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The impact of the third 21st chromosome plays out across the lifespan with surprises to navigate from communication to dementia. Yet with person-centered circles of support, people with Down syndrome and their families create a world in which they are in command and find joy despite those challenges. We are constantly learning more about specific health-related challenges for people with Down syndrome that can dramatically improve their quality of life and health.
In this webinar Joan Guthrie Medlen, MEd, RDN, Lester Y Rosenzweig, MS, RDN, CDN, FAND, and Catherine Conway, MS, RDN, CDN, CDECS will share key points they have learned using thorough research and practice to support nutrition-related concerns for people with Down syndrome, their families, and those who support them from birth to death. Joan, Lester, and Cathy are a passionate trio. There is no way they could go into the detail they would like. Therefore, consider this a slice of what is possible and what is still being learned.
This session will focus on the nutrition-related concerns for individuals with Down syndrome across the lifespan. The manifestations of and interventions for the feeding relationship, gastrointestinal issues, aging, and dementia, and Alzheimer's disease will be discussed.
CPEU: 1.5
CPE Level: 2
Performance Indicators: 4.1, 10.1, 10.2
Learning Objectives
- Identify nutrition-related concerns for individuals with Down syndrome across the lifespan.
- Locate, interpret, and apply healthcare guidelines for children and adults with Down syndrome.
- Apply the trust model for feeding children with Down syndrome.
Speakers
Joan Guthrie Medlen, MED, RDN
Joan Guthrie Medlen is a registered dietitian who focuses her work on individuals with Down syndrome and related disabilities, their families, and those who support them. She is the author of “The Down Syndrome Nutrition Handbook: A Guide to Healthy Lifestyles”, and participated in the creation of Health Care Guidelines for both adults and children with Down Syndrome. She is co-author on peer reviewed articles on the topic and has received multiple awards recognizing her work with people with Down syndrome including The BHN Excellence in Practice Award, The Theodore Tjossem Award in Research and the Meritorious Service Awards from the National Down Syndrome Congress and the Public Advocacy Award from the College of Human Ecology, Kansas State University. Joan lives with her husband and adult son who experiences multiple disabilities, including Down syndrome, in Portland Oregon.
Lester Y Rosenzweig, MS, RDN, CDN, FAND
Lester Rosenzweig (Les) is presently a consultant for Living Resources, Inc. serving individuals with developmental disabilities in group settings. He has set up a menu planning and recipe system, does nutrition therapy for individuals and their caregivers, and provide training to nursing and residential staff. He does similar work with Alternative Living Group, Inc. He also works part time for Cornell Cooperative Extension, Schenectady County for the Senior Nutrition Program. In addition, he provides nutrition therapy for Marquis Certified Home Health Care and consultant services for Lifepath, Inc., a senior services agency in Albany. In 2013-14 he was the nutrition director or the program.
Prior to working at the Center, Les was Public Health Nutritionist for 20 years. First with the State Office for the Aging and then the Department of Health Child and Adult Care Food Program. He had been a long-time member of the Healthy Aging DPG, holding many positions there. He has authored and co-authored a number of articles (including peer-reviewed journal articles) on nutrition services for older adults and more recently addressing the older IDD population. A number of articles have been shared with both Practice Groups.
Les, a registered dietitian/nutritionist, received his Master of Science Degree in Health Services Administration with a minor in Health Education from the Sage Graduate School at Albany, New York and his bachelor’s degree in clinical dietetics from the University of Connecticut, Storrs.
Catherine Conway, MS, RDN, CDN, CDCES
Catherine Conway has worked with population at various agencies for over 25 years. She has created special programs including trainings targeted for this population in aging, weight management, diabetes, choking prevention, and creating appetizing puree foods. She is a Registered Dietitian/Nutritionist and a Certified Diabetes Care and Education Specialist. Cathy has worked with Intellectual and Developmental Individuals, including Down Syndrome for over 25 years. She works in clinics specializing in care for IDD individuals, as well as in group homes, day programs and for over 10 years has facilitated diabetes and weight management groups with this population. She supervised a $100,000 grant at another IDD agency to start diabetes groups. She has created DVD training modules on Healthy Habits for a Healthy Life, Working with Seniors, and Choking Prevention. Prior to her work with IDD she was a Senior Center Director and worked for the New York City Department the Aging. She is currently involved in aging and dementia for the IDD population working on ECHO grants with the Rhode Island University and Virginia Commonwealth University Geriatric Centers. She recently started working with National Task Force on Intellectual Disabilities and Dementia Practices (NTG) on updating nutrition fact sheets. She is a co-author of the updated Standards of Practice and Standards of Professional Performance for Dietitians working with Intellectual and Developmental Disorders (Dec 2020). Cathy is the recipient of the BHN DPG Excellence in Practice in IDD for 2015. She has served on New York State Surrogate Decision Making Committee since 2001.