Tuesdays are usually my day for finding something mildly humorous to add here, a joke, a family story or some other anecdote. Today, I wanted to add this wonderful article, in full, as it reminds me so much of the love that has deepened between my husband and I since Mr Dementia moved into our home, and of the gifts and joy it has also allowed us to explore, alongside the sadness and horror of the disease.
People with dementia are raising their voices, all around the world, and refusing to be excluded and ignored any longer, but also embracing their lives and choosing to live well, in spite of a diagnosis of dementia. I have said many times, ‘Yes, dementia is a terminal illness, but why die now?’
A man named Roger was diagnosed with dementia.
That’s the beginning to a story shared by five million Americans, the beginning to a story shared by possibly 15 million Americans by the year 2050, the beginning to a story shared by another person every 68 seconds. And how we tell that story matters, especially for Roger.
So how do we tell this story? And who gets to tell it?
Easy question, right? We know the dementia story. We’ve heard it for decades from the media, from senior service providers, from our own mouths. It’s a story of fear, shame, loss of meaning, loss of identity, and social isolation. According to this story, a person living with dementia loses the ability to connect, communicate, create, contribute or care for themselves, and therefore wastes away to a “death-within-life” existence. This is the old dementia story.
But there’s a new dementia story being told, and it’s being told by people like Roger living with dementia.
The last time I heard those statistics about the increase in Alzheimer’s Disease, I was in a meeting with Roger. He turned to a friend also living with early stage memory loss, raised his hand for a high five, and exclaimed: “Hey, we’re on the rise!”
This spirit of embrace, this spirit of optimism, reflects the new dementia story – a story of hope, joy and meaning. For Roger, the new dementia story is a story of connection, deepening relationships, boldness and creativity.
The new dementia story is a story not of isolation, but of connection. Roger participates in a walking group at Seattle’s Woodland Park Zoo, designed for people living with early stage memory loss. He is a member of the Gathering Place, an enrichment program for people living with early stage memory loss. Roger also attends the newly forming Alzheimer’s Cafes throughout Seattle, a phenomenon popping up in cities nationwide. For Roger, dementia has meant new connections and new forms of communication.
“I enjoy the Alzheimer’s Cafe experience because it’s one place where I can interact with people who are further along in the process,” Roger said. At one Alzheimer’s Cafe, Roger sat next to a man living with more progressed dementia. The man at first scowled at Roger, then stared, and finally reached his finger out toward him. In response, Roger chose to mimic the man’s action, reach out, and touch fingertips. The connection – the silent communication – touched Roger deeply.
“I didn’t question what was going on,” said Roger. “I just followed along. As long as he was willing to interact with me, I was willing to be there. He taught me ‘this is how I would do it – this is how I would communicate.’ He was sincere, and that’s what he had to offer.”
Roger’s story is a story of continued connection, not isolation. “I look for the opportunity to engage,” he said.
The new dementia story is not about losing close relationships, but deepening them. Roger said, “when I was diagnosed, there were a lot of tears for my wife and me, just like for most. As we went on, we got deeper and deeper in love. She has taught me a lot in a very tender way. The more she shares, the more I love her, the more she loves me. The further along we go, the more in love we seem to be. It’s mostly because of an equal exchange. I’ll walk up to her and hug her, she’ll say, ‘I love you too.’ This love seems to be of a higher order. There’s a reciprocation, a capacity to share ourselves. The more we allow ourselves to love and to share, the deeper it gets.”
(This is like reading my own experience with my husband)
The new dementia story is not about shame or fear, but boldness and confidence in identity.
“I look for every opportunity to tell someone that I have Alzheimer’s disease,” Roger said. “I like to say, ‘I’ve got it, I’m not gonna give it to you, now let’s talk about it!’”
Roger works to reduce stigma related to dementia. “The biggest thing that will get us past stigma is chatting and then telling someone, by the way, you’ve just been spending your time with someone with Alzheimer’s Disease!” He continues, “I appreciate when someone gives me the chance to share. Then it spreads – the person I talk to will tell someone else.”
The new dementia story is not about sinking into apathy, but about creativity and problem-solving. Early in his time with the Gathering Place, Roger mentioned his difficulty finding words, and his interest in pursuing improv theater as a possible way to expand his ability to communicate in the moment.
“I’d be out there with my friends, without the word I wanted, and I thought – this has got to change!” Following up on his idea, the Gathering Place connected with Seattle’s Taproot Theatre down the street, and began offering quarterly improv theatre activities which expanded into improv classes especially for people living with early stage memory loss. The classes were a big hit, just as Roger predicted.
“The whole idea of being ‘in the moment’ is a credible way to move forward and to learn,” Roger said.
Desolation? Terrible loss? Futility? These words do not describe Roger’s dementia story.
“I would not choose to go back to where I came from, prior to my condition. I don’t mind that I was given this lot in life. I have no regrets. I don’t have any resistance to what may come in the future. It will be what it will be.”
Well, that’s a great story. Is it too good to be true? Roger concludes, “it’s just one story.” Yes, it’s just one story, one way to tell the story, but it’s a refreshing story, one powerful enough to overcome the old dementia story that has been crushing our communities with fear and shame. The old dementia story, in fact, has worn itself out.
“There are many fears. Over time they fall away. I’m not scared anymore,” Roger said.
The new dementia story is brewing, it is ripening, and it is ready to be heard. If we take the time to listen, we may hear a story overflowing with hope, a story not of decline, but a story in which people living with dementia are “on the rise.” Let’s pay attention.