Making progress on Alzheimer’s Disease: All we can do right now is support research and each other

Like many Pennsylvanians, my family and I have seen firsthand just how devastating Alzheimer’s can be

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I met not long ago with dedicated scientists from the University of Pittsburgh who are pushing the frontiers of their field by developing state-of-the-art therapies for a truly tragic disease — Alzheimer’s.

The visit was personal: My father was diagnosed with Alzheimer’s last year. My grandmother died from the disease.

Like many Pennsylvanians, my family and I have seen firsthand just how devastating Alzheimer’s can be, not only for those suffering from it, but also for their families and caregivers.

As Americans live longer, we are seeing more and more cases of Alzheimer’s. While most people I meet are familiar with the illness, they might not know just how widespread it is in our state. Pennsylvania has the fifth-highest statewide total of people suffering from Alzheimer’s. Nationally, someone is diagnosed with it every 67 seconds, according to Kristen Bires, education and outreach manager of the Alzheimer’s Association, Greater Pennsylvania Chapter.

Research from the U.S. Census, Department of Labor, National Alliance for Caregiving and the AARP estimates that Pennsylvania’s Alzheimer’s and dementia caregivers provide 760 million hours of unpaid care valued at over $9 billion. That’s a staggering figure, and a true testament to their compassion and determination.

Last month in Pittsburgh, I sat down with some of those caregivers — spouses, sons and daughters of Alzheimer’s patients. They were people just like me and my wife, Kris. They were people who shared the worry about the deterioration of loved ones, seemingly worse with every visit. At first, you feel helpless. Then, you take action.

That’s what Deb Winn-Horvitz plans to do. President and CEO of the Jewish Association on Aging in Pittsburgh, she is hoping to launch a pilot program to provide adult care at night for patients. Dementia patients have an especially difficult time at night and many become agitated. Families worry that their loved ones will wander off in the dark. What a godsend to have reliable and safe care for the Alzheimer’s patient and a brief respite for the caregiver. Deb’s Nighttime Dementia Program will offer arts, exercise programs and music therapies to ease this phenomenon. Deb’s response is simple, yet profoundly loving.

While finding a cure for Alzheimer’s will be a serious challenge, I am proud to report that Pennsylvania is leading the charge. A “life sciences research arc” spans our commonwealth, anchored in the west at the University of Pittsburgh and in the east at the University of Pennsylvania. The Alzheimer’s research occurring in our state holds so much promise for health and medicine, and it gives me and my family a lot of hope.

As a member of the Congressional Task Force on Alzheimer’s, I am committed to finding the most responsible and effective way of ensuring that this work continues and succeeds. Recently, I’ve signed on to bipartisan legislation that requires the director of the National Institutes of Health to annually submit his professional recommendation on the appropriate level of funding needed to meet the challenge of Alzheimer’s disease to both Congress and the president. It’s important that we determine how much funding is needed to cure this disease and reshape our budget priorities accordingly.

Alzheimer’s is a tragic illness that robs its victims of one of their life’s greatest possessions — their memories. Working together, I am confident we can end it.

If someone in your family suffers from the disease, I encourage you to share your story. You will be amazed at the support you receive — and that you can provide to others who face the same difficult responsibility of caring for a loved one who suffers from Alzheimer’s or dementia.

Pat Toomey, a Republican, represents Pennsylvania in the U.S. Senate.

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