Daughter raises £15k for charity after dad’s dementia, diagnosed at 58, robbed him of his speech and left him bedbound

A woman whose father’s dementia, diagnosed in his 50s, caused him to become non-verbal and bedbound before his death has raised more than £15,000 for charity after setting up a business selling products to raise the profile of the condition.

Lizzie Perry, a senior sustainability manager at Burberry who lives in Market Harborough, Leicestershire, was 24 years old when her father Rob was diagnosed with frontotemporal dementia (FTD) in March 2018, aged 58.

Lizzie, now 31, said Rob deteriorated rapidly after his diagnosis, leading him to become non-verbal and later bedbound, with carers visiting the family home three times a day to feed, dress, and wash 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.

After being admitted to hospital due to an infection earlier this year and losing the ability to swallow, doctors told the family, “There’s nothing more we can do”, and they therefore decided to move Rob back home.

Rob then died peacefully days later on May 4 2024, aged 64, surrounded by his family – and they will be hosting a “celebration of life” on June 12, for which Lizzie has created a 10-hour playlist with his favourite songs.

Lizzie described her father’s dementia diagnosis as a “prolonged grieving process” but said she has experienced substantial personal growth and wants to help others by continuing the work from her business, This is Dementia, which she launched in 2020.

Speaking about the “journey” she has had with Rob’s dementia, 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.”

Lizzie’s father Rob, who she described as gentle, kind, loyal and “sporty”, was born and raised in Birmingham.

He met his 63-year-old wife Barbara in sixth form at school and, after getting married in their early 20s, the pair moved to Shropshire and had two children – John, 32, and Lizzie, 31.

Lizzie said Rob was a “huge family man” and he loved sports and music, while she described her relationship with him as “a very blessed and incredible one”.

When Rob reached his mid-50s, however, Lizzie said she and her family started to notice changes in his behaviours – his ability to plan and problem-solve deteriorated and he struggled to use technology and drive.

“It was the connection of actions and planning, and he had an instant change in language,” she said.

“For example, you’d ask a question where the answer was ‘yes’ and he’d say ‘no’ – he was mixing them up.”

Up until this point, Rob had been very independent, and he put these changes down to “stress”, but Lizzie and her family knew “something was not right”.

They urged him to visit the doctor, but it was not until an incident at the gym led to a brain scan at hospital – and one year later, he was diagnosed with FTD in March 2018, aged 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’.”

According to specialist dementia nurse charity Dementia UK, an estimated 70,800 people are living with young onset dementia, where symptoms occur under the age of 65, but many families are not getting the care and support they need.

Being a young working professional, Lizzie said processing her father’s diagnosis at 24 was incredibly “tough” and she did not know how to react, but she found being an “open book” and talking about her feelings helped enormously.

She and her family were also determined not to let Rob’s diagnosis stop him from doing the activities he enjoyed, such as taking their dog Nova out for a walk.

But this proved challenging at times as Rob’s condition caused him to stare at people, leading to “aggressive” reactions from members of the public, particularly men.

“You’ve got this 6ft-something man stopping in his tracks and staring at you, so I can see why you might be a little spooked, but his reaction was to giggle because he couldn’t say anything,” Lizzie explained.

Lizzie therefore decided to order a custom T-shirt online for her father which said, “Sorry for staring, it’s just my dementia” – and when he wore the top, it made a huge difference in how people treated him.

This inspired Lizzie to set up This is Dementia in May 2020, an online business selling sustainable and repurposed clothing and accessories to raise awareness of the condition, with proceeds going towards Dementia UK.

With other slogans such as “The Sun Still Shines in Muddled Minds”, Lizzie wanted to break the stigma around dementia and create a community where people could come together and offer advice and support.

Since launching, Lizzie has raised more than £15,000 for Dementia UK – and while she will no longer be selling T-shirts or accessories, she wants to continue using the platform to help others and provide a useful resource.

“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.

While Rob’s personality did not change significantly with his FTD, Lizzie said he became non-verbal and he was bedbound for the last two years of his life, requiring care 24/7.

Since he was not able to speak, Lizzie said she and her family learned to understand what different facial expressions and gestures meant, but this proved challenging, particularly when it came to him receiving the correct medical care.

Lizzie said being a close-knit family and having support from Dementia UK has helped her cope with the grief of her father’s diagnosis and, following his death, she has found “great peace” being in nature.

Along with the “celebration of life” for her father on June 12, Lizzie said she is looking forward to her wedding next year, and she hopes she can help others find “joy and positivity” in dark times and help raise more awareness of FTD.

Speaking about 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.”

If you need advice or support on living with dementia, contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.

To find out more about This is Dementia, search @thisisdementiauk on Instagram.