It is scary to have dementia.
It is frightening to live in a world that doesn’t make sense and be surrounded by people you don’t know.
It’s alarming to realize that you no longer are able to read a clock.
It’s terrifying to know you might forget those you love the most.
It’s upsetting to not be able to come up with a common word, like bath or fork.
It’s difficult when people get frustrated with you and you don’t know why.
It’s scary to not remember how to do basic tasks, like putting out the trash or pumping gas.
It’s hard to process why you’re not sad when you should be (like when a loved one dies) and why you’re not happy when you should be (like when you have a new grandbaby).
It’s worrisome when you don’t have the mental energy to watch a TV show or follow a conversation.
It’s challenging when you’re trying and people think you’re not.
But we still say it’s harder on the family. We still say it’s easier to be the person living with dementia than the caregiver.
I don’t know why it’s a contest. There’s no easy role here.
As a professional, I see that there are more resources available for family caregivers than for those living with dementia (and I’m not saying there are adequate resources for family caregivers). Perhaps family caregivers are more likely to be able to express their needs, but those with dementia have needs as well. And, to be honest, some of my friends with dementia are incredible advocates for those living with dementia.
I think empathy changes everything.
When we think about creating more dementia-friendly communities, we must think of ways to increase empathy for those with dementia. We need our families and communities to understand that dementia is more than just old people forgetting stuff.
First, it’s not just old people. And second, it’s not just memory loss.
People with dementia experience the world differently. And the way they experience the world can be intensely scary. When we say they are “giving us a hard time,” they are acting out of fear. Considering their experience of the world, their response is reasonable.
But are their needs that different than the needs of someone who doesn’t have dementia? They need to be listened to, to be cared for, to be understood. They need to laugh and to connect.
And we need to step into their world to make that happen.