The Dementia Action Alliance

The United States is facing unprecedented growth in the number of people living with dementia. Currently there are approximately 6.8 million Americans – one in eight individuals age 65 and older – living with dementia. This number will grow at an alarming rate as the baby boom generation reaches older adulthood. Providing services and supports for people who have dementia cost the U.S. approximately $200 billion in 2012; $140 billion of which was paid by federal and state governments through Medicare and Medicaid. A recent article in the New England Journal of Medicine reported that dementia costs now exceed those for cancer or heart disease. Additionally, an estimated 15.2 million family and friends provide 17.4 billion hours of unpaid care to people who have dementia annually valued at $210.5 billion.

While there currently is no cure for dementia and treatment options are limited and vary in effectiveness, there are care practices – person-centered dementia care – that can greatly enhance the quality of life for people who are living with dementia and those who care about them.  Unfortunately, person-centered dementia care practices are not widely and uniformly used despite the fact that they are easy to do, cost nothing extra and have been found to have significant benefits both for the person who has dementia as well as their care partners.  Besides a better quality of life, person-centered dementia care can reduce some of the high costs associated with inexpert dementia care such as the over utilization of anti-psychotic medications.

The Dementia Action Alliance: A People’s Movement

While there are many entities focused on the CURE and TREATMENT of Alzheimer’s, there are none devoted to DEMENTIA CARE.   To address this gap, Four  national organizations with person-centered care at the core of their missions,  CCAL-Advancing Person-Centered Living, The Eden Alternative, Planetree and AMDA – the Society for Post Acute and Long-term Care,  launched the Dementia Action Alliance and serve as its Leadership Team.  This national initiative is coalescing a people’s movement of individuals, organizations, and communities across the country for collective impact.  The Dementia Action Alliance’s motto – A Nation Joined Will Make a Difference – recognizes that it will take the collective energies and voices of many to impact change  and  make person-centered dementia care practices the norm of care in the U.S.

Our Goals and Objectives

The overarching goal of the Dementia Action Alliance is to help People Live Fully with Dementia.

Our current objectives are to:

  • Increase awareness about dementia care issues plaguing our country.
  • Invite the engagement and involvement of people living with dementia, their care partners, and other advocates through a national Network.
  • Inform NAPA Advisory Council members, federal policymakers, and other key stakeholders about the needs and preferences of people living with dementia and those who care about them.
  • Advocate for rebalancing NAPA’s “cure and treatment” priorities to include a better balance on the “care” needs of individuals living with dementia. 

CCAL’s Call to Action for Dementia Care

In January 2011 President Obama signed the National Alzheimer’s Project Act (NAPA) into law.  One provision of the law was the creation of a national Advisory Council to inform and shape federal policies and activities for Alzheimer’s disease.  CCAL and many other dementia care experts around the country became concerned about the orientation of NAPA and the direction the Advisory Council was taking.  Specifically, the concerns are:

  1. That NAPA is too narrowly focused on Alzheimer’s disease and not more globally on dementia as is every other country in the world.
  2. There is too great a focus and expenditure of funds on the “cure” and too little on the “care” for the 6.8 million Americans currently living with dementia.
  3. NAPA is silent on what is considered the gold standard of care  – person-centered practices.

While it is critically important to find a cure and treatment for Alzheimer’s disease, the importance of meeting the care needs of people currently living with dementia cannot be diminished.  The U.S. is the only country in the world focused specifically on Alzheimer’s disease rather than the broader category of dementia leaving people living with other types of dementia such as vascular or Lewy Body disease among other dementias feeling their needs are not being addressed.

These issues as well as concern over the quality of dementia care in general catalyzed CCAL to convene a diverse group of dementia care experts to a meeting in Washington, DC in June 2012 to form consensus about what is needed for quality dementia care in this country.  This effort, known as the Dementia Initiative, published a seminal white paper in early 2013 titled, “Dementia Care: The Quality Chasm,” that details the conceptual framework for person-centered dementia care.  The white paper represents consensus agreement about person-centered dementia care among many noted dementia care experts.