Knowing what I know

At a recent party, I was asked by someone who had just learned that I am a dementia educator: “Knowing what you know about Alzheimer’s disease, what do you do differently in your own life?” In all the years I’ve worked in this field, I don’t think anyone had ever asked me that question before, and was delighted. So I refilled his drink and encouraged him to find a comfortable seat ….

Actually, my response came quickly and easily: “I have a long term care insurance policy, and an advance healthcare directive.” Bo-ring. I know that he actually wanted to know what superfoods I eat. What medicinal herbs do I take? What type of exercise is best for your brain, and do crossword puzzles help? But the truth is that nearly two decades of supporting people who are living with dementia has not turned me into a health nut. It’s made a realist.

Yes, the odds are still in favor of my not developing dementia, but if I live long enough, there’s a pretty good chance. My life expectancy currently hovers around 82 years, and even with a relatively low risk profile, I’ve got roughly a 30% chance of developing Alzheimer’s disease or another form of dementia by virtue of age alone. I donate, raise funds, and work hard to support research efforts that I hope will produce an effective form of treatment – and soon. But with no known means of prevention and a cure currently nowhere on the horizon, hope is not my primary strategy.

I’ve been honored to know many people with and without dementia who maintained a very high quality of life through the end of their lives, and it didn’t happen because they were rich, or lucky, or because they ate Brazil nuts. It happened because they and the people who cared for them planned ahead. They learned all they could and faced some hard truths, considered what types of care they might need, and had thoughtful conversations about what they value. Most importantly, they made sure that the people they entrusted with their care knew what they wanted, and had the tools they needed.

Absolutely, there are all sorts of ways that my lifestyle choices reflect what I’ve learned and what I teach about brain health. I pay attention to the research on risk reduction, and do what I can. I eventually got to some of those things in the conversation, too (I’m not totally terrible at parties!), and I’ll tell you about some of them here in future posts. But I think that the most important thing that I can do to live healthy and well is to not shut out the possibility of illness or the certainty of death. Instead I hold those thoughts close, and live accordingly.

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Looking for somewhere to start? Check out Compassion and Choices and the California Partnership for Long Term Care.