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State Plan for Alzheimer's Disease & Related Disorders 

Over 400,000 individuals are living with Alzheimer’s Disease or a related disorder in the commonwealth and the toll of this disease extends beyond those affected to their families, friends, and communities. Due to this epidemic, Executive Order 2013-01 was signed, establishing the Alzheimer’s Disease Planning Committee in 2013. Twenty six members were appointed to the committee which included a Pennsylvanian living with Alzheimer’s disease, representatives of families, and caregivers of persons living with and caring for individuals living with ADRD; the aging network, other Departments of state, providers from across the care continuum, leading researchers in pursuit of a cure and better care, and members of the legislature.

The committee produced the Pennsylvania State Plan for Alzheimer’s Disease and Related Disorders and the plan was approved in early 2014. The plan, utilizing public input, outlines seven key recommendations to develop a strategy to mobilize the commonwealth’s response to the anticipated increase in the incidence of Alzheimer’s Disease and related disorders in Pennsylvania.


Alzheimer's Disease & Related Disorders 
Virtual Forum 2023

The Pennsylvania Department of Aging held the 2023 Virtual Forum on Thursday, November 2. The on-demand program recording is available for viewing.

2023 ADRD Forum Recording

Presentations and Related Resources

Ask Me About FTD... The Other Dementia! (PDF) – Presented by Dr. Debra Tann

Lewy Body Dementia (PDF) – Presented by Dr. Sarah Berman
www.lbda.org

The Association for Frontotemporal Degeneration – Find help with AFTD, Resource Flyer – Matt Sharp

Dementia Friendly Pennsylvania Update (PDF) – Presented by Stacie Bonenberger and  Anneliese Perry

Join the CallClub (JPG)– Determined Health

Presenter Biographies

Dr. Debra TannDr. Debra Tann is originally from Sacramento, California, but she refers to Valdosta, Georgia as her home. She is married to Chris Tann and together they have three adult sons, a 5-year-old granddaughter and two grandsons who are each a year old.  Dr. Tann has 30-plus years of educational experience. She began her career in higher education teaching Political Science at the community college and university levels. After many years in higher education, Dr. Tann launched Genesis Christian School, where she was at the helm for 14 years.

Post Genesis, Dr. Tann began her current educational chapter as a certified Dementia Educator and nationally certified Virtual Dementia Tour coach. In the dementia space, she works at the local level as the CEO of Reminiscent, a brain health organization. At the state level, Dr. Tann is a collaborator for Georgia Alzheimer’s and related Dementias organization (GARD). At the national level, she is a Congressional Team Member, assigned to Senator Jon Ossoff, for the Alzheimer’s Impact Movement (AIM). She is a champion for the ENACT act, which she hopes will be reintroduced in Congress. She serves as an ambassador for ALZAuthors Traveling Library in Georgia. Dr. Tann has spoken before Congressional and state lawmakers as well as the Food and Drug Administration on behalf of dementia and families. Dr. Tann is the coordinator for the “Calling All Voices” project, which specifically addresses dementia from the lens of Blacks, Hispanics, Asians, and the LGBYQ communities[EJ1] . Dr. Tann has been featured in several dementia guides and white papers, and her most recent work, entitled Building Better Brain Health for All People, was published in The Global Council on Brain Health.

Dr. Tann is moving the needle in rural south Georgia by conducting local events that enhance dementia and brain health education. She is a strong advocate for caregivers, debunking myths associated with dementia, and erasing stigmatization and misunderstanding around dementia. Dr. Tann is working tirelessly to eradicate health care disparities as it relates to diagnosis rates, access to early treatment, quality care, clinical research, and trial participation rates among Blacks and Hispanics.

Dr. Tann is a lecturer at Georgia State University in the Gerontology department and   serves on a clinical research team. The team is conducting research on Alzheimer’s with an emphasis on preventing slips, trips, and falls. Dr. Tann is also a published author with her book, The Race of Dementia, currently being utilized in the nursing program at Texas Christian University and at Georgia State University‘s Gerontology department. She also facilitates an online support group designed for caregivers and she hosts a local monthly Memory Café for those living with memory loss. Dr. Tann is a national and international speaker and a trained Memory Care Screener. She also serves as a Board of Director for Dementia Action Alliance.

Dr. Tann was recently recognized as a BrightFocus Foundation Dementia Advocate honoree. She accepted this prestigious award June 2023 at a Washington DC gala.

In her spare time, she enjoys reading, traveling domestically and internationally, Bible study, celebrating the arts, and Dr. Tann also volunteering on community projects.

Contact information and more about Dr. Tann can be located on her website: www.debraondementia.com. She is also on Twitter, LinkedIn, and Facebook.

Dr. Sarah BermanDr. Sarah Berman, M.D. Ph.D., is Associate Professor at the University of Pittsburgh’s Departments of Neurology and Clinical & Translational Science. She is an Associate Director of the Pitt Alzheimer’s Disease Research Center (ADRC) Clinical Core as well as a Principal Investigator in the Pittsburgh Institute of Neurodegenerative Diseases. Her clinical expertise focuses on caring for those with Lewy Body Dementia (LBD), Parkinson’s disease (PD), Alzheimer’s disease, and other movement disorders. 

Dr. Berman’s scientific research focuses on the role of mitochondrial dysfunction as an underlying cause of neurodegenerative diseases such as LBD and PD. She is involved in overseeing several clinical research studies, including as site Principal Investigator for the Dominantly Inherited Alzheimer Network studies and the Dementia with Lewy Bodies Consortium. She received her undergraduate degree in Human Biology from Stanford University, MD and PhD (Neuroscience) degrees from the University of Pittsburgh School of Medicine, and residency and fellowship training at Johns Hopkins University, before becoming faculty at the University of Pittsburgh.

Julia WoodJulia Wood is an occupational therapist specializing in assessment and treatment of people with Parkinson’s disease and related dementias. Ms. Wood is currently the director of Professional & Community Education at the Lewy Body Dementia Association (LBDA). She has served as faculty for the Parkinson’s Foundation’s Team Training for Parkinson program since 2016, certification and training faculty for the LSVT BIG® program since 2018 and served on the Parkinson’s Foundation Rehabilitation Task Force in 2021. She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson’s Disease in 2022 and served on the Comprehensive Care Subcommittee for the World Parkinson’s Congress (WPC) in Barcelona, Spain in 2023.

Matthew SharpMatthew Sharp joined the Association for Frontotemporal Degeneration (AFTD) staff in December 2009. Having earned his Master of Social Service degree from Bryn Mawr College’s Graduate School of Social Work and Social Research, he made a career transition to social services from the field of natural sciences. In June 2021, Mr. Sharp became the AFTD Advocacy Manager, responsible for informing AFTD’s advocacy strategy and for the coordination and development of all AFTD advocacy activities.

Anne FargussonAnna Fargusson is a retired registered nurse who developed behavioral variant frontal temporal degeneration in 2004. She has the genetic mutation C9OFR72, which she inherited from her father. Mrs. Fargusson currently lives with her husband, and they have identical twin boys who are now married and growing their own families.

Dr. Gary Schmidt is a retired family practice physician. He graduated from the University of Wisconsin with a Bachelor of Science degree in 1971 and an M.D. in 1975. He completed his family medicine residency at the University of Illinois, Peoria in 1978. Dr. Schmidt spent 38 years practicing family medicine and was the medical director at the Felician Village/St. Mary’s Nursing home for 30 years. Dr. Schmidt has been retired for eight years and has been living with dementia with Lewy Bodies for four years. Dr. Schmidt will be joined at the Forum by his wife, Janet, a retired nurse, who acts as his care partner.

Stacie BonenbergerStacie Bonenberger – OTR/L, Program Manager, Aging Initiatives – is a program manager at the Jewish Healthcare Foundation (JHF) and Pittsburgh Regional Health Initiative, with a primary focus on initiatives related to the aging population, including the design of new models for senior living. Ms. Bonenberger is one of the statewide coordinators for Dementia Friends Pennsylvania, a global initiative that is changing the way people think, act, and talk about dementia. She is an active member of the Dementia-Friendly Greater Pittsburgh leadership work group. Ms. Bonenberger is also a member of the Pennsylvania Alzheimer’s Task Force. As part of the JHF Aging Team, Ms. Bonenberger uses coaching skills to develop and implement customized curricula helping healthcare organizations with quality improvement efforts. Current projects include Revisiting the Teaching Nursing Home Initiative, a pilot project in three regions of Pennsylvania working to demonstrate how enhanced partnerships between academic nursing schools and skilled nursing facilities can improve quality outcomes and address workforce challenges. 

During 2020 - 2021, she worked closely with the Pennsylvania Departments of Human Services and Health to provide Learning Networks for staff in skilled nursing facilities, nursing homes and congregate living through the Educational Support and Clinical Coaching Program and Regional Response Health Collaborative Program. This work continues with the Pennsylvania Long-Term Care Learning Network for nursing facilities. Previously, Ms. Bonenberger worked to help long-term care facilities reduce avoidable hospitalizations through the Centers for Medicare & Medicaid Innovation grant, RAVEN (Reduce AVoidable hospitalizations using Evidence-based interventions for Nursing facilities). Prior to joining JHF, she was the assistant facility director of occupational therapy at UPMC Passavant and has 17 years of clinical experience as an occupational therapist in Pennsylvania and Colorado. Ms. Bonenberger received her bachelor’s in psychology from the University of Massachusetts and her master’s in occupational therapy from Chatham University. She also earned a certification in computer programming from the University of Denver.

Anneliese PerryAnneliese Perry – Program Manager, Aging Initiatives – is a program manager at the Jewish Healthcare Foundation (JHF). Her primary focus is working on initiatives that support older adults to age well at home and in their communities. Her current work includes the Teaching Nursing Home Collaborative, an initiative focused on demonstrating how enhanced partnerships between academic nursing schools and skilled nursing facilities can improve quality outcomes and address workforce challenges. She is one of the state-wide coordinators for Dementia Friends Pennsylvania and Dementia-Friendly Pennsylvania initiatives. She is an active member of the Dementia-Friendly Greater Pittsburgh leadership work group. During 2020 - 2021, she worked closely with the Pennsylvania Departments of Human Services and Health to provide COVID-19 Learning Networks for staff in skilled nursing facilities, nursing homes and congregate care living through the Educational Support and Clinical Coaching Program (ESCCP) and the Regional Response Health Collaborative Program (RRHCP). This work continues with the Pennsylvania Long-Term Care Learning Network for nursing facilities. 

As part of the JHF Aging Team, she uses her coaching skills to develop and implement customized curricula, helping healthcare organizations with quality improvement efforts. Previously, Ms. Perry worked to support long-term care facilities to reduce avoidable hospitalizations through the Centers for Medicare & Medicaid Innovation grant, RAVEN (Reduce AVoidable hospitalizations using Evidence-based interventions for Nursing facilities). Prior to joining JHF, Ms. Perry worked in both home- and community-based services as well as long-term care. She holds a master’s in professional leadership from Carlow University and a bachelor’s in psychology from Westminster College. She is a licensed nursing home administrator and is certified in ethics and compliance management from St. Louis University.

ADRD Task Force

In May of 2018,  the Pennsylvania Department of Aging announced the formation of its own Alzheimer’s Disease and Related Disorders (ADRD) Task Force. The Task Force was created to assist the Department with advancing those State Plan objectives within its scope.

The Task Force:
      • Collaborates with local organizations, entities, advocates, and other stakeholders to identify and share best practices supporting the goals and the overall success of the State Plan;
      • Assists with developing and facilitating actions needed to carry out objectives the State Plan within the Department's scope at the local level;
      • Explores issues relevant to ADRD; and
      • Assists in the planning of the Department's Annual ADRD Forum