Caring for Caregivers

Screen yourself for caregiver burden

• Based on your own unique experiences caring for a person with a swallowing disorder, please complete this checklist that explores the functional changes and emotions that you have had over the past month. See The Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) to answer yes/no questions regarding if a situation has bothered you or been true for you. This was created and generously shared by Dr. Samantha Shune of University of Oregon and Dr. Ashwini Namasivayam-MacDonald of McMaster University in Ontario, Canada.
• Based on your results of CARES, reach out to the speech-language pathologist who is working with your loved one/person with dysphagia. If these statements of caregiver burden are true for you, please reach out to the medical and mental health professionals involved.

Seek professional support

• If you’re feeling overwhelmed, speak to your primary care physician. They may refer you to a social worker, psychologist, and/or counselor who can help you work through your emotions and offer additional resources and support.

Don’t hesitate to reach out to clinicians and healthcare providers

• Uncertainty can add additional stress to your life. If there’s something in your care recipient’s treatment plan that you’re unsure of, reach out for clarity! Caregivers should also ask about resources to help guide them in their role.

Lean on your social networks

• Caregiver burden research has shown that caregivers benefit from support from their social networks; It’s important that caregivers connect with family and friends outside of the home (or virtually).

Advocate for dysphagia evaluations that include instrumental testing

• Tests such as videofluoroscopic swallow studies (VFSS) or fiberoptic endoscopic evaluations of swallowing (FEES) can help you learn more about your loved one’s dysphagia and aspiration risks. Attend these appointments, watch the studies, and ask questions to get a more complete understanding of your loved one’s condition. Learn if exercises could rehabilitate the swallow function and what strategies compensate for the problem to improve safety and quality of life.

Converse with the medical team and ask for education that suits you best

• Don’t be afraid to ask questions and request time for sit down conversations with the medical team. As a caregiver, you and your loved one are part of the medical team. When learning, ask the healthcare professionals for information in a way that’s easiest for you to digest (e.g. via a professional interpreter and using visuals to aid in understanding). Make sure your healthcare provider gives you recommendations in writing and without too much jargon, as it’s hard to remember everything while you’re doing so much.