Dementia: It's not just forgetting

Today, I sat in class and watched a girl not much older than me speak about her father. She wasn't sitting next to me and I wasn't eavesdropping on someone else's conversation. This girl stood in at the lectern and made it through three-quarters of her speech in a calm and composed manner. She spoke with wide gesticulations and perfect inflections for humour, sadness and wit. And then she disintegrated into tears. Tears that ran down her face and into her voice as she told us about the changes she had seen in her father over seven years of frontotemporal dementia. The shell she now has that looks like her father but is nothing like the man who encouraged her to read, developed in her a passion for science and made her the great person that she is today. A man she grieves for every day, despite going home to share his care amongst her sisters and mother.

My grandmother lived in an aged-care facility for ten years. I distinctly remember the day she moved in, flown from a far away city to be closer to my mother. I had pre-empted her arrival and made sure I wore my best school uniform. Blue tunic with our red school shirt on underneath. I think I even managed to wear proper shoes instead of sneakers. So much effort for a seven-year old! I had to look nice to welcome Grandma. Mum picked me up after school and we went straight to the facility to help settle in.

I remember walking down those winding, dark, musty corridors. The walls changing from one era of construction to another. Paint that seemed not to have changed since the 70s. The rooms were airless. I felt like I was walking into a place where people came to die. I may have even slipped my hand into Mum's out of fear. And this was one of the better aged-care facilities that Mum could find.

I remember arriving, finally, at the corridor that was to be my grandmother's. Seeing the communal bathrooms and an elderly person hobbling towards them. Seeing my grandmother waiting patiently, anxiously, outside her room for us to return. And I didn't recognise her. I looked at Mum, "is that skinny lady Grandma?" I asked. A nod responded. My over-sized, cake-baking, food-loving Grandma who once gave my brother ice-cream and cake for breakfast looked so tiny in this big, scary place. And in the ten years she lived there, I never saw her get much bigger.

Sometimes, while going to visit Grandma, we would get lost in the corridors. Once, we ended up at a glass door, suspicious in this place where we could otherwise wander freely. I asked Dad why we'd come across a door, seeing people with blank faces wandering around in their nighties on the other side. "That's the dementia ward," responded Mum, walking beside us. I didn't really know what dementia was at the time but it sounded scary. There were people locked into their home because otherwise they would get lost. They would wander outside and not know how to get back.

In class today, one man presented his story as a carer for his wife, who was diagnosed with dementia at 59. She has only recently begun wandering off and he knows that in-facility care will soon be required. Just as the young girl knew for her father.

Dementia isn't just forgetting. It's losing inhibition, a change in ability to communicate, a loss of who you are. We saw a girl who had lost her high-flying, business-dealing, intellectual father to the condition when he in his early fifties. When she was only eighteen and would have loved for her father to see her HSC successes and everything to follow. We heard from a a man who's wife had been a competent radiologist, wonderful mother and social butterfly who now speaks only single words. While the people with dementia of various types lose themselves to the condition, it is their families who struggle the most to integrate these changes into their lives. To cope with the increased responsibility and the fading of a personality they knew so well.

All too often, we forget about aged-care in health. We forget about those who have 'old-age conditions' at much younger ages. And, as a profession, sometimes we're not the most sensitive to the families. Sometimes, there isn't a cure. But there are ways to slow the progression and ways to alleviate symptoms. There are ways to make the transition easier and to make sure the carers also receive care.

Aged-care facilities shouldn't feel like somewhere people go to die. They should feel like a place where the elderly can share their life stories with those of us who can learn from their wisdom. They should feel warm and welcoming, smell like something other than mass-produced meals and not-quite-cleaned-up accidents. And that's not just for the visitors. That's for the many people who find their homes in these corridors. For the younger people who end up in aged-care facilities because we don't have in-facility care for younger people who require it. We need aged-care to be better because, even if you lose the ability to form long-term memories or to communicate or to be as mobile as you used to be, you still deserve to live each second with a smile on your face.

Caring for people with dementia is more than treating the change in neurological function. It is about taking care of a fellow human. It is about recognising the needs of their carers.


Daniel said…
Great post. It's a sad time of life, but I'm sure that's compounded by the terrible environment we leave people in.

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