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I’m a dementia daughter. My mother was diagnosed with Posterior Cortical Atrophy (PCA) in 2013, aged 63. It’s an unusual form of dementia, often described as a ‘visual variant’ of Alzheimer’s disease because it affects the visual and spatial skills sooner than the memory.

Mum’s diagnosis has changed our family profoundly. Our centre of gravity has shifted. Dementia is the subtext for everything we do: daily outings, holiday plans, work routines, living arrangements, trips to the supermarket. Almost every conversation with my father and siblings includes an update on how Mum has been today, her latest symptoms or the next step in managing her care. It has both strained and strengthened our relationships.

We stumbled around for the first year or more. Mum’s doctors had given her symptoms a label but hadn’t provided any other information or service referrals. I spent whole days Googling the words that her neurologist had written on a Post-It note. Gradually, we formed a picture of what to expect and found some services available in western NSW.

Mum has handled her diagnosis magnificently and we’re lucky that, three years later, her personality and memory are still largely intact. Equally, life in a small town goes a long way to helping Mum maintain some independence. Someone will always help her cross the road or find the right change in her wallet.

I miss lots of things that Mum and I always did together – embroidery, gardening, furniture restoration, shopping trips. We still share our reading via audiobooks, she still gives me great advice and we laugh a lot. I’m grateful that I live close by, can give practical help and that we spend lots of time together. I live in fear of the day she doesn’t know who I am.

Until I became part of a family impacted by dementia, I had no idea how little I knew about this collection of diseases. Like most people, I thought (only vaguely) in terms of Alzheimer’s disease and memory loss. I hadn’t thought of it as a terminal disease, didn’t realise how many people I knew had been touched by it, and didn’t know it was the second leading cause of death in Australia.

I remain baffled by people’s failure to speak out about this disease. Those living with dementia should shout to be heard for as long as they can. Families and carers should answer honestly when asked how they or their loved one are faring. Friends should feel able to ask – frankly but politely – and then listen to the answer. We can’t kill the monster under the bed if we won’t admit it’s there.