Dementia is an adventure, not a disease

I came across this post on the Changing Aging blog (a good read, by the way). I think it also expresses my thoughts that Alzheimer’s and other dementias are certainly an adventure. You don’t know what is around the next corner, you don’t know where it is going or what will happen along the way, in a very real way, the loved ones and caregivers are along for the ride.

But I don’t think it needs to be all sad and loss-related. There are some wonderful experiences interacting with someone with dementia. One of my favorite endearing qualities of people with dementia, is that they lose their ability to lie – so when they ask you who you are, they are genuinely interested in you in that moment, if they are excited about their favorite food, they will do a little ice cream dance. And these glimpses of genuine self-expression are the little golden nuggets that make me smile at the end of the day. I have a hard time expressing to people why I enjoy working with people with dementia so much (it was even harder when I was in my 20s), but if they haven’t done it, they can’t understand how rewarding it is to learn to see someone’s personality through all the dementia noise.

Many people think it is depressing to work with dementia, and I am hoping to challenge that stigma through my work and let people know that living with dementia, like anything in life, is a journey – an adventure. No, it will not always be pleasant, but it will not always be unpleasant, either. And much like other things in life, the adventure is richer when we share it with others!

In Seattle, community members living with memory loss are rising up as the true spokespeople, and the true experts, on what it means to live with dementia!

Last fall, a group of participants in a local early stage memory loss program decided they had had enough of being overlooked, misunderstood, and considered “less-than” by wider society. Embarking on a bold mission to transform the public perception of dementia, they chose to do so in a personal and courageous way – sharing their own stories. Participants crafted statements communicating what they’d like the world to know about living with memory loss: “I’m still here. I’m still able. I have a lot to give.” Perhaps most radical: “Having Alzheimer’s is an adventure, not a disease.”

Pairing these statements with their own photos, they designed a flyer called “Faces of Memory Loss” and began distributing it throughout the community, and presenting it in venues such as Alzheimer’s Cafe events. Recently, their courageous and provocative message caught the attention of the local NPR station: (Listen Here).

At a recent gathering, the group performed a little rap to sum up their purpose.

There’s a new dementia story taking hold
It’s not that old story of shame and fear
It’s people with dementia shouting: “I’m still here!”

That last line got cheers and applause.

What began as a small project with grand hopes, has become a powerful story spreading throughout Seattle and beyond. This is the new dementia story, a story which can transform our communities into places of inclusion, understanding and connection, a story told most authentically by people living with dementia. This is momentia.

Greenwood Senior Center