It's almost like a Hollywood dystopian future: Half the population gets an incurable disease that destroys their brains while the other half watches and waits, caring for their loved ones and wondering if it will happen to them. There are no cures, no preventive measures, nothing at all to do but watch loved ones wither away and eventually die.
But this isn't the movies; it's real life. And it's really happening. Right now. Half of all people over 85 have some form of dementia, and their families and loved ones are caring for them. And, if those involved in the caregiving are children of those with the disease, they're left wondering if and when it will happen to them. If this sounds scary, that's because it is.
This is our reality, because chances are, if you're reading this, you're a caregiver. But imagine a different future. Imagine a future where there is no Alzheimer's disease. Where your loved ones (and eventually you) live well into your 80s and beyond with clear and functioning minds, able to live productive lives. That's the future I want to see happen. And that's the future many of us are fighting for.
Like many of you, I often feel public policy and legislation are well outside of my control. But it turns out they aren't. I recently became a founder of a Washington-based organization called Women Against Alzheimer's, which is part of USAgainstAlzheimer's. As you probably know, women are disproportionately the victims of Alzheimer's as well as the primary caregivers for other victims of the disease, so women are especially important fighters in the war against this horrific pandemic.
Now I must admit, I've never before been an activist, but I recently read something that changed my mind about this. It had to do with gun control legislation and how Washington congressional representatives operate. It doesn't matter where you stand on this particular issue to heed the lesson this taught me. According to a Gallup poll, a majority of Americans favor some gun control legislation (as do I). However, they do not communicate that perspective to their congressional representatives; they just express that opinion when asked by pollsters. On the other hand, the gun lobby is persistent in communicating its point of view to Congress. It inundates congressional representatives with e-mails, letters, phone calls, and in-person visits. It is the proverbial squeaky wheel and, not surprisingly, Congress hears its voice and votes its preference, even though polls showed that most Americans favor gun control legislation.
That inspired me to take action. If my voice could help move that squeaky wheel, I want to be sure to be heard. It's not about politics; I'm not political at all. It's about saving lives. It's about taking action to end this disease as soon as possible, and about providing the necessary support for caregivers until the day this disease is conquered.
As a member of Women Against Alzheimer's, I traveled to Washington, D.C., for the Founder's Summit to learn more about the disease, what's being done to discover a cure and prevention, and to make our presence and position known to congressional representatives. I was joined by an amazing group of women, from a Harvard-trained research scientist on the front line of finding a cure to caregivers like you; from founders of other nonprofits dedicated to finding a cure to physicians dealing with Alzheimer's disease patients and their families. Our mission was to let our representatives in Washington know that enough is enough: They need to take specific actions right now to help speed up the quest for effective therapies and treatments for Alzheimer's and other dementias, while enhancing the care and support provided to patients and families. To you.
Here's what Congress needs to do right now:
Cosponsor and support the Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act that would allow Medicare to reimburse physicians for Alzheimer's diagnostic and care planning services.
Your voice needs to be heard. It can literally change the care you provide for your loved ones while we move closer to finding a cure and prevention for this dystopian future we all face. All you have to do is follow the link to reach out to your congressional representative. The letter is already written; you just need to sign it to really make a difference. And please pass this message on to your friends and family. Be part of the squeaky wheel and have a say in the way we as a country solve the complex challenge that is Alzheimer's disease.