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Leah Shepherd

Ohio State University

Arnedia Smith, Best Undergraduate Paper

Paper title: A Scoping Review of Dementia Caregiving Relationships and End-of-Life Care

Older adults living with dementia and their family caregivers are at risk for facing difficult end-of-life decisions. Little is known about the relationship between the older adult and family caregiver as it relates to end-of-life care. The purpose of this scoping review is to examine the relationship between the older adult living with dementia and the family caregiver on end-of-life care. From our review to date, the following themes will be discussed: Significant burden of family caregiving, need for increased caregiver education, understanding of advanced care planning, familial involvement in end-of-life care, and similarities and differences in end-of-life wishes. Family caregivers and the older adults living with dementia face complicated decisions regarding end-of-life while also navigating their changing relationship with their older adult care recipient living with dementia. Future multidisciplinary research should support older adults living with dementia and their family caregivers toward improving healthcare outcomes that will promote better quality-of-life near the end-of-life.

    Partners

    I am an Assistant Professor of Social Work at The Ohio State University. I am committed to understanding the strengths and challenges of grandfamilies in order to create and deliver interventions that encourage self-care, communication, and empowerment.

    My research focuses on building resilience in grandfamilies. I have worked with grandfamilies for over 13 years through community service and research. In this time, I have studied influences of culture on the experiences of grandparents; the relation between grandparents & social network and their resilience; I have conducted an environmental scan; helped create, implement, and evaluate the GRANDcares Project (GC) and expanded the GC intervention, which is currently being implemented in Franklin County, OH. The GC is a strengths-based intervention designed to provide education, support, and mentorship to grandfamilies and service providers. It includes three components; a grandparent caregiver component, a youth component for children who are being raised by grandparents and are between the ages of 9-12, and webinars for service providers. The expanded GC program is called GRANDcares Plus (GC+) and includes the original GC curriculum plus two educational workshops. The workshops provide educational information to grandfamilies (both grandparents and grandchildren) about opioids and trauma. These workshops were incorporated into the intervention to meet the specific preferences of grandfamilies in central Ohio. The current project builds logically on to this work. In addition to intervention research, I have built strong relationships with many community members (i.e., grandparents raising grandchildren and service providers).

    Ken Wilson has 30 years of experience working in senior services. He has worked at Council on Aging of Southwestern Ohio since 1994 where he is Vice President of Program and Business Operations.

    He is responsible for a $102 Million budget delivering an array of services to over 30,000 seniors that enable them to remain independent at home. He administers 4 senior service levy programs, and has led more than 15 successful campaigns to raise local funding for home and community based services. Ken works with regional health systems to support smooth and safe transitions of care from hospital and nursing home back to home. Ken is experienced with public policy advocacy work at the local, State and Federal levels. He is an adjunct instructor at Miami University’s Scripps Gerontology Center. He volunteers his time for a variety of community organizations including as Board member for the Hamilton County Board of Developmental Disability Services, and the Ohio Association of Gerontology and Education.

    He received his Masters degree in Gerontological Studies from the Scripps Gerontology Center at Miami University. Ken is a recipient of the W. Fred Cottrell Distinguished Alumni Award from the Miami University Scripps Gerontology Center.

    Harvey L. Sterns, PhD, Serves as Chair City of Akron Commission on Aging and Co-Chair of Age Friendly Akron/Summit County.

    He was in the Transition After Retirement Program, and is professor emeritus of psychology and director emeritus and life fellow of the Institute for Life-Span Development and Gerontology at The University of Akron. He is research professor of gerontology in Family and Community Medicine at the Northeast Ohio Medical University. He has been a faculty member in both the Psychology of Adult Development and Aging and Industrial/Organizational Psychology graduate programs, and chaired the specialization in Industrial Gerontological Psychology.

    He has published extensively on cognitive intervention, work and retirement, career development, training and retraining, and self-management of career and retirement. He is a licensed psychologist in Ohio and is a fellow of the Gerontological Society of America, American Psychological Association, Association for Psychological Science, and Association for Gerontology in Higher Education. He has served as president of Division 20 Adult Development and Aging of the American Psychological Association, Association for Gerontology in Higher Education, and Sigma Phi Omega National Academic and Professional Society in Gerontology. He is a past board of trustees member of the American Society on Aging. Sterns was inducted into the Ohio Senior Citizens Hall of Fame in 2014. He is the author of over 120 journal articles and book chapters.

    Vivian J. Miller, PhD, MSSA, LSW is Assistant Professor in Social Work at Bowling Green State University and Licensed Social Worker (LSW).

    Additionally, Vivian currently serves as Director of the Optimal Aging Institute (OAI). Vivian has practice experience working with older adults across the care continuum. Vivian’s research extrapolates on her practice experience with a focus in gerontology and social work across three areas:  (1) various factors that facilitate social connection among older adults, such as technology and transportation, (2) social work and social policy to promote the well-being of vulnerable, marginalized older adults (e.g., residents of nursing homes, caregivers, low-income older adults, racially and ethnically diverse older adults), and (3) gerontological- social work education.

    Jennifer Westfall, Aging and Disability Director for Buckeye Hills Regional Council (BHRC), a designated Area Agency on Aging for Region 8 in southeast Ohio, is a graduate of Ohio University with a Bachelor's in Community Health and holds a Master's in Public Health from Southern New Hampshire University.

    Through its home and community-based programs, BHRC's division of Aging serves more than 5,000 older southeast Ohioans annually.  Jennifer serves on the board of the Ohio Association of Gerontology and Education as a representative of rural Ohio and serves as Secretary on the Ohio Association of Area Agencies on Aging Executive Board. In her role at Buckeye Hills Regional Council, Jennifer advocates for legislation and home and community-based services that support the well-being of individuals in Southeast Ohio. Jennifer resides in Marietta with her husband Brian and son Camden.

    Jennifer Carlson serves as the Assistant Director of the Ohio Department of Aging.

    In this role, she drives the development of innovative policy and programs to improve the health, wellness, and safety of older Ohioans. Carlson also serves as chief advisor to the department's director, Ursel J. McElroy. A graduate of The Ohio State University, Carlson has over 30 years of experience in government relations, health policy development and advocacy for Ohioans.

    Marc Molea retired from the Ohio Department of Aging (ODA) in 2019.

    At ODA he served as Chief of the Older Americans Act Programs and Strategic Partnerships Divisions for 24 years. Prior to coming to ODA, he held various planning and economic development positions in Ohio.

    Currently he serves on various the boards, councils and committees, including Board Chair for Prevent Blindness, Ohio Affiliate, Advisory Committee Member for National Center for Vision and Population Health, Dean’s Advisory Committee for Ohio University College of Health Sciences and Profession, and Emeritus Board Member for Ohio Association of Gerontology and Education.

    He has Bachelors of Business Administration and Masters of Health Administration from Ohio University, and a Masters of City and Regional Planning from The Ohio State University. He is a member of the American Institute of Certified Planners (AICP).

    He is recipient of the Soar Award, VANTAGE Aging (2019); Lifetime Achievement Award, Ohio Association of Gerontology and Education (2018); Charles B. Jenkins Legacy Award, Employment for Seniors (2017); and Muriel Bertsch Award, Ohio Association of Senior Centers (2013). He was an Ohio delegate to the 2005 White House Conference on Aging.

    Raymond C. Matura, Ph.D. Professor Emeritus, University of Rio Grande and Board Emeritus of OAGE.

    Doctorate from University of Florida. One of two remaining Board members who were founders, with Dr. Harvey L. Sterns, of OAGE predecessor organization ONECA. Research interests are: Gerontological Policy, Political Gerontology, Family Issues, and History of the Field. Former office holder in OAGE and ONECA.

    Morgan Minyo is a PhD candidate in Adult Development and Aging at Cleveland State University.

    Morgan’s research focuses on understanding and identifying unmet needs and support services for vulnerable aging populations as well as the development and testing of evidence-based programs. Along with her position as a PhD candidate, Morgan is a Research Analyst and Applied Aging Research Fellow in the Center for Research and Education at the Benjamin Rose Institute on Aging.

    Amanda MacNeil is a 5th year Ph.D. Candidate in Adult Development and Aging at Cleveland State University.

    Amanda's research focuses on the connection between various aspects of the illness experience of dementia and well-being outcomes to bolster the ability to live well. Through teaching, research, and advocacy, Amanda is passionate about serving the community of older adults and their caregivers.

    Dabney K. Conwell is the Vice President and Executive Director of Rose Centers for Aging Well at the Benjamin Rose Institute on Aging.

    She is responsible for the oversight of all nutrition and socialization programs within seven senior centers and four home delivered meals programs. To address food insecurity and social isolation amongst older adults living with chronic diseases Ms. Conwell designed Cuyahoga County’s first medically tailored meals program.

    Dr. Van Dussen holds a master's degree in sociology with a focus on aging and medical sociology from the University of Akron.

    He also holds a PhD in Gerontology from the University of Maryland, Baltimore County with a focus on health, medical, and policy aspects of gerontology. His research foci include attitudes and knowledge of hospice and end of life care, predictors of recovery from fractures, and aging related work force issues. He is the Frank and "Nugie" DePizzo Endowed Chair of Gerontology and leads the master of health and human services and long-term care administration program at Youngstown State University.

    Dr. Victoria Steiner is an Associate Professor in the Public Health and Health Education Programs, as well as the Administrative Director for the Center for Successful Aging, at the University of Toledo.

    She did her graduate work in Human Development and Family Studies at the Pennsylvania State University with a focus on adult development and aging. Dr. Steiner is interested in how individuals cope with the challenges they encounter in their lives as they age, including functional decline, chronic illnesses such as Alzheimer's disease and stroke, and caregiving.

    Judge Robert N. Rusu, Jr. is the 20th Probate Judge of Mahoning County.

    He was appointed as the Mahoning County Probate Judge by Governor Kasich on July 8, 2014 and won election to the bench in the November 2014 general election. Judge Rusu brings more than 27 years of Probate experience to the bench. Prior to becoming the judge, he practiced exclusively in the area of Probate Administrations, Guardianships, Estate Planning, Medicaid, and issues regarding aging.

    Judge Rusu is very active in his community. Judge Rusu has served on the “Alzheimer’s Assistance and Referral Network”, the “Mahoning Valley Campfire Council” and past president of the “Canfield Baseball Club” and in 2018 was awarded the “Practitioner of the Year Award” by the Ohio Association of Gerontology & Education. In addition, Judge Rusu is also active as an executive officer with the Ohio Probate Judges Association.

    Meredith Pitt is an assistant professor at The University of Findlay, teaching all courses within the gerontology minor/certificate program.

    Meredith is a licensed social worker in the state of Ohio, focusing her attention on the field of behavioral health. Meredith has three children, is married to her husband, Patrick, and lives in Findlay, Ohio with her two corgis and chihuahua.

    Richard Meeker MSW, LISW-S is currently employed at Area Agency on Aging as a Community Living Supervisor where he supervises the Adult Protective Services program.

    He also works part time in private practice in partnership with Mindful Life in Action as a Mental Health Therapist. Richard earned a Masters Degree in Social Work at the University of Akron and earned a Bachelors Degree of Science from Ashland University.

    Chih-ling (Ling) Liou is an associate professor in the Department of Human Development and Family Studies at Kent State University.

    Dr. Liou’s research interests are aligned with two primary lines of inquiry: (1) community services for older adults and (2) aging attitudes among college students. She has been conducting and publishing research related to adult day service (ADS), one of the community-based services for people with dementia. In addition to ADS, she is interested in understanding college students’ attitudes on aging in order to attract and equip them to serve the growing population of aged individuals.

    Jessica Krok-Schoen is an Assistant Professor in the Division of Health Sciences, School of Health and Rehabilitation Sciences at The Ohio State University's College of Medicine.

    Dr. Krok-Schoen's research focuses on geriatric oncology, cancer survivorship, symptom management, and behavioral interventions among diverse, older adults. She has been a proud member of OAGE since 2017.

    Dr. Katherine S. Judge is a Professor of Psychology and Director of the Adult Development and Aging Doctoral Program in the Psychology Department at Cleveland State University.

    She also is an Adjunct Senior Research Scientist at the Center for Education and Research at Benjamin Rose Institute on Aging. Dr. Judge's program of research focuses on: understanding the illness experience associated with cognitive impairment; developing, implementing, and testing non-pharmacological interventions for individuals with dementia, stroke, and traumatic brain injury and their caregivers; and translating evidence-based intervention and research protocols to fit within existing health care and social service organizations. Dr. Judge teaches a wide range of undergraduate and graduate courses, including Introduction to Psychology, Memory and Cognition, Health Psychology, Mental Health and Aging, Dementia and Caregiving, and Psychology of Aging.

    Shannon E. Jarrott, Ph.D. is a professor of social work at The Ohio State University.

    She specializes in community-based services, therapeutic programming, and research strategies involving older adults with diverse abilities. Current research focuses on intergenerational community building strategies, for which she has received federal funding.

    Since 2016, Salli has been the Executive Director of MemoryLane Care Services, a non-profit organization providing respite and supportive services to families caregiving for older adults and individuals living with memory impairment.

    Salli holds a master’s degree in Social Work and a Certificate in Aging from the University of Michigan and bachelor’s degree in Social Work from the University of Toledo. She has practiced as a social worker in long term care, hospital, mental health and community- based settings. Salli has experience delivering respite care services, implementing and evaluating evidence-based programs, serving in leadership roles in non-profit organizations and as an advocate for caregivers and older adults. She has attended ASA previously.

    As Chief Executive Officer of Western Reserve Area Agency on Aging (WRAAA), Dr. E. Douglas Beach has empirical leadership experience and expertise at the federal, state, and local levels.

    Nurtured in an agrarian environment it naturally followed Dr. Beach would pursue a doctorate in agricultural economics. From North Carolina State University’s campus culture, Dr. Beach returned to Ohio to care for his ailing father; a situation that elicited a newfound passion in a curiously, opposite career discipline: the senior population.

    Dr. Beach had years’ experience advocating for seniors as Ohio Department of Aging's Deputy Director of Programs, when Congressman David L. Hobson (R-OH) engaged him as staff economist to draft major, long-term care insurance legislation. In September of 1999 Dr. Beach became CEO of the Senior Resource Alliance, Florida's most prominent and industrious area agency on aging, prospering the Orlando-based organization's budget from $16 to $25 million. The Senior Resource Alliance became Florida's first Aging and Disability Resource Center (ADRC) and was simultaneously honored as one of the nation's top 10 Information & Referral Systems (IR&S). Opportunity knocked on the door in February 2007 when Governor Charlie Crist tapped Dr. Beach to be Secretary of the Florida Department of Elder Affairs. Although rough economic times ensued, the Department's budget matched in equal measure to meet Florida senior citizens community and healthcare needs.

    In June 2021 Dr. Beach took the helm of Florida’s premier aging provider, the Council on Aging of Volusia County (COA), providing its consumers with traditional Older Americans Act (OAA) services while emphasizing private pay and in-home Medicare services. The Fall of 2014 rounded this illustrious, performance history with CEO acceptance to Ohio’s WRAAA, largest of the state’s 12 area agencies on aging. Dr. Beach’s incisive business acumen, extensive leadership, and in-grained respect for older adults attest to WRAAA’s transformation of an agency on the edge to Ohio’s largest, minority-dominated Area Agency on Aging.

    Tiffany F. Hughes, PhD, MPH is Associate Professor at Youngstown State University.

    She enjoys teaching and researching ways that older adults can maintain brain health and well-being through an active and engaged lifestyle. In addition, she is interested in intergenerational programs that can increase college student interest in working with the aging population. Her work is funded and supported by academic/NIA and community collaborations.

    Joseph Rossi has been Chief Executive Officer of Direction Home of Eastern Ohio, Inc. (DHEO) serving Ashtabula, Columbiana, Mahoning, and Trumbull County since 2010.

    Mr. Rossi holds a bachelor’s degree from Youngstown State University and a master’s degree from The Ohio State University. Mr. Rossi lives in Salem, Ohio with his wife Susan and daughter, Alexis. His wife Susan has a PhD in Higher Education Administration and is an Assistant Dean at Kent State University (Columbiana County). His daughter, Alexis is a junior at Loyola University Chicago studying Biology/Pre-Med.

    Jennifer Kinney, PhD, is a Professor of Gerontology in the Department of Sociology and Gerontology and a Research Fellow with the Scripps Gerontology Center at Miami University.

    Her primary research interests are gerontological pedagogy and how to foster quality of life among people living with dementia. She has taught undergraduate and graduate gerontology courses for over 30 years. Recent course offerings include perspectives in gerontology and a course on gerontological writing for masters and doctoral students.

    Kate de Medeiros, PhD., is the O'Toole Family Professor of Gerontology at Miami University, Oxford, Ohio.

    She is the author or co-author of over 50 peer-reviewed journal articles, four books, and numerous book chapters. She has over 20 years of experience in the field of aging with a special focus on the topics of ageism, living alone, and dementia.