The second in our 2021 four symposium series based on the theme, Envisioning the Future, this virtual event is designed to provide valuable learning on the topic of Dementia Care. Held within a 6-hour window, there will be four general sessions followed by an opportunity to gather together with the general session speakers to ask questions, explore the topics, and further define our vision for the future.
Wednesday, June 16, 2021 • 10:45 AM – 4:50 PM EDT
|SCHEDULE AT A GLANCE||JUNE 16, 2021
(All times are EDT)
|Opening / Welcome||10:45 AM – 11:00 AM|
|Session 1: A Conversation on Dignity & Dementia||11:00 AM – 12:00 NOON|
|Break||12:00 NOON – 12:10 PM|
|Session 2: Memory Care: More Than a Sign on the Wall||12:10 PM – 1:10 PM|
|Break||1:10 PM – 1:30 PM|
|Session 3: Training that Really Works: Searching the World for Effective Dementia Care Training||1:30 PM – 2:30 PM|
|Break||2:30 PM – 2:40 PM|
|Session 4: Creating Spaces for Creativity to Emerge in Dementia Care – and Our Lives||2:40 PM – 3:40 PM|
|Break||3:40 PM – 3:50 PM|
|Closing Discussion: Bringing the Vision Together||3:50 PM – 4:50 PM|
|Social Hour – More information to come||5:00 PM – 5:45 PM|
ALL SESSIONS WILL BE AVAILABLE ON DEMAND FOLLOWING THE LIVE EVENT
Opening / Welcome
10:45 AM – 11:00 AM
11:00 AM – 12:00 PM
A Conversation on Dignity & Dementia
Penny Cook, President & CEO, Pioneer Network
Mary Beth Wighton, Advocate, Author
Brian LeBlanc, Founder #WeAreDementiaStrong, International Alzheimer’s Advocate
Mary Daniel, Board-Certified Patient Advocate and Founder/CEO of ClaimMedic
What better way to start a day that is all about envisioning the future for individuals living with dementia, than by hearing from those most affected. In our opening session, Penny Cook will lead a panel of three extraordinary individuals whose experiences with dementia are very up close and personal. Mary Beth Wighton and Brian LeBlanc are living with dementia and Mary Daniel, is a family care partner. All are dementia advocates. They will share their personal stories and a vision for the future from a very personal perspective.
|Penny Cook, MSW, President/CEO: Penny’s commitment to changing the culture of aging and long-term care began early in her professional career as a social worker in Rochester, New York and continued as she moved to Colorado. She strongly believes that the care we provide to elders is directly related to the way we, as a society, view aging. She is passionate about spreading the message that we are in the midst of a revolution about how we age and where we do it. Penny comments that, “no matter whether people live, in nursing homes, assisted living communities or in their family home, we all deserve and should expect respectful and dignified care and support that is centered, directed and tailored to us as individuals.”
Penny previously served as the Manager of the Long-Term Care Ombudsman Program in the Denver metropolitan region and as the Executive Director of the Colorado Culture Change Coalition. There she expanded the Coalition’s reach to look beyond nursing homes and brought the message of culture change to assisted living communities and home care organizations. Most recently she was the Director of Long Term Services and Supports for Colorado Access where she managed a state Medicaid contract to connect individuals to long-term services and supports. Penny received her Master of Social Work degree from the State University of New York at Albany and her Bachelor of Arts in Anthropology from Binghamton University.
|Mary Beth Wighton is an advocate, writer and inspirational speaker. She was diagnosed in 2012 with probable behavioral variant frontotemporal dementia at the age of 45, and since then, she has become an advocate for people living with dementia. Prior to her diagnosis, Mary Beth was a co-owner of a recruiting business and was a Sr. Business Process Analyst for 10 years prior to that. Mary Beth is the Chair and founding member of the Ontario Dementia Advisory Board, an organization with the mandate to influence policies and practices to ensure that people living with dementia are included in decisions that affect their lives. She is also the co-Chair and co-founder of Dementia Advocacy Canada (2019) which works as a conduit for the voices of lived experience to be heard. Mary Beth has served as a witness for the Canadian Standing Senate Committee on Social Affairs, Science and Technology for its study on dementia in the Canadian society. Most recently, Mary Beth wrote the book “Dementia & Dignity: Carpe Diem,” journaling her personal journey of living with dementia.|
|Brian LeBlanc, Founder of We are Dementia Strong, is living with Vascular Dementia and Alzheimer’s Disease. Brian made a career by using his voice and so knew he HAD to use it now to Advocate and Educate for Persons Living with Dementia and their Care Partners. He does this also to honor his mother and grandfather who died with Alzheimer’s disease, as well as his father who died with Vascular Dementia. Brian is now an International Alzheimer’s Advocate, Keynote Speaker, Session Presenter and Congressional Alzheimer’s Ambassador for the Alzheimer’s Association. He speaks at international, national, regional and local conferences, seminars and workshops. Brian works tirelessly to educate individuals who are living with dementia as well as their care partners on the topic of “living well.” He is also a Crisis Intervention Team Trainer for Law Enforcement and has participated in multiple opportunities to speak to lawmakers, not only in Florida, but in Washington, DC about the value, need and importance of funding research, education, and support systems for persons living with dementia and their care partners.|
|Mary Daniel’s husband, Steve was diagnosed with Alzheimer’s disease in 2013 at the age of 59. He has been a resident at Rosecastle at Deerwood Memory Care Center in Jacksonville since July 2019. In July 2020, Mary gained national attention after taking a job as a dishwasher at Rosecastle so that she could spend time with Steve after being separated for 114 days during the lockdown due to COVID-19. Mary founded the Facebook group, Caregivers for Compromise – because isolation kills too! which has 14,000 members and group pages in every state. Her grassroots effort got the attention of Florida Governor Ron DeSantis who named Mary to the Florida Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities. The recommendations of the Task Force were accepted by the Governor on September 1, 2020 and Essential Caregivers were allowed back in nursing homes to see their loved ones.|
12:00 PM – 12:10 PM
12:10 PM – 1:10 PM
Memory Care: More Than a Sign on the Wall!
Jed Johnson, Managing Director – Aging Services, CARF International
Doug Pace, Director, Mission Partnerships, Alzheimer’s Association
Juliet Holt-Klinger, Senior Director Dementia Care, Brookdale Senior Living
Heather Luh, Dementia Program Specialist, Schlegel Villages
Many senior living providers have created memory care programs for persons living with dementia. For those seeking services and supports that focus on the whole person and provide an environment where residents experience independence and remain safe, how will they know that memory care is “more than just a sign on the wall?” This session will focus on the need to implement a holistic quality framework to guide and inform all aspects of service delivery. Doug Pace from the Alzheimer’s Association and Jed Johnson from CARF International will briefly share their person-centered dementia care practice recommendations/standards that providers have utilized for over two decades. Joining them will be representatives from two premier organizations, Juliet Holt Klinger from Brookdale Senior Living and Heather Luh of Schlegel Villages in Canada who have taken these standards, put them into action and brought them to life.
||Jed Johnson initially connected with his life’s passion working from 11 p.m. to 7 a.m. in a suburban Milwaukee nursing home. Throughout his career, he has continued to strive to make a difference and improve the quality of life of older adults and family caregivers. As a leader in aging services, his areas of expertise include caregiving, respite, business acumen, home and community services, transportation, aging and I/DD, and quality improvement. Prior to joining CARF, he served as a CARF surveyor while working for accredited organizations (Easter Seals national office and at the Jewish Association on Aging in Pittsburgh). As a member of Easter Seals national leadership team, he provided oversight of a $25M portfolio of federal, corporate and foundation funded initiatives supporting the organization’s 71-member U.S. affiliate network. Jed currently serves on the National Lifespan Respite and Center for Excellence in Assisted Living advisory committees. He is a frequent speaker at professional meetings and has authored several aging services-related articles, publications and curricula.|
|Doug Pace is the Director of Mission Partnerships with the Alzheimer’s Association. In this role, he provides strategic leadership in quality, person-centered dementia care in long-term and community-based care settings, including co-leading the development of the Association’s Dementia Care Practice Recommendations published in a special supplement of The Gerontologist. Doug’s previous positions include as Executive Director of the Advancing Excellence in Long-Term Care Collaborative; Executive Director of the Long-Term Quality Alliance; Director of the Long-Term Care Solution Campaign at LeadingAge; Executive Director of the National Commission for Quality Long-Term Care at The New School; Vice-President for Culture Transformation and Director of Assisted Living and Continuing Care at LeadingAge; President of LeadingAge Tennessee; and the Administrator of a multi-level organization that included a nursing home, assisted living and, a secured Alzheimer’s neighborhood.|
|Juliet Holt Klinger has close to 35 years of working in the dementia care and long-term care fields. A gerontologist specializing in person-centered programs for people living with dementia, she is the Senior Director of Dementia Care for Brookdale Senior Living. As an educator and program designer for more than 30 years, Juliet has developed and operated programs for national companies representing both skilled nursing and assisted living levels of dementia care. In her role for Brookdale, she is responsible for dementia care program development, implementation and quality assurance for Brookdale’s nearly 500 dementia care communities and provides strategy development and innovation for Brookdale’s dementia care product line.|
|As the Dementia Program Specialist for Schlegel Villages, Heather Luh is passionate about creating a world where people living with dementia and other brain changes not only feel accepted and included, but also supported to live well and to engage their strengths and abilities in meaningful ways. Walking a proverbial mile in someone’s shoes is her approach to understanding the lived experience of people living with dementia through observation, listening and learning. Bridges are built when a relational model of support is adopted that highlights care as a partnership, based on knowing each other well and starting from the simple place of our shared humanity. Whether at conferences or education sessions, Heather offers hands-on, real life moments people can relate to while offering insights to spark a new perspective or understanding of some challenges that accompany supporting people living with dementia.|
1:10 PM – 1:30 PM
1:30 PM – 2:30 PM
Training that Really Works: Searching the World for Effective Dementia Care Training
Benjamin Surmi, Director of People and Culture, Koelsch Communities
Peter Bewert, Meaningful Care Matters (Great Britain / Australia)
Stephan Biel, Consultant & Trainer, Spain
Walter Coffey, Managing Partner, WD International Consulting
Franck De Vivie, Director of Institute, Institute Gineste-Marescotti International
Wendy Weidner, Research and Policy Project Lead, Alzheimer’s Disease International
It’s easy to assume that the models and strategies common in the United States are the best we can do. And, it’s easy to forget that pioneers across the globe are creating innovative tools we may have yet to observe. In this panel discussion, several training experts will share insights from their practices that span work in Thailand, Singapore, Japan, France, Belgium, Spain, Australia, and beyond. What can we learn from their experience to shape our own training initiatives?
|Empowering people to thrive – no matter what disability or cognitive challenge they may live with – is the focus of Benjamin Surmi’s work as a social gerontologist. Caregiver, activity director, lifelong learning center director, and home repair coordinator were each roles that shaped his understanding of the unique needs of elders. He guides the person‐centered training for over 2,400 employees in 8 states and is currently implementing an evidence‐based approach to care from France called Humanitude. Benjamin coaches 70+ wellness directors who support over 1,500 elders. His passion is imagining the impossible and building alliances that make it possible.|
|As a Registered Nurse, Peter Bewert has always had a heart to care for people. He has worked in a variety of nursing roles from acute care, gerontology, critical care, and various management roles. Peter has worked in multi-national roles and influenced health care culture through roles such as Aged Care Management of care homes and community services, and working in the Federal Government compliance and regulation sectors. He has worked in such forums as the World Health Organization and International health agencies. Peter was involved in creating Meaningful Care Matters which supports bringing back “the art and heart of caring for people.” His passion is to make the lived experience for older people in health and social care settings a more meaningful experience by coming back to what really matters – that is, a culture of freedom, purpose and meaning which allows us to be ‘Free to be Me.’|
|Stephan Biel is a consultant and trainer of innovation in social gerontology, demographical change, and person-centered care. He has more than 30 years of extensive international experience in the health and social care services sector focused on person-centered care. He has been working with nursing homes in Spain for over 20 years, helping them become more person-centered in their approach to care. His goal is to facilitate innovation to improve the aging experience and people’s quality of life and to co-create friendly environments, services and products taking into account demographic change, diversity, and the application of evidence-based care. In November 2020, Stephan became a Certified Eden Alternative Associate and now serves as an Ambassador for Eden Alternative Spain. Stephan is an associate instructor in the Nursing department of the University of Barcelona.|
|Walter O. Coffey is a Managing Partner of WD International Consulting. He is committed to the education and development of individuals with an emphasis on supporting organizations to empower and retain their staff. Walter is an international leader in the culture change movement and has the demonstrated ability to transform organizations to become person-centered. He served as the President & CEO of LeadingAge Georgia, the Georgia Institute on Aging (the education arm of LeadingAge) and the Center for Positive Aging (the consumer arm of LeadingAge) for 18 years. Along with developing and leading professional development and educational programs, Walter has made presentations at state, national and international conferences. He is passionate about facilitating the development of individuals and organizations, especially relating to quality, person-centered care and services. He became a certified Eden Educator in order to engage and certify professionals and elders in the culture change movement. In 2008, he co-founded and still co-facilitates the state culture change coalition for Georgia.|
|Franck De Vivie has a master’s degree in management (1989 GEM – Grenoble Ecole de Management). He worked for 20 years for a European food packaging group from 1992 till 2012 developing management skills at an international level. In 2007, he was appointed VP Sales for the group. It was through his wife, Annie de Vivie, that he became involved with Humanitude. Through Annie, who has been in charge of the Humanitude network in France since 2004, Franck had the opportunity to meet Rosette Marescotti and Yves Gineste on several occasions. In 2013, they offered him the opportunity to join the Humanitude network and bring his experience to develop it internationally. The Humanitude values before all network is growing thanks to encounters with people sharing the same values in countries like Belgium, Italy, Spain, Japan, Korea, Singapore and the USA.|
|Wendy Weidner As Research and Policy Project Lead for Alzheimer’s Disease International (ADI), Wendy leads ADI’s participation in the STRiDE (Strengthening responses to dementia in developing countries) project in partnership with the London School of Economics and Political Sciences Care Policy and Evaluation Centre, international university partners, and Alzheimer’s associations in seven countries in Asia, Africa, and the Americas. Her role also includes all research-related work within ADI as well as working alongside ADI’s Medical and Scientific Advisory Panel. Wendy’s previous positions include as Business Development Manager for Dementia UK, where she led nationally on developing Admiral Nurse services, working closely with commissioners and other care providers to design new services that provided holistic and family-centred dementia care, while also providing social return on investment. Wendy also headed up a Dementia Pilot Project that looked at the impact of reminiscing with people with dementia. She studied development economics and previously worked in project and service development and evaluation throughout Africa with the non-profit sector.|
2:30 PM – 2:40 PM
2:40 PM – 3:40 PM
Creating Spaces for Creativity to Emerge in Dementia Care – and Our Lives
Casey Acklin, Program Coordinator, Dementia Engagement, Education and Research Program, University of Nevada, Reno
Mike Belleville, Dementia Activist
Berni Godhoni, Full time care partner
Nicolette Ketchum, Volunteer Facilitator, Hummingbird Memory Café, Farmington, NM
Susan Massad, Retired Primary Care Physician, Founding Member of Reimagining Dementia Coalition
Nancy Nelson, Author, Speaker and Advocate for Alzheimer’s Association
Myrna Norman, Purple Angel Dementia Ambassador
This workshop style session will be hosted and presented by members of Reimagining Dementia: A Creative Coalition for Justice, which launched in September 2020 and now has 500 members from around the world. Coalition members include people living with dementia, care partners, artists, advocates, activists, academics, policy makers and others who are successfully using play, performance, improvisation and the arts to challenge the biomedical and institutional approaches to care — and the fear, stigma and hopelessness they perpetuate. Please join us for a playful and improvisational exploration of how ordinary people are coming together to build environments that promote creativity, joy, inclusion, relationality and the possibility of growth for everyone.
|Casey Acklin lives in Reno, Nevada and works as the Program Coordinator for the Dementia Engagement, Education, and Research Program in the School of Community Health Science at the University of Nevada, Reno. He supports two statewide initiatives focused on improving wellbeing for elders and changing the cultures of aging and dementia. He is passionate about creating a more inclusive future and—through his work with the Reimagining Dementia coalition—strives to utilize the arts (song, photography, and film) toward that end.|
|Mike Belleville was diagnosed with younger onset Alzheimer’s at the age of 52, with the diagnosis later changes to Lewy Body Dementia. Along with his wife Cheryl, Mike serves as a dementia activist, volunteering his time for organizations including the Reimagining Dementia Coalition and Dementia Action Alliance, and advocating for individuals living with dementia through speaking engagements, blogs and other activities.|
|Bernadette Godinho, a retired family psychotherapist, is now a full-time care partner for Husband at end of life with Alzheimer’s. It is this lived experience that draws her to the Reimagining Dementia Coalition, joining in the work to bring about a revolution that joy & living life to full potential is the only way forward. Bernadette is also passionate in her believe that we need to reach and work towards including all regardless of race, color, creed, abilities, gender, religion, and others excluded from the mainstream of dementia care.
|Susan Massad, MD is a retired primary care physician and a founding member of Reimaging Dementia: A Creative Coalition for Justice. She is a dementia activist, advocating for bringing creativity, rationality, inclusion, play and performance into the dementia care arena. For the past four years Susan has co-led a workshop, The Joy of Dementia (You’ve got to be Kidding!) for members of the public and the dementia community.|
|Nicolette McDermott-Ketchum currently volunteers as a facilitator for the Hummingbird Memory Cafe in Farmington, New Mexico, and is an active member of the Northwest New Mexico Food Equity Task Force. Previously, she worked as a physician assistant with the Indian Health Service both in Kayenta, AZ and Shiprock, NM and was an elementary and junior high teacher in St. Louis and on Navajo Nation. In her current work, Nicolette is looking for opportunities to bridge her teaching background and medical experiences.|
|In 2013, in the middle of a conventional senior lifestyle – busy with work, family, friends and an overall grand life – a diagnosis of early-onset Alzheimer’s disease took Nancy Nelson by surprise. The diagnosis changed her life in a way no one (even she) expected: she became a poet, published author, public speaker and Alzheimer’s advocate.|
|Myrna Norman, diagnosed with dementia 12 years ago, has found a path to living well while coping with her dementia. She is a member of the executive of the Dementia Advocacy Canada as well as up to a dozen others committee advocating on behalf of others.|
3:40 PM – 3:50 PM
3:50 PM – 4:50 PM
Bringing the Vision Together
Webinars and virtual events are great, but when we convene, we all long for that opportunity to meet and interact with the speakers and other attendees, to take a deeper dive into what we learned in the sessions.
In our final session for the day, Bringing the Vision Together, Penny Cook will lead a Q&A style panel discussion where attendees can interact with the speakers from the four general sessions, and together we will further explore the vision for the future of dementia care.
Nursing Home Administrators: This program has been submitted but not yet approved for Continuing Education for 5.0 total participant hours by NAB/NCERS.
Certified Dementia Practitioners: National Council of Certified Dementia Practitioners CEU approved for 5 Hours. International Council of Certified Dementia Practitioners CEU approved for 5 Hours.
Activity Professionals: Application is in process to National Certification Council for Activity Professionals (NCCAP) for 5 CEs.
Nurses: Application is in process for 5 CEs.
Special Thanks to all our 2021 Envisioning The Future sponsors: