Working to find actionable solutions to the nation's key challenges.

Doing More to Support Alzheimer’s Patients and Caregivers

By Natalie Weiner

Thursday, June 28, 2018

Alzheimer’s disease is one of the leading causes of death in the United States, yet few Americans understand their risk for the disease or how their lives will be affected if they or a family member are diagnosed. Alzheimer’s and other dementias are physically, mentally, and financially draining for people living with the disease and for the family members caring for them. They are also expensive for our health care system to treat, as patients often have additional chronic conditions and require long-term supports and services. But new chronic care provisions in the Bipartisan Budget Act offer the possibility of providing better care for patients and their families and lowering costs to our health care system by reducing emergency room visits and hospital admissions.

Who does the disease affect?

June is Alzheimer’s & Brain Awareness Month, and with 47 million people worldwide living with dementia, it is important to understand the disease and its burden on Americans and our health care system. Symptoms of Alzheimer’s, a progressive brain disease, include both functional and cognitive impairments such as difficulty remembering things, depression, disorientation, impaired communication, behavioral change and difficulty walking, speaking, and swallowing. According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s and this number could rise to as many as 16 million by 2050. Alzheimer’s is the sixth-leading cause of death in the United States, and every 66 seconds an American will develop the disease. While the disease continues to affect more and more Americans, it does not affect everyone equally.

Alzheimer’s disproportionally affects women and people of color. Two-thirds of those diagnosed are women, yet the science on why is unclear. According to a recent survey released by the Women’s Alzheimer’s Movement (WAM) and the Bipartisan Policy Center, most women are unaware of the their increased risk for Alzheimer’s and have no idea that symptoms develop 20 to 30 years before diagnosis. African-Americans are about twice as likely and Hispanics are about 50 percent more likely to have Alzheimer’s or other dementias as their white counterparts, yet African Americans report being the least concerned with the disease.

The Burden on Caregivers and Government Programs

The disease not only affects the more than 5 million people living with it, crucially, it places extreme burdens on the more than 15 million people who provide unpaid care for those with Alzheimer’s and other dementias. Caregivers face emotional, health, and financial difficulties related to the challenges of the disease, but families often have a hard time discussing long-term needs. According to the WAM/BPC survey, 66 percent of Americans want a family member to be their primary caregiver, yet only one in four seniors have had the conversation with their children, and only one in three millennials have talked with their parents about the issue. The burden of caregiving for individuals with Alzheimer’s often falls to women, who make up two-thirds of the larger caregiving population. However, over half of American women report that they are ill-prepared to serve as caregivers for their parents.

New chronic care provisions in the Bipartisan Budget Act offer the possibility of providing better care for patients with Alzheimer and dementia. 

Most Americans are unaware of the out-of-pocket financial costs associated with long-term care and incorrectly believe that Medicare will help cover the costs, which means many are financially unprepared to care for a loved one. Caring for those with Alzheimer’s is also costly to society at large. According to the Alzheimer’s Association, total payments in 2018 for all individuals with Alzheimer’s or other dementias are projected to be $277 billion. Medicare and Medicaid are expected to cover $186 billion, or 67 percent, of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $60 billion. Total costs associated with Alzheimer’s are expected to surpass $1 trillion by 2050.

What can policymakers do?

Policymakers have several available avenues to provide support for those with Alzheimer’s and the people who care for them while controlling the costs associated with chronic diseases. BPC, with the support of The SCAN Foundation, The Robert Wood Johnson Foundation, The Peterson Center on Healthcare, and The Commonwealth Fund, has been working since 2013 to develop policy solutions focused on how to finance and deliver quality care to individuals with complex care needs, a category many Alzheimer’s patients fall into. BPC recently released a Policy Roadmap for Individuals with Complex Care Needs, which argues the following issue areas must be addressed:

  • A focus on person- and family-centered care that places a priority on understanding the care goals of families and delivering the services that support them
  • An emphasis on coordinating care to ensure that services work across programmatic silos and avoid unnecessary or duplicative care and costs
  • Strategies to eliminate programmatic barriers to delivering coordinated care
  • Creating a path from medical-driven models that provide care based on what is reimbursed to person-centered models that provide what people need and want
  • Support for family caregivers
  • Efforts to identify financing strategies, both public and private, to support the delivery of long-term services and supports

The Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act, as included in the Bipartisan Budget Act of 2018, has the potential to reshape coverage and payment policy in Medicare. The legislation includes many provisions that align with BPC’s policy roadmap and other reports aimed at improving care for people with chronic illness or disabilities, including those with Alzheimer’s and other dementias. To learn more about the chronic care provisions in the Bipartisan Budget Act, see How Changes to Medicare Will Help the Chronically Ill and Disabled: An Explainer.

More research is needed about the cause of Alzheimer’s and why it affects certain groups of people differently. The omnibus spending bill signed into law on March 23 included an increase of $414 million for Alzheimer’s and dementia research at the National Institutes of Health. This increased funding combined with the chronic care provisions of the Bipartisan Budget Act are vital steps toward creating a health care system that works better for patients and caregivers.

Policymakers could also take steps to address the prevalence of the disease and increase support for caregivers. The Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act of 2018 was introduced earlier this year in with bipartisan support in both chambers of Congress. This bill would incentivize clinicians to detect, refer, and diagnose dementias in their earliest stages, test a comprehensive continuum of care modeled on the Programs of All-inclusive Care for the Elderly (PACE) program, and create a coverage and payment model that offers family caregivers evidence-based training and certification specific to dementia care.

The chronic care provisions of the Bipartisan Budget Act and increased funding for research included in the spending bill are vital steps toward a health care system that works better for patients and caregivers. Congress and the Trump administration can work to build on that foundation and make it easier to fund and deliver care for people with Alzheimer’s, including the thousands of people newly diagnosed every day, while also giving much-needed support to those who care for them.

KEYWORDS: 115TH CONGRESS, ALZHEIMER'S, ANDY BARR, BIPARTISAN BUDGET ACT OF 2018