The Leader Test

We need leaders who study the caregiving experience with a recent lived experience.

What happens when an organization hires a leader without any experience in its industry, without using its product and without understanding its customers?

I believe that’s a company without an effective leader. Without an effective leader, a company will struggle.

Yet, in the caregiving space, organizations regularly hire leadership who have not studied the caregiving experience and who have not recently lived the experience. These two criteria — an individual who studied the experience and recently lived it — are critical. When we have leaders who don’t understand it and who haven’t lived it then family caregiver don’t receive the leadership they deserve. Our work to support family caregivers goes backward because these leaders miss the mark in their messaging, their priorities, their budgets and their actions.

Studying the experience means you understand the experience. As a student of the experience, you commit to gaining insights at all times. Research means you look to collect data about a specific situation for a limited period of time. Studying gives you the whole picture which means you understand how family caregivers interact with The 17 Caregiving Systems.

Because you study the experience, you understand the experience right now. Research gives you a glimpse of what was. When you have the wisdom that comes from studying the experience, you know the kind of help that helps family caregivers right now and can advocate for what family caregiver will need next.

Living the experience recently means you get it because you felt it. A caregiving experience is an emotional one. If you haven’t lived it, you can’t begin to understand what that experience feels like. When you have that understanding, you know the kind of support that works for family caregivers.

Leaders in our space regularly receive the opportunity to speak about caregiving issues at conferences, in the media and on social media. Yet, without studying and living the experience, they misrepresent the caregiving issues. They incorrectly speak about us without effectively speaking for us. The energy then goes toward solving what aren’t pressing problems while missing the opportunity to truly resolve priority problems.

What’s worse: Our space accepts these leadership choices. Part of the acceptance comes because family caregivers have no time to advocate for better choices. Family caregivers have no time.

Part comes from something I feel; I’m just trying to find my own space to make an impact. I have spent the past few years making specific choices to protect my own mental health. I’m often so frustrated and upset about how much our space doesn’t help family caregivers because the space follows the wrong leaders. If I’m in my own space, away from these leadership choices and their impact, I feel better. (Note: I launched a small business to support family caregivers in 1995 joining just a handful of other organizations. I’ve been in the space since then.)

Staying silent means I allow any progress we’ve made to stop or go backward. I can’t be silent and an effective advocate at the same time.

We need our organizations who call family caregivers their members, clients or advocates to make strong leadership choices. When we don’t have effective leaders, I fear family caregivers will continue to suffer. During the past 30 years, despite my best efforts, the family caregiving experience has gotten much, much harder.

I’m curious: What do you believe leaders need to be effective within their industry and within their organization?

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