Beth Jones, 37, from Lancashire, first sensed something was wrong with her mum Gill in 2021, long before memory problems became apparent. The initial changes were subtle: Gill, then 65, became quieter and her personality began to shift.
“She just became a lot quieter, which isn't like my mum. She was total chatterbox. But at the time we were still kind of in the midst of the pandemic and I just put it down to that,” Beth recalled. “As we started to come out of lockdown and life started to return to normal, I thought my mum would return to normal, but she didn’t. Then her personality started to change. She'd always been such a kind, warm lady who wouldn't say boo to a goose, and then she started saying things that could be quite nasty.”
A holiday trip raised concerns
A further red flag emerged in September 2022, when Beth’s parents went on holiday to Cyprus with friends. Two friends with healthcare experience pulled her dad aside to express concerns that Gill may be showing signs of dementia.
Beth had a gut feeling something was not right, but her mum refused to accept there was a problem. After Gill began experiencing memory problems, Beth quietly sought advice from her GP. “I feel awful about it. I still carry guilt about it this day, but I just needed answers,” she said.
The path to diagnosis
The GP invited Gill in for a catch-up about another health problem and offered a blood test. The test revealed low vitamin B12 levels, which can sometimes mimic dementia. Gill was prescribed tablets, but there was no improvement after three months.
Gill visited the GP again, this time with Beth and her dad. She completed memory tests and a clock-drawing exercise, narrowly failing them. She was referred to a memory clinic, but the family received no update for weeks. Beth’s dad eventually discovered that Gill had hidden a letter from the clinic. Gill admitted she was scared—her own mother had lived with dementia before dying aged 65, around the same age Gill was then.
Frontotemporal dementia confirmed
In February 2024, the family attended the memory clinic, where a diagnosis of frontotemporal dementia (FTD) was confirmed. Beth said: “It went completely over Mum's head. She might as well have just been diagnosed with the common cold. She didn't quite grasp the severity of it, I don’t think.”
FTD is a rare form of dementia, affecting around two in every 100 people living with the condition. It is caused by damage to cells in the frontal and temporal lobes of the brain, areas responsible for personality, emotions, behaviour, speech and understanding of words. Some cases can be genetic.
Living with FTD
Gill is now non-verbal with declining mobility, and is cared for by her husband. Beth said the family was offered very little support. “We got the diagnosis, and then we were just kind of shown, literally escorted, to the front of the memory clinic with nothing. We were just then left to come home and just figure it all out ourselves,” she added.
Beth found the experience isolating, particularly as her mum was younger than the typical age many associate with dementia. She found comfort in online communities and started a podcast called ‘FTD Navigating the Cr*p’ to share her mum’s story and raise awareness. “My mum, in my mind, was so incredibly young to have dementia. I felt like nobody else was going through what I was going through. It just felt it was literally one of the loneliest periods of my life. I've got amazing friends and I've got fantastic family, but none of them could really relate to me and what I was going through,” she said.
World FTD Awareness Week runs from September 28 to October 4. By sharing her story, Beth hopes to help more people understand that FTD can affect people of any age. “This isn't a disease reserved for the elderly. I recently interviewed a lady whose son had it. He was 22 years old when he was diagnosed,” she added.
