Mum who thought she had post natal depression diagnosed with rare form of dementia

Thirty-four-year-old Holly Braithwaite first started showing symptoms of Frontotemporal Dementia (FTD) in 2019 after giving birth to her daughter Alba, but it was initially thought to be post-natal depression or linked to a thyroid problem.

However, after several different tests and scans, it was confirmed to Ms Braithwaite that she has FTD and her condition is “progressing faster” than any of her family and friends “anticipated”.

Ms Braithwaite is now considered the youngest person in the country to be diagnosed with the condition.

Around 40,000 people in the UK are currently living with a rare form of dementia. FTD can affect behaviour, personality, and language, with relatively few memory problems in the early stages. It can affect people in their 30s, 40s and 50s. People affected often have no insight that their behaviour is not normal.

Ms Braithwaite’s friend Sophie Poulton, 33, who supports the family said: “It took a while for Holly to get a proper diagnosis. After several different tests and scans, it was confirmed it was Frontotemporal Dementia. We were so shocked when were heard it was a form of dementia. Holly’s so sharp, even now, she will know dates, birthdays, what we did on nights out when we were younger.

'We are doing all we can to support her'

“That’s the surprising thing about FTD and some of these rarer forms of dementia. It’s not about memory loss and it can happen to younger people.

“Holly’s condition is progressing faster than any of us anticipated. As family and friends, we are doing all we can to support her and create a safe, loving and caring environment for her during this scary, confusing time.

“We are devastated and broken hearted to see what is happening to our beloved friend. We know there is no cure, and we just want to be there for her and do whatever we can for her, Alex, Alba, Chris and all the family.”

’The Rare Dementia Support team have been a godsend to those caring for Holly’

Based at the Dementia Research Centre (DRC) in London, charity Rare Dementia Support provides specialist advice as well as the opportunity to meet other people experiencing similar problems and inform people living with a rare dementia diagnosis and those who care for them. The National Brain Appeal, which funds it, is aiming to raise £7 million to create the world’s first Rare Dementia Support Centre, where it will provide guidance and education both in person and through their virtual centre as well as being a space for research, artistic and cultural activities.

The service has become a lifeline for Ms Braithwaite’s family, husband Alex and her mum Chris in particular so Ms Poulton and Kayleigh Spooner,34, who met at school organised an eight mile walk for Rare Dementia Support and raised over £7,000.

“The Rare Dementia Support team have been a godsend to those caring for Holly, offering their expertise and support to the family and so we knew we wanted to give something back,” says Ms Poulton. “When Kayleigh and I went to Alex with our idea of a fundraising walk, he suggested we do this for The National Brain Appeal who funds the service.”

'We sang, we danced, we laughed, and we cried'

The walk from Glaisdale to Goatland took place on Saturday 28 May and was a huge success with lots of people joining the two schoolfriends for the day.

Ms Poulton said: “The day was full of fun and laughter! We sang, we danced, we laughed, and we cried! We spoke about Holly and all the great times we’ve had together.

"We couldn’t be any happier with how well the day went. We are still waiting for a final total of money raised on the day as local schools etc are still wanting to donate, however, the just giving page is now over £7000 including Gift Aid, so that is amazing!

“We have contacted lots of people who know and love Holly to join us to celebrate her and to help to raise money for the charity.

"We’ve also had support from people who don’t know Holly but just want to show they care. We really wanted to just make the day a good one, one that is full of fun and laughter, just the way Holly would like it!”

To donate, go to: justgiving.com/fundraising/sophie-al For more information about Rare Dementia Support go to: raredementiasupport.org