What do you know about dementia?

Fortunately, we live in a time where information on just about anything is readily available. Books, research, websites and videos created by those who have a formal education are abundant. Courses are available at many Alzheimer Society chapters, and we can all become a Dementia Friend. With a little work, it’s relatively easy to get to a level where one can have an educated conversation about dementia, make some informed opinions, and know where to go for help when needed.

Even so, most of us miss out on the most crucial dementia education of all: having a conversation with a person with the lived experience of dementia.

Professionals working directly with people with dementia might think, “Oh, I do that all the time.”

But do you? Do you ever stop to ask, “What’s it like to be you?”

Having a conversation with a person with dementia — and listening, really listening — is key to understanding not only what it’s like, but why you should care. We dish out services (or we think we do). We step in to help, we give diagnoses, we care, we direct, we transport, etc., etc. Have you ever heard from the recipient of those services, what it’s like to be on the other end?

Generally speaking, we hate talking to the end users.

I was a management consultant in the 80s, working with corporations on purchasing and implementing large computer software systems. In my projects, we always started with a team that included the technology people AND the end users — the people who were using the current software and either loved it or hated it, and who would be subjected to the new system. We hashed out all the requirements together, coming to a consensus about the system design before ever issuing an RFP. And the end users were an integral part of the system vendor interview process and the final selection. It only made sense that if we were going to spend hundreds of thousands of dollars — not to mention thousands of hours — on new software, the people who would be using it ought to have a big say in what they were getting.

This sort of user input was against the grain in the 80s, when only the IT guys and girls were supposed to know what was going on and the end users got what they got and didn’t get upset. Ha! Fast forward 35 years and not much has changed. End users tend to be sidelined while the techies inflict new systems, except the price tag has now reached millions if not billions of dollars.

practice session 2People with dementia are the end users of the products and services we develop, of the dementia friendly communities that we create, of the care we give. The first step in developing these services, products, and communities must be a conversation with the end user. People with dementia must become an integral part of your team. You need to listen.

How do you improve dementia care without talking to the people who receive the care and have some awesome ideas on how it could be better?

How do you change the medical diagnostic and care process unless you understand what it’s like to be on the receiving end from someone who has been there?

How do you develop services for people with dementia without talking to someone about what services they need and their challenges in accessing them?

And families? Your loved one is the end user of your care. How should you act? What should you do? How can you do your best by your loved one? Listen to them, and have a conversation. Talk to other people with the lived experience as well.

So where do you start? Start with To Whom I May Concern®.

Full disclosure: I’ve worked with the founder of To Whom I May Concern, Maureen Matthews, PhD, for several years now on her projects and facilitator training, so pardon me for tooting our own horn. But get past that and realize I’m tooting the horn of the many people with dementia who have contributed to To Whom I May Concern productions over the years.

To Whom I May Concern (TWIMC) is a performance-based platform for people with dementia to tell their stories of what it’s like to live with dementia, and for the general public to hear these stories and start a conversation.

A TWIMC facilitator works with a “sharing group” of people with dementia who come together specifically to share their stories of their lived experience. For approximately six weeks, the sharing group meets weekly to talk, just talk, answering the question, “What’s it like to live with dementia?” The facilitator may ask some targeted questions designed to move the conversation along, but his or her main job is to listen. Assisted by a “scribe,” the facilitator records the stories told by the group. Stories include trips to the doctor, receiving the diagnosis, losing independence, adapting, how others react, how others are adapting, and plans for the future, all told with a good dose of laughter sometimes mixed with tears.

The facilitator and scribe then work to fit the stories into letters addressed “To Whom I May Concern,” the idea being that after diagnosis, the person with dementia becomes an “IT” to be cared for and managed. Through TWIMC, the focus is placed back on the human in the experience, the “I”.

The letters are then assembled into a script, which the sharing group reads through, revises, and then approves before moving forward. Consensus is reached.

Here’s the best part, at least I think, and what makes TWIMC really special: Members of the sharing group read the script before a live audience. Not actors. The performers are people with dementia.

A connection is made. The audience sees real tears, hears real laughter. The “performers” are in fact humans living their experience.

After the performance, the audience is invited to participate in a “Talk Back” session with the entire sharing group. The audience has spent 30 minutes listening to people with dementia tell their stories, and now is their opportunity to dialogue with the group and learn more.

Your best chance to experience a TWIMC performance in the very near future is at the Dementia Action Alliance conference, coming up in Atlanta, GA on June 25-27, 2017. A sharing group has been working for a few months on a special script, “I AM MORE THAN MY DIAGNOSIS: FROM ISOLATION TO INCLUSION,” which will premiere at the conference. They will also do a workshop after the Talk Back where participants will develop actionable ideas they can take home with them.

Indeed, the DAA conference itself presents an unparalleled opportunity to meet many people with dementia, who are presenting, taking part in panel discussions, or are participating in the creativity, technology and author showcases, or just attending the conference as a registrant.

Visit the TWIMC website to learn more and for events in the Connecticut and Toronto areas, and for facilitator training that will be starting in the fall of 2017.

If you are living with someone who is living with dementia, or you are a professional working with people with dementia, I encourage you to download and watch This Is My Voice, a TWIMC documentary with a sharing group of people in the early stages of dementia that met and shared online. From this video you will gain knowledge that, I’m sure, will enable you to start a conversation of your own.

I know that if TWIMC were available while my mother was alive, it would have prompted a conversation with her, with questions I never bothered to ask. And now, while I will never know what it was like to be HER living with dementia, I thank the many people with dementia who have shared through TWIMC and who have helped me better understand her experience.