Preparing for Alzheimer's in America's 'Age Wave'

By Samantha Scotti | Vol . 26, No. 42 / November 2018

LegisBrief logoDid You Know?

  • An estimated 5.7 million Americans currently live with Alzheimer’s disease.
  • Alzheimer’s is the sixth-leading cause of death in the United States.
  • Medicaid payments totaled over $46.5 billion in 2018 for Americans 65 and older living with Alzheimer’s or other dementias.

Alzheimer’s disease, the most common form of dementia, is a progressive neurological illness that impairs thinking and the independence of millions of people worldwide. The risk of developing the sixth-leading cause of death in the United States increases with age. And, with the oldest baby boomers turning 72 this year, the generational shift—or “age wave”—is well underway, resulting in a substantial increase in the number of Americans living with the disease.

An estimated 5.7 million Americans currently live with Alzheimer’s, and reports anticipate this number will double to 11.6 million by 2040. Alzheimer’s disease is usually diagnosed in people 65 and older, but it starts earlier with subtle neurological changes occurring years or even decades before symptoms appear. 

With rising numbers of diagnosable cases and the large impact the disease has on state and federal budgets, states have a keen interest in Alzheimer’s and dementia policy. As dementia affects physical and cognitive functions, such as speech and memory, people with Alzheimer’s are more likely to use long-term services and supports (LTSS). These range from home and community-based services (HCBS) that assist with everyday activities to more intensive care provided in a facility, such as a nursing home. A considerable amount of care is also provided by unpaid caregivers—16.1 million Americans—who are often spouses, family members, friends or others. Alzheimer’s disease and its impact on patients, families and caregivers is a growing public health concern.

Medicaid, the largest payer of LTSS, covers more than half of national LTSS costs. Medicaid payment services related to Alzheimer’s for Americans 65 and older living with the disease or other dementias vary substantially by state. National Medicaid payments totaled over $46.5 billion in 2018, a number anticipated to increase 30 percent by 2025.

State Action

States consider various policy options to support people with Alzheimer’s and their care providers. Some policies are broad in approach—such as strengthening payment and delivery systems for all LTSS or supporting unpaid family caregivers through connections to services and resources. Other policies are more narrowly targeted to individuals with the disease.

Alzheimer’s State Plans. To address and prepare for the Alzheimer’s epidemic, since 2007, 49 states and territories have published a state Alzheimer’s disease plan. These written reports explore the current impact of Alzheimer’s disease in the state and outline steps the state must take over the next three to five years to improve its services for and support to people with Alzheimer’s and their families.

Almost all state plans include recommendations for dementia training for health care and support workers. Most state plans also have provisions on improving the health care received by those with the disease and assisting unpaid caregivers. Other subjects common among state plans include improving and expanding home and community-based services, increasing public awareness, improving data collection and improving the safety-related needs of those with Alzheimer’s.

Early Detection and Diagnosis. Virginia SB 305, enacted in 2018, directs the Department of Health to educate health care providers about the importance of early detection and timely diagnosis of cognitive impairment, and to increase the understanding and awareness of the early warning signs of Alzheimer’s disease and dementia.

Massachusetts HB 4116, also enacted in 2018, requires health care providers to complete a one-time continuing education course on the diagnosis and treatment of patients with cognitive impairments. It also requires hospitals to develop and implement a plan for recognizing and managing patients with dementia. The law allows doctors to share an Alzheimer’s diagnosis and treatment plan with a family member or legal representative within the existing framework of federal and state privacy laws.

Building a Dementia-Capable Workforce. Recognizing that individuals with Alzheimer’s or other dementias have unique health care needs, states are considering policies to support care providers and facilities, along with family caregivers.

California Health and Safety Code § 1337.1 requires skilled nursing and intermediate care facilities to have a specified number of training hours to address Alzheimer’s and dementia needs. New Hampshire SB 161, enacted in 2017, establishes a commission that evaluates the direct care workforce and preparedness of long-term support services for aging adults with dementia. And Oklahoma’s 2017 HB 1620 directs the State Board of Health to promulgate rules requiring certain dementia training.

Dementia Training for First Responders and APS Workers. Dementia training is also needed for adult protective services (APS) officials, first responders and law enforcement. They frequently interact with people with Alzheimer’s and other dementias and are generally among the first to be contacted regarding emergencies, abuse and exploitation.

In 2014, Connecticut enacted SB 179, establishing mandatory dementia-specific training for a wide range of personnel, including emergency medical technicians (EMTs), probate judges, paid conservators and protective services employees. The legislation requires that the refresher training required every three years for EMT recertification includes training in Alzheimer’s disease and dementia symptoms and care.

Alzheimer’s and Dementia Task Forces. Various states have created task forces to coordinate statewide efforts to ensure quality care for those living with Alzheimer’s or other dementias.

Wisconsin Speaker Robin Vos (R) formed the Task Force on Alzheimer's and Dementia to recommend policy initiatives to improve care, which led to the “Wisconsin Cares Legislative Package.” The Legislature enacted three of the bills introduced in the 2015-2016 session. They included funding for caregiver respite, mobile crisis unit training and developing a pilot program to ensure that people with dementia who are experiencing a crisis are placed in an appropriate setting—Assembly Bill 787, Assembly Bill 790 and Assembly Bill 786, respectively.

Federal Action

The Centers for Medicare & Medicaid (CMS) promulgated a rule, which went into effect in January 2018, to allow for Medicare reimbursement under a new code for certain services.  They include improving detection, diagnosis, and care planning and coordination for patients with Alzheimer’s disease or other dementias and their caregivers. The code was developed to provide reimbursement for comprehensive evaluation of a new or existing patient who exhibits signs and/or symptoms of cognitive impairment.