Alzheimer’s Research UK Champion, Shaheen Larrieux, felt like she was ‘walking through darkness’ for years before her mother, Hosna, 70, was diagnosed with behavioural variant Frontotemporal Dementia (bvFTD) in 2013. The symptoms – including aggression and inappropriate behaviour in public – started a decade ago but she could not understand what was causing her mum to act so differently. Shaheen, who shared her story at the BIA Gala Dinner, talks about the devastating effect dementia has had on her family and the sacrifices she has made to give her mum the best possible care.
Around 10 years ago my life changed completely. I used to have a high flying career as a Chemical Engineer and Management Consultant, which enabled me to travel the world, but this was all put on hold when my mum started experiencing signs of dementia.
I first realised something wasn’t right when I had to do more of her daily tasks, such as paying bills or making decisions for the family business. But it wasn’t only me who noticed a difference, she had become aggressive and my family would tell me to take her to see a doctor.
Mum was initially misdiagnosed with Alzheimer’s in 2011, but we were offered little support and her behaviour continued to get worse, particularly in public. She would turn up at the doctor’s surgery and interrupt other appointments. She also became obsessed with young children, often walking up to them in the street to pinch their cheeks. Our relationship suffered too. I would spend hours crying because I could not understand why she was being so horrible to me.
It wasn’t until 2013 that we finally got an accurate diagnosis. Mum had bvFTD, which affects the frontal and temporal lobes of the brain regulating personality, emotions and language use. This did make things easier because I could properly understand what was going on and was able to empathise with her, but we still had a battle on our hands to get her the care she needed.
Despite dementia being so prominent in today’s society, I continue to be shocked by how little understanding there is – in Bangladeshi culture we do not even have a word for it. As my mum’s behaviour got worse, our family life became more difficult. The social isolation became acute because of changes in her behaviour.
I did not realise I had become her carer, so my whole life was put on hold, which left me feeling very depressed and socially isolated at times. I’ve always been fiercely ambitious and was looking forward to taking the next step in my career, but those plans had to change. My mum’s condition is getting worse, her mobility is limited and she can barely speak, which is incredibly hard for my dad because it is like he has lost his wife.
This is why it is so important to fund research into dementia and the diseases that cause it, because of the devastating impact it has not only on the person with dementia, but everyone else around them.
Thanks to Alzheimer’s Research UK, I have been given my life back and I feel valued in society once again. Through the charity, I’ve been given so many fantastic opportunities to really make a difference, such as sitting on the panel to help select the director of the UK Dementia Research Institute and campaigning at the House of Lords.
I embrace every chance I get to raise awareness of dementia and the work of Alzheimer’s Research UK, which is why I was honoured to be asked to speak at the BIA Gala Dinner, and I’m delighted that the UK BIA has chosen to support this fantastic charity. I’m hopeful for a future free from dementia, but in the meantime, I will do everything I can to change public perception of this condition so no one is left feeling alone.