An estimated 40 million family caregivers of chronically ill patients in the United States play a key role in delivering support and care to their loved ones. But they are often overlooked and under-supported.
Chronic obstructive pulmonary disease, more commonly known as COPD, is a serious breathing disorder. It is the fourth leading cause of death in the United States and a major cause of disability. An estimated 16 million people in the United States live with a COPD diagnosis. Millions more are believed to have early symptoms of COPD but have not yet been diagnosed.
People living with COPD often require assistance with various tasks; from managing their medications to keeping their homes safe (especially if they require supplemental oxygen). Caregivers also assist with COPD emergencies, which can be frightening.
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Very often, caregiving responsibilities fall to untrained family members. One estimate says nearly 70 percentof people living with chronic obstructive pulmonary disease (COPD) receive unpaid care from at least one family member. Too often these family members feel overwhelmed and under-prepared for their new role. Research shows these informal family caregivers suffer from high levels of anxiety and depression. As a result, their own self-care suffers as a result of their new caregiving role.
Available resources
Fortunately, there are tools and support solutions available. For instance, under a project funded by the Learn More Breathe Better Program of the National Heart Lung Blood Institute, family caregivers of COPD patients were given a “toolkit.” This taught them more about each of their new caregiving responsibilities.
Caregivers learned how to help manage a patient’s COPD medications, create a safe home environment, watch for symptoms of a serious COPD breathing episode, and be a part of the patient’s overall care team. Finally, caregivers were reminded of the importance of self-care and told not to feel guilty taking some time for themselves. Caregivers in the test group gave the toolkit high marks for helping them understand COPD and their new caregiving role. One caregiver said she only wished she received the toolkit when her husband was first diagnosed with the illness.
Further testing is underway to document the health benefits of the toolkit for caregivers and the patients they support.