This is a statement included in a Facebook Post. It is plaintive and sincere. As a carer, I can identify with its sentiments.

WHAT IS KNOWN BUT ONLY TALKED ABOUT IN QUIET, ALMOST UNDERCURRENT TERMS, IS THAT DEMENTIA IN THE NUMBER ONE PEOPLE KILLER IN AUSTRALIA. IT PROGRESSIVELY GNAWS AWAY AT SUFFERERS, REDUCING THEM IN HUMAN STATUS TERMS TO SHADOWS OF THE PEOPLE THEY USED TO BE.

Nobody ever asks the carers what we think. We’re the ones in the homes, the hospitals, the waiting rooms, the hospice meetings. We’re the ones watching the decline in real time, not on a chart or in a report. And yet, somehow, we’re the quietest people in the whole dementia conversation. We don’t want sympathy or likes or empty words we want things to change. We want things to be spoken about properly. We want the truth that happens behind closed doors to be acknowledged instead of brushed off like it’s just “old age.”

We want someone somewhere to take dementia seriously, the same way they take other diseases seriously. We want research
We want medicine. We want options. We want answers. We want hope. We’re tired of being told “there’s nothing we can do.” That line breaks a family in half. Carers hear it and feel a part of their heart fall to the floor every single time. Because what do you mean there’s nothing? What do you mean just “manage it”? Why aren’t we fighting for treatments? Why aren’t we talking about prevention? Why aren’t we pushing for better care and more support for the ones who carry this alone?

People act like dementia is just something that “happens when you get old.” No. Dementia is a disease that tears families apart. It steals parents from their children, partners from each other, grandparents from grandkids who will never know who they used to be It destroys independence, personality, dignity It takes everything except the body that’s left behind. And carers are expected to watch that happen quietly to get on with it to not complain, to not break down

But we’re done being quiet.

We want dementia spoken about openly, loudly, honestly. We want carers represented in conversations and decisions. We want funding for research, not just leaflets about “memory loss.” We want medication that slows it down, stops it, helps with the fear, the confusion, the aggression, the shutdown, the decline. We want science to care about this like it cares about everything else we want governments to see the carers who have given up their jobs their sleep their mental health their freedom to keep their loved ones safe

And until that happens, we will keep talking. We will keep telling the truth. We will keep posting, sharing, writing, and shouting because dementia is not rare it’s everywhere behind millions of front doors chewing through families in silence.

Carers are tired not just physically tired emotionally tired, world-tired, tired of waiting for someone to care enough to make a difference. We don’t want to just “manage dementia,” we want to understand it, treat it, slow it down, prevent it, and one day stop it completely.

our loved ones deserve more than just “comfort,” they deserve a future and we as carers deserve to see that future too💜💜