‘Who are you?’ Mum turned to me and asked.
We were all together as a family celebrating my 30th birthday.
I don’t even know how I mustered the courage to respond, but I said, ‘I’m Sarah’, to which she replied, ‘That’s a nice name’.
She didn’t recognise her daughter of 30 years. Initially I didn’t feel anything other than complete shock. Although I knew this day would come, it was still hard to take. Nothing can truly prepare you for that moment.
From that day on, the reality of Mum’s cognitive decline with dementia really hit home.
Unfortunately, two years after this, she died at just 56 years old – such is the sad reality of young onset dementia.
The earliest symptoms we noticed in Mum – over seven years before her diagnosis, when she was around 45 years old – included social withdrawal from friends, groups and fitness classes and evenings out with colleagues, as well as a lack of enthusiasm.
This was out of character for Mum, but she had just lost her dad and it was dismissed by her GP as depression.
But after a few years of this, I had a feeling something else was at play.
So in her early 50s, I did an online memory test with her – she scored just five out of 20, so I took her back to the GP, where I requested a CT scan as a result of the decline in her cognition.
When the results came back, I was told that the scan showed frontal lobe atrophy (shrinkage of the front of the brain) – which is common for people living with dementia – but we still couldn’t get a diagnosis.
During this time, Mum’s speech was declining and she was unable to string together a sentence. Due to the nature of the damage to the frontal lobe, her behaviour would also sometimes be more troubling.
She would say socially inappropriate things and would often swear, which she had never before done.
Mum was very unnerved by what was happening – a mixture of anger and sadness.
We joined the waiting list to be seen at the memory clinic but decided to go privately to get more information – and it was through this that Mum was formally diagnosed with young onset dementia at just 52 years old.
The consultant explained to Dad and I that Mum had around three to six years left to live following the various scans and tests that they had performed.
People would often make comments that Mum was too young to have dementia and it was only ‘what old people get’
The journey after the diagnosis had its highs and lows. We laughed and cried, took Mum on holiday to several places like Disneyland and Gran Canaria while she was still able, and we would go for days out around the UK together.
On some days, she would sit and cry with me and say that she was worried that she would forget who her family was because it’d be really distressing for her and me.
The whole experience inspired me to become a dementia specialist Admiral Nurse with the charity Dementia UK. I now support families who are struggling to come to terms with the illness and help families with end-of-life-care.
It was support I wish we’d had.
Dad would say that friends that they had both known for years would stop seeing them because they were afraid of what to say or they didn’t want to upset Mum in some way. This resulted in them both becoming socially withdrawn, which neither of them had ever been.
On top of that, people would often make comments that Mum was too young to have dementia and it was only ‘what old people get’.
There is still a lack of education around young onset dementia today.
It could, at times, make us feel isolated and not listened to.
Unfortunately, there was no support where Mum and Dad lived specifically for people at my mum’s age.
Dad would take her to dementia cafes (dementia support groups within the local community for people living with dementia and their carers to attend) and ‘Singing for the Brain’ activities – a registered charity choir run by local support groups – but he would say to me that the groups were always aimed at couples who were much older.
Unfortunately, we were never signposted by those treating Mum to any other services, local support groups, or post-diagnostic services like Dementia Connect.
We would have sought support from the Admiral Nurse service I now work for, but there wasn’t a team in our area.
We also didn’t know that the Dementia UK Admiral Nurse Helpline existed. It is a shame that we didn’t have that support.
Having that knowledge would have helped us to deal with our emotions on the stages of the disease, managing symptoms, and also getting to grips with end of life care.
I spent the last week of Mum’s life by her side. She was made comfortable with the help of a syringe driver to deliver her pain medication. We had support from the St Giles Nurses who assisted with night sits and with ensuring Mum was clean and tidy.
She finally passed away during the night, around 11pm, in my arms – surrounded by all of her family.
Before my mother’s passing, one of my dad’s friends actually said to him ‘thank God for that’ when we told him about her condition. He had been under the impression that you couldn’t die from dementia.
But we know that it’s a leading cause of death in the UK.
I love being an Admiral Nurse because I am so passionate about everything related to dementia. I feel that I can turn our horrible experience into a good one.
For me, it’s so important to encourage good communication between carers and health professionals.
It enhances both the patient and carer experience by ensuring that everyone is as educated as possible, while helping to ease transition into hospital care by liaising with other health providers and ensuring families and patients are kept informed of what that means for them.
As an Admiral Nurse, I encourage all carers to open up to me and I find it helps when you can relate to what they are going through.
You are able to understand the sadness that having someone that you love living with dementia can bring – but, by educating and setting an example to others, you can also promote living well with dementia.
As long as I can, I’ll continue to help people suffering with dementia and their families – after my experience, I know it’s what I have to do.
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