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Weekly Tips & Insights

The Declining Health Journey For Those With IDD: A Family's Story

Caring for a sick loved one as they experience significant health decline is difficult, but things can get even more complicated when that sick loved one has intellectual developmental disabilities (IDD). Depending on their mental capabilities, caregivers may not even be able to fully involve sick loved ones in critical decisions about their own care. Though there are some challenging aspects to this particular type of caregiving journey, there are various approaches that can help you feel at ease along the way. In this article, we’ll provide some information and guidance to help you navigate caring for a loved one with IDD.

Guiding principles for working with someone with IDD

Though it’s necessary to acknowledge the various challenges an individual with IDD may deal with, it’s important to understand that each person’s situation is different and should be addressed in a personalized way that’s specific to their needs. The American Association of Intellectual Developmental Disabilities (AAIDD) outlines four principles that it recognizes as guiding principles for disability as they relate to care:

  • Dignity: despite quality of life or severity of illness, everyone’s life possesses an inherent value.

  • Respect for Autonomy: caregivers should always make their best efforts to identify and honor the wishes of their sick loved one.

  • Life: caregivers should act in the best interest of the individual with IDD, which is to strive to “promote and protect” their life.

  • Equality: the necessary tools and resources for those with IDD should be available and provided without discrimination.

These are just some guiding principles that caregivers and healthcare providers should be aware of when caring for someone with IDD.

Involving your loved one in important health discussions

In leading important health discussions with a sick loved one, it’s important to acknowledge the various challenges their IDD may present, while still acknowledging their autonomy and feelings. Contrary to common misconceptions, those with IDD share the same emotions as those without disabilities, and even without necessarily being able to fully grasp complex concepts like chronic illness or death, they often experience grief and loss.

There may come a time when you may feel it necessary to discuss your loved one’s end-of-life journey with them. These kinds conversations are hard enough, but they can be especially challenging for caregivers struggling to broach the subject to their sick loved ones with IDD. To help with those conversations, visit educational resources like this one, which is solely dedicated to teaching others how to discuss the end-of-life journey with those who have IDD. On the other side of things, some caregivers may feel it best not to discuss these things with their sick loved one with IDD. At the end of the day, caregivers know their sick loved one best, and are well-suited to make the decision that is ultimately best for their overall well-being.

Insights from a family with a loved one with IDD

We recently spoke with our Hospice Director, Carol Emmerich, RN, and her sister Kathey Durbin, as they share their journey caring for their younger sister, Liz, who has IDD. Watch their story below:

For more questions about caring for a loved one with IDD, contact Carol Emmerich at (314) 918-7171 or

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