“…each of us essentially lives inside our minds, gaining access to the outside world only through the lens of our own interpretation.”
J.E. Chamberlain, “Boasting, Toasting, and Truthtelling,” Orality & Literacy: Reflections Across Disciplines
We all create internal stories that help us interpret the world. Those stories become the lens through which we see the outside world. For example, the stories I tell about winter (cold, icy, slushy, unpleasant) become the lens through which I see, think about, and experience winter.
The story of dementia, in large part, is one of loss, shadows, ghosts of former selves, diminishing abilities, and of not being “there,” and of “losing it.” In this story, a person’s worth as a human being is called into question. This story tends to take over — the lens dropping into place between the person with dementia and everyone else — right after diagnosis, as the story we associate with later-stage dementia becomes the only story we tell for all people with dementia, no matter how their own personal journey with dementia unfolds.
The story I tell myself about winter becomes the lens through which I perceive winter, and my perception of winter guides my actions — basically eschewing all but necessary excursions outside and hiding indoors by the fireplace.
Similarly, the lens through which people perceive dementia and those living with dementia, guide their actions — unintentionally disabling people with dementia by taking over activities rather than providing support for discovering their abilities, for example, or not visiting someone with dementia because “it doesn’t matter; he won’t remember.” And individual actions become systemic actions — for example, the gap in support to live with dementia that exists between diagnosis and long-term care (especially for those with younger onset dementia), the lack of affordable respite care, the rampant overuse of antipsychotic drugs in memory care, or the hash that has been made (at least in Ontario) of the transition from home care to long-term care.
Logic would dictate, therefore, that by replacing the old story with a new one, the lens through which we interpret the world will change, thus changing how we perceive people living with dementia and the disease itself, which will in turn change our actions.
How do we replace the story of dementia? We have to tell a new story; we have to change the story. It starts with listening to the stories of people diagnosed with dementia–stories of everyday life of living with dementia, not dying from it. Stories of challenges encountered and challenges overcome. Stories that we can identify with, empathize with. The story of the lived experience of dementia must be shared widely through social media, traditional media, art, performances–anything that will start conversations about dementia–and that’s why I started with the My Dementia Story Facebook page, and that’s why I believe so strongly in the power of To Whom I May Concern to provide a platform for sharing stories of the lived experience of dementia.
The My Dementia Story Facebook page has been live for one month. Thirteen stories from people with dementia have been shared. While to-date 380 people have “liked” the page, the stories have reached an astonishing 27,580 Facebook news feeds, and shared 241 times, with Tammy’s story alone reaching over 7,800 people. What has made me even more convinced of the power of sharing stories are the conversations taking place in the Comments section of the posts: 277+ comments on this page and shared posts thus far. People are talking about how they must share this or that story at work, or how their daughter will share it with her school friend. People with dementia are finding each other and offering support. And most encouraging, the language has shifted from one of loss and fear to words that include “admiration, strength, courage, amazing, brave, positive, inspirational, real, gentle, and kind.”
I thank the advocates with dementia who have bravely shared their stories, and encourage other people with dementia to take a look and be inspired to share their own (learn how to share your story here). I ask that caregivers consider working with their loved ones with dementia to create stories using text, video, audio, photos, artwork–really I’m open to anything that will share the story. Support groups of people with dementia or memory cafes can take sharing stories on as a project: contact me via the Contact page of this website to discuss the possibilities or I welcome your suggestions.
Bottom line: To have a chance to change the story of dementia, we need to hear lots and lots of stories; we need to inundate people with stories, until the story of dementia can no longer be ignored.
By listening to these stories of people with dementia, I think we will see a new story emerge, and when we start to interpret dementia through that new lens, we will hear new conversations take place, along with new behaviours and actions, within families, within communities, and within our countries.