NADSA Participates in 2014 Dementia Thought Leaders Invitational Summit

Group Photo

Rohini Khillan, Office of Disability, Aging & LTC Policy, ASPE, Washington, DC; Elia Femia, PhD, Penn State University; and Teresa Johnson, MBA, NADSA Managing Director.

NADSA Managing Director Teresa Johnson, MBA, participated with dementia thought leaders from across the United States for the second Dementia Thought Leaders Invitational Summit in Washington, DC, on June 8, 2014, convened by the Dementia Action Alliance (DAA). The Dementia Action Alliance (DAA) was formed in 2012 to make person-centered dementia care practices the norm and not the exception of care in the U.S.  The purpose of the Summit was to address and form consensus recommendations on what is needed to effect such change.

Participants included a broad spectrum of persons living with dementia, care partners, advocates, healthcare practitioners, long-term services and support providers, researchers, and policymakers among others. The day-long Summit formed consensus on an initial framework of strategies to optimize the physical, emotional, and spiritual well-being of people living with dementia, as well as their care partners. Participants also strategized ways to make person-centered dementia care of consistent high quality across settings.

Summit participants agreed that the overarching goal was to improve person-centered dementia care in the U.S. by helping people “Live Fully with Dementia.” To achieve this, five goals were developed:

  1. Develop and implement a mobilizing and operating infrastructure;
  2. Coalesce, connect, and activate people and other resources to build capacity;
  3. Educate and increase awareness among the diverse dementia care stakeholders;
  4. Optimize health and well-being; and
  5. Foster health equity by creating access to and utilization of dementia care resources and services.

Teresa Johnson challenged the Alliance to improve access to and utilization of long-term services and supports for persons with dementia. “Current systems and policy too often become barriers that prevent people from accessing services. Almost half of the people served in nearly 6,000 adult day centers across the United States have a diagnosis of dementia, and we need to improve access to better support the millions of people living with dementia who prefer to live in their homes with their families as long as possible.”

Chair of CCAL-Advancing Person-Centered Living, Jackie Pinkowitz, MEd, commented, “This work must continue as an open, evolving process so that multiple perspectives may be exchanged. We hope to have the expertise and insights of all stakeholders included in the workgroups that are forming to effectively translate these recommendations into national policy and practice.”

The leadership team of the DAA consists of four leading national organizations with person-centered care at the core of their missions: AMDA —The Society for Post-Acute and Long-Term Care Medicine; CCAL—Advancing Person-Centered Living; Planetree; and The Eden Alternative. For more information, go to www.ccal.org/the-dementia-action-alliance.

—By Teresa D. Johnson, MBA NADSA Managing Director

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