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Advisory Council July 2014 Meeting Presentation: Dementia Action Alliance

Monday, July 21, 2014

Dementia Action Alliance

Karen Love

Dementia Action Alliance

A national initiative to coalesce and connect people, organizations, and communities for collective impact to improve dementia care in the U.S..

The Alliance Leadership Team includes CCAL-Advancing Person-Centered Living, Planetree, The Eden Alternative, and AMDA: The Society for Post-Acute and Long-Term Care Medicine.


    • The daily, social, health care, and supportive services for people who are living with dementia and for those caring for them.
  • Components
    • Cure
    • CARE
    • Treatment

Dementia Thought Leaders Summit

  • June 30, 2014
  • Washington, DC
  • Objective
    • Form consensus agreement on what is needed to improve dementia care in this country.

Dementia Stakeholders


  • Preferred: Dementia, including Alzheimer's
    • More Inclusive
  • Preferred: Person living with dementia
    • “Patient” stigmatizes the individual. “Living” underscores that people continue to live with dementia.

Definition of Person-Centered Care

Person-centered dementia care is based on the fundamental premise that every individual has a unique background, human experience, and the right to determine how to live his/her own life.

Person-centered dementia care is relationship-based and focused on supporting the individual's emotional, social, physical, and spiritual well-being (e.g., belonging, experiencing a continuation of self and normality, purpose, meaning, enjoyment, comfort, and opportunities for growth).




Summit Participant

  • Val Halamandaris – CEO, National Association of Home Care & Hospice
    • While the U.S. Constitution provides certain inalienable rights to its citizens, this doesn't including specific rights for those who are ill, old, or disabled -- but perhaps should. The treatment, stigmatization, and lack of national will to provide the complement of resources needed for people living with dementia and those who care for them is a civil and human rights issue.

Consensus Summit Goal and Strategies

Short-Term Objectives To Achieve: “Helping people live well with dementia”

  • Establish a Planning Team and four Workgroups;
  • Have agreed-upon consistent standards and expectations for dementia services and supports across all settings;
  • Have agreed-upon an optimal education and skills curriculum for each stakeholder group; and
  • Have a national Clearinghouse that aggregates national and international information about dementia care including curated resources, dementia-friendly communities/stores/neighborhood efforts, social and behavioral science research, etc.

Mid-Term Objectives To Achieve: “Helping people live well with dementia”

  • Dementia is included as a priority for the White House Conference on Aging;
  • Criteria established for person- and family-centered assessments, resources, and settings that meet individual needs and choices; and
  • There are national initiatives that coordinate the implementation of person-centered planning for everyone and ensure person-centered care is the standard of care.

Long-Term Objectives To Achieve “Helping people live well with dementia”

  • Have national policy that fosters system change;
  • Have system to ensure dementia-capable care by all those providing services and support;
  • Have system to ensure there is care coordination and management;
  • Have a system to incentivize, empower, and retain quality workforce needed for dementia care;
  • Scale practice models that offer best solutions;
  • Have system to ensure people are getting and using the resources they need in a timely manner; and
  • Have system to ensure people are as fully integrated and included in the community as they want.

Proposed Organizational & Operating Infrastructure

Summit Participant

  • Jack York - CEO, It's Never 2 Late
    • “We don't always agree on the ideal solution, but passion on all sides will get us to a different place as we try to deal with the realities of dementia care.”

Person-Centered Matters

  • Public service video announcement ~ Funded by the Commonwealth of Virginia's Alzheimer's and Related Diseases Research Award Fund ~ 2014
  • link
  • Password: ARDRAF