The Invisible Patient

Written by Heather Kalso MA, LMSW at Hospice of Lansing

The “invisible patient”, a term used to describe any caregiver of an individual with a chronic or life-limiting illness. Often, the traditional medical model in the United States provides inadequate support for the psycho-social impacts of caring for these patients long-term.  These caregivers are overlooked, and their needs often go unnoticed and untreated.

In the United States, there are an estimated 43.5 million “invisible patients.” Of those 43.5 million, 34.2 million are providing care for those aged 50 or over.  The average age of unpaid caregivers in the United States is 49 years old.  The typical high hour caregiver (21 hours or more a week) provides care for an average of five years, and expects to be providing care for another five years.  These caregivers are providing assistance with ADLs (activities of daily living such as bathing and dressing), as well as IADLS (like running errands or managing finances).  They are also conducting medical or nursing tasks like managing medications, providing wound care, and giving injections.  These caregivers, in addition to all these other tasks, also work full time.

So, what can we do to support and care for our caregivers? Only one-sixth of the caregivers in the above study were asked by a medical professional what they need for themselves.  Eighty-four percent of caregivers reported that they could use more information and help about caregiving topics, such as keeping their loved one safe at home, managing their own stress, managing their loved ones challenging behaviors, and dealing with incontinence or toileting issues. However, many reported frustration regarding where to get assistance and information on these topics.

It is our aim at Hospice of Lansing to use this blog to help educate caregivers and others in our community about resources, provide tips on common issues that caregivers face, and use it as a platform to discuss hospice and palliative care. We will post on a weekly basis, and we want anyone reading this blog to feel free to email with recommendations for topics, questions that you may have been hesitant to ask, end-of-life issues you want to know more about, and comments or suggestions.  When we include statistics in our posts, we will provide you with citations so you can see where the information is coming from.  We will also utilize our staff and volunteers’ knowledge and wisdom in the hope that our experiences help and support the caregivers in our community.

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