Conditions: Neurodivergent and Dementia Carer

Wears: Figaro Bracelet (Silver) and Classic Necklace (Stainless Steel)

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Seeing Dementia Differently

“Dementia changed my life at 11, but it also gave me a purpose I didn’t expect.”

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Meet Cici (@seeingdementiadifferently)

My name is Alicia Willoughby but everyone calls me Cici. My Dad was diagnosed with a rare form of young onset dementia called Posterior Cortical Atrophy when he was 54 years old and I was 11.

Growing Up as a Young Carer

By the time I was 18 and going off to university, Dad’s care needs had increased a lot and his diagnosis was having an impact on the whole family. We had all become carers for Dad - a job that was an honour to do, but a very tough one. Being so young, and seeing your parent change because of the dementia is a terribly painful thing.

Caring for was something that progressed gradually. At first it was small things like helping make a cup of tea or putting on his films or shows so he didn’t have to use the TV remote. And then it progressed to needing support with personal care, things like doing laces on shoes or buttons on shirts. I felt so guilty going to university because when I would come home for reading weeks or breaks, I would see how much Dads skills had deteriorated. I felt terrible for having left my Mum and brother to look after Dad. I coped with that guilt through studying and trying to learn as much as I could about PCA dementia and how to support someone with dementia.

When Care Needs Change

Eventually Dad had to move into a care home because we weren’t able to meet his needs anymore. It was a horrible feeling knowing that as hard as we tried, it wasn’t enough to keep him with us. Over time the visits got easier and knowing that Dads basic needs were being met, meant that we could enjoy more quality time with him. We could watch films with him, we would put on music and dance, and sometimes you would see the sparkle back in his eyes. Those were beautiful moments. Moments when he looked like himself again.

The Importance of Safety and Awareness

Before all of this, there was a terrifying occasion that Dad went missing. He had tried to go back to work, not realising he hadn’t worked there in years. We had to report him as missing to the police and we had also had a similar incident with my nan who was living with dementia years earlier. She managed to go missing and actually ended up all the way in Poole in Dorset. We live in South West London!

When someone with dementia goes missing, it is so important that you act quickly. Their safety is paramount and thats actually how I came to learn about MedicAlert. I was researching dementia safety and found the Herbert Protocol. I thought it was a brilliant initiative and knew I needed to promote it so that other families could have more peace of mind.

Finding a New Path

I chose to do as much research as I could on all things dementia and in particular, PCA dementia, the form Dad had. Sadly when Dad passed I needed a break from studying, every person that walked in and had the same diagnosis, reminded me a little of Dad. I retrained and worked on yachts for a number of years and being by the ocean helped me feel so much closer to Dad and a lot calmer.

4 years on, I have decided to return to working in the dementia care field and specifically supporting young dementia carers. I remember how tough it was to find resources and info when I was young and I want to make sure that others don’t have to worry about doing hours of research or not knowing how to be a carer. Thats why I created Seeing Dementia Differently - a community for young dementia carers.

Understanding Myself

I also found out at 28 years old that I myself am neurodivergent which I think explains why I have sometimes thrown myself so deeply into certain areas of research like dementia, and my person favourite interest is sharks! I feel most like I am living life when I get to be myself and be creative. I don’t see it as a label, I see it as a way to understand my behaviour and seek better support and accommodations for my needs. I have actually found it empowering. For years my neurodivergence and the struggles that came with that not being understood was put down to carer stress, depression or anxiety. Life makes a lot more sense now.

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