Hope keeps driving marathon dementia brothers on

"The responsibility I felt fell at kind of my feet to care for my mum and make sure that she was safe in her own home."

Jordan Adams was 15, when his mum Geraldine was diagnosed with frontotemporal dementia (FTD) aged 47.

She died aged 52 and Jordan and brother Cian risk developing dementia in their 40s. Both have a gene that can lead to FTD.

Now, after raising hundreds of thousands of pounds, the brothers are to do 32 marathons in 32 days across Ireland's 32 counties, after doing the London Marathon on Sunday - when Jordan will run with a fridge.

He recalled: "My mum went from being a really outgoing, vivacious [person], kind of the beating heart and soul of our family and a real life and soul character to being kind of more socially withdrawn."

Following two "missed" diagnoses, described as depression and a silent stroke, his dad was persistent, Jordan added, and the family discovered in 2010 she had familial FTD.

"Sadly we've actually lost 12 relatives in total to this same form of dementia.

"From the period between 2010 to 2016 we as a family cared for mum in the family home [with] my dad largely taking on that responsibility."

When she was diagnosed, Cian was nine and older sister Kennedy 17.

"[It was] an incredibly difficult period," Jordan said, adding when his dad was out, "having to kind of keep a roof over our heads", the older son felt the responsibility over his mum fell at his own feet.

The brothers had genetic testing and following their mum's death in 2016, they later discovered, both aged 23, that they were "carriers of the MAPT mutation, which means that we have a 99.9% chance of getting this familial FTD".

"As things stand, there's no cure and we're on a mission to hopefully change that. If the cure doesn't come, then at least leave the world in a better place for people living with dementia."

The pair, nicknamed the FTD Brothers, have appeared on BBC programme Extraordinary Portraits when artist Unza Saleem "was tasked with putting together art for us".

They stressed they wanted to show "it was hopeful" and "something for our family to hold onto, when maybe dementia does strip us of the people that we are, and that definitely came across".

With people supporting him for a long time, Jordan wanted to do "something different" in London and "get other people who don't know about our story asking questions".

"So what better way to do that [than] sticking a 25kg household appliance on your back."

So far, more than £50,000 towards an initial £100,000 target for the Ireland challenge has been raised.

"Referencing my mum and the relatives that I've lost, sadly those are all Irish relatives.

"We always felt kind of that one day we wanted to go to Ireland and dedicate a challenge and some fundraising towards those relatives."

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