New Hope for the New Year—Legislation on Alzheimer’s Disease

In 2010, Alzheimer’s disease and related dementias (ADRD) rose to the sixth leading cause of death in the United States, and the fourth leading cause in California alone. While this data, provided by the Center for Disease Control and Prevention (CDC), brought on fears of the future, the last decade has seen a number of advancements in research and practice for ADRD. To kick off the new decade, we are going to take a look at some of the policies and projects driving innovation in ADRD that we can look forward to with hope in the 2020s. National Alzheimer's Project Act (NAPA) In 2011, President Obama signed the National Alzheimer’s Project Act, creating a unique framework, including research and caregiver support, for addressing ADRD. This legislation was the first of its kind to take a strategic approach to addressing ADRD care through five goals:

1. Prevent and effectively treat ADRD: development of effective prevention and treatment modalities by 2025

2. Enhance care quality and efficiency : providing an adequate supply of culturally-competent professionals with appropriate skills, ranging from direct care workers to community health and social workers to primary care providers and specialists

3. Expand supports for people with ADRD and their families: the Federal Government and partners will undertake strategies and actions that will support people with ADRD and their families and caregivers requires giving them the tools that they need, helping to plan for future needs, and ensuring that safety and dignity are maintained

4. Enhance public awareness and engagement: a better understanding of ADRD will help engage stakeholders (health care providers, workplaces having employees who are family caregivers etc) who can help address the challenges faced by people with the disease and their families

5. Improve data to track progress: enhanced tracking will be used to identify and monitor trends in risk factors associated with ADRD, and assist with understanding health disparities among populations such as racial and ethnic minorities, low income populations, rural residents, and sexual and gender minorities

Where we are now: Since NAPA’s inception, dozens of summits focusing on each particular goal have occurred around the country. Industry leaders in research, health care, public policy, and other areas have started and maintained the conversations about ADRD and have brought them to the forefront of public attention. While there are still great strides to be made in order to achieve the objectives outlined in the five goals, NAPA has created a new public and private sector dialogue about ADRD by highlighting how neglecting these issues will, ultimately, be to the detriment of every single American. To follow this project and its updates, please see: https://aspe.hhs.gov/national-alzheimers-project-act and to keep track of individual ‘wins’ in ADRD research, trials, diagnosis and support, see the National Institute of Health’s page : https://www.nia.nih.gov/research/milestones

Alzheimer’s Healthy Brain Initiative In early 2019, Santa Barbara’s own Assemblymember Monique Limon and Senator Hannah-Beth Jackson introduced the Alzheimer’s Health Brain Initiative to California legislation. This bill, titled AB-388, provides instruction and direction for the state government and department of public health in addressing the systemic and financial challenges brought on by the growing ADRD epidemic. AB-388 takes a three-pronged approach to “plan and prepare for the imminent Alzheimer’s crisis”:

1. Implementation of a statewide public awareness campaign focused on the signs and symptoms of Alzheimer’s to improve early detection and timely diagnosis

2. Adopting priority actions outlined in the CDC Healthy Brain Initiative

3. Award competitive grants to eight pilot projects in select counties to encourage local innovation, foster best practices and target populations at greatest risk of developing Alzheimer’s, contingent upon appropriation by the Legislature.Where we are now:  California’s Department of Public Health has begun to adopt the CDC’s Healthy Brain Initiative Roadmap which calls on the state to monitor and evaluate the state of the population affected by ADRD, educate and empower the nation, develop policies and mobilize partnerships and assure a competent workforce of care providers. In addition to setting up this clear framework for the state to follow, there will also be a one-time investment of $10 million to fund projects in eight different counties. This bill is in the early stage of adoption but sets a massive precedent for taking a state-specific approach to addressing ADRD. To learn more about this bill: https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201920200AB388 To see the CDC Healthy Brain Initiative Road Map: https://www.cdc.gov/aging-programs/php/nhbi/roadmap.html Despite today’s often adversarial political climate, the long-reaching impact of ignoring Alzheimer’s disease and related dementias as a national emergency is finally lighting a fire under policy-makers. There may be disagreement on many things, but the country, and especially our state, is realizing that not dealing with ADRD immediately will lead to a complex and costly future. It should ignite hope and perseverance in the hearts of caregivers and partners in care that we are moving into the new decade with a tangible goal and those who support the work. Keep yourself informed and involved and have a Happy New Year!