gateUnusual for me, I’ll just get right to the point:

If you work in the dementia field–be it on a project, a campaign, a dementia-friendly community, in long-term care, as a personal support worker, or one-on-one with a family member as a care partner–your default position must be that you take your lead from the person with dementia. It is the one true and authentic starting point for any project or activity that impacts the life of a person with dementia.

Last week I had the pleasure of meeting Rachel Thompson, who has created a book for people with dementia to read (click here to read about Rachel and her work). Its purpose is the same as In My World: to provide people with dementia with reading material in an accessible format.

We talked about how we both arrived at the idea for our respective books, that the issue was not with the inability of people in the mid-to-late stages of Alzheimer’s and other forms of dementia to read, but with the reading material they were provided. We had both come to this conclusion in the same way: by accident. Operating under the assumption that my mother could no longer read, I noticed that my mother, when shown a greeting card, was able to read the inside greeting. Rachel had a similar story with her grandmother. My second clue was sitting with my mom, going page by page through a bulky coffee table book of photos of Brampton, Ontario. Exciting stuff. But I made up stories about the photos as we went through the book, and at the end, my mother said, “Again!” How could I not have noticed? She was starved for activity, starved for stimulation, starved for interaction, starved for entertainment, starved for learning. She was human. How did I not notice?

That’s our job: to notice. Notice that a person might enjoy music. Notice that they might like to play a game, volunteer for an activity, sing a song, talk, walk, play. Don’t make assumptions. Just notice.

Here’s the second thing Rachel and I have in common: Convincing the “gatekeepers”–care partners, paid caregivers, activity directors, long-term care administration–that people in later stages of dementia could read. It’s hard to sell a book when few people think the ultimate recipient can’t read it. What I don’t understand is why people aren’t at least given a chance to read. Perhaps I should have a money-back guarantee: If your reading partner with dementia can’t read one word in this book, and if this book doesn’t spark discussion that lasts at least 15 minutes, your money back!!!!

So that’s our job: to notice, and to give ’em a chance.

In my daily work, the parallel to this situation is the battle to convince the gatekeepers of projects that they would benefit from the skills and expertise of people with dementia. Those of us working on projects that have impact on people with dementia must notice that these projects will benefit from the knowledge and insight that can only be given by a person with dementia. Beyond that, we should “practice what we preach” about meaningful engagement, and find every opportunity to give people with dementia the chance to be involved in our projects as full partners. Generally speaking, those in the early stages of dementia, particularly those with younger onset, are recently retired from their professions, and have many gifts to bring to the table beyond their unique and authentic perspective on their own lived experience of the disease. Without getting all preachy, the most meaningful engagement you can provide is to call upon a person with dementia to contribute their expertise to your project.

Forget supporting people with dementia; the real power is receiving their support. Your challenge is not to think about how you can help a person with dementia; think instead of how the person can help you. Think about how you, in stark contrast to those who might reject and isolate a person with dementia, can instead engage him or her in a real relationship where two people contribute equally and be in a genuine two-way partnership.

This means thinking about engagement beyond having people with dementia check the work you’ve already done. It means thinking beyond having one person with dementia on your committee, along with his or her care partner. It means thinking beyond your assumptions, just like when I realized the issue with my mom reading did not lie with her, it lay with me.

So here’s the part about giving people a chance. In the work and social world, people depend upon others for a leg up. Nepotism is alive and well. It’s not what you know, it’s who you know. In large part, we depend on the people we know to help us get involved in new and exciting activities: jobs, volunteer activities, relationships. People with dementia, for the most part, lack this leg up. There are few people with dementia in positions to say, “You know what? When considering who might be best for this job, we should think about so-and-so who is a very talented person who happens to also have dementia, but with such-and-such accommodation for her disabilities, she could make a huge contribution to this project. Let’s walk the talk and reach out to her to see if she would like to partner with us.” Given the lack of people with dementia who have direct input into who gets to be involved and who doesn’t, it’s up to the rest of us to notice the absence of people with dementia, to notice the contributions that they could make, and to give them a chance by including them in important work. Just as my mother in the late stage of vascular dementia, paralyzed from the waist down, and curled up in her chair for most of the day was so starved for knowledge that a picture book about Brampton was food for her soul, there are hundreds of thousands of Canadians with dementia also starved for the satisfaction of knowing they can still make a contribution and have an impact on others.

I know it can be done. There are people who do it successfully. In my work, Jan Ford, diagnosed with FTD, volunteered to reach out to people with dementia to contribute to My Dementia Story, and the project would not be moving forward without her efforts. Jan and Susan are two-thirds of a Mindset Centre committee to organize some online events, and let me tell you, when you see the program (coming soon!) you will be very impressed and I’ll tell you right now, it’s not my doing. They are brilliant visionaries and writers. I’m also proud to be a partner of the Ontario Dementia Advisory Group, and I’m the winner in all of this; they are doing incredible work and I learn from them weekly (visit the “Our Work” page on their website!). But I also see the barriers constantly thrown in their way as they fight for meaningful inclusion on projects where their voices should be the starting place, not an afterthought. And those who have benefited from their input on projects, when given the chance to have real, constructive input that is taken seriously, are blown away by their insights.

I have to say there is no excuse for advocacy organizations, retirement communities, dementia-friendly communities, and companies that provide products and services to people with dementia, not to have an active working group of people with dementia. One does not need to look further than Dementia Action Alliance in the US with their Leadership Board comprised entirely of people with dementia, the Scottish Working Group of people with dementia, the European Working Group, the DEEP project in the UK, ODAG of course, or Dementia Alliance International for that matter–everyone on the board has dementia. And, you could start a support group for people with dementia in your community. If you already have a group, take a chance; put the arts and crafts aside for one meeting and instead have a conversation. Ask, “What is it like to be you?”

And if you’re still feeling awkward about how to invite people with dementia to participate in your organization or community and are looking for an innovative (and fun) way to start a conversation, consider To Whom I May Concern®, the interactive theatre project that puts the voices of people with dementia front and centre.

Please just notice, and please give people with dementia a chance. Don’t be a gatekeeper. Be a gate opener.