Storytelling is the social and cultural activity of sharing stories, often with improvisation, theatrics, or embellishment. Stories or narratives have been shared in every culture as a means of entertainment, education, cultural preservation and instilling moral values. — Wikipedia

Storytelling is very much the “thing” these days. When I see big-name corporations asking customers to share their stories, it might even be time to look for new terminology to replace “story” lest the concept become somewhat clichéd.

But even with the popularity of sharing our stories, there are few stories of people with dementia being shared.

I’ve fallen down on sharing stories myself in the past six months, despite the best efforts of Janet Ford to help out by contacting people who have obligingly sent in a few stories. Unless someone hits me over the head with a story, complete with photo and consent form, I’m very slow to post on the My Dementia Story Facebook page. And yes, if someone would like to volunteer to administer the page, I’m open to offers! Yet, even with little attention paid to it, people are visiting the page, reading and sharing the stories, and commenting. What if we were to post a couple of stories per week? There is definitely an audience for it.

Yes, the stories must be shared.

Why?

Basically there are two audiences with whom to share stories of the lived experience of dementia. (Thank you to Maureen Matthews for her stroke of genius last week.) Each audience benefits in different ways. Each has their own “why.”

Stories shared with other people with dementia provide practical tips and strategies for coping with the symptoms of dementia. Moreover, stories provide inspiration and motivation, the idea that if someone else can move beyond just getting out of bed in the morning then perhaps I can too.

Stories provide validation. Sometimes when no one else can empathize with what you’re going through, or you get the feeling no one even believes what you are going through, it’s validating to hear your experience mirrored in the stories of others.

Any time you hear a story and you say to yourself, “I see myself in that story,” or “That story really resonates with me,” or “I think I can take away some ideas from that story,” well, that’s what people with dementia get out of stories as well.

So, individuals with dementia need opportunities to meet more often, by themselves in peer support groups or with a trained facilitator, without care partners in attendance. There are many times we want to open up to our peers about things that are going on in our lives, and those things might include issues with spouses. When that happens, would you want your spouse in the room with you? And yet we seem to think that’s OK for people with dementia.

True storytelling can only take place in an environment where the storyteller feels safe.

The second audience with whom people with dementia can share stories is “everyone else.”

Stories effect change.

Stories of the lived experience of dementia can effect change in families, our healthcare system, the wider community, and beyond. Stories change our perception. Stories eliminate stigma.

Stories about struggles with doctors can inspire transformation in practice. A follow-up question to a story about an experience in a doctor’s office can create practical suggestions for easy to implement solutions.

Ditto for the community, business, workplaces, and families.

Hearing the story of how others deal with their diagnosis of dementia can make a care partner wonder, “Does my partner with dementia feel the same way? Perhaps I should ask.”

The stories can make a friend wonder, “Is my friend who has dementia as lonely as that person is? Maybe I should just get over myself and visit him.”

Stories can make a business owner vow to be more patient and helpful.

And so it goes.

Stories can change lives.

So why don’t we hear many stories from those with dementia?

I think three things are needed to facilitate the stories:

  1. The provision of forums for storytelling
  2. The belief that people with dementia are willing and able to share their stories.
  3. Acknowledgement of the potential the stories of the lived experience with dementia can have to spark change.

We need the media to make a point of seeking out people with dementia to share their stories, and not rely on care partners. We need more people with dementia to raise their hands and commit to sharing their stories, to put aside thoughts of embarrassment and stigma and be willing to tell it like it is. We need people to join groups like the Ontario Dementia Advisory Group or to reach out to their local Alzheimer Societies and Associations and volunteer to be speakers and media contacts.

And we need more support for programs such as To Whom I May Concern®, which is a program that provides a safe environment with a trained facilitator for storytelling both between people with dementia and with the outside community. (Full disclosure: I work with Maureen Matthews of TWIMC, and I do so because I believe she has created the best platform for the first-person sharing of the lived experience of dementia that exists today.)

I’m sorry to say that the more often we have others speak on behalf of those living with dementia, the harder it will be to bring about #2, the belief that people with dementia are willing and able to share their stories. Actors, care partners, well-meaning spokespeople…all unfortunately feed into the perception that people with dementia are unable to speak for themselves. Which again is why I love TWIMC; it’s the people with dementia that read the script to which they contributed their stories, not actors, and often attending a performance is the first time some people hear an individual with dementia speak.

Finally, number 3, recognizing the potential stories can have to effect change. Often we walk through life assuming that we know everything there is to know about topic xyz, until we hear something that challenges our preconceived notions and makes us act differently in the future. Stories are the spark of change. They aren’t the complete change, but it’s the match that lights the fire.

More stories, more belief, more sparks. More change.

That’s the power of storytelling.

Your best opportunity to experience a To Whom I May Concern performance this year is at the Dementia Action Alliance conference, June 25-27, 2017 in Atlanta, GA. A group of individuals with dementia–all of them advocates–met with Maureen Matthews and myself in January and February to tell the stories that will become the script for a workshop at the DAA conference. The workshop topic is “I Am More than My Diagnosis: Moving from Isolation to Inclusion.” The reading of the script by these advocates with dementia will kick off a 3-hour workshop, where we will get inside the lived experience of dementia and work with the advocates to create ideas and solutions that we can take back with us to our communities after the conference. Click here to learn more and register for the conference. Early bird registration ends April 1!