'Me and my sister had 50% chance of Alzheimer's'

Luke Glover and his sister had a 50% chance of inheriting the same gene as their father to develop a rare form of Alzheimer's

Eight years ago, Luke Glover took a test to see if he carried the gene which would give him a rare form of dementia which led to the death of his father and his sister living in care.

The 39-year-old from Hull lost his dad from Familial Alzheimer's disease (FAD) when he was a child and knew he had a 50:50 chance of getting it himself. He tested negative, but his teenage sister Lauren had the opposite result.

FAD is caused by a single gene mutation and, according to the Alzheimer's Society, accounts for less than one in every 100 diagnosed cases of the disease.

Mr Glover said: "Lauren always knew she was going to develop it and it's sped up quite quickly over the last year. She's had to go into care and she's 42-years-old.

"The symptoms can be quite severe and are not what you'd normally think of - some people think it's just memory loss, but it's so much more."

Mr Glover said his father was 45-years-old when he died from Familial Alzheimer's disease

Unlike more common forms of Alzheimer's, FAD symptoms can begin before the age of 65 and does not skip generations.

Mr Glover underwent specialist genetic counselling before he was tested for the disease in 2017.

"You go through sessions just to make sure you're able to deal with the news if you do have it," he said.

"I took a test 8 years ago to see if I had it and fortunately I didn't so it can't be passed on to any of my children."

"Obviously the relief when we found out the result was huge. We're thankful every day that she [our daughter] is here and she's safe."

Despite his relief, Mr Glover said it had been a very different journey for his sister who had found it "tough" to access relevant care.

He said: "Because the disease is so rare, there are actually guidelines where they won't take anyone under the age of 65.

"It's like, what we supposed to do? Luckily we've found a home where they're very supportive and they fully understand."

Lauren, 42, now lives at the Beechwood Care Centre in Bridlington and receives around the clock care.

Mr Glover ran the 2025 Yorkshire Marathon to raise money for Alzheimer's Research UK

Mr Glover said he hoped developments in medical science would eventually help to find a cure for FAD.

"This is a faulty gene which they can detect from the genetic test. There's got to be some way of destroying it with the science we have," he said.

"I'm not a doctor and I know FAD is a minority compared to other forms of Alzheimer's but I would like to see more research into it."

The 39-year-old recently ran the Yorkshire Marathon in York in aid of Alzheimer's Research UK.

"There's just not enough awareness that someone at my sister's age can get this disease and it be as severe as it is," said Mr Glover.

Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here.

If you are affected by any of the issues raised in this story, support and advice is available via the BBC Action Line