Current Issues and Initiatives in Alzheimer s Research and Services Carroll Rodriguez VP Public Policy and Communications Alzheimer s Association St. Louis Chapter 1 Disclosure I have no relevant financial relationships to disclose 2 The Need to Address Alzheimer s For millions of Americans, the heartbreak of watching a loved one struggle with Alzheimer s disease is a pain they know all too well. Alzheimer s disease burdens an increasing number of our Nation s elders and their families, and it is essential that we confront the challenge it poses to public health. President Barack Obama NAPA Vision Statement, National Plan to Address Alzheimer s Disease, US Department of Health & Human Services, 2011 3 1
NAPA: National Alzheimer s Project Act Passed unanimously by both houses of Congress Signed into law by President Obama on January 4, 2011 Creates a national strategic plan to address the escalating Alzheimer s crisis 4 Challenges: Voices across the Nation Lack of public awareness & stigma Insufficient research funding Low rates of diagnosis Poor post-diagnostic care Inadequate treatments Unprepared caregivers Ill-equipped communities Mounting costs Alzheimer s From the Front Lines: Challenges a National Alzheimer s Plan Must Address, Alzheimer s Association 2011 5 National Plan to Address Alzheimer s Disease Prevent & effectively treat by 2025 Enhance care quality & efficiency Expand supports for people with AD & their families Enhance public awareness and engagement Improve data to track progress 6 2
Alzheimer s is Causing a Strain on the American Economy 7 Alzheimer s Research is Heavily Unfunded 8 NIH Research Funding, 2014 In Millions of Dollars 9 3
Alzheimer s Deaths Continue to Increase; Deaths from Other Major Diseases Decrease 10 Alzheimer s Prevention Initiatives ADAD: Autosomal Dominant Alzheimer s Disease Colombia Largest single kindred with familial Alzheimer s Partnering with Genentech ApoE Trial Two Copies of Risk Gene 1,300 adults, age 60-75 Partnering with Novartis 11 Alzheimer s prevention initiatives Dominantly Inherited Alzheimer Network Trial: (DIAN TU) Knight ADRC with international sites Individuals genetic mutation for autosomal-dominant Alzheimer's disease Study of 2 potential disease modifying therapies Anti-Amyloid in Asymptomatic Alzheimer s (A4) Study 1,000 clinically normal people, Age 65+ Elevated Amyloid PET Partnership with Eli Lilly 12 4
Alzheimer s Accountability Act AAA requires NIH to create annual budgets that call for what s needed each year to reach the National Alzheimer s Plan s 2025 goal NIH to submit this Alzheimer s budget directly to Congress and the President 13 The Healthy Brain Initiative The Public Health Road Map for State and National Partnerships Identifies the role state and local public health agencies and partners can play in: promoting cognitive functioning addressing cognitive impairment and Alzheimer s disease helping meet the needs of caregivers 14 BRFSS in Missouri Cognitive Decline Module 4000 households surveyed in 2012 12% - nearly 1 in 8 of those 45 and over reported that they are experiencing memory loss that is happening more often or getting worse 15 5
Behavioral Risk Factor Surveillance System Missouri (2012) 16 Why early detection and diagnosis Diagnosis empowers people with Alzheimer s disease and their families to take action Other benefits of early diagnosis include: Optimize current medical management Relief gained from better understanding of symptoms Maximize decision-making autonomy Access medical & community services Reduce risk of excess disability Plan for the future Improve clinical outcomes Avoid or reduce future costs Alzheimer s Disease International World Alzheimer Report 2011 17 Medicare Annual Wellness Visit For the first time, detection of cognitive impairment is core feature of the wellness exam No guidance regarding what screening tools to use or what to do if patient fails screening 18 6
HOPE for Alzheimer's Act Health Outcomes, Planning, and Education H.R.1559 and S.857 Provide Medicare coverage for comprehensive care planning services following diagnosis Service is for both the diagnosed individuals and caregiver Documentation of care planning in medical record 19 Cognitive Implementing Assessment the Public Toolkit Health Road all Map tools in one document at alz.org/hcps 20 New Alzheimer s Disease Pocketcard app New Alzheimer's Disease Pocketcard app puts reliable information and assessment tools at your fingertips alz.org professionals 21 7
Referrals to St. Louis Chapter Direct Connect Fast Fax 24/7 Helpline call based on your direction (emergency or within 2 weeks) Care Consultation scheduled to assist with future planning Patient's care plan can be sent to you upon request and with permission from the patient / family 22 Support and Services 24/7 Helpline Care Consultations Support Groups Education Safety Services Respite Assistance Early Stage Programs 23 Respite Assistance Up to $500 annually to support respite for care partners Person with dementia must live at home with the care partner Consumer choice model Home care services, adult day, products, or short-term respite residential care Funded by Department of Health and Senior Services 24 8
Early Stage Programs Project Esteem Meet Up Let s Talk Cardinal s Reminiscence League - Toolkit 25 Online classes through Caregiver Center Professionals: essentiaalz Families: CARES Know the 10 Signs Basics Living with Alzheimer s, for people with dementia Living with Alzheimer's, for caregivers Early Middle Late 26 Healthy Habits for a Healthier You Learn what research tells us about healthy aging and the influence of: Diet and nutrition Physical health and exercise Cognitive stimulation Social interaction Develop a plan for incorporating healthy habits into your life to optimize your physical and cognitive health as you 27 9
Celebrate Alzheimer s & Brain Awareness Month Visit alz.org/stl Sign up for e-news Sign up to be an advocate Take the Purple Pledge Honor a caregiver on the Longest Day June 21, 2015 28 800.272.3900 Alz.org/stl 29 10