Promotion of a healthy swallow is often front and center in treating dysphagia…but the cultural and personal importance of dining out cannot be understated.
Dysphagia is a chronic condition that occupational therapy can have an important, empowering role in. Eating is one of the most essential occupations, rich with social and cultural meaning. Whether it is celebrating a holiday or meeting up with friends you have not been able to see in a while, eating and drinking is always front and center. Research from the University of Oxford in 2017 indicated that the more often people eat with others, the more likely they are to feel happy and satisfied with their lives. People with chronic dysphagia not only experience difficulty swallowing, but they also experience social isolation and decreased opportunities for social participation due to their food and liquid texture limitations.
In fact, Pizzorni (2017) identified that people with chronic dysphagia stated psychological consequences were the most relevant complication.
When we are helping someone rehabilitate their swallow, there tends to be a focus on the swallow itself and not all the other things surrounding mealtimes. While many facilities have dining room programs for people with dysphagia to improve compliance and carryover of compensatory strategies with the added bonus of socialization – patients still have to overcome the many challenges associated with dining out with chronic dysphagia.
So what does all of this mean for you – the treating occupational therapist?
In occupational therapy, we need to adjust our thinking when it comes to treating dysphagia–removing our ‘aspiration’ blinders and looking at the whole person in order to prioritize patient-centered goals of care. Aspiration is just a small piece of the chronic dysphagia management puzzle.
Pizzorni (2017) suggests leaning into the multidisciplinary approach to treatment and management of dysphagia with family and caregivers heavily involved. Periodic evaluations, skill-building programs and promotion of positive coping mechanisms were also identified as key implications for clinical practice.
Now- I know what you may be thinking… “This is all great information, but specifically how can we, in occupational therapy, further empower patients with dysphagia to take the leap of eating and drinking in a restaurant again?”
The following five tips will give you a strong starting place to facilitate your practice and improve your patients ability to engage as normally as possible
1. Let’s start with revisiting an old friend…the occupational profile (OP).
The OP is something we as practitioners had plenty of experience working with in grad school that somewhat, reasonably so, falls to the wayside as we grow used to how we prefer our evaluations and patient interactions to go. But the OP is a fantastic tool for getting the entire picture and genuinely understanding the patient’s goals, setbacks, fears and strengths–all things we will need in order to tackle returning to dining out. Key things to identify may include the following, but do not be shy to branch out and dig in!
|Where your patient specifically likes to eat out and what food items they typically order. Are they interested in returning to a particular meal?|
|Who your patient would like to feel comfortable eating out with again–is this person someone who would also benefit from education?|
|What concerns does your patient have about dining out with dysphagia?|
|What skills, compensations, and adaptations have already been successful for your patient? Unsuccessful?|
|How can you best prioritize your patients goals regarding returning to dining in a manner that is socially, culturally and personally satisfactory?|
2. Plan the dined-out meal ahead of time.
This will require involving the patient’s family and caregiver, especially if there are co-morbid cognitive considerations that may potentially increase the challenge. Making a plan for the dined-out meal can reduce both patient and caregiver anxieties about what the meal-time experience will look like in general and increase confidence that the restaurant chosen is a good fit for the patient as they are starting their return to dining out.
Writing a list of items that need to be completed prior to “dine out” days can further alleviate anxieties involved in taking this leap. List items can include things such as: pack thickener, get gas, call for reservations and ensure accessibility. Any item that needs to be completed prior to leaving the house for any reason can be added to the list–customizing it to the patient’s needs will be easier with your completed OP.
3. Preview the menu.
Previewing the menu is another great way to reduce anxiety surrounding the initial foray into dining out. If there is not anything that is going to come out the kitchen with the appropriate texture to suit the patient’s needs, be sure to plan how it can be altered to fit the prescribed diet texture. Also, be sure to prepare and pack the appropriate cutlery to alter the chosen food and liquid items. Not all restaurants will have the type of cutlery needed to ensure the food is altered appropriately. Have a few choices in mind in the event the first choice is not available. There always needs to be a plan A, B, C, D etc…
4. Start small.
Your person’s first foray into dining out does not have to include a four-course meal complete with a palate cleanser between each course. Encourage them to choose a small, local place at a time that is not traditionally busy. Encouraging these small steps will help ease the patient back into dining out again and help them better navigate the unexpected hurdles that may pop up.
In addition to picking a small place to start, only have one or two other people accompany the person. Going out with a large group can be overwhelming and cause unnecessary anxiety–especially for a patient that is not confident in how their experience will go. Remember that dining is a very social activity–one small misstep could make your patient feel isolated moreso than they already were. Once the patient is in a good dining out routine and comfortable eating in public, the amount of fellow diners can naturally increase.
5. Have a ‘back-up bag’ packed.
A back-up bag is just that – a bag full of backup food and liquid items in the event what is ordered is unable to be altered to the appropriate texture. There are plenty of cooler bags on the market that look like a regular handbag that will keep items cool for an extended period of time. In your back-up bag, not only can you can keep back-up food and liquid items, but other essential back-up tools including adapted utensils, thickener, clothing protectors, and back-up clothing items. It never hurts to be over prepared especially if it is the first time dining out, or dining out at new place. This will again reduce fear surrounding what will happen if the patient is unable to eat and increase overall confidence in the experience.
The suggestions listed here are merely a starting point for empowering people with dysphagia to dine out.
There is no ‘cookie cutter’ approach when it comes to managing chronic dysphagia in occupational therapy. Taking the extra time to tailor your approach and plan will not only lead to better clinical outcomes and confidence, but it will also lead to better life participation in the people you work with. Per Dunbar (2017) people who eat often with others might be expected to have larger social networks and be happier and more satisfied with their lives, as well as being more engaged with their communities. The more you empower the patient with chronic dysphagia you work with to dine out with others, the higher the potential for them to have much more fulfilling lives.
Dunbar also suggests not only may social dining have implications for how many friends one has, but also this is in turn likely to have significant consequences at the level of individual health and welfare, adding further significant fitness benefits. Being able to meet friends for a celebratory drink on a Wednesday evening may seem like an insignificant event in the grand scheme of things, but take a moment and reflect on how you would feel if you were unable to do so due to a chronic condition.
For more information on dining out with dysphagia, please visit The National Foundation of Swallowing Disorders. They not only offer education and resources, but in person and virtual support groups for people living with dysphagia.
For more information about the social and ethical implications for dysphagia management- perfect for occupational or speech therapy practitioners- check out ARC Seminar’s 0.3 ASHA/AOTA CEU, practical short course “Life with Dysphagia: Breaking down social and ethical barriers”.
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