Podcast: 'I'm 29 but I know which care home I'm going in'

After seeing her mum diagnosed with a rare form of dementia, Jess Crawford, 29, decided to take a genetic test to find out if she had inherited the same gene which causes frontotemporal dementia (FTD).

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 in Beverley near Hull, is now coming to terms with knowing she will at some point display symptoms of FTD just like her mum.

On 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."

Once Jess had time to process her results, she 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."

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.”

To receive these results, Jess had to spend 16 months being tested and received 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.”

Frontotemporal dementia (FTD) is a less common type of dementia which is most often diagnosed between the ages of 45 and 65. However, it can also affect people younger or older than this. When the frontal and/or temporal lobes are damaged in this way, this causes the symptoms of FTD. These include changes in personality and behaviour and difficulties with language.

There is no timeline when Jess’ symptoms will become prominent. “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.”

'I’ve forgotten her voice. I’ve forgotten what she sounds like'

On the podcast, Jess describes how she has watched her mum go from “being the life and soul of the party” to being unable to communicate. In February 2019, Mrs Crawford’s mum, was diagnosed with FTD and in the short space of two years, the progress of FTD has been rapid as her mum is already non-verbal, incontinent and has problems recognising her daughter.

“It’s just so sad. As time is going on I’ve forgotten her voice. I’ve forgotten what she sounds like. Even though she’s alive, she’s here, she can touch me and hold my hand, [but] I don’t know what she sounds like.”

Jess' mum now lives in a care home in Hull, where she receives care. “It wasn’t an easy decision to come to but in February we decided to have a two-week respite and that two weeks respite has turned into permanent residency.

“For me, I’m relieved. I think it’s a good thing. I’m comfortable with where she is, I’m happy with where she is. All I need to do is spend time with her as a daughter.”

With Covid-19 and restrictions with visits to care homes, Jess said: “It’s been difficult for me looking at her through a window. We have not been able to have that physical contact.”

'I’ve been on enough journeys...and I’m not ready to make a decision yet'

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.”

One of the options is 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.”

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

'I’m putting myself forward to be a guinea pig'

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.”

Last year, Jess decided to help other people in her situation and share her experiences by writing a blog called ‘FTD & Me’.

She says blogging is “genuinely the best thing I have ever done.” Her blogs have introduced her to a “community” who read her work and shares stories of living with FTD.

Recently Jess has been invited to speak at a virtual conference in America. “I wouldn’t have had that opportunity if it wasn’t for the people I have met on this journey.”

Although there is no known cure, Jess is taking part in clinical trials FTD studies at UCL London and has her first clinical research meeting in June.

“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.”

To listen to the full podcast click here

To read Jess' blog, go to https://www.ftdandme.co.uk/