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Upcoming Events
Santa Cruz Advocacy Workshop:
August 14, 2014 | 5:00pm-7:00pm | Alzheimer's Association Santa Cruz Office, 1777-A Capitola Road, Santa Cruz, CA 95062
Join us for an update on our state and federal priorities, and learn how to use your personal story to become an effective advocate for a world without Alzheimer's. RSVP to Jessica Rothhaar, jrothhaar@alz.org or 800-272-3900.
Nevada Town Hall Meeting:
August 20, 2014 | 10:00am-12:00pm | Alzheimer's Association Northern Nevada Office, 1301 Cordone Ave., Reno, NV 89502
Join the Alzheimer's Association for a Town Hall meeting with state and federal elected officials around the need to improve the quality and availability of dementia care in Nevada. RSVP to Jacob Harmon, jharmon@alz.org or 775-786-1920.
Nevada State Advocacy Day:
March 16, 2015 | Nevada State Capitol | Carson City
More information posted when available.
Contact: Jacob Harmon, jharmon@alz.org
National Advocacy Forum:
March 22-25, 2015 | Washington, D.C.
Gather with advocates from all fifty states to learn about and advocate with Members of Congress for a world without Alzheimer’s. The first two days of the Forum are spent learning from speakers including government officials and senior policy staffers. The last day of the Forum is spent meeting in teams with members of Congress and their staff, where we emphasize that Alzheimer's cannot wait. 2015 Forum registration information will be posted when available. A limited number of scholarships are available through the chapter to help offset travel expenses.
To apply, contact your Regional policy lead or jrothhaar@alz.org.
California State Advocacy Day:
April 29, 2015 | Sacramento
Each year in Sacramento the Alzheimer’s Association holds an Advocacy Day. This event is crucial to advancing our legislative efforts at the state level. Volunteer advocates from throughout California gather at the State Capitol and meet with members of the California legislature to ensure that our policy priorities are addressed. All are welcome to participate in this event, as there is no tool more powerful than your personal stories.
Registration information will be posted when available.
What We’re Working On
Federal Policy
Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead. For Medicare and Medicaid, treatments equal savings. In 2014 the total cost of Alzheimer’s will be $214 billion, including $150 billion to Medicare and Medicaid. Meanwhile, only 0.25% of this total has been committed to Alzheimer’s research, the only path to reducing this cost.
This is why we are advocating at the state and national levels for critical research funding to find a cure, and public policies to improve the quality of care for those with the disease and support for their caregivers.
>> Find out who represents you in Congress
>> Report your communication with legislators in AART
Our 2014 Federal Priorities:
- Increase the commitment to Alzheimer’s research
- To find out if your Member of Congress has written a letter of support for increasing FY2015 funding for Alzheimer’s research, see this list
- Ask your member of Congress to send a letter of support to the Appropriations Committee; sample letters can be found here for the House and Senate
- This handout provides a graphic view of the need for Alzheimer's research funding. It is useful for showing elected officals and their staff during in-person meetings.
- On July 8, 2014 Representative John Garamendi joined with Representatives Maxine Waters and Peter Roskam (IL) to address the financial and emotional impact of Alzheimer's disease and the need for greater research funding. Watch their full exchange here, which begins at approximately 1:49.00.
- Ensure accountability in the National Alzheimer’s Plan
- To find out if your Member of Congress has cosponsored the Alzheimer’s Accountability Act, view the list of current co-sponsors; you can view just the co-sponsors from your state by clicking on your state's name on the left of the page.
- Click here to ask your Member of Congress to cosponsor the Alzheimer’s Accountability Act
- Improve access to diagnosis and care planning (HOPE for Alzheimer’s Act)
- To find out if your Member of Congress has cosponsored the HOPE Act, view the list of current co-sponsors in the House and Senate
- Click here to ask your member of Congress to cosponsor the HOPE Act
State Policy
To achieve meaningful progress, states must tackle Alzheimer's not only as an aging issue, but also as a public health crisis. Alzheimer's disease is a pivotal public health battle, and state governments stand on the front line. The Alzheimer's Association calls on state policymakers to take bold action to confront this epidemic, focusing on four key priorities:
California
>> Find out who represents you in the California Legislature
Alzheimer’s disease is now the fifth leading cause of death in California. By 2030, the number of Californians over the age of 55 living with Alzheimer’s disease will double to 1.1 million. Due to a rapidly aging population, the increase will be even more dramatic among California’s Asians and Latinos, who will see a tripling in those affected by 2030. While death from other chronic diseases is declining, death rates from Alzheimer’s have risen 146 percent since 2000. Read the state fact sheet here.
California’s five Alzheimer’s Association chapters work together to advance statewide public policy goals through the California Council. In 2014, the Association’s California policy priorities are:
- State Plan: In 2011, the Alzheimer’s Association and California Department of Health and Human Services released the California State Plan for Alzheimer’s Disease, which includes recommendations to California policymakers to help California prepare for the coming Alzheimer’s epidemic and improve conditions for people with the disease and their families.
- The components of the State Plan are continuously reviewed by the California Council, and our California legislative priorities are guided by the plan’s key recommendations.
- Uniform adult guardianship legislation: In 2014, we are working to pass Senate Bill 940, the California Conservatorship Jurisdiction Act, a version of the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). SB940 is sponsored by the California Law Revision Commission; there is no known opposition.
- Improve dementia training: In 2014, we are working to pass Assembly Bill 1570 to improve the quality of care provided in Residential Care Facilities for the Elderly (including nursing homes, assisted living facilities and board and care homes), by requiring more dementia-specific training for all direct care staff. AB1570 is sponsored by LeadingAge California, the largest association of nonprofit RCFEs in California.
- Provide Affordable Options to Live With Dignity in the Community: In 2014, we are working to pass Assembly Bill 1552 to extend the Community-Based Adult Services (CBAS) program and ensure that thousands of frail Californians can continue to access adult day health care services. AB1552 is sponsored by the California Association of Adult Day Services; there is no known opposition.
- Coordinated Care Initiative or Cal MediConnect: In 2014, we are working closely with the California Health and Human Services Agency to ensure that every managed care plan participating in Cal MediConnect has at least one care coordination staff trained in dementia care management.
Nevada
>> Find out who represents you in the Nevada Legislature
In Nevada, an estimated 37,000 people are living with Alzheimer's disease. More than 137,000 Nevada caregivers provided unpaid care to someone with Alzheimer's or another dementia valued at over $1.9 billion. Between 2014 and 2025 the number of Nevadans with Alzheimer's disease is expected to increase by 73%. Read the state fact sheet here.
- State Plan: In 2013, the Nevada Legislative Committee on Health Care released the Nevada State Plan to Address Alzheimer’s Disease, which includes 21 recommendations to Nevada policymakers to help Nevda prepare for the coming Alzheimer’s epidemic and improve conditions for people with the disease and their families. A state Task Force on Alzheimer’s Disease is currently meeting to discuss options for implementing those recommendations; for notice of upcoming meetings see http://www.nvaging.net/boards-commissions/TFAD/home.htm.
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Facts and Figures
More than 5 million Americans live with Alzheimer's disease, the nation's sixth leading cause of death. Of these, two-thirds are women. Read more about the facts and figures here.
Data on Alzheimer's in your state and county
The Alzheimer's Association compiles national and state-level data based on vital statistics and finance data; this year's report is available here. State data can be found on page 20 of this report. This data shows that, between 2014 and 2025, every state and region across the country is expected to experiene double-digit percentage increases in the number of people with Alzheimer's due to increases in the proportion of the population age 65 and older.
California developed county-level data in 2009 that should still be valid, which you can quote for policy needs; this is available here. Scroll down and click on Individual County Data.
You can also estimate the number of people in your county with Alzheimer's by using the 2010 US Census data on the number of people in your county 65+. Start by selecting your state on the map, then select your county at the top left, then click Browse Data Sets at the top right, then select Demographic Profile. Scroll down to see the total number of residents 65+. Coupled with the fact that 1 in 9 Americans 65+ has Alzheimer’s, this will give you a rough estimate of the number of people with the disease in your county.
Volunteer to advocate for a world without Alzheimer's
What does an advocacy volunteer do?
By becoming an advocacy volunteer, you can play a vital role in our efforts to strengthen federal, state and local policy makers’ commitment to end this devastating disease. Advocacy volunteers play an important role in improving the quality of care and quality of life for people with Alzheimer’s disease and their families by working to improve dementia care and services; improve access to community-based care; improve quality care in residential settings; and expand funding for research and public programs serving people with dementia.
Listen to what our advocacy volunteers have to say about their experiences participating in advocacy activities:
Most of our regional offices have Policy Committees, teams of volunteer advocates who advise and support regional staff in advocating for local, state and national policy priorities.
Alzheimer’s Legislative Teams and Ambassadors are grassroots volunteers selected to serve as the Association’s primary messengers for their member of Congress. They work directly with Chapter staff to build relationships with their Member of Congress through personal contacts, meetings and other activities.
Learn more about the Alzheimer's Association Ambassador Program
>> Read blog posts by Karen, one of our Advocacy volunteers.
>> Read blog posts by Sherrie, one of our Advocacy volunteers.
Early Stage Involvement:
Individuals in the early stage of Alzheimer's disease are among our most powerful, influential advocates. A person who is living with Alzheimer's and chooses to raise their voice against the disease not only sends a powerful message to legislators at the state and federal level, but helps remove stigma and negative assumptions associated with Alzheimer's disease.
If you are interested in becoming an advocacy volunteer, please contact Jessica Rothhaar at jrothhaar@alz.org or 650-623-3192.
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