Kim's Column

Person-centered dementia care is the key to preserving humanity for people living with dementia in all settings where aging services are delivered.  Recognizing the hallmarks of quality dementia care, recognizing that there is “A PERSON IN THERE,” and learning the culture change philosophy of person-centered care will change the way that you and your organization approach quality dementia care as you work toward creating and improving your comprehensive dementia care program. 

This conference is for everyone who knows, interacts with, works with, or provides services to people with dementia.  We will be focusing on the hallmarks of quality dementia care, how to set up – or improve – your comprehensive dementia care program utilizing the culture change philosophy of person-centered care, and early stage programs from across the nation.  In addition, we will be listening to people who are living with dementia tell their stories.  You will leave with an action plan and a “to do list” for setting up or improving person-centered dementia care in your organization.

Presenter Karen Love, president of Pathways to Care, is a former speech pathologist and long-term care administrator.  She has been working for more than 25 years in aging services – the last 15 years working directly with individuals living with dementia and those who care for them.  She is the managing director for CEAL, the national Center for Excellence in Assisted Living.  She is also the Founder of the Consumer Consortium on Assisted Living, a national advocacy and education organization for consumers of assisted living.

Richard Taylor, Ph.D., has lived for seven years with a diagnosis of dementia, probably of the Alzheimer’s type.  A former psychologist, he is now a champion for individuals with early-stage and early-onset Alzheimer’s disease.  He speaks of his experiences and the experiences of others living with dementia.  His book, Alzheimer’s from the Inside Out, is a “must read” for anyone in the field of aging services and dementia care. 

The conference is sponsored by:

Alzheimer’s Association – Georgia Chapter
      Presbyterian Homes of Georgia
      Emory University Alzheimer’s Disease Research Center
      Wesley Woods Senior Living
      Fuqua Center for Late Life Depression/Emory University

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“In the eyes of many others, sometimes even the eyes of caregivers, I am seen as less than a complete someone. Just because my memory is failing me, just because a region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes, I am still a whole and complete someone. I am still me. I am still grandpa, and dad, a friend, and whole and a complete human being. I am in my mind still and have always been a complete person. I am not becoming any less a person simply because I cannot remember like you, talk you do, or think like you do. I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be. I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , one day at a time.”

… Richard Taylor

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Celebrating Local Change

On May 22nd, Beth Meyer-Arnold, Chair of the National Adult Day Services Association and Director of Community Services for Luther Manor in Milwaukee, Wisconsin, presented a full-day workshop, “Elements of Success:  Adult Day Leaders Work on a Blueprint of Transformation” to over 40 Adult Providers from around the state of Georgia. 

Adult Day Providers were inspired to begin transforming their programming to be more person-centered.  Beth presented specific tools and ideas to assist providers in their work.

MJCAA Weinstein Center for Adult Day Services Focusing on Person-Centered Programming presented at the Adult Day Services Forum -- September 25

Adult Day Service Providers gathered at Senior Citizens' Services in Atlanta. The focus of the day was on quality assurance.  A program evaluation of the Weinstein Center was shared with the group, focusing on lessons learned and how to improve services and programs.  There was a good dialogue and information sharing regarding the movement to more person-centered programming in adult day settings.

Faculty:
Ann Garzia, SarahCare Adult Day Services
Dianne O'Donnell, Gerontology Institute, Georgia State University
Georgia Gunter, MJCAA Weinstein Center for Adult Day Services

Website

This is a reminder to check out the Culture Change Network of Georgia website: www.culturechangega.org

Look at the GET INVOLVED section.  Please send in your stories of change, questions, ideas and “Language of Change” so they can be feature in Transformations and added to the website!

National News

Over 1,100 participants attended the Pioneer Network 2008 Conference in Washington, D.C. on August 20-22, 2008, making it one of the most successful in Pioneer Network's history.

Participants from Georgia included:
Marsha Bond, Ombudsman, Atlanta Ombudsman Program
Beverly Brandon, Architect, REES Associates
Jocelyn Ellison, MSN, RN, VA Medical Center Atlanta
Regina Ford, Director of Health Services/Nursing, The William Breman Jewish Home
Robbin Hendren, SavaSeniorCare Administrative Services
Nancy Kriseman, President, Geriatric Consulting Services
Katie Laitsch, LPN, Arbor Company
Beth Laxton, COO/Administrator, The William Breman Jewish Home
Eve Levine, Director of Human Services, The William Breman Jewish Home
Kim McRae, President, Have A Good Life and Culture Change Consultant to
           Aging Services of Georgia
Veronica Reynolds, Nurse Manager, VA Medical Center Atlanta 
Melany Sattler, MSW, Director of Education, Alzheimer’s Association GA Chapter
DeAnna Zalondek, Director of Staff Development, The William Breman Jewish Home

Pioneer Network is the national grassroots movement that advocates and facilitates deep system change and transformation in our culture of aging based on person-centered values.  They are dedicated to creating the kind of care that each of us wants for our loved ones and ourselves. 

Pioneer Network is expanding beyond nursing homes with efforts to reach everyone who influences person-centered care and culture change across all aging and long-term care environments including: Home Care; Adult Day Services; Aging Network Agencies (e.g., Area Agencies on Aging and their contract providers); Assisted Living; Hospice; Hospitals; PACE programs;  Rehabilitation/Post-Acute Services; Retirement Communities; Senior Centers; Senior Housing; Wellness Centers; and disability-related organizations.

Other groups are beginning to replicate the mission of the Culture Change Network of Georgia which promotes and fosters culture change in all settings where aging services are delivered.

SAVE THE DATE FOR THE 2009 CONFERENCE!



Pioneer Network 9th National Conference
August 12-14, 2009
Little Rock, Arkansas
 Save The Date/RFP Notice

This short, seven minute video is a great tool for engaging a variety of audiences – in the community as well as in your organization or agency – around the questions that more and more people are asking every day.  How will we take care of our aging parents?  What kind of care will be available for us?  Are we happy with the options now, and what can we do to make a better world for elders?

Pioneer Network’s new video helps you get the conversation started at:  education and training sessions;  community presentations;  marketing opportunities;  family councils and resident councils;  and in-service programs.  The video also helps you, as providers, think through and prepare for the questions and requests that baby boomers will be addressing for their loved ones and themselves.  The consumer “mini-website” offers some helpful information, including a Consumer’s Guide to Finding a Facility on the Culture Change Journey:  Key Questions to Ask the Nursing Home Staff to Determine if They are Focused on Providing Person-Directed Care (available in Spanish as well).

WATCH THE VIDEO
www.pioneernetwork.net/getinvolved

Recommended Reading and Resources

In this review, researcher and author Celia Berdes discusses a recent book on the lives of residents and workers in residential care.

       Dancing with Rose: Finding Life in the Land of Alzheimer's (New York: Viking, 2007), a new book by Lauren Kessler, is the best book yet written on the lives of old people in residential care and the people who care for them. It is not the first book about working as a nurse's aide: Sallie Tisdale's 1987 classic, Harvest Moon: Portrait of a Nursing Home, was based on the author's work as an aide, and more recently, Thomas Edward Gass' Nobody's Home: Candid Reflections of a Nursing Home Aide (2004) gave a highly personalized and excessively candid report. Dancing with Rose, by contrast, balances the personal with the public, and Kessler tells her story with such skill and sensitivity that the reader will find it hard to put the book down.

       Kessler comes to work in a residential facility for Alzheimer's patients eight years after losing her own mother to the disease. A conflicted relationship with her parents prevented Kessler from fully participating in her mother's care, and so she decides to try to provide that care to ''someone else's mother.'' Dancing with Rose is the story of her four months' experience as a universal worker.

       She loves the work. Her bottom line is that, while her residents have lost a great deal, what remains is as important as what has been lost, and thus life persists and community can grow in such facilities.

       A keen observer, Kessler describes Alzheimer's disease in a way that will be recognizable to anyone who has worked with people who have it. She describes wandering behavior, repetitive calling out, and loss of inhibitions. She also tells of behaviors that are not so often described: the residents' occasional flashes of insight and humor, their tendency to pair up, and the alternate realities that some develop, relying on fragments of their personalities that remain relatively intact. But beyond all this, Kessler describes a certain kind of acceptance, the residents' grace in accepting dependence and receiving care, which constitutes their contribution to the caregiving exchange that occurs here.

       The author also captures the facility, not as a building but as a stage on which various players each provide, in their turn, a key to the story of what happens there. In particular, she focuses on the role of administrators in setting the stage and expectations of care. She describes well the critical role of activities staff in keeping the environment lively. And she does not neglect the very important role of family members, who by their participation in caring and through collaborative relationships with staff can make a significant difference in care. Missing in action here, interestingly, are physicians and even nurses.

       The leading players are nurse's aides, and Kessler does an excellent job of capturing them and their work experiences. She tells how some seem to have an aptitude for caring, often relying on their experiences of mothering or other kinds of nurturing. She pinpoints the role of attitude, how for some each new task is taken up with a sense of mission, while for others it is just another chore. She describes the special skills that they use in giving Alzheimer's care, how they must intuit needs that cannot be expressed and witness residents' decline without looking away. She describes in fine detail the effect of doing everything--cleaning, feeding, laundry, toileting--for more than ten residents per shift. Without flinching, she describes the challenges of low-wage work, the incessant search for a little step up, the hanging-by-a-thread arrangements for childcare and transportation that enable women to do this sort of work. And she describes what it means for workers to care for residents who always, ultimately, die.

       Dancing with Rose leads us to this inescapable conclusion: that caring aptitudes and attitudes of skilled direct care workers are the most important components of high quality care. In a call for systemic reform, Kessler asks us to think about our own aging: ''If I do need help when I get older, if it becomes impossible for me to live independently, how do I want to live? Do I want to be cared for by an overworked, underpaid woman with so many chores to accomplish on her shift that she can barely spare a minute to talk to me? ''The important question is whether I--whether any of us--have the gumption, foresight, creativity, fearlessness, imagination, whatever it takes to do something about eldercare before it's our turn.''

       Dancing with Rose should be read by every person who works as a nurse's aide, by every person who will ever send a relative to live in residential care, and by everyone who plans to get old.

By Celia Berdes, PhD
Director of Research, Presbyterian Homes, Evanston, Illinois, and Assistant Professor, Buehler Center on Aging, Health & Society, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
Finding Life in the Land of Alzheimer'

Events Calendar

     Friday, October 24

Person-Centered Dementia Care Conference

     Tuesday, November 4

The Ethics of Caring --The Caring Spirit Way

with Nancy Kriseman
       Canterbury Court, Atlanta

This workshop will inspire leaders to rethink what it means to provide ethical quality care that is person centered. Participants will learn specific caring strategies that help support the mind, body and spirit of the elders and staff in their communities. Participants will learn powerful ways to support staff and help them perform their jobs in an ethical caring way. Lastly, participants will learn how to ensure that a culture of care can be successfully implemented.

     Thursday & Friday, November 13-14

Coaching Supervision:Skills for Supervisors in Home & Residential Care

9 am - 4:00 pm, Aging Services of Georgia Offices

NOTE: This training will be available for housing providers in 2009

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About Us

The Culture Change Network of Georgia was founded in 2008.

Our mission is:
To promote and foster culture change to improve the quality of life for older Georgians and those closest to them in all settings where aging services are delivered.

(Including nursing homes, assisted living, adult day, home health, hospice, HUD/affordable housing, and the DD community ~ In the place they call home…)

We will be working to define culture change; increase awareness; educate; share ideas; highlight programs and promising practices that can be replicated throughout the state.

As the clearinghouse of organizations and providers working on person-centered, long-term care in multiple care settings, we will build common knowledge, support, commitment and relationships among those represented, and coordinate with other existing groups that have similar goals and interests.

The Culture Change Network of Georgia is spearheaded by Aging Services of Georgia (formerly gahsa) and the Georgia Institute on Aging.  For the last several years, Aging Services of Georgia (formerly gahsa) has been gearing up to organize such a group, with a focused effort around the goal of person-centered care.

History of Georgia Efforts:

-’02-’03 Eden Coalition brewing
-’03 gahsa hosted PN board meeting.  Charlene Boyd, RoseMarie Fagan, Barry Barkin presented day-long event on Pioneer Network and Culture Change.  More than 100 attended.
-’04 Barry Barkin, Becoming A Champion of Change, sponsored by gahsa and GIA
-’04 Quality First rolled out in GA
-‘04 – ’05 GA participated in the Person-Directed Care Pilot with CMS and Quality Partners of Rhode Island.  Six homes selected from the 35 that applied to be in pilot.
-’05 St Louis Accord, 7 attendees
-Since ’05 the QIO has held semi-annual meetings in 8 locations statewide.  Over 90 homes have learned about the HATCh domains of the model and how to make lasting changes.
-Ombudsman have received training on the HATCh model
-2 nursing home corporations have held meetings for their administrators, DONs and consultants to learn about HATCh
-CMS Region IV has participated in training on HATCh, as well as GA Office of Licensure and Certification
-NHQI (Nursing Home Quality Initiative) stakeholders have been meeting quarterly since ’02.
-Platinum level achieved for GA in the Advancing Excellence in America’s Nursing Homes;  95% nursing homes signed up for national campaign – campaign supports goals of culture change: consistent assignment, resident and employee satisfaction, and reducing staff turnover.
-April ’07 The Green House at Calvary in Columbus, GA opened; the first dementia AL Green House
-LANE Interchange in Nov ’07 – 6 reps from GA
-Forsyth Healthcare in Forsythe, GA is an Eden Home

The Culture Change Network of Georgia has an advisory group to assist in providing high-level leadership.  It is comprised of representatives from: providers including nursing homes, assisted living, HUD, HCBS, hospice, adult day, CCRC.  Network partners include: AAA, Alz. Assoc, CMS Survey/Cert Review Branch, Emory HealthCare Fuqua Center for Late Life Depression, gmcf (QIO), DHR/ORS, DHR/DAS, Georgia Council on Aging, LTC Ombudsman, The Green House Project, GSU Gerontology Center, Holleran Consulting, IAHSA, Institute for the Future of Aging Services, Rosalynn Carter Institute, Pioneer Network.  TBD includes: GHCA, HUD, AARP, Senior Consumers from gahsa member facility/agency, DCH (Medicaid), Health Department, Legislators, Life Safety, Architects/Designers, Activities…

Task Force Groups are being formed to focus on funding and upcoming events.

Aging Services of Georgia is providing the leadership role and in-kind support; staffing time; newsletter and website production and “housing” the website; conference “production;” financial support to consultant; meeting space…

Jan 31, 2008 first meeting with Walter Coffey, Aging Services of Georiga and Kim McRae

Advisory Group formed

Feb 21, ‘08 first meeting Advisory Group

Website up and “under construction”

Newsletter Transformations: Celebrating Culture Change

Official “kick-off” & intro of the CCNG April 14-16, ‘08 at the gahsa annual conference On the Edge of Creating Tomorrows, with key-note speaker Fran Battisti. He spoke on leadership, “change” and “culture.”  Kim McRae presented a workshop, Culture Change: The Future of Aging Services & Long-Term Care.

Participation in CMS/Pioneer Network Symposium on CC and Physical Environment Requirements April ‘08.

Promoted Alzheimer’s… Creating Our Own Future, featuring Joanne Rader, with the Alz. Assoc. Central GA
May ’08.

Presented Culture Change in Affordable Housing, at the gahsa Creating a Culture of Excellence, Service Coordinator Training Conference Aug 28, ‘08

1st Annual CCNG Summit, Many Paths to Person-Centered Care, featuring Carmen Bowman and Peter Notarstefano (Dir, Home and Community Based Services, AAHSA) Sept 4, ‘08

Person-Centered Dementia Care and Culture Change, featuring Karen Love and Richard Taylor, Oct 24, ‘08