Dementia Action Alliance

Dementia Action Alliance post page

By Corrie PhillipsDecember 30th, 2018

Dementia Action Alliance

A Nation Joined Will Make a Difference

Person-Centered Matters

This public service video produced by the Dementia Action Alliance with a grant from the Commonwealth of Virginia shares the gold standard of care for anyone living with dementia, including Alzheimer's.  This video intended for care-givers, shows the postive results when person-centered practices are used in the home and in care facilities.  Listern to a geriatrician, a social worker, and families as they underline the importance and benefits of a person centered approach to care.  This is the long version directors cut of this public service announcement.

For more information or to be added to the DAA community list email Jackie Pinkowitz.

DAA Background

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.

To address this national crisis, the National Alzheimer’s Project Act (NAPA) was signed into federal law in 2011.  The provisions of the law and the efforts of the law’s mandated Advisory Council are having some positive impact upon research funding to find a CURE and TREATMENTS for Alzheimer’s disease.  Little progress is being made, however, on the CARE aspects of dementia.

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, CCAL-Advancing Person-Centered Living, Planetree,  The Eden Alternative, and AMDA; the Society for Post-Acute & Long-Term Care Medicine launched the Dementia Action Alliance.  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.

DAA Concerns

The toll dementia places on society is rapidly increasing. In just 11 years it is estimated that there will be a 40 percent increase of people living with dementia (from 6.8 million to approximately 9.5 million individuals). There are no cures or effective treatments for dementia unlike the other top ten causes of death in the U.S. U.S. spending for dementia research and care, however, is disproportionately low compared to other societal health conditions.

For Instance, HIV/AIDS, a comparative health condition to dementia, has cure, treatment and care components and requires an infrastructure of care support to manage the condition. HIV/AIDS has effective treatments for individuals affected – dementia does not. There are six times the number of people living with dementia in the U.S. (1.1 million Americans with HIV/AIDS and 6.8 million with dementia), yet the US budget for HIV/AIDS for 2014 is $23.2 billion compared to $600 million for dementia.

There are no national or state infrastructures in the U.S. to address dementia which hampers the ability to make progress. The U.S. does not have any senior health official dedicated to dementia despite the increasingly rapid growth of the condition and the enormous cost to society.

Japan’s health ministry, for example, is forming teams of dementia experts for every municipality in the country to provide intensive support for people who are living with dementia. 
The prime minister of the UK recently convened a G8 Dementia Summit.  The UK has created a position for a high ranking health official who is focused on dementia.

The U.S., unlike other countries, is focused on Alzheimer’s disease (AD) which overlooks a large portion of Americans with other forms of dementia.The size of the overlooked dementia population exceeds the total U.S. population of Americans living with HIV/AIDS.

Accomplishments to Date

  • The Dementia Action Alliance has coalesced over 300 individual and organizational Collaborators.
  • Convened a national group of diverse dementia care thought leaders in 2012 to discuss and form consensus about issues related to dementia care.
  • Published white paper of consensus agreement in January 2013. Dementia Care: The Quality Chasm.
  • American Society on Aging’s Fall 2013 edition of Generations published an article based on white paper.
  • Received a grant from the Commonwealth of Virginia to produce and test a public service video announcement about person-centered dementia care to raise awareness and change perceptions about dementia.
  • Received a grant from the Retirement Research Foundation to conduct a national survey of Americans to identify their needs and priorities about dementia.

Next Steps

  • Work to rebalance NAPA’s focus to better include CARE components as informed by people who are living with dementia, their care partners and other dementia care experts.
  • Work to widely disseminate the public service video announcement – “Person-Centered Dementia Care Matters.”
  • Hold meetings with strategic federal agencies and organizations to apprise them of what matters most to Americans about dementia and begin discussions about how to best address them.
  • Work to have input and impact on the National Quality Forum’s work on measures for person-centered care and dementia.
TEEPA RECOMMENDS that all professionals and advocates of those living with dementia get connected and involved with this national movement.  For more information or to be added to the DAA community please email Jackie Pinkowitz. 

Leave a Reply

Your email address will not be published. Required fields are marked *