Federal Priorities

It’s time to act. Public policy decisions must provide the resources necessary to support programs that affect people with Alzheimer’s disease and their caregivers. Policymakers must enact public policies that provide better health and long-term coverage to ensure high-quality, cost-effective care for the millions of people who face this disease every day.

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Improve Access to Critical Support Services for People Living with Younger-Onset

Care and support services are critically important for individuals living with Alzheimer’s and their caregivers. But because of their age, some individuals living with younger-onset Alzheimer’s are not eligible for existing programs available to older americans. The Younger-Onset Alzheimer’s Act of 2019 would allow these individuals to access programs under the Older Americans Act (OAA). Take action today.

Educate Providers About Care Planning Available Through Medicare

For individuals living with Alzheimer’s and their caregivers, care planning is essential to learning about medical and non-medical treatments, clinical trials, and support services available in their communities.

Since 2017, Medicare has covered care planning for individuals with cognitive impairment including dementia. Clinicians now have the time and resources to provide a comprehensive set of care planning services to people with cognitive impairment and their caregivers. However, in the first year, fewer than 1% of seniors living with Alzheimer’s received the care planning benefit.

The Improving HOPE for Alzheimer’s Act would educate clinicians on Alzheimer’s and dementia care planning services available through Medicare. This will give clinicians the knowledge and tools to better help their patients and families living with dementia. Take action today.

Fund the Alzheimer’s Federal Health Infrastructure

In December 2018, Congress overwhelmingly passed the BOLD Infrastructure for Alzheimer’s Act. The law directs the Centers for Disease Control and Prevention (CDC) to strengthen the public health infrastructure across the country by implementing effective Alzheimer’s interventions focused on public health issues such as increasing early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations. The BOLD Infrastructure for Alzheimer’s Act will accomplish this by establishing Alzheimer’s and Related Dementias Public Health Centers of Excellence, providing funding to state, local, and tribal public health departments, and increasing data analysis and timely reporting. To ensure the law’s successful implementation, take action today to ask Congress to fully fund the $20 million authorized in the law for CDC in FY20.

Alzheimer’s Research Funding

Palliative and Hospice Care (PCHETA)

Nearly half of all people with Alzheimer’s and other dementias are in hospice care at the time of their death. Less than half of surveyed nursing homes have some sort of palliative care program. For people with advanced dementia, such care — which focuses on managing and easing symptoms, reducing pain and stress, and increasing comfort — improves quality of life, controls costs, and enhances patient and family satisfaction. But, as the demand for such care grows with the aging population, more must be done to ensure an adequately trained workforce. The Palliative Care and Hospice Education and Training Act would increase palliative care and hospice training for health care professionals, launch a national campaign to inform patients and families about the benefits of palliative care, and enhance research on improving the delivery of palliative care.

Congress.gov

PCHETA

Achievements

Here is what we have accomplished with your dedication and focus on the issues.

BOLD Infrastructure for Alzheimer's Act

With a strong bipartisan vote in an otherwise partisan environment, the U.S. Congress just delivered a victory to millions of Americans currently living with Alzheimer’s disease and their caregivers.

By passing the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L. 115-406), Congress has authorized $100 million over five years (FY20-FY24) to build and enhance the U.S.’s public health response to the Alzheimer’s crisis.

Health Outcomes, Planning and Education (HOPE)

“The 114th Congress saw the advancement of critical legislation to increase access to care planning and support services. The Alzheimer’s Association, AIM, and our advocates led the way on the HOPE for Alzheimer’s Act (which was designed to provide comprehensive care planning services following a dementia diagnosis) to provide Medicare coverage for care planning services for those living with Alzheimer’s disease and other cognitive impairments. Because of our efforts, congressional cosponsorship numbers soared, and in November 2016, the Centers for Medicare and Medicaid Services (CMS) finalized a decision to pay for cognitive and functional assessments and care planning. In 2017, for the first time, people living with Alzheimer’s will have access to care planning with a medical professional covered by Medicare.

A new Medicare billing code–known as G0505–now allows clinicians to be reimbursed for providing care planning to cognitively impaired individuals.”