The COVID-19 pandemic presents additional challenges for more than 5 million Americans living with Alzheimer’s, their caregivers, the research community and the nonprofits that support them. As Congress works on the economic relief package, we’re asking them to include these bipartisan policies that will have an impact on the millions of families affected by Alzheimer’s and other dementia: the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act, the Improving HOPE for Alzheimer’s Act, and expanding access to credit for nonprofits like the Alzheimer’s Association to continue to serve our constituents’ needs.
Alzheimer's is the most expensive disease in America, costing an estimated $290 billion in 2019. By mid-century, as the number of people living with the disease is set to nearly triple, the costs to our economy are projected to reach more than $1 trillion, with two-thirds of these costs paid by Medicare and Medicaid. Congress has recently provided additional funding for Alzheimer's research at the National Institutes of Health (NIH), yet a greater investment is still needed. AIM and our advocates continue to grow bipartisan support for increased research funding.
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. In December 2019, Congress took bipartisan action and allocated $10 million to fund the law.
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.
Nearly half of all people with Alzheimer's and other dementias are in hospice care at the time of their death. However, less than half of surveyed nursing homes have some sort of palliative care program. For people with advanced dementia, such team-based 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 coordinated 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.