The National Foundation of Swallowing Disorders (NFOSD) recently hosted a webinar on “Dysphagia’s Broader Impact on Caregivers & Families,” led by Samantha Shune, PhD, CCC-SLP and Michele Vandehey, MS, CCC-SLP. Dr. Shune is an assistant professor at the University of Oregon whose research and clinical interests include the effects of healthy and pathologic aging on swallowing and the mealtime process. Michele is an acute care speech-language pathologist and daughter of a stroke survivor with severe dysphagia to whom she provided care and support for nearly 20 years.
Current Caregiving Landscape and Caregiver Burden
To begin, Dr. Shune described her research objective: moving from a static image of the dysphagia assessment and putting that impairment within the whole person as well as within the family.
Dr. Shune went on to explain the current healthcare system as it relates to caregiving. As one slide read, “Our healthcare system relies on the efforts of informal caregivers. Such unpaid caregiving saves the American healthcare system approximately $350 billion annually.”[i] Dr. Shune observed that while the healthcare system benefits from the efforts of these caregivers, it tends to focus more on the individual patient and the illness and not on the family. However, the physical health and the quality of life of both the caregiver and care recipient are interdependent.[ii] If the caregiver is struggling, Dr. Shune said, the patient will struggle – meaning that in order to provide the best outcomes, healthcare providers need to consider the wellbeing of not just the patient, but also the wellbeing of the patient’s caregivers and families.
It’s been cited that family members of individuals with dysphagia experience increased feelings of anxiety, burden, distress, fear, frustration, sadness, and isolation; a loss of social bonds; and a decreased life satisfaction and quality of life.[iii] What’s more, Dr. Shune went on to explain that dysphagia independently contributes to increased burden among informal caregivers of older adults – making it even more important for early identification and treatment as well as better caregiver supports.
To do so, Dr. Shune recommended a paradigm shift: “Chronic illness and disability are universal human experiences that fundamentally alter the everyday lives and psychosocial wellbeing of the entire family. As individuals experience healthcare challenges, their entire family system simultaneously has to adapt and cope.”[iv]
Fostering Improved Caregiver and Patient Outcomes
To illustrate the effects of dysphagia on the entire family, Michele provided a firsthand account of her father’s stroke and resulting dysphagia. For two-thirds of her life, she lived with someone with severe dysphagia, and as a young child she struggled to relate to her peers and felt increased social isolation. With her unique perspective as a child of a man with dysphagia and now, as a speech-language pathologist herself, Michele offered tips for both families and clinicians.
How the family itself can foster improved outcomes:
- Find a new normal. Establishing a routine is helpful, as is making modifications to what you once did, such as finding new restaurants where the family is comfortable, or hosting parties and events at home instead of going out.
- Recognize that the person is still a human and is not defined by his or her dysphagia. “Dysphagia shouldn’t prevent people from living their lives; it might just look different,” Michele said.
- Focus on quality of life, and find humor in it. Take some appropriate risks, if possible, to allow the person with dysphagia to continue living his or her life.
- Prioritize mental health. Seek counseling if needed, and take time for yourself apart from caregiving.
Perspectives for professionals to consider:
- Understand the person with dysphagia holistically, and focus on patient- and family-centered care. Ask questions such as, will this patient follow through? Are these recommendations realistic? Are we setting patients and their caregivers up for success?
- Assess the risks, and find a balance between physiology and behavioral approaches to dysphagia.
- Educate the patients and their families, and have the tough conversations. Prepare them for what is to come.
- Be the bridge for counseling services, and remember that we are interacting with these families on the toughest days of their lives. Everyone is grieving.
For more insight from Dr. Shune and Michele, watch the complete recording of the webinar on the NFOSD’s website.