My mum was diagnosed with frontotemporal dementia at 62: 'There's a 50/50 chance I have it too'

In February 2019, Jess Crawford’s mum, Janice, was diagnosed with frontotemporal dementia (FTD) and now at the age of 28, Ms Crawford has been told she has a 50/50 chance of being diagnosed with this condition too.

In the short space of eighteen months, the progress of the disease has been rapid as her mum is already non-verbal, incontinent and has problems recognising her daughter.

Whilst there are over 800,000 people in the UK with dementia, FTD is a specific form of dementia which is uncommon. Ms Crawford struggled to find online support and understand why her mum had different symptoms to other people with dementia.

It was after Ms Crawford watched an interview on ITV's This Morning, her life 'became a lot clearer'.

The TV show featured 35-year-old Hannah Mackay, who had seen her grandfather and father succumb to this disease, so she took a test and was told she will have dementia by the age of 50.

’It’s a scary time, if I do carry the gene, I will definitely get FTD in the future’

Ms Crawford told homecare.co.uk: “I was in shock. Somebody in the UK was going through something similar to me. I found her on Facebook and messaged her. To my surprise, she replied and put me in touch with a consultant. It was then I learnt so much and everything became a lot clearer.

“They have identified my mum has a mutation in the C9ORF72 gene which is hereditary so there’s a 50/50 chance I have it too.

“I saw my GP who sent a referral to the genetics department in Leeds and I have my first video conference booked with them to discuss my own testing.

“It’s a scary time, if I do carry the gene, I will definitely get FTD in the future. No ifs, buts or maybes, it’s just a matter of when.”

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.

Ms Crawford’s mum Janice was diagnosed aged 62 but says her mum first started showing signs of FTD at the age of 58.

“It started off with small things like she didn’t know how to use a phone properly, or I would be explaining something to her, she would understand and then she would forget what I had just explained.

“One family member mistook it for depression and said you need to take her to the doctors.

“Getting her to the doctors was an absolute nightmare. Her dad died of dementia, so even if I mentioned the word dementia, she would always say to me: 'If I have dementia, I would rather not know'.

With her mum’s constant refusal to go to the doctors, Ms Crawford carried out her own research about the symptoms of FTD online.

“When I did get her to the doctors, I was so relieved I could get some answers, but I didn’t think about how my mum would have felt.

“He started asking her questions and [my mum] would make something up. I would correct her and say, ‘no you didn’t have that last night’, or ‘no you haven’t, mum.’ I could see her physically getting upset because I was correcting her.

“I felt a bit selfish taking her to the doctor's for me to get the answers knowing full well my mum didn’t want to know she had dementia. When I got out of that appointment, I just cried my eyes out.”

’ I couldn’t stop crying and found myself at the offices of the Alzheimer’s Society’

Ms Crawford’s mum was booked in for an MRI scan but by the time the appointment came, her symptoms had progressed further.

“She was suffering from apathy. She couldn’t empathise or sympathise with anyone and when she spoke, she came across as a nasty woman. She was always cool and calm about things, but she would just turn around and say horrible things about anybody.

“My mum would calmly take me aside and say I really dislike your friends, or I don’t like how she looks, or I don’t like how she laughs, it was just mean. I took it with a pinch of salt and warned people in advance.”

Ms Crawford found great help from the Alzheimer’s Society when she couldn’t give her mum the support she needed.

“I tried hard to give her a good quality of life like taking her to the cinema, but it always ended up being a disaster. I couldn’t stop crying and found myself at the offices of the Alzheimer’s Society and pressed the doorbell.

“They gave me a cup of tea and support. They told me about the activity groups they have, the memory cafes and days out that I could take her to.

“I wanted to take her somewhere where she wouldn’t be judged. I took her to a memory café but she said, I don’t want to be here, they are all old. I was trying to enthuse her a little bit trying to do something that she enjoyed doing.”

’You are not alone, you need to reach out’

Ms Crawford finds getting her mum out is difficult because she is totally incontinent and becomes anxious.

“If she saw a cat, dog, bird or insect, they would scare her, so she is just comfortable inside watching the TV. It got to the point where if her anxiety became too much, she would just start screaming and I didn’t know what to do."

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

“My blog has been the best support ever. I feel thankful and feel fulfilled that I am talking to different people. It’s getting better, she says.

“FTD can be so overwhelming, it can make you feel totally incompetent. It can make you feel totally out of your depth and you don’t know what you are doing.

"Mum is really advanced now and the journey my family has been on so far hasn't been easy. I'm in a situation currently where I am grieving my mum, even though she's still alive. She doesn't speak anymore and I'm not convinced she even knows who I am.

"Her progression has been incredibly quick and things change each day. Her level of care required now is huge but despite all of this, I do still manage to enjoy my time with her and find small victories."

To find out more information regarding frontotemporal dementia (FTD) click here

To read Ms Crawford’s blog called FTD & Me click here

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