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Background
People with intellectual disability (ID) are living longer than ever before. Advances in medical technology, social support, and healthcare programs for people with ID have increased life expectancy. It is now common for people with ID to live well into old age.
People with ID have higher rates of certain medical conditions than would be found in the general population. Higher rates of brittle bones, cancer, heart disease, and vision / hearing loss make aging difficult for people with ID and their care partners. People with certain types of ID may age prematurely. For example, those with Down Syndrome develop age-related conditions much earlier than most other people.
Advancing age brings with it the same health concerns that all older adults experience, in addition to any disability already present. Aging is accompanied by predictable changes in physical functioning and general resilience. Some conditions can be prevented. Others can be treated, resulting in improved health overall and better quality of life.
As people age, they usually remain in their home as long as they are able, often with support from family members and health and community services. People with ID are less likely than other older adults to have adult children who could help. Parents may no longer be alive. Siblings are often unprepared to assume caregiving responsibilities. Staff in group homes, where people with ID may live, often feel unprepared to support people as they develop age-related health conditions. As a consequence, people with ID may be prematurely relocated to nursing homes, resulting in loss of important relationships and likely diminishing quality of life.
Who should use this toolkit?
This toolkit is intended to help group home staff and other care partners support people with ID as they age. It provides tools to help caregivers to understand common symptoms and conditions and will help caregivers to communicate with health care professionals, to advocate for care and to comfort the older adult, to keep older people active despite the development of health conditions, to prevent disability and discomfort, and to keep older people in their own home as long as possible.
What does the toolkit contain?
This toolkit includes information on several topics important to the health of older adults with ID, worksheets for gathering information that will help primary care providers determine what might be causing a decline in health, and tips for supporting people with chronic health conditions. It describes normal changes as a person ages, common age-related health conditions, and advice for group home staff and other care partners on working with healthcare providers, involving older people with ID in medical decisions, and providing end of life care. This manual includes resources specific to Wisconsin, though much of the content is applicable for audiences across the United States and internationally.
How should these tools be used?
The materials in this toolkit can be used to help group home staff and other care partners:
- Understand normal changes as a person with ID ages
- Build successful partnerships with healthcare providers
- Advocate for the involvement of older people with ID in healthcare decisions
- Understand end-of-life care needs
- Understand and communicate with healthcare providers about common signs and symptoms
- Support people with ID who are experiencing common age-related health conditions
Development of this toolkit
The Support for Older People with Intellectual Disability Toolkit was developed by researchers and clinicians (Principal Investigator: Barbara J. Bowers, PhD, RN) at the University of Wisconsin-Madison School of Nursing.
In addition to co-authors Bowers and Nolet, contributors to this toolkit include Ruth Webber, PhD; Christine Bigby, PhD; Eleanore Stumm, MS, NP; John Chesterman; Kristen Czarny; Bo Kim; Jacqueline Nelson; Kristin Pecanac, RN, PhD; Kelly Planton; Katie Stodola; Sigan Hartley; He Yu; Julie Wilmot; and Erica Schoot, MPA.
This toolkit was prepared as part of a project funded through the Australian Research Council (ARC) Linkage Program, University of Wisconsin-Madison School of Nursing and Gill Family Foundation. The project was supported by the Clinical and Translational Science Award (CTSA) program, previously through the National Center for Research Resources (NCRR), grant 1UL1RR025011, and now by the National Center for Advancing Translational Sciences (NCATS), grant 9U54TR000021. Additional support was provided by the University of Wisconsin School of Medicine and Public Health’s Health Innovation Program (HIP), the Wisconsin Partnership Program, and the Community-Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR), grant 9 U54 TR000021 from the National Center for Advancing Translational Sciences (previously grant 1 UL1 RR025011 from the National Center for Research Resources). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or other funders.
Please send questions, comments and suggestions to HIPxChange@hip.wisc.edu.
References
Bowers, B., Bigby, C., & Webber, R. (2009). Intellectual disability and ageing. Interdisciplinary care of older people: Issues and innovations. Sydney, Australia: Elsevier, 60-77.
Toolkit Citation
Bowers BJ, Nolet K. Support for Older People with Intellectual Disability: A Manual for Promoting Health (Wisconsin edition). Center for Aging Research and Education, UW–Madison School of Nursing. Madison, WI; 2024. Available at: http://www.hipxchange.org/toolkit/older-people-id_wi
About the Authors
Barbara Bowers, PhD, RN, FAAN is an Emerita Professor of the UW–Madison School of Nursing and the founding director of the Center for Aging Research and Education. She conducts research with frail older adults in both community and residential settings. She is interested in how public policies, organizational practices and models of care delivery influence quality of care and quality of work life for caregivers. Her interest in work life quality for workers in long term care systems has led her to examine causes of staff turnover, the relationships among organizational structure, organizational culture, management practices, and care outcomes, and to explore ways to improve the effectiveness of staff development. Her work with informal caregivers at home has led to the development of tools to support caregiver decision making. She is currently on the boards of the Advancing Excellence in Long Term Care Collaborative, Capitol Lakes Foundation, and Metastar, and on the national steering committee of the Moving Forward Nursing Home Reform Coalition.
Kim Nolet, MS is a Research Implementation Manager at the UW–Madison School of Nursing. Her work includes workforce development strategies that support older adult health and well-being. Through research, outreach program development, and professional presentations, she supports long-term care providers’ efforts to improve quality of care. She helped develop the Geri-Res nurse residency program.