Alzheimer’s Patients, Caregivers Receive “HOPE” Under Proposed Alzheimer’s Law

Though Baby Boomers do focus on cash flow in retirement, planning beyond that with an estate plan is often not on their radar.

Modern medicine is still researching better treatments for Alzheimer’s disease. In the meantime, Congress is considering a different kind of remedy – the law. The Health Outcomes, Planning, and Education, or HOPE for Alzheimer’s Act, was recently introduced into Congress to fill some of the coverage gaps left by Medicare. While Medicare covers the diagnosis of Alzheimer’s disease, it leaves out the lengthy and complex planning for the care that the disease requires. The proposed law would expand Medicare coverage, introducing a benefit that provides caregivers information about the resources available to them as they plan for caring for a loved one who has the disease.

“Current coverage for care planning falls short of what is necessary for people newly diagnosed with Alzheimer’s and their families to adequately process and plan for their new reality,” Robert Egge, chief public policy officer of the Alzheimer’s Association said following the introduction of the bill. “This legislation encourages doctors to talk to their patients about an Alzheimer’s diagnosis and ensures that the necessary steps are taken to provide them with access to available care planning services.”

Alzheimer’s Effects Many Michigan Seniors

According to figures from the Alzheimer’s Association, more than 5 million American are currently living with Alzheimer’s disease, which is the sixth leading cause of death in the United States, killing an estimated 500,000 people each year. But the association also says that nearly half of people with Alzheimer’s disease, or their caregivers, say they were not told of the diagnosis by their doctor. That’s a stark contrast to cancer. In the four most common types of cancer, more than 90 percent of people were told of their diagnosis, the Alzheimer’s Association’s says.

Even when patients or their caregivers receive the Alzheimer’s diagnosis from their doctors, they are more likely told only after the disease has already reached a more advanced stage. Why are doctors not forthcoming with such important diagnostic information? According to an Alzheimer’s Association survey, it’s because doctors believe that there’s nothing that can be done about the disease.

Alzheimer’s Consequences

Unfortunately, a late Alzheimer’s diagnosis has consequences. The absence of a diagnosis from the medical record could adversely impact how caregivers coordinate care and manage any chronic conditions. That’s important because complications from managing chronic conditions increases health care costs, the Alzheimer’s Association says. Alzheimer’s and other dementias are already expensive diseases on their own, costing a projected $226 billion in 2015. By 2050, the association projects that those costs rise to $1.1 trillion. The inability to properly coordinate care because of a late Alzheimer’s diagnosis will only compound those costs.

The association points to studies showing that early diagnosis comes with benefits. For example, an early diagnosis means patients still have the ability to be an active part of the planning for their care. Early diagnosis also enables a person to choose to participate in support services or clinical trials, if those are desired options.

HOPE for Alzheimer’s has bipartisan support. Introduced by lead sponsor Sen. Debbie Stabenow, a Michigan Democrat, it is co-sponsored by Sen. Susan Collins, a Maine Republican. In the House of Representatives, the legislation is sponsored by New Jersey Rep. Chris Smith, a Republican, and Rep. Paul Tonko, a New York Democrat.

If passed into law, HOPE for Alzheimer’s would put the burden on the Department of Health and Human Services to conduct outreach to inform health care providers about the services under the new law. It would also require HHS to report on any barriers that people encounter in accessing services, and then provide recommendations to overcome them.

“This is very much a family disease, because the whole family is impacted by this, so we need to take the next step,” Stabenow told Michigan Radio. “Make sure that people are getting diagnosed, that they know what’s available, and that we can start the process of supporting the family.”

To learn more about what the HOPE for Alzheimer’s Act could mean for you and your family, contact us.

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