Broader Options for Americans Act

Floor Speech

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Ms. STABENOW. Mr. President, we have so many issues in front of us that are critically important to families. I want to speak about an issue today that is extremely important to so many Michigan families and to families across the Nation.

It is estimated that 5.5 million Americans are living with Alzheimer's disease, including 1 out of 10 people over the age of 65. That number is growing. To put that in perspective, that is about the same number of people who live in Wisconsin or Minnesota or Colorado.

By 2050, it is estimated that as many as 16 million Americans may be living with Alzheimer's. That is more people than live in Pennsylvania or Illinois. From Alaska to Alabama, to New Mexico, to Maine, no State is immune, as we know. In my own State of Michigan, the number of people living with Alzheimer's disease is expected to rise from about 180,000 today to 220,000 in the year 2025, which is not very far away. That is an increase of about 22 percent in less than 7 years.

The cost of providing healthcare and long-term care for people affected by Alzheimer's is astronomical and growing. In fact, one out of every five Medicare dollars goes to Alzheimer's disease. It is estimated that last year, for the first time, the United States spent more than a quarter of a trillion dollars on Alzheimer's-related care. Without better treatments or a cure, those costs could surpass $1.1 trillion by 2050.

Of course, much higher than the dollar cost is the human cost. As anyone who has lived with the disease or anyone who has had a family member live with the disease can tell you--and this really is the ultimate family disease--Alzheimer's and related dementias are thieves. They steal everything--memories, personalities, even lives. No price tag could ever be put on the suffering they cause patients and their families and the strain they place on caregivers.

There are 15 million people in the United States caring for a family member with Alzheimer's. While many of them consider caring for a loved one a sacred duty, this duty still exacts a physical and mental toll on them. Caregivers suffer higher rates of heart disease, cancer, and depression than those in the broader population, and many are forced to quit their jobs or reduce the hours they work, creating additional personal and financial stresses.

Lauren Kovach of Brighton, MI, learned what that is like when her grandma--she calls her Chupe--was diagnosed with Alzheimer's. Lauren's mom was a caregiver. She and Lauren made a pact that they would never put Chupe in a nursing home because she, in Lauren's words, ``lived her life for her family and to take care of us--of course we were going to do the same for her.''

That required a lot of sacrifices. Lauren's mom retired early. Lauren withdrew from college and moved in with her mom to provide a ``loving home full of laughter,'' as she said. They received no help with caregiving or living expenses. Lauren wrote:

My mom is single-handedly the best person I know. She needs help. We need help. Many hundreds of families like mine need help.

Lauren's beloved grandma passed away last June, but Lauren is still fighting, and I am proud to be fighting alongside her. She wrote:

I go to Lansing each year for Advocacy Day--I will talk to anyone and everyone about this disease that is ruining millions of lives, including mine. Alzheimer's unfortunately isn't going anywhere anytime soon, but neither am I.

This fighting spirit is what keeps caregivers like Lauren going, and they deserve to know that we are, in fact, fighting alongside them. That is why Senator Capito and I have introduced legislation that will help give families in West Virginia, Michigan, and all across the country new tools to cope with an Alzheimer's diagnosis and the life that follows.

I would like to thank my friend from West Virginia for partnering with me on this important bill. The CHANGE Act builds on my HOPE for Alzheimer's Act, which was implemented beginning last year and supports parents and their families by requiring Medicare to pay for an individual care plan when a family member is diagnosed. This encourages more doctors to feel there is a reason to have early diagnosis because there is something they can do for people. It is certainly something that families need in order to have a plan, an action plan, once they receive that diagnosis.

The CHANGE Act approaches this disease from a number of different directions and builds on the HOPE for Alzheimer's Act.

First, it encourages early assessment and diagnosis. This is not happening as much as we would like. The Alzheimer's Association polling has indicated that a very high number--35 percent to 40 percent--of physicians are not doing early diagnosis. Oftentimes, they have said it is because they don't know what to do about it. There is no cure. There is not something to offer families other than fear.

We want to make sure there is early diagnosis because there is a lot going on right now with medications that actually will help early. We want to make sure that patients have more time to make their own healthcare decisions, to access community-based support services for their family truly to be able to plan. Through HOPE for Alzheimer's, we now have a caregiving plan that the physician will be reimbursed for coordinating and bringing together. But there is much more that we need to do.

Early diagnosis also gives patients and their families additional opportunities to participate in clinical trials. There is great research going on in Michigan and across the country that really does provide hope.

I am encouraged and hopeful about the additional dollars we just agreed to in the budget agreement last week. I was proud to be one of those pushing for additional research dollars for the National Institutes of Health. Hopefully, those opportunities and cures will come even faster.

Second, the CHANGE Act would improve care by testing what types of programs most help patients, their families, and caregivers. We know that case management, coordination of care, and caregiver support services can make a big difference both in the quality of life for patients and caregivers and in participation in clinical trials.

In addition, the CHANGE Act would offer States the opportunity to test programs that help Alzheimer's patients to remain in the community--which is so important--by reducing the financial burden on family caregivers.

Finally, the CHANGE Act would help uncover regulatory and legislative changes that would help accelerate Alzheimer's disease research, which is so critical right now. Families in Michigan and across the country have been waiting long enough. They have been waiting too long. They need a cure. Until that day comes, they need better treatments and more support.

Just ask Nora Ann Reid-LeZotte of Kalamazoo. Only a few months after her father's death, her mom started to show signs of Alzheimer's. Nora Ann was determined to care for her mom at home. Given that she is a nurse practitioner, Nora Ann figured she was perfectly prepared to assume the role of caregiver--and then, she says, she wasn't.

``My days, then weeks, then years became more overwhelming than I could have imagined,'' Nora Ann said of the 6 years she spent caregiving. Nora Ann and her husband moved in with her mom to care for her and rented out their own house to make ends meet. Caregiver support would have made a huge difference, Nora Ann said, yet none was available until her mom's condition deteriorated enough that she needed IV infusions to stay hydrated.

Nora Ann said:

I was exhausted. I lost my own identity, my friends, and my life for that timeframe. My family suffered and sacrificed so I could care for my mom with dignity and safety.

She added:

I would do it all again because she was my mom.

I can certainly identify with that, as I know all of us can. Nora Ann put her own life on hold to make her mom's final years as comfortable as possible. People like Nora Ann deserve our praise. Even more than that, they deserve our support and action on their behalf.

It is time for a change. Let's pass this legislation as quickly as possible to help patients, support caregivers, and find better treatments and a cure. Families across Michigan and the country are waiting.

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