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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 Manager’s Guide is designed to help managers work with staff members as they learn to use Support for Older People with Intellectual Disability: A Manual for Promoting Health. Managers can use this guide to assist staff in supporting older people who are experiencing health problems. The Manager’s Guide can help to orient new staff, to guide conversations with staff about older people with health conditions, and to assist staff who might be concerned about resident health conditions.
What does the toolkit contain?
This Manager’s Guide has several components:
- Suggestions for using the Support for Older People with Intellectual Disability: A Manual for Promoting Health.
- Case studies that walk staff through problems commonly experienced by older people.
- Suggestions on how to best support residents.
The case studies are based on real experiences of people living in group homes. Each has two parts:
- A case study for support staff that includes questions to consider; and
- A manager’s version of the case study that includes questions and suggestions to guide discussions with staff.
- This toolkit was designed for United States audiences, though much of the content is applicable internationally.
How should these tools be used?
Supporting people with chronic health problems can be challenging. When everyone is working together, things go much more smoothly. This requires clarity about what can be done to help support residents with health conditions, what the organization’s commitment is, and who is responsible for what.
Managers can review one chapter at a time with staff. For example, ask staff members to read the first section of Support for Older People with Intellectual Disability: A Manual for Promoting Health on normal changes as a person ages. Discuss whether staff see these changes and how the changes might be experienced by residents. Each of the first four manual chapters is very short; they could even be read out loud during meetings. Discuss how staff can use the information to support specific residents.
Development of this toolkit
The Support for Older People with Intellectual Disability: Manager’s Guide 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. Support was also provided by the Clinical and Translational Science Award (CTSA) program, through the National Center for Advancing Translational Sciences (NCATS), grant UL1TR000427. 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: Manager’s Guide. Center for Aging Research and Education, UW–Madison School of Nursing. Madison, WI; 2024. Available at: http://www.hipxchange.org/toolkit/older-people-id_manager
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.