Alzheimer’s for the artist, the researcher, and the designer

Here’s my call to you.

“I’m still here!”

That was the cry from the actress that played an aging mother struggling with Alzheimer’s.

The 40-minute drama presentation, also aptly titled with those exact words, walked through the real thoughts and feelings around Alzheimer’s and dementia. Different scenes were acted out then frozen to give time for the actor to explain how he or she felt about what had happened.

“I’m not dumb! I had worked hard to have a great career and I managed a big family. Don’t underestimate me like that!” said the woman with dementia undergoing a progress test, “I’m not a baby!”

“I don’t know how to talk with her when I run into her. I’m afraid of saying something offensive, so I’ve stopped reaching out to her,” says a friend, who chose not to pick up the phone.

“Why does mom have this disease? It’s making her unhappy and it makes me unhappy — it’s just not fair!” a daughter cried when she finally sent her mom to a nursing home.

By the end of the presentation, everyone in the audience had wet eyes and wet cheeks. I was fighting back the tears myself.

The communicators

The six actors had turned a research paper into art. You could feel their passion in the performance as they fully embodied the role of the caretaker or friend or mother with Alzheimer’s. It was revealed later that this heart and soul was driven by each actor’s personal experience with dementia.

I can imagine that the process of characterizing themselves or their family members must have been hard and emotional. They may have had to release feelings that had been internally submerged. They may have had to challenge their assumptions about others. They may have been forced to remember the things they didn’t want to remember. But, I have no doubt that it was a powerful way to reflect on their experiences.

The stakeholders

As for the audience, many were healthcare workers, spouses, or children of people with dementia, and each little skit was “just like the way dad used to act when he lost his keys” or “finally a representative of what I’m feeling inside when she yells at me for something I didn’t do.”

My friend and her aunt (they were the ones who invited me there) were also bonding over the familiarity of the scenes presented — “You’ve seen grandpa do that, right?” “Yeah, that’s exactly what I was thinking!” “They had it so right!”

It was as if their silent voices, struggles, frustrations, and doubts, suppressed by the never-ending fight, had been aired like wet clothes wrung and hung dry. The emotions released by the audience was heavy in the room, but that because the weight had finally been lifted off their shoulders.

The public

I had never experienced dementia- never seen it, learned of it, or thought of it. Thus, watching the performance revealed to me:

  1. How unaware I was of dementia and the impact it had on people’s lives,
  2. How unprepared I was if it came into my life unexpectedly (and it’s always unexpected), and
  3. If I did encounter it, how easily I could fall into the trap of self-pity if I never tried to understand the perspectives of the person with dementia, their friends, caretakers, children, or spouses.

Lastly, I discovered that I knew a lot about poverty in young, developing countries, but nothing about healthcare in aging countries. Breaking my bubble of interest and expertise opened my eyes up to a plethora of problems that existed in my own community that I couldn’t simply ignore.

The lesson

The emotions I felt from the communicators, the stakeholders, and the public made me stop and think about my role in design thinking.

A big part of the job is to find insights — deep, intuitive understanding behind people’s thoughts, words, and actions. The insights then become the foundation on which we build solutions for the end user.

That’s all fine and dandy, but what if, in our process, we could also do something good for the non-users? After all, they have needs too.

Unfortunately, human behaviour insights have too often been confined in design firms or research firms, or left to long, wordy research papers that never see the light of day.

Are we underestimating them? Have we limited them? As I’ve learned from this Alzheimer’s production, insights have proven to be powerful little nuggets that could really make a difference if we took the time to share them.

The call

So here’s my call to you, because insights take too much work to uncover only to be discarded or underutilized.

To artists out there:

Use your gift to amplify important insights discovered by researchers that are equally important to you. There’s power in your art to change yourself and to change others.

And to researchers out there:

Go and collaborate with artists.

Finally, to designers and design thinkers out there:

Take a pause in your design process and share the insights in a thoughtful, meaningful way. You’re a researcher and artist too.

Then, learn about problems outside your own expertise.

Your solution might get stronger and your heart might grow bigger.

Hey! If you’re into design thinking, keep reading!