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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!

Eden Alternative (a member of IAHSA) and The Lifespan Network’s Wellspring Program announced that The Eden Alternative will take ownership of Wellspring to provide the most comprehensive offering of culture change resources and education services.  Their fused efforts can reach a larger audience for greater impact and fill the growing need for clinical and cultural demands of person-directed care.

Eden Alternative, established in 1992, has trained over 27,000 caregivers and has implemented practice in more than 200 nursing homes across the U.S., Canada, Europe, and Australia.  Wellspring (1994) boasts higher immunization, fewer bedfast residents, lower restraint usage, more preventive skin care, fewer psychoactive medications, less resident incontinence, fewer tube feedings and more altered diets than comparable facilities with the same staffing ratios.

The combined offerings of Eden Alternative and Wellspring will bring together for the first time a comprehensive approach to culture change, leveraging their respective strengths.

Christine (Christa) Monkhouse, Regional Coordinator for Eden Alternative Europe, shares the excitement with IAHSA:

“I am very happy about this announcement. In the past, a few culture change movements and initiatives have started and developed their own values, strategies and actions for change. Now that the time has come that our societies acknowledge the need for culture change slowly but definitely, all movements have matured and progressed, grown and not given up.

The ten Eden Principles constitute an integrated, holistic philosophy, based on humanistic values, which are flexible enough to be adapted to all cultures and belief system. These values are now more and more supported by research from neurobiology, positive emotions and many others.

The Eden-Alternative has the potential to become the umbrella philosophy for all culture change movements until the old culture is really gone. So, given this very clear vision, the Eden-Wellspring merger is only the beginning of a profound change on how we provide long term care.”

The Majestic

Credit: Alex E. Proimos

A new Health Affairs article, written with support from The Commonwealth Fund and the ABIM Foundation call for more efforts to make health care in the US more patient-centered.

The article argues that current efforts are often limited to infrastructure and information technology improvements and that to be truly patient-centered there needs to be a ‘healing relationship’ between physicians and patients.  This means that providers will need to engage in a two-way dialogue with patients and their families, sharing information, exploring patients’ values and helping them with clinical decisions.

While this report is medically oriented and focused on acute care, there are many lessons to be learned by those involved in ageing services.

We are seeing an increasing number of studies and articles about who is in charge of health care decisions for individuals.  Called by a number of different names [personalisation; patient-directed care; person-centered care; self-directed care] they all mean the same thing – Who Decides?

The Commonwealth Fund’s recent study entitled International Developments in Self-Directed Care gives evidence of an international trend toward self-directed care focused on an unlikely group of patients – the frail, old, disabled and mentally ill.  The enabling factor is the use of personal budgets, a cash payment made to people eligible for services with few strings attached, empowering the individual make their own decision about who will care for them how.

The implications are huge.   As noted by John Goodman in Health Affairs,  “The advantage of empowering patients and families in this way are straightforward:  lower costs, higher quality care and higher patient satisfaction.”

See link for last weeks post on implications of ‘personalisation’ – a study by The Third Sector Research Centre in England.

Personalization, the term used in England for person-directed or consumer-directed care, is the concept of offering very different services to those that have been delivered in the past.

The Third Sector Research Centre in England recently published a paper describing the major features of the personalisation agenda and the key research, policy and practice implications of this for the third sector.

Personalisation offers the potential for much improvement in the way individuals with care needs are supported, but might also mean significant changes for providers involved in the delivery of these services.   This paper helps third sector bodies understand these implications and how to respond to them appropriately.

Caring Management Matters, an IAHSA media partner and leading magazine for ageing services in the UK, is publishing a series of articles based on sessions that IAHSA members will be presenting during IAHSA’s 8th International Conference in London in July.

One article is by William Rauch, CEO of The Cape Peninsula Organisation for the Aged.  His session explores the South African Concept in Aged Care, providing an interesting window into the challenges and opportunities of providing ageing services in a developing country.

Another is by Dr. Graham Stokes, Head of Mental Health at Bupa, a leading provider of health care and ageing services in the UK, Spain and Australia.   Dr. Stokes’ focus is dementia care and his session on the challenges to working truly person-centred in dementia care provides an interesting look at the barriers to being able to provide person-centred care to individuals with dementia.

Click here for more information about IAHSA’s London Conference in London in July.

Person-centered care is much talked about these days and we have a number of sessions on the topic at the IAHSA 8th International Conference in London in July.

Help the Aged, a consumer-focused charity in the UK and a member of IAHSA’s organizing committee, recently published a paper entitled Personalisation in Social Care, providing a good overview of the evolution and current practices in France, Germany, the Czech Republic and the Netherlands.   The paper was written to help provide a blueprint for the UK to achieve goals of adapting these principles. hre

As I posted yesterday, IAHSA is cosponsor of the Asian Ageing Conference in Singapore that ends today.   A number of IAHSA staff and members were on the program, including Bob Lagoyda, IAHSA Director of Professional Development, Dr. Robyn Stone, IAHSA Research Director and head of the Institute for the Future of Aging Services, Carol Benner, Quality Control Expert, and Emi Kiyota, a member of IAHSA’s Design for Ageing Program.

One of Emi’s sessions at the conference focused on how a city in Japan is taking care of their elderly in the community.   This article gives you a good idea of the creativity that exists in IAHSA’s Global Ageing Network.

About this blog

IAHSA’s Global Ageing Network Blog was created because of you!! We got your message loud and clear – “Provide us with a quick and nimble communications vehicle so we can stay connected and create community across borders".

Questions? Email us at iahsa@leadingage.org.

Authors

Virginia Nuessle, Study Tour Director

Majd Alwan, Director, CAST

Alla Rubinstein, Program Administrator, IAHSA

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