Pause a moment and think about the social activities you enjoy. Now ask yourself—how many of them involve eating or drinking? There’s a good chance that many or all of your favorite occasions include food or drink in some form, such as dinner with friends, after-work drinks with coworkers, holidays with family…
Food is an important social tool. It’s shared popcorn at the movies, champagne toasts at weddings, pizza after the big game, and chicken soup for your sick friend. It’s how we as humans celebrate, how we develop and maintain relationships, and how we take care of each other.
So what happens when that tool is no longer available to you?
The Consequences of Post-Stroke Dysphagia Management
Dysphagia is a common and, for some, persistent consequence after stroke, often resulting in some modification of diet. Alterations in food texture and modifications of liquid consistency are commonly implemented to reduce choking risk, improve oral bolus management, decrease aspiration, and improve pharyngeal transit.
These are, of course, all very important goals, but these interventions are not without consequences. Eckberg, et al., surveyed individuals with dysphagia and reported that while the majority of patients with dysphagia felt that eating should be “an enjoyable experience,” fewer than half of those surveyed reported that it actually was.1 A number of researchers have identified that people with dysphagia are more likely to avoid eating with others, avoid eating or drinking in public, feel embarrassed at mealtimes, feel isolated, and report that life is less enjoyable overall.2, 3, 4
And what about the caregivers?
When family members of people with dysphagia are asked about the impact of their loved one’s swallowing disorder, they report eating alone more often, eating less, and feeling isolated. They worry about food preparation, they feel guilty about eating foods their loved one can’t, and they feel conflicted about trying to keep their loved one safe by denying them the foods or drinks they know they would prefer.5, 6
3 Recommendations for Quality of Life with Dysphagia
These are certainly not the outcomes we would hope for as dysphagia clinicians. So how can we help?
1) Regular Reassessment
Since patients with dysphagia after stroke often recover swallow function over time, it is important to perform regular evaluations, advancing diets as swallow function improves. Vigilance is required to ensure that our patients aren’t prescribed a diet that is no longer appropriate and may be more restrictive than is necessary.
2) Discuss Benefits and Risks
Our patients and their caregivers are entitled to frank discussions about diet recommendations. We often focus on the benefits of our recommendations, such as swallow safety and reduced likelihood of aspiration, but we are not always as forthcoming about the risks of following our prescription.
Let’s talk about the health and social consequences of dietary modifications and restrictions so that patients and their family members can not only be more prepared, but can also seek out appropriate assistance.
3) Provide Supports
Caregivers often report dwindling assistance from health professionals as disability persists. Connecting families to each other through networking, support groups, and online resources can decrease the feelings of isolation that so many of our patients and their caregivers experience.
“What’s sad about not eating is the experience, whether at a family reunion or at midnight by yourself in a greasy spoon under the L tracks. The loss of dining, not the loss of food.” — Roger Ebert, 2011
- Ekburg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., & Ortega, P. (2002). Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia, 17(2), 139–46.
- Farri, A., Accornero, A., & Burdese, C. (2007). Social importance of dysphagia: its impact on diagnosis and therapy. Acta Otorhinolaryngologica Italica, 27(2), 83–86.
- Watt, E. & Whyte, F. (2003). The experience of dysphagia and its effect on the quality of life of patients with oesophageal cancer. European Journal of Cancer Care, 12(2), 183–93.
- Loew, L. P., Huckabee, M.-L., Anderson, T., & Beckert, L. (2010). The impact of dysphagia on quality of life in ageing and Parkinson’s disease as measured by the swallowing quality of life (SWAL-QOL) questionnaire. Dysphagia, 25(3), 216–20.
- Patterson, J. (2015). Value of qualitative research in dysphagia in the head and neck cancer patient population—the caregiver’s perspective/experience. Perspectives in Swallowing and Swallowing Disorders, 24(3), 107-114.
- Johansson, A. E. M. & Johansson, U. (2009). Relatives’ experiences of family members’ eating difficulties. Scandinavian Journal of Occupational Therapy, 16(1), 25–32.