Dad told he had 'no cure' illness at 58 that left him 'staring in street'

A Birmingham dad who was robbed of his speech after a dementia diagnosis at just 58 is the inspiration for a £15,000 fundraising drive. Lizzie Perry, 31, set up a business selling products to raise awareness of the condition when her dad Rob was left non-verbal and bedbound before his death.

She was just 24 when he was diagnosed with frontotemporal dementia in March 2018. Now 31, she said Rob's health declined rapidly and carers visited their home three times-a-day to feed, dress, and bathe him. "I can't remember the last time I heard him speaking, it's sad to see someone you love so much deteriorate to that stage," Lizzie told PA Real Life.

He was admitted to hospital earlier this year with an infection and, after losing the ability to swallow, he was allowed home when medics said there was nothing more they could do. Rob died peacefully on May 4, aged 64, surrounded by his loved ones.

READ MORE: Man 'executed' with Skorpion machine gun in case featured on Crimewatch - Trial

His family was planning a "celebration of life", to be held today, Wednesday, June 12, for which Lizzie curated a ten-hour playlist featuring his favourite tunes. Lizzie, who lives in Market Harborough in Leicestershire, described his dementia diagnosis as a "prolonged grieving process" which triggered her desire to support others through her business, This is Dementia, which she formed in 2020.

She said: "It has been full of heartbreak, stress and anger, but it has also brought many moments of joy and connection and has shown me an inner strength I didn't know I had. My journey with my dad's dementia has taught me to cherish small joys, find strength in vulnerability, and the importance of spreading positivity amidst challenges."

She described her dad as gentle, kind, loyal and sporty and said he was born and bred in Birmingham. He met his wife Barbara, now 63, in sixth form at school and, after marrying in their early 20s, the couple moved to Shropshire and had Lizzie and her brother John, 32.

Lizzie described Rob as a "huge family man" who had a passion for sport and music and said their bond was "blessed and incredible". His family were alerted to his health issues when he was in his mid-50s, with his ability to plan and problem-solve declining, and he found it difficult to use technology and drive.

"It was the connection of actions and planning, and he had an instant change in language," Lizzie said. "For example, you'd ask a question where the answer was 'yes' and he'd say 'no' he was mixing them up."

Rob had always been fiercely independent, putting the changes down to stress but Lizzie and her family felt something was not right. Despite their pleas for him to see a doctor, it wasn't until an incident at the gym led to a brain scan at hospital.

A year later, in March 2018, Rob was diagnosed with dementia at the age of 58. "When you get that diagnosis, the worst thing is the, 'OK, off you go', because there's no cure, there are no actions, there's nothing you can do.

"You've just been given that full stop diagnosis," Lizzie said. "It was really challenging to comprehend and I'd say the two years that followed the diagnosis were probably the worst ones for coping with it because it was as if he'd died that day.

"I would often be in floods of tears, and I had anger and I thought, 'Why is this our situation? I don't understand'." Dementia UK, a charity specialising in dementia nursing, said around 70,800 people were living with early onset dementia, where symptoms appear under the age of 65.

But it said many families were not receiving the necessary care and support. Lizzie admitted that processing her father's diagnosis at 24 was incredibly tough.

She said she didn't know how to react, but found being an "open book" and discussing her feelings was helpful. The family made an effort to keep Rob engaged in activities he loved, like walking the family dog, Nova.

But as his condition worsened, his tendency to stare at people often led to "aggressive" reactions from the public, especially men. Lizzie said: "You've got this 6ft-something man stopping in his tracks and staring at you, so I can understand why one might be a little spooked, but his reaction was to giggle because he couldn't say anything."

In a bid to help, she ordered a T-shirt online for her dad with the message, "Sorry for staring, it's just my dementia". Lizzie said the difference in how people related to him afterwards was striking.

In May 2020, Lizzie founded This is Dementia, an online company selling sustainable, repurposed clothes and accessories aimed at raising awareness of dementia, with all profits dedicated to Dementia UK. She said she aimed to debunk stigma by creating a supportive community platform with catchphrases such as "The Sun Still Shines in Muddled Minds".

Since its launch, she has raised more than £15,000 for Dementia UK and plans to maintain the platform as a space where people can find resources and support. "Giving back and having purpose and having community and building relationships, that's something I really cherish. I find strength and support in helping others," she said.

Lizzie said her dad's personality remained largely unchanged despite his dementia but was non-verbal and bedbound for the last two years of his life, requiring round-the-clock care. As he lost his ability to speak, Lizzie and her family had to learn to interpret his facial expressions and gestures, a task that proved difficult, especially when it came to ensuring he received the right medical attention.

Lizzie said being part of a close-knit family and receiving support from Dementia UK was crucial in dealing with the grief of her father's diagnosis. Following his death, she said she found "great peace" in spending time outdoors.

She is also looking forward to her wedding next year and hopes to inspire others to find "joy and positivity" during challenging times and raise further awareness about FTD. Sharing her advice to others, she said: "Find that strong connection with a community or people that you can talk to, but don't lose focus on other things that might be happening as well that are positive and joyful.

"There are so many moments I cherish with my dad and I think it's about adapting to the diagnosis rather than fighting it because you can't change it."

For advice or support on living with dementia, contact Dementia UK's Admiral Nurse Dementia Helpline on 0800 888 6678 or send an email to helpline@dementiauk.org. To learn more about This is Dementia, look for @thisisdementiauk on Instagram.