dad got harder day by day. He could sense his confusion and told us that he hated it.

His diagnosis forced him to stop driving, and he was very sad as he enjoyed driving us around so much when we were younger, taking us swimming or on long dog walks in the park.

Most of the time he was in a good mood and fun, other times he would become quite emotional, angry or frustrated.

Everyday tasks became more difficult as the dementia advanced. We now needed to accompany dad whenever he went to the kitchen to keep him safe. 

Dementia affected sleep, leaving both him and Mum very tired. Dad had his medications, but meeting his changing needs was a constant battle.

Everyday tasks became more difficult with dementia

When we went shopping, I not only needed to concentrate on my list but also on where dad was and whether his dementia was making him slip things into his pockets or say offensive things to strangers.

Sometimes people didn’t understand that it was the dementia that was making him act oddly.

Dad went from being able to have fairly normal conversations, searching for a few words or names, to only being able to answer simple questions. 

I use work jargon like “let’s loop back round to that” because he remembers that and engages with that language. He still smiles when I say that “I’m waiting for Tokyo to return my call”.

We try and connect with his older memories whenever possible, and if he smiles that’s a huge bonus.

Despite the dementia advancing, Dad managed to stay remarkably fit, and we went skiing in January 2024. The whole family helped to get him up a slope, but he was able to ski down. It was as if his brain had forgotten, but his body still remembered.

Unfortunately, gardening and long walks – both things he loved - are out of the question now. Even stairs are a challenge.

Dad also asks after his mum and dad, who died years ago. We don’t want to upset him, so it’s kinder to tell him a white lie that “they’ll be here soon”.

Friends couldn’t relate to what we were going through

Dementia affects the whole family – life can’t be the same again.

I was only 22 when bad was diagnosed. My older brother, aged 23, was working abroad and our younger sister was in her first week at university.

None of our friends could relate to our experience so they couldn’t support us in the ways we needed.

We have adapted over the years, moving back home at different times depending on mum and dad’s needs, but this has affected every part of my life, and I think it may affect my whole future.

Fundraising and going to Memory Walks to make a difference

We fundraise to make a difference for all families facing dementia.

My brother ran a marathon, and my sister completed the Three Peaks Challenge! Together, we have raised almost £5,000.

We chose to raise money for Alzheimer’s Society because they offered a community when we felt so isolated.

In 2024, mum, dad, our dog Honey and I did a Memory Walk together in Surrey. 

We could feel kindness and empathy all around, so we knew we didn’t have to worry about dad.

I would recommend it without hesitation! We met old friends, made new ones and raised money together as a community. It will always be my favourite day of the year.