Former nurse Ellen Turner shares experience with young-onset dementia

One day, around 2021, I was in Tesco shopping for groceries.  

When I finished, I walked out. I noticed when I was on my way home that I had forgotten to pay.   

The same thing happened when I went for a coffee a few weeks later.   

Again, I walked out without paying. 

One day, around 2021, I was in Tesco shopping for groceries.  

When I finished, I walked out. I noticed when I was on my way home that I had forgotten to pay.   

The same thing happened when I went for a coffee a few weeks later.   

Again, I walked out without paying. 

I was mortified on both occasions and immediately turned back to rectify my mistake – but I had noticed over the last several months that I was becoming increasingly forgetful. 

Frightened by this prospect, I took myself to the doctor, who ran some tests and told me I had a folic acid deficiency before sending me away with some supplements. I took them for six months, but they didn’t provide any relief from my forgetfulness.   

I soon found I was struggling to find the right words when I spoke. My speech would often become slurred, and my husband would sometimes finish the sentence for me as he saw me having difficulty. It felt very frustrating.

These symptoms made me very worried – and familiar alarm bells started ringing.   

At the age of 76, my mum was told by her doctor that she had the brain of a 95-year-old. She had been living with frontotemporal dementia (FTD) for several years. FTD is a group of dementias that mainly affect the frontal and temporal lobes of the brain.  

Ellen's mother suffered from frontotemporal dementia (FTD). (Image: Ellen Turner)

She became a shell of herself virtually overnight.  She wasn’t the mum we knew. She understood who we were, but she was in her own world.  

She developed a lot of challenging behaviours, like standing in front of strangers , dancing and pulling faces – so much so that people would make fun of us when we were out together. I found it humiliating – part of me wished I wore a T-shirt that read: ‘My mum has dementia’. 

She also struggled with hallucinations, which often made her frightened. It was so upsetting to watch her fade away without the dignity she deserved.   

Mum sadly passed away in 2005 aged 80 after suffering a stroke, and our family was completely heartbroken.   

So when I started to struggle with words, I went back to the GP who reluctantly agreed to send me for further tests.   

I was referred to the memory clinic where I underwent over three hours of cognitive tests – I was completely exhausted at the end of it and had the headache from hell.   

I anxiously waited for my results, but heard nothing for several weeks. 

I eventually became so frustrated that I called my GP and asked them to give me the results over the phone. The GP confirmed that I had vascular dementia. I was just 64 years old at the time.     

At that moment, everything stopped.   

I was on my own at home, and despite suspecting deep down that I had dementia, I still felt utterly shell-shocked.   

Ellen used her creativity to help share her emotions surrounding the diagnosis. (Image: Ellen Turner)

I had to wait several hours for my husband to come home, which felt like eternity. When he eventually walked through the door, I sat him down and told him. He just couldn’t believe it.  

Telling my children was tough; they had seen my mum go through it and really didn’t want to believe that I would follow the same path. They told me that it would be OK, but we all knew that it would be hard. 

As a former nurse, I was no stranger to dementia. I cared for many people living with the condition over the course of my professional life.   

I adored my job – it was my life, but sadly it all came to an end when I was 58. I had severe, ongoing back problems, which left me with no option but to retire – my consultant said I’d end up in a wheelchair if I didn’t.   

It was completely devastating, but I said to myself: at least it’s not dementia. I hoped that if I kept myself mentally busy, I’d avoid what I’d seen happen to the people I cared for – and my mum.   

Watching Mum struggle really impacted me. Having now been diagnosed with dementia myself, one of my biggest fears is being a burden to my husband and kids. I don’t want them to experience the same pain that I did as Mum’s carer, when I was exhausted and drained all the time.  

And on several occasions, I witnessed friends and strangers being dismissive of my mum and sometimes even horrified with her behaviour. They didn’t understand that she couldn’t help it.   

The shame and embarrassment means I’ve been more selective about the people I share my diagnosis with. It makes me feel sad that I have to hide part of myself because of the fear of the stigma.  

I’ve already lost my driving licence, which was such a huge part of my independence  – it’s a hard pill to swallow, and I miss the days where I could take myself out to meet a group of friends or go shopping alone.   

Yet I’ve tried to be proactive, and I’ve done everything I can to try to make it easier for my family. My husband and I have renovated our house to make it more dementia-friendly, including installing a new bathtub and levelling out the patio. I’ve also organised my advanced care plans and have let my family know my wishes for the future.    

Unfortunately, awareness of young onset dementia – where symptoms occur before the age of 65 – is low among healthcare professionals, and this leaves people like me in the dark without suitable support.   

While still reeling from my diagnosis, I at least expected to receive guidance from the doctor. All I was offered was annual blood tests. I was given no information on what to do next, or where to go for support. 

I felt like washing that had been hung out to dry. It was frustrating.  

It was only when I visited the local memory cafe, where I met other people living with dementia, that I was able to learn more about my diagnosis and the support networks available.  

We meet once a week and chat about our lives and it’s become such a place of peace for me. Although there is only one other person my age, I’ve really connected with the people in the group – we’ve become like one big family!   

Being creative has also been such a huge blessing. I’ve been able to channel my creative energy into fundraising for Dementia UK, the specialist dementia nursing charity, by knitting and selling baby booties and even dog bandannas!   

And being the creative lady that I am, I decided to explore my experiences further by channelling my feelings on a scrabble board.

I noted down some of the words I associated with my diagnosis, such as: ‘Panic’, ‘stigma’ and ‘discrimination’. Looking at the board helps me to stay focussed and enables me to feel more in control of what lies ahead, including the judgement of others.   

I don’t know how quickly my dementia is going to progress, but in the meantime, I cherish every single moment I get with my family and put on a brave face, because I don’t know what tomorrow will bring.   

The Memory Cafe Taunton is a group for people with dementia, their carers, family and friends – offering a chance to meet new people and share experiences. It is hosted at St James Church Hall on St James Street in Taunton fortnightly on Tuesday, 10am to 12pm.

More information on Young-onset Dementia can be found at alzheimers.org.uk/about-dementia/types-dementia/young-onset-dementia.