Looking At the Future of Alzheimer’s disease Policy
Author: David Hoffman
It is time to engage public health in aggressive efforts to address Alzheimer’s disease and other dementias (AD/D) without delay.
As I noted in Health Affairs in April 2014, numerous U.S. states are already taking some action. Since then an additional 12 states, for a total of 40 states, have developed state plans to address AD/D. Most are already published, with a few in development or being scheduled for updating.
Public policy statements at all levels call for coordination of resources, better communication, awareness, and essential linkages. Now to achieve the outcomes envisioned in these plans and policies, further action is urgently required.
I concluded the April 2014 paper by calling for a robust effort moving forward, defining effective public policy as “policy that is appropriately scaled to address the issue or problem at hand,” and “seeing our way clear to identify the scale of resources necessary to address Alzheimer’s disease – the public health priority for today and tomorrow.” That robust effort is more critically needed than ever.
Burden And Costs Of Alzheimer’s Disease
Alzheimer’s disease is a terminal degenerative disease that usually begins gradually, causing a person to forget recent events or familiar tasks. Progression varies from person to person, but the brain disease eventually causes confusion, personality and behavior changes, and impaired judgment. Eventually, people with AD/D become unable to care for themselves. There is currently no cure for AD/D, but as researchers are investigating prevention and cure options, there are steps that can be taken to help maintain quality of life for the person with AD/D and to prevent negative health and financial consequences for their caregivers.
With the aging of the baby boom generation it is estimated that the United States is facing 13.5 million cases of AD/D by 2050, compared to an estimated 5.1 million today. This disease affects entire families, as family members are likely to be caregivers providing direct care or financial support. Every caregiver experiences additional stress of many types on many levels, enhanced risk for an array of chronic conditions, risk of family strife, financial strain, pressure at work, and risk of behavioral health complications.
In addition to caregiver strain, this disease is more financially costly than cancer or heart disease – in 2010, the cost of medical and informal care of dementia was $215 billion in 2010. In Health Affairs, Julie Bynum estimated these costs will exceed $1.1 trillion in 2040.
The importance of understanding cognition starts long before the diagnosis of AD/D. Three recent articles reported on data from the Behavioral Risk Factor Surveillance System (BRFSS) that underscore the important role of public health in this growing crisis. These articles focus on perceptions about cognitive decline and its effects on daily functioning. These recent examples point to the importance of addressing AD/D with the highest priority.
In the following sections, I provide an update to my April 2014 Health Affairs paper on the current international and domestic policy efforts in place to address AD/D.
Recent international and national efforts have recognized the public health importance of Alzheimer’s disease illustrating that it is time to engage in aggressive efforts to address this condition without delay.
In January 2011 President Obama signed into law the National Alzheimer’s Project Act. This groundbreaking law called for a National Advisory Council on Alzheimer ’s disease Research, Care, and Services, which resulted in development of the first National Plan to Address Alzheimer’s Disease in 2012.
A new National Plan is published each year by the Department of Health and Human Services. The Centers for Disease Control and Prevention (CDC), along with numerous national and state partners, developed a series of public health road maps (i.e. the 2013 Road Map focuses on state and local actions in the United States).
In 2012, the World Health Organization (WHO) identified dementia as a Public Health Priority. These documents all call for a level of effort far beyond what we currently see and contain laudable goals (i.e. The National Plan calls for effective prevention or treatment of AD/D by 2025). Hopefully our experience in New York State, where I serve as Bureau Director at the Department of Health, can help inform this process in other states and at the national level.
New York State Initiative
New York State has a long history along this road and has also taken recent policy steps. These include:
• biennial publication of consensus recommendations of the State Coordinating Council;
• conducting BRFSS modules for cognitive impairment and caregivers most years in this decade;
• developing a continuing medical education (CME) opportunity on AD policy issues;
• a 2012 educational letter from the State Health Commissioner to all providers on the benefits and value of early detection highlighting research and known benefits to families;
• and since 1988 the state has evolved to include two evidence-based funded programs, one focused on provider education and diagnosis and one on caregiver education and support.
Most recently, in his 2015-16 Executive Budget, Governor Andrew Cuomo proposed the largest single state initiative ever to support people with AD/D and their caregivers. This $25 million multi-pronged effort, now part of the approved New York State Budget, can serve as a model as we move forward of reaching a meaningful scale.
Statewide services will expand to serve significantly more people in more communities than ever before (previous efforts were funded at $2 million annually). These services will include:
caregiver consultation, education, and support;
early detection and management of co-occurring conditions;
comprehensive advance planning;
professional and provider education;
increased public awareness;
comprehensive program evaluation;
focus on health of the person with AD/D and their caregivers;
quality improvement including reducing unnecessary emergency visits and hospitalizations;
and coordination to enhance impact and reduce any duplication.
The New York State Department of Health has announced two major funding initiatives to support these efforts. We are committed to implementing this initiative in the most impactful way to benefit people in every corner of our state; we are also committed to evaluating this project and sharing our results so the public health community can effectively mobilize in other states and nationally to meet this urgent need.
Why We Must Take Action Now
Public Health, aging services, and human service systems all have some initiatives in place to address AD/D; none are of the magnitude necessary to address the scale of the challenge for people with AD/D and their caregivers today.
These efforts focus on the key areas that must be addressed: caregiver support and education; early detection and comprehensive planning; professional and provider education, public awareness; better surveillance and data collection; focus on health of the person with AD/D and their caregivers; and quality improvement in all systems to increase high value/high impact services and avoid unnecessary and sometimes harmful services.
An important related priority is prevention, and the need for better answers to questions about primary and secondary prevention.
We have growing bodies of evidence about what works and what is important, and in most areas stagnant resources to implement what we have learned. Today in communities across America families and other caregivers struggle to meet the needs of millions of people who no longer can be responsible for their own daily needs. The lists of action items in the Annual National Plan to Address Alzheimer’s Disease, Public Health Roadmap, and many state plans are the place to start to address these needs.
As noted in 2014, not surprisingly, there is significant consistency in the recommended actions. While many states have efforts underway to implement recommendations, rarely are these efforts seen on a scale that can have impact statewide, or to the depth necessary to reach the large number of families in need. The New York example builds on the policy statements mentioned here, grows from a historical perspective, focuses on evidence-based and evidenced-informed approaches, considers the sage advice of experts including caregivers, engages multi-sector approaches, and has the potential to reach the scale needed for statewide change.
With the increasing prevalence, as well as the growing burden both emotionally and financially for the patient, caregiver, and all others involved, AD/D is taking a toll on people and communities that defies measure. The acknowledgement of AD/D issues in state plans, the Public Health Roadmap, National Plan, and WHO documents are all steps in the right direction.
These policy documents are now being followed by some resource allocations such as the New York experience and increasing resources at National Institutes of Health and some other federal agencies at the national level. More than a year after the release of the April 2014 Health Affairs issue focused on AD/D, we are beginning to clear the path necessary to identify and utilize the scale of resources necessary to address AD/D – the public health priority for today and tomorrow.