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What is an Advocate?
Alzheimer's advocates 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.
As an advocate, you will:
- Receive regular updates about current legislative and public policy issues.
- Stay on top of policy and legislative issues through alerts and updates.
- Make calls or write to legislators to forward public policy priorities to improve quality of life for those living with Alzheimer’s.
Join the Cause
The Alzheimer’s Association Greater Iowa Chapter invites you to become an Alzheimer's advocate. Join us and speak up for the needs and rights of people with Alzheimer’s disease and their families.
Add your voice to ours — become an advocate today.
Iowa Caucus Project
International and national spotlights will be on Iowa from now through February 1, 2016 for the Iowa Caucuses. This gives the Alzheimer’s Association a unique opportunity to demonstrate how thousands are affected by Alzheimer’s in Iowa alone, while demanding action from presidential candidates. In doing so, we will bring Alzheimer’s disease to the forefront of the healthcare debate and make it a key issue in the 2016 Road to the White House.
The Alzheimer’s Association has invested in field organizer, Emily Holley, to mobilize hundreds of volunteer advocates to attend candidate events, tell their story about how Alzheimer’s has affected their family, and ask the candidates what they will do, as president, to find a cure. If you would like to join the advocate team, contact Emily Holley at firstname.lastname@example.org.
>Learn more about the Caucus Project
Day at the Hill
Wednesday, March 23, 2016
First Floor Rotunda
Iowa State Capitol (map)
WEAR PURPLE FOR THE CAUSE
Use your VOICE to advocate for Iowans living with Alzheimer's and their families! This is an opportunity for Iowa advocates to join together and let policymakers know Alzheimer's disease priorities for Iowa are important for them!
- Online advocacy training provided
- Tell legislators your story and how Alzheimer's has affected you
- Legislators invited for coffee and conversation at our booth
- Registration is FREE but required. Indicate need for carpooling.
Check back in January for further details!
Advocacy is not just one day visiting our State Capitol. Visit your legislator at local events, make phone calls, send emails and letters to encourage them to support legislation that will positively impact the lives of those afflicted with this devastating disease.
Find your legislator here
Recent State Advocacy Successes
State of Iowa Advocacy Priorities
Ensure that training in dementia care is provided to all individuals employed in the delivery of care from home and community based services and in residential care settings
- Language in SF 505 passed in 2015, requires the Iowa Department on Aging to convene a task force to review dementia training requirements and to deliver its recommendations to the General Assembly by December 15, 2015. The Alzheimer’s Association will participate in this task force and advocate for full implementation of the Elements of Model Dementia Training. These elements were developed after conducting a literature review of evidence based dementia training research and the input from a workgroup of Alzheimer’s Association experts across the country. Additionally, the Association’s Dementia Practice Recommendations, supported by over 30 national organizations provided further guidance in developing training recommendations.
- Key Action: Support legislation or revisions in
administrative rules consistent with the Elements of Model Dementia Training.
Raise public awareness of the warning signs of Alzheimer’s disease and encourage early diagnosis.
- According to the
Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report,
there are 63,000 Iowans with Alzheimer’s disease. Less than 45% of those with the disease or
their caregiver are aware of the diagnosis and only 33% of people with a
diagnosis are aware they have it. In
Iowa, 9% of those aged 60 and over report they are experiencing worsening
confusion or memory loss, but 80% of them have not discussed with their health
care professional. Although Alzheimer’s disease is not treatable, early
diagnosis allows people with the disease to plan for their future, enroll in
clinical trials and utilize available services such as educational programming,
support groups, information and referrals.
Additionally, almost 200 Iowans provided input for the White House
Conference on Aging in June 2015 and reported that lack of education and access
to information is a leading barrier for the aging population. Iowans believe individuals are embarrassed or
afraid to seek assistance or simply do not know where to turn for help.
- Key Action: Appropriate $100,000 for a public awareness and education campaign about Alzheimer’s disease.
Provide financial relief to family caregivers and those with
- Nationally, the cost of caring for those with Alzheimer’s and other dementias is estimated at $226 billion and is expected to increase to $1.1 trillion in 2050. In Iowa, caregivers of people with dementia provide 152 million hours of unpaid care valued at $1.8 billion. Eighty-five percent of unpaid caregivers are family members, such as a spouse, adult children or grandchildren. Many caregivers of people with Alzheimer’s reported making major changes to their work schedules because of caregiving responsibilities, including reducing work hours or quitting their job.
- Key Action: Explore options for income tax
credits and/or an expansion of paid family and medical leave for
Ensure that Iowa’s public health system dementia-capable.
- Programs and services provided by public health agencies must be tailored to the unique needs of people with Alzheimer’s disease or other dementias and their caregivers. The Iowa Department of Public Heath (IDPH) should lead efforts to educate the state’s public health entities about Alzheimer’s disease and other dementias and ensure they are responsive to the needs of 63,000 Iowans with Alzheimer’s.
- Key Action: The
Alzheimer’s Association encourages IDPH to utilize results from Cognitive
Decline Module and Caregiver Module in the annual Behavioral Risk Factor
Surveillance System (BRFSS) to educate public health agencies about Alzheimer’s
- >View the full 2015 Iowa Public Policy Priorities here
For more information in Illinois public policy events, please visit the Greater Illinois Chapter Advocacy page.
For more information on Illinois public policy issues and updates, please visit the Greater Illinois Chapter Advocacy page.
Read the 2015 Illinois Public Policy Priorities Here
28th Annual Alzheimer's Advocacy Forum
April 4-6, 2016
Join the Iowa delegation in Washington, D.C., as we put a spotlight on the disease and compel our policymakers to engage in the fight. Face the facts: it's time to take action against Alzheimer's.
Check back soon for more information on the 2016 Alzheimer's Advocacy Forum!
THANK YOU for your support of the Alzheimer's Accountability Act!
Because of actions from Alzheimer's advocates like you here in Iowa and across the nation, Congress has included the Alzheimer's Accountability Act in its 2015 omnibus funding bill. Because of this action, Congress will be equipped with the best information to determine necessary Alzheimer’s research funding levels in each year leading up to 2025 to achieve the primary goal of the National Plan to Address Alzheimer’s Disease, creating a means to prevent and effectively treat Alzheimer’s disease. THANK YOU for your support!
Update on the HOPE for Alzheimer's Act (S. 857/ H.R. 1559)
The HOPE for Alzheimer's Act (S.857/H.R. 1559) continues to collect bipartisan support this Congress. We are pleased to report that HOPE now stands at 211 cosponsors in the House of Representatives, with another 32 cosponsors in the Senate. Thank you to all who continue to advocate on the importance of this legislation.
Record $122 million increase for Alzheimer's disease signed into law
At the urging of the Alzheimer's Association and its more than 600,000 advocates, the funding bill signed into law on January 17, 2014, by President Obama contained an unprecedented $122 million increase for Alzheimer's research, education, outreach, and caregiver support.
Read full press release here
National Plan to Address Alzheimer's Disease
On May 15, 2012, the first ever National Plan to Address Alzheimer's Disease was released by the Administration with the important goal of preventing and effectively treating Alzheimer's by 2025. Your efforts got us here. You signed the petition, advocated on Capitol Hill, and told officials that Alzheimer's couldn't wait. Your voices were heard. Thank you!
View the National Alzheimer's Plan video here
Read the National Alzheimer's Plan here
1. Increase the commitment to Alzheimer's research
-- Call your members of congress and ask for increased funding
2. Improve access to diagnosis and care planning
-- View information about the HOPE for Alzheimer's act below
Read the 2014 Federal Public Policy Priorities here
View and download Federal Public Policy Priorities visual aid here
Alzheimer's Accountability Act
The Alzheimer's Accountability Act (H.R. 4351/S. 2192) represents a bipartisan effort to ensure that Congress is equipped with the best possible information to set funding priorities and reach the goal of the National Plan to Address Alzheimer's Disease to prevent and effectively treat Alzheimer's by 2025.
Congress passes Alzheimer's Accountability Act (H.R. 4351/S. 2192)
As the largest Alzheimer’s advocacy organization in the world, the Alzheimer’s Association, and its relentless advocates, applaud Congress for creating a formal process to ensure that scientific judgment will guide them in future Alzheimer’s research funding decisions. This critical provision comes from the Alzheimer’s Accountability Act (H.R. 4351/S. 2192), which was fully incorporated within the fiscal year 2015 funding bill signed into law by the President. Because of this action, Congress will be equipped with the best information to determine necessary Alzheimer’s research funding levels in each year leading up to 2025 to achieve the primary goal of the National Plan to Address Alzheimer’s Disease, creating a means to prevent and effectively treat Alzheimer’s disease.
View the Alzheimer's Accountability Video here
View the Alzheimer's Accountability Act fact sheet here
HOPE for Alzheimer's Act
The Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act (S.709/H.R.1507), was introduced to improve diagnosis of Alzheimer's disease and increase access to information on care and support for newly diagnosed individuals and their families - providing essential support for those facing this devastating, debilitating disease.
View the HOPE for Alzheimer's Act video here
View the HOPE for Alzheimer's Act fact sheet here
- Advocate Guide - This document is a guide to advocates who attended our Alzheimer's Advocacy Forum, but it also serves as a great resource for new advocates.
- Collateral/Visual Aid - This document provides a graphical view of the need for Alzheimer's research funding. It is intended to be shown to elected officials during in-person meetings.
The Economics of Alzheimer's Disease
To help you better communicate with elected officials about the critical need for additional resources for Alzheimer's research, the Alzheimer's Association has developed a handout document (and a Spanish language version) emphasizing our key message, "Alzheimer's is the costliest disease in America and is set to increase like no other."
View The Economics of Alzheimer's Disease video here
View The Economics of Alzheimer's Disease handout here
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