Memory problems are often the main symptoms people associate with dementia, but the first changes Beth Jones noticed in her mum Gill, 68, were more subtle. Beth, 37, first felt that something was not quite right in 2021. She recalled: “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.
“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 further red flag appeared when Beth’s parents went on holiday to Cyprus with friends in September 2022. Two friends who had experience of working in healthcare pulled her dad aside to raise concerns that Gill, 65, may be showing signs of dementia.
Beth, of Lancashire, had a gut feeling that 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. She said: “I feel awful about it. I still carry guilt about it this day, but I just needed answers.”
The GP invited Gill in for a catch-up about another health problem and offered her a blood test. The test revealed Gill had low vitamin B12 levels, the effects of which can sometimes mimic dementia. She was prescribed tablets but there was no improvement after three months.
Gill visited the GP again, this time with Beth and her dad. She was asked to complete some memory tests and a clock-drawing exercise, and narrowly failed them. Gill was referred to a memory clinic but after a few weeks, the family seemed to have received no update about an appointment.
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 she died aged 65 — around the same age Gill was then.
When the family attended the memory clinic, a diagnosis of frontotemporal dementia (FTD) was confirmed in February 2024. 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.”
For every 100 people living with dementia, around two will have FTD. It is a rare form caused by damage to cells in areas of the brain called the frontal and temporal lobes. These areas of the brain are responsible for personality, emotions, behaviour, speech and understanding of words. Some cases can be genetic.
Gill is now non-verbal with declining mobility, and is cared for by her husband. Beth said the family was offered very little support. She added: “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.”
Beth found the experience isolating and lonely, particularly as her mum was younger than the typical age many people associate with dementia.
She eventually found comfort in online communities and started a podcast called ‘FTD Navigating the Cr*p’ to share her mum’s story and raise awareness of the condition. Beth said: “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.”
World FTD Awareness Week is taking place 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.
She added: “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.”
You can support Alzheimer’s Research UK’s call for the Government to ensure the NHS is prepared to roll out new dementia treatments here.