The Alzheimer’s Association--Southwest Missouri Chapter invites you to become an Alzheimer advocate. Join us and speak up for the needs and rights of people with Alzheimer’s disease and their families.
WE NEED YOUR INPUT!
Building on the Alzheimer’s Association’s commitment to provide platforms of engagement for those directly affected by Alzheimer’s disease, the Association’s Southwest Missouri Chapter is requesting public input and perspectives of stakeholders in the Alzheimer’s community about what a National Alzheimer’s Plan should include. Recommendations and comments expressed will be collected, analyzed and presented to officials from the U.S. Department of Health and Human Services, the agency responsible for creating a national plan that will address the rapidly escalating Alzheimer’s crisis and coordinate federal government efforts.
Please submit your input regarding The National Alzheimer’s Project Act (NAPA) to Angel King, Program Director at email@example.com.
The National Alzheimer’s Project Act (Public Law 111-375) was passed unanimously by both houses of Congress and signed into law by President Obama on January 4, 2011.
The law will create a national strategic plan to address the rapidly escalating Alzheimer’s crisis and will coordinate Alzheimer’s disease efforts across the federal government.
This national strategic framework will include outcome-driven objectives, recommendations, implementation steps and accountability in the fight to overcome Alzheimer’s.
What does the law require?
An annually updated national plan submitted to Congress on how to overcome Alzheimer’s.
Annual recommendations for priority actions to both improve health outcomes for individuals with Alzheimer’s and lower costs to families and government programs.
The annual evaluation of all federally funded efforts in Alzheimer’s research, care, and services along with their outcomes.
The creation of an Advisory Council on Alzheimer’s Research, Care, and Services
What will the Advisory Council do?
Coordinate federal agencies conducting Alzheimer‘s related care, services and research.
Allow participation in the evaluation and strategic planning process by patient advocates, health care providers, state health departments, Alzheimer’s researchers and health associations.
For too many individuals with Alzheimer’s and their families, the system has failed them and today we are unnecessarily losing the battle against this devastating disease. The government must make a meaningful commitment to overcome Alzheimer’s.
Alzheimer’s is the 6th leading cause of death in the United States and is the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression.
By making Alzheimer’s a national priority, we have the potential to create the same success that has been demonstrated in the fights against other diseases. Leadership from the Federal Government has helped lower the number of deaths from other major diseases such as HIV/AIDS, influenza and pneumonia, and stroke.
Below are several topics and questions that the Association feels are of top importance to the Alzheimer’s community. Please feel free to address these specific questions or submit questions or comments you feel are relevant to this topic.
Research, treatment or therapies:
What could help improve detection and diagnosis?
What treatments or therapies do you have access to? What do you not have access to that would be helpful to you?
How do you feel about current research funding? What research can be improved or expanded?
Example: “I tried to get into a clinical trial and I was too young. It would have helped if…”
Connecting with health care:
What could help improve doctor visits?
What could a doctor do to help someone diagnosed with Alzheimer’s and his/her family?
What kind barriers do you find in the healthcare system? What would help you overcome those barriers?
Example: “After my diagnosis, my doctor gave me information on where to go for…”
Long-term support and care:
What could help improve the long-term support and care you receive?
What planning tools work or don’t work in caregiving? How should we expand or improve them?
Example: “It would help someone diagnosed with Alzheimer’s to stay at home longer if…”
Government / Community programs:
What kind of government-sponsored programs have you used that work well, and how should they be expanded?
What kind of government-sponsored programs have not worked well and how can they be improved?
Are there other community resources that were helpful? What are they and how did they help?
Example: “I went to the <xxx agency > and found <program name> works / doesn’t work because…
Awareness of Alzheimer’s disease:
What could help address stigma around Alzheimer’s disease?
What could help address cultural or language barriers to help those affected by Alzheimer’s disease?
How aware are people or healthcare providers of young-onset Alzheimer’s?
Example: “My healthcare provider does not know about young-onset Alzheimer’s. It would help if s/he knew…”
For more information about
Alzheimer 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:
If you would like to be added to our advocacy list, click here.