Imagine: your doctor knows you have cancer, but chooses not to tell you or your family. Unthinkable, isn’t it? And yet consider this: fewer than half of all seniors diagnosed with Alzheimer’s disease or their caregivers are actually told of the diagnosis. I just spent three days in the other Washington at the national Alzheimer’s Association’s Advocacy Forum. I was one of a thousand volunteers. We were loaded up with all kinds of facts and figures to use in conversations with all 12 of our Washington state senators and representatives and their super-smart aides. But that factoid about diagnosis is the one that stuck with me. Really? Really: 55 percent of seniors diagnosed with Alzheimer’s and their caregivers are not told. If the issue was that 55 percent of doctors assume someone with dementia would not remember their diagnosis, so why bother, then surely they would at least tell that person’s family caregiver. But no, in 55 percent of cases, they don’t even do that. I can tell you many dire and alarming facts about Alzheimer’s disease. For example, it is now the most expensive disease in America. This year, we will spend 226 billion dollars on caring for people with Alzheimer’s. That number is expected to soar to 1.1 trillion in 2050. Two thirds of those dollars come from Medicare and Medicaid. The other third comes out of the pockets of overwhelmed families. None of this is sustainable, which is why one thousand of us were on Capitol Hill trying to make the case for [...]

We were five for five. The first five legislative aides we visited all had personal connections to Alzheimer’s disease: three grandmothers, one aunt and one best friend’s grandmother. This could work, I thought. We could build support, one aide’s grandma at a time! “Building support,” also known as “lobbying,” is a word that has acquired a lot of baggage in the last five or fifty or 250 years, depending on how you’re counting. “Did you lay some sports tickets on the desk when you walked in?” my son asked. “Yeah, right,” I said. “Doesn’t quite work like that on the nonprofit side of the fence.” But the question did make me wince. Because in truth? The day I spent walking around Olympia with a purple sash tied, beauty-pageant style, from shoulder to waist made me proud to be a volunteer lobbyist. I was one of 105 humble foot soldiers who showed up to help the Alzheimer’s Association make the rounds. Most of us were rookies. Fortunately, we were matched up with experienced staffers who’ve done this before. My team leader was Janet Ceballos, social services manager for the Western and Central Washington chapter. Seven times, I watched her approach a state lawmaker’s reception desk, her face friendly but determined, her palm-sized note card handy in case she needed it. We weren’t on a hard-sell mission. In 2014, state lawmakers passed a bill establishing an Alzheimer’s Disease Working Group, whose job it is to come up with ways our state can cope with the predicted dramatic increases [...]