How can I communicate effectively with health care providers? What does healthy aging look like? How can I safely stay in my home?
These are important questions for anyone. For the growing number of older adults with intellectual disabilities (ID) and their caregivers, they are crucial.
More people with ID are living longer, thanks to better care throughout their lives. In 1965, the life expectancy for people with ID was only 28 years. Today, it’s similar to that of the general population. By 2030, 1.2 million people with ID will be age 60 and older in the United States—nearly double the number in 2000.
Older adults with ID face unique health challenges. They often experience age-related health changes earlier in life, have difficulty interacting with health care providers, and receive less age-appropriate screening and preventative care.
Based on their research over the last decade, CARE director Barb Bowers, PhD, RN, FAAN, Kim Nolet, MS, and their Australian colleague Ruth Webber, PhD (whose collaboration was profiled in our winter 2014 issue) developed workshops and training materials for group homes on aging with an intellectual disability.
The training program is designed to help staff identify treatable conditions early and ensure that people with ID get the help that they need. This not only improves their health and quality of life, it also prevents their being unnecessarily or prematurely placed in nursing homes.
The following Q & A is drawn from “Support for Older People with Intellectual Disability: A Manual for Promoting Health,” which CARE’s Bowers and Nolet developed for U.S. audiences, in collaboration with the University of Wisconsin–Madison School of Nursing, UW Institute for Clinical and Translational Research and LaFollette School of Public Affairs. The Wisconsin Department of Health Services is offering the manual as the state’s first training program for assisted living, group homes and adult foster care.
Q: What medical conditions are common among older adults with ID?
A: People with ID are more prone to certain medical conditions than the general population. Higher rates of brittle bones, diabetes, heart disease, and vision and hearing loss make aging difficult for people with ID and their caregivers. People with certain types of ID may age prematurely. For example, those with Down Syndrome develop age-related conditions earlier in life. People with Down Syndrome also have a greatly increased risk of developing dementia, including early-onset Alzheimer’s.
Q: What other factors can affect the health and well-being of older adults with ID?
A: People with ID are less likely than other older adults to have adult children to help with their care. Their parents may no longer be alive and their siblings are frequently unprepared to assume caregiving responsibilities. People with ID often have difficulty communicating about health problems or symptoms. They may have less reliable access to health care services, and their caregivers may not know what information is important to share with health professionals. Some health care providers do not sufficiently understand the needs of people with ID.
Q: What can I do to help people with ID receive quality health care?
A: It is important for people with ID to have a familiar person accompany them to medical appointments. Bring information about their health history, details of current symptoms, a list of medications, and their assistive devices, and inform the health professional about their fears and things to avoid. It may also be helpful to schedule a longer appointment, so communications are not rushed.
If you are a health care provider caring for a person with ID, try to get their attention before speaking by making eye contact, touching them or saying their name. Use simple words, sentences and concepts. Avoid jargon. Ask questions, and allow at least ten seconds for them to reply. If they seem not to understand, rephrase your question. As you speak, also use body language, such as signs, gestures, facial expressions and demonstrations, to make your meaning clear. Don’t shout.
Q: How can people with ID participate in their health care?
A: People with mild to moderate ID are able to make or participate in many decisions. Even when a final decision must be made by others, the person with ID should always have some input. Beforehand, discuss with others who know the person with ID well which decisions they can make on their own, which they need guidance with, and which they can participate in. For example, if an older adult with ID needs to be vaccinated for influenza, the person can decide for her or himself where and when to receive the shot, and who will accompany them.
People with ID can participate in discussions about upcoming medical procedures. Being able to talk about what will happen, ask questions and express concerns is very helpful. One study of people with ID who had scheduled hospital admissions found that those who had visited the hospital, met the staff, and saw where they would be did much better than those who did not have the opportunity to do so.
Free PDFs of the ID manuals are available via the CARE website. Barb Bowers and Kim Nolet are leading one-day train-the-trainer workshops on “Intellectual Disability: Understanding Changes as We Age.”