I CAN! I WILL! is a unique information resource about dementia and the people who live with it, a place where people with dementia and others can benefit from the collective life experiences of kindred spirits living around our world.
By Laura Bramly
Over coffee and pastries, they listened to Richard Taylor, a man with early onset dementia (probably of the Alzheimer’s type) talk about his vision for a website where people with dementia and others whose lives have been touched by the disease, could post their ideas for raising awareness and reducing the stigma of dementia.
Richard envisioned a global interactive tool, where someone living in one country—with the same symptoms and issues, and dealing with the same stigma—would read the thoughts of someone in another country, take their words to heart and incorporate them into their own lives. Richard had code named the project Stand Up, Speak Out.
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Many ideas were bandied about the conference room table. ADI offered to host the website, and at the time we thought it would be part of a larger discussion forum. I offered to help initially by taking notes at the meeting, but volunteered to assist Richard to get the site implemented and to edit the hundreds of ideas we hoped would be posted on the site.
Six months later, after many e-mails and conference calls, Stand Up, Speak Out is a reality. Having escaped its fate as a discussion forum, it’s now a full website. The name of the project has morphed into I CAN! I WILL! Stand Up and Speak Out about Dementia, the idea being that the first step to taking on anything new in one’s life is to think “I can do this,” but the real sign of commitment to change is the loud and clear cry, “I WILL!”
ADI is hosting the site, and has supported its development both organizationally and financially. I don’t think we would be where we are now without their assistance.
And where exactly are we?
Up until now we have had people with Alzheimer’s and other forms of dementia and others whose lives are touched by the disease, such as care partners, families, professional caregivers, medical professionals, academics, volunteers and service providers, each sitting in their own corner of the world, blogging and posting their ideas, writing their books and filming their videos. Few have had the reach of sites such as The Alzheimer’s Reading Room, and for the most part, each person has been an island, with few if anyone outside of their local area or country knowing about the invaluable experience and information they are offering.
For the first time, we have an organization with global reach—Alzheimer’s Disease International—hosting a website that brings together all these people and their ideas, their stories, their resources in one place that is being publicized to everyone no matter what country they live in.
I CAN! I WILL! is a unique information resource about dementia and the people who live with it, a place where people with dementia and others can benefit from the collective life experiences of kindred spirits living around our world.
Visitors to the site will find that the ideas are organized into books—an “idea library— one book for each of the target audiences (but don’t be afraid to peek into the other books!). Click on a book and the “chapters” of the book are listed, broad categories of ideas bundled under chapter names.
Click on a chapter name and the “pages” of ideas are listed. Visitors can comment on the ideas others have posted, and at any point can click on the “Send Us Your Ideas” button and type in their own idea. People have also sent in their videos in lieu of text.
The goal of the site is to eventually have hundreds of ideas pertaining to how people both with and without dementia can raise awareness of the disease in their families, neighborhoods, communities and countries and for simply living with the disease on a daily basis.
ADI is helping to ensure Richard’s global vision by informing their member Alzheimer Associations around the world about the project. Indeed, a good number of the postings on the website are representative of nations other than the USA and the UK.
For me personally, my main goal with I CAN! I WILL! is to inject a word into our vocabulary when we are talking about dementia, and that word is HOPE.
Based on the ideas already posted on the site by people with dementia—thoughts ranging from “teach us to stand up and talk” to “hold a discussion at your library” to “It’s Alzheimer’s, Not the Bloody Plague!”—and other people touched by the disease, I can honestly say that it’s already happening. When you take “I CAN! I WILL!” to heart, hope can’t help but follow.
The link to the I CAN! I WILL! website is http://www.alz.co.uk. You can also “like” us on Facebook at www.facebook.com/icaniwilldementia, and follow us on Twitter at @icaniwillsuso.
Laura Bramly is a writer, editor and graphic designer. She recently created Life Scenes, a book that helps people with moderate to advanced dementia to read again. Laura blogs about dementia-related topics at Mindset Memory Centre. She lives in Canada with her husband and two children.
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Original content Laura Bramly , the Alzheimer's Reading Room