Frontotemporal dementia | ‘I inherited the gene for FTD’

Mum Janice Pick and daughter Jess Crawford. Credit: Jess Crawford

Frontotemporal dementia (FTD) is a rare type of dementia, most often diagnosed between the ages of 45 and 65 and is the most common form of dementia for people under the age of 60.

It is caused by degeneration of the frontal and temporal lobes of the brain.

The symptoms of FTD can include personality, behaviour changes, language problems and problems with mental abilities as well as memory problems and there is no timeline when the symptoms will become prominent.

Originally called Pick’s disease, FTD is also genetic. In some families, there is a single faulty gene that causes FTD and when it is passed down from a parent to a child it is known as ‘familial FTD’.

Any child born of a person with familial frontotemporal dementia has a one in two chance of getting the same gene. 

After seeing her mum diagnosed with a rare form of dementia, Jess Crawford who is in her early 30s decided to take a genetic test to find out if she had inherited the same gene which causes frontotemporal dementia (FTD).

She will display symptoms of frontotemporal dementia

Despite watching her mum Janice Pick deteriorate, Jess chose to find out if she had the same C9ORF72 gene and after a long 16-month journey, the test result came back positive. 

Jess, who lives near Hull, is now coming to terms with knowing she will at some point display symptoms of frontotemporal dementia.

She says: “The problem with FTD is there is no real age you can get it; however, it is likely it will follow a hereditary pattern. It will probably be around the same time my mum showed symptoms; that will be mid-50s.” 

In Episode 19 of the Let’s Talk About Care podcast, Jess reveals how she felt receiving the news. “I got my results in February and unfortunately, I tested positive. I cried because it was the end of the journey, and I was relieved it was all over.”

After she had time to process her results, Jess ended up on a “bit of a high. I wanted to go for a drive and see my family and friends. I was in a good mood. But the next day, I crashed and burned, I was incredibly emotional.”

Jess had to undergo counselling before receiving the results

To receive these life-changing results, Jess had to spend 16 months being tested as well as receiving four counselling sessions to ensure she was prepared for the news. 

“I had to have therapy. With FTD, there’s no cure, there’s no treatment. Essentially, they are giving me this diagnosis and it doesn’t mean your chances are increased, it means you will be getting FTD.”

On the podcast, Jess describes how she watched her mum go from “being the life and soul of the party” to being unable to communicate. 

In February 2019, Jess’s mum was diagnosed with FTD and in the short space of two years, the progress of frontotemporal dementia was rapid as her mum became non-verbal, incontinent and had problems recognising her daughter.

For Jess, the results are “another kick, another blow but I’m really positive about it, I’m being resilient and I’m not going to let it ruin my life.”

50/50 chance their child could inherit the gene 

Jess and her husband Gregg’s future plans to have children have to be thought out carefully, as there is a 50/50 chance their child could inherit the gene. 

Jess has researched four options to consider when they are both ready to go on this journey. “At first I thought my options were very limited but it’s just not the case.”

Pre-implantation genetics diagnosis (PGD). 

PGD involves using eggs and sperm to create embryos in a lab, then performing the genetic test on the embryos, and putting only the negative embryos back into the womb. PGD is done as part of IVF treatment.

“There are complications with that. Say they take eight of my eggs, all eight might be positive. It can take 18 months to prepare for IVF but if it tests negative and I deliver the baby naturally, it means it will be dodgy-gene free which I think is an incredible way of doing it.

“I have time. I’ve been on enough journeys in my life and I’m not ready to make a decision yet.”

‘I’ve already picked out the care home I would like to be in’

Jess and Gregg are planning a care package in preparation for the future. “Although it could be when I’m in my fifties, it could be before, it could be tomorrow.

“I don’t want [Gregg] to be a carer. I’ve already picked out the care home I would like to be in. We’ve looked at long-term care plans and what my wish is. We have a good plan going forward.”

Although there is no known cure, Jess is taking part in clinical trials FTD studies at UCL London.

“I’m putting myself forward to be a guinea pig. You just feel hopeless when you find out there is no cure and no treatment, so I am totally on the fight against this now.

“If it means testing on me could eventually find treatment, slow things down or stop it, I will absolutely put myself forward for that.”

When Jess was diagnosed, she decided to share her experiences by writing a blog called ‘FTD & Me’.