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My heart-breaking battle with parents' dementia

Shaheen Larrieux gave up a career as a chemical engineer to help care for her mother and father who both have dementia.

Shaheen with her mother
Image: Shaheen with her mother Hosna
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Many people would struggle with the idea of one parent being diagnosed with dementia, let alone two.

But both Shaheen Larrieux's mother and father, Hosna and Mohammed, have battled different variants of the condition, and she gave up her career in chemical engineering to help with their care.

Her mother Shaheen is now 72 and living with dementia. Her father died when he was 78, in May 2017.

Here, on World Alzheimer's Day, she tells Sky News how her parents' devastating diagnoses have affected her.

I am a former chemical engineer and management consultant. I studied at the MIT Sloan School of Management and have lived and worked internationally.

During a period in between jobs I was working at my dad's accountancy practice and I found myself getting more and more involved in my mum's day-to-day tasks. Although my mother had always worked with numbers, she would ask me the same questions over and over again about invoices - things that should have been simple to her, she now struggled with.

I wondered why mum was struggling, and thought "I have my own career to worry about". But she was forgetting clients' names, getting fines for paying bills late, and we would have misunderstandings.

I felt depressed. I think it affects others before there is a proper diagnosis. We had been to the GP but because she passed the memory test, she wasn't diagnosed with dementia.

Over time her personality changed and I couldn't do anything right in her eyes, which led to our relationship deteriorating.

I started to do my own research and I came across the Rare Dementia Support Group. I called the helpline and explained my situation. I was given advice to ask for a referral to a neurologist who specialised in frontotemporal dementia FTD.

From that moment my life changed. Mum was given an accurate diagnosis and I finally knew what was wrong. I started to do everything I could to help her.

Shaheen gave up a career in engineering to care for her mother
Image: Shaheen gave up a career in engineering to care for her mother

FTD is a rare form of dementia, with only 5% of dementia patients being diagnosed with this type, but it affects people between the ages of 40 and 64 and concerns more personality and behaviour changes than memory loss.

There wasn't any one moment when I realised I would have to give up my career, I just gradually had to spend more time to help my mum.

It was challenging, particularly trying to stop her going out, because she loved to and she always wanted to go to work with my father. She was a fully functioning adult and now I had to stop her day-to-day life.

Mum became obsessed with small children, pulling their hair or pinching their cheeks, and some parents were nervous or angry.

She now has care every day but that was a hard fight and I had to get my MP involved in order to secure it. But she has declined, and now can't speak and is losing mobility.

After my mother, my dad was diagnosed with vascular dementia, which is very different. In his case, it affected short-term memory. He would forget to eat or forget he had put some toast on.

Without support for people like me, or treatments or therapies, other families will have to watch this happen to their loved ones.

It is heart-wrenching to watch your mum slip away day by day and go into this abyss, with no hope and no treatment. Every day I see a little bit more disappear and I long for her to still be able to say my name.

We need a society call to action, not just from charities but from the government and the public.

It is too late for my mum but I am passionate about raising awareness of dementia and I truly believe that through the power of research we will develop treatments in my lifetime and that my work with will stop more people having to go through this heartbreaking experience and not have to give up their careers, hopes and aspirations to care for a loved one.