This week is Dementia Action Week. Some of its purposes are to raise awareness, reduce stigma and build understanding. We don’t talk about dementia because it scares us. A dear friend who has decided to care for her mother to ensure she has the best possible older life with dementia told me of her sadness that her mum’s friends no longer made contact. These were women that her mum had known for most of her adult life. They saw each other regularly and holidayed together at least once a year. Once the dementia diagnosis turned up they disappeared. No phone calls for her birthday. No drop-ins. Nothing. This isn’t uncommon. Lots of people caring for a loved one with dementia talk of the ‘drop off’. The friends who just disappear. Why do we do this? Why does dementia make us so uncomfortable? It’s not contagious. It’s perfectly safe to continue a relationship with a person with dementia. Of course the relationship will change over time. But all relationships change over time.
Your overall lifetime chance of developing dementia after 55 is roughly 42 per cent. They’re pretty strong odds. And of course none of us want dementia. It scares us. Losing our memory and our sense of orientation in our lives is terrifying. We’ve seen it happen to people we love. I’ve seen it happen to people I love. It’s cruel to watch someone lose their connection to their lives, their friends, their families, and themselves. It’s isolating and lonely. It’s known, yet it’s unknown.
Every dementia, while similar is entirely different. When I started working with people with dementia, years ago, I asked my husband, John, who is an academic and has dedicated over a decade to research about this. In simple terms he said, ‘the brain is like a blanket that a moth has gotten into. The pattern of what the moth has destroyed is different on every blanket.’ But what is the same, is that there’s a moth locked in with the blanket. That helped me understand both the commonality, and the uniqueness.
My husband has a friend who developed dementia some years ago. The man was his mentor, and someone who shaped his world view. That man lives in Sydney and is in a secure unit. My husband speaks to him several times a day, most days. He visits when he is in Sydney. The man doesn’t know he’s in a secure unit. He thinks he is at a conference. It’s heartbreaking. But John’s small ongoing contribution of friendship is his connection to the world his degenerating brain has configured.
There is so much stigma around dementia. Last week I hosted the annual symposium for Dementia Inclusive Ballina Alliance – a day that raises awareness and educates those caring for people with dementia, clinicians, support services and all those with an interest to learn more. Every time I told someone I was hosting this event, every second person would make a joke about me forgetting to attend and how no one would mind. Not once, about four different people made the same joke. It wasn’t funny. It was revealing. It told me that people don’t feel comfortable. That ‘othering’ people with dementia was their way of signalling that this isn’t a group they belong to.
I have been a comedian for over 40 years. I don’t make jokes about dementia. I was fortunate to work with people with dementia over five years to develop a comedy program. I made jokes with people with dementia. That’s different. That’s inclusion. I probably worked with over 300 different people with dementia. I got to see how different presentations were. I witnessed days of lucidity, days of loss and confusion. Most importantly I witnessed the powerful personhood of people with dementia, and saw firsthand how our fear of dementia, and not having a dementia-friendly world, erodes that.
We need a dementia-friendly future. Because that person with dementia will probably be your mother or your father. But it will also quite possibly be you, or your kids.
And your chance to do something is now.
Mandy Nolan’s column has appeared in The Echo for almost 25 years. She is a writer, comedian and artist, is the preselected Greens candidate for Ballina and was the Greens candidate at the past two federal elections.
For four decades The Echo has printed the stories some people loved, some people hated, and some pretended not to read. If you want us to keep telling the truth, the real truth, not the sugar-coated version. We’ll need your support to keep the presses rolling. 
