By Jackie Pinkowitz, M.Ed.; Board Chair, CCAL-Advancing Person Centered Living

[To support dementia initiativedementia care and learn more about research and practices, register for the International Alzheimer’s Disease Study Tour Today! ]

On Friday, June 29, 2012, The National Dementia Initiative, gathered in Washington DC at LeadingAge for their first meeting to form  recommendations on person-centered non-pharmacologic strategies to address behavioral and emotional aspects of caring for individuals living with dementia in home and community-based settings.

The meeting’s participants included nearly 60 dementia experts spanning research, policy and practice from around the United States. CCAL-Advancing Person-Centered Living is one of the leaders of this initiative.

Like most significant efforts, The National Dementia Initiative “will take a village” to achieve its lofty purpose which began in 2011 with the germ of an idea:  it should gather a leadership team representing research, policy and practice sectors that would:

  • Work diligently to connect dementia experts from all three sectors across the United States and beyond
  •  Who will volunteer their time and expertise
  • To collaborate virtually and in person reframing dementia care  by using a person-centered holistic well-being philosophy and approach
  •  In the context of understanding and responding to “difficult or challenging” behaviors through person-centered non-pharmacologic practices.
Dementia initiative, caregiving

All photos credit of CCAL

In the ensuing months, “sixty villagers” heeded the call and began virtual communications in preparation for our all-day gathering on June 29th, 2012 — a gathering that can only be described as passionate, intense, and singularly focused on our common purpose.  Today, the villagers are back home, enthusiastically volunteering for three  workgroups being formed  to advance this effort.

The aspiration of the recent meeting was to come together on key principles and practices of person-centered dementia care and provide input for a comprehensive White Paper, which will focus on how to support individuals living with dementia.  A workgroup of volunteer participants will be assisting in disseminating and distributing the final paper come September 2012.

To truly understand What Matters Most in our Initiative, you need to gaze upon some of the faces in this blog: faces of those we love, care for, and caringly assist with utmost respect and dignity.

When I opened our all-day gathering, framed photos of “Those who Matter Most” decorated every table and a beautiful kaleidoscope of faces flashed across the screen as I acknowledged:  “Clearly the most important people in our village are not here today—the people living with dementia, their families, and their care partners.  But they are with us in spirit and we honor them through all the wonderful pictures so many of you provided.  I know that if we continue to work together with open hearts and open minds, we will have an incredibly meaningful and productive meeting; and we will succeed in advancing this most important Initiative for these most important people.”

Dementia Initiative

So I urge you, regardless of whatever Change Effort you may be conceiving or currently leading,  to truly understand what drives your amazing villagers (i.e. What Matters Most  to them; what motivates and energizes them to give their all for a greater good) so that you may tap into it throughout your entire fascinating future-focused journey of change…

IAHSA provides an opportunity to join the conversation on What Matters Most and engage in dementia care best practices on October 15-20, 2012 in LA and San Diego, California. IAHSA, in partnership with Alzheimer’s Disease International, will host the International Alzheimer’s Study Tour which will explore the research and treatment protocols for early stage dementia as well as provide a shared learning experience through site visits with communities.

Register today!

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