Update on the National Alzheimer’s Project Act (NAPA)—Where are we now?

After hundreds of meetings, thousands of phone calls and e-mails, and several years of hard-pressed advocacy, the National Alzheimer’s Project Act (NAPA) was signed into law on January 4, 2011. With a unanimous vote from both the Senate and House of Representatives, the passing of NAPA marks one of the largest legislative milestones for the Alzheimer’s cause.

Now, there is only one question left to ask: “Where do we go from here?”

For those less familiar with NAPA, its enactment requires the creation of a national strategic plan to address the rapidly mounting Alzheimer’s crisis within the United States. More specifically, NAPA will implement an Advisory Council that will coordinate federal agencies conducting Alzheimer’s related care, services, and research and draw up annual recommendations to improve health and fi nancial outcomes for individuals and families through government programs.

With the first year mark rounding the corner, the Association’s involvement with NAPA is far from over. The Alzheimer’s Association has released Alzheimer’s From the Frontlines: Challenges a National Alzheimer’s Plan Must Address for the newly appointed Advisory Council. After hosting a nationwide public input campaign, information was gathered from over 43,000 Americans and addressed ten major challenges and policy recommendations to combat these issues:
  • A lack of public awareness.
    To quell misconceptions of Alzheimer’s and raise public sympathy and involvement, a nationwide Alzheimer’s awareness campaign should be launched.
  • A lack of public awareness.
    To quell misconceptions of Alzheimer’s and raise public sympathy and involvement, a nationwide Alzheimer’s awareness campaign should be launched.
  • Difficulties with diagnosis.
    Delays in detection and diagnosis leave many without vital information needed for preparing for a life with Alzheimer’s disease. Health care providers should be encouraged to improve detection and include an Alzheimer’s diagnosis in an individual’s primary medical record to create immediate, meaningful care planning.
  • Poor dementia care.
    Standards in quality dementia care should be created and implemented to avoid poor communication between allied health professionals, health care providers, and patients.
  • Inadequate treatments.
    Alzheimer’s must be identified as an unmet medical need by the Food and Drug Administration’s accelerated drug review process in order to create a treatment that actually alters the course of this terminal disease.
  • Specific challenges facing diverse communities.
    Federal effort should also focus toward incorporating specific objectives, strategies, and actions for diverse communities.
  • Specific challenges facing those with younger-onset Alzheimer’s.
    Because Alzheimer’s is believed to be a disease exclusive to the older population, the National Alzheimer’s Plan should prioritize an assessment of the size of this specific population and ensure full and equal access to all Alzheimer’s programs and supports.
  • Unprepared caregivers.
    To alleviate the burdens of caregiving, Alzheimer’s caregiver support services should be made available.
  • Ill-equipped communities.
    Medicare should expand adult day health services so communities can adequately provide support, especially in rural areas.
  • Mounting costs.
    Costs of caring for Alzheimer’s only accumulate over time; therefore, a major driver of costs should be addressed to federal and state governments.
— Heather Truettner
Manager, Public Policy & Communications