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.

Check out the ‘Say This Not That!’ Cheat sheets here to make communication about altered diets easier for everyone!

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.

 

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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.

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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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It’s critical for clinicians and caregivers to know how to competently and compassionately approach dysphagia, so patients can safely receive adequate nutrition, hydration, and care. However, given the complexity of swallowing disorders, ethical challenges are not uncommon.

As clinicians, we know that there is much more to dementia than just forgetting where you last left your keys or remembering when your next doctor’s appointment is.  It’s important to remember that dementia is a decline in cognitive functioning beyond what might be expected from normal aging, and is not part of the normal aging process. The prevalence of swallowing disorders in persons over the age of 65 ranges from 15 – 23%.  That percentage increases to 40-50% if that person is a long-term care resident. Clearly – dementia and dysphagia have a complicated relationship!

The World Health Organization (WHO) estimates that 55 million people are currently living with dementia and that there are an estimated 10 million new cases per year.  Dementia is the seventh leading cause of death, and has physical, emotional, economic, and psychological impacts on both people living with dementia, and their caregivers.  The prevalence of swallowing disorders in persons over the age of 65 ranges from 15 – 23%.  That percentage increases to 40-50% if that person is a long-term care resident.  More specifically, the prevalence of dysphagia in a person with dementia ranges from 23%-45% when assessed clinically and 84% – 93% when assessed instrumentally (Espinosa-Val, et al 2020). In persons with end stage dementia, 24% feed themselves, 18% require feeding assistance, and the remainder either refuse to eat entirely or choke on their food.  People living with dementia may not be able to articulate that they are having increased difficulty swallowing and will manifest as refusal to eat, weight loss, coughing while eating, drooling, wet voice, and perseverative chewing (Payne & Morley, 2018). Among other eating and drinking problems in people with dementia are: food refusal, distractibility, visual agnosia, swallowing and feeding apraxia, pocketing food, spitting food, excessive swallows, rapid eating, absent chewing, and delayed or impaired pharyngeal swallow (Payne & Morley, 2018).

Dysphagia can result in malnutrition, dehydration, aspiration pneumonia, weight loss, and poor wound healing as well as diminish someone’s quality of life.

Reading all those statics can be a little jarring.   As clinicians, how can we support these people and their caregivers?  How can we make eating and drinking with dysphagia not only safe,  but pleasurable too?

Right off the top, it must be stated that placing a feeding tube in someone with advanced dementia has been proven, time and again, not to be best practice.  According to the American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement: “When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feeding should be part of usual care for older adults with advanced dementia.”  It is important that caregivers of the person with dementia are educated and supported when it comes to feeding tube placement.  They need to be aware that it is not going to improve the quality of the person’s life and that it is not necessarily a safe alternative to eating by mouth.

To download our clinic tools “Say This, Not That!” series on how to use encouraging and respectful language when working with people with dysphagia, click here!

With the elimination of feeding tube placement, what can be done for people living with dementia and concomitant dysphagia?  Per Hansjee (2019), there should be 5 fundamental “Ms” to consider when managing someone with dementia and dysphagia and reduce the risk for aspiration:  MDT involvement, Maximizing posture, Mealtime preparation, Mouthcare, and Medication management. 

MDT:  This refers to multidisciplinary team involvement.  As rehabilitation professionals, we know that it requires much more than just one discipline or provider to manage someone’s care along the continuum.  Speech-language pathologists determine the least restrictive diet, and work in conjunction with a registered dietician to ensure that the person’s nutritional needs are being met.  Pharmacists should be involved to ensure medications are being provided in the easiest to manage format, as well as the person’s general practitioner to monitor overall health status.  Hansjee makes it a point to state that the person’s wishes should remain at the forefront of all decision making and having protocols in place for such situations are helpful in driving team discussions. Maximizing Posture: Hansjee states that for oral intake, the person should ideally be positioned upright in a chair instead of reclined in bed.  According to Alghadir et al (2017), correct positioning improves the speed and safety of swallowing.  Physical and occupational therapy should be consulted for proper wheelchair positioning and the possible use of positioning aides if needed so the person can manage sitting upright and out of bed as much as possible for meals. Meal Time Preparation: Per the Alzheimer’s Society in 2016, a good mealtime experience can have a positive impact on a person’s nutritional status and overall social well-being.  Hansjee states that it is helpful to let the person know the time of day as well as the meal that’s being served.  Also, self-feeding should be encouraged – place the food close to the person where they can easily reach it.  The sight and smell of the food will stimulate the olfactory and optic nerve which will kickstart the swallowing process.  Also, colorful plates can also increase overall meal intake.  A study from 2014 by Chadhury and Cooke stated that 25% more food is eaten off a red plate versus a white one (interesting, right?!). Mouth care: Inadequate mouthcare can lead to a whole host of problems, especially older people with dementia.  As we know, poor oral hygiene can lead to aspiration pneumonia due to plethora of bacteria present in the mouth.  Those people who are dependent on someone else to complete their oral care are at even greater risk.  Oral care can be challenging to complete in someone with dementia due to decreased cognition and sensory impairment that accompany the disease process.

For tips on how to complete oral care in someone with dementia, check this out!

Medication Management: Hansjee states that staff may be tempted to crush, melt, or disperse medication contents to make them easier for the person with dementia to manage, but that may affect how they are absorbed by the body.  This can cause reduced effectiveness, as well as unintended adverse side effects.  Before altering medication presentation, a pharmacist should be consulted to see if that would be possible.  According to Kelly et al (2011), medicine administration errors are three times more likely to occur in patients with dysphagia than in those without the condition. These 5 M’s can be integrated into your clinical practice and into your facility with some program development, planning, and staff education.

Management of someone with both dementia and dysphagia needs to be interdisciplinary team effort and goes very beyond altering someone’s food and liquid textures.  People are now living longer with the constant advancements of medical science.  It is important that their lives are not only prolonged, but that there is some degree of quality to their lives.  Remember, “it’s not about the years in your life, but the life in your years!”.

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In Speech and Language Pathology graduate school, things seem very concrete.  If a patient is doing X, then we, as the professional, are supposed to do Y.  When it comes to dysphagia management, it’s our job to rehabilitate the patient’s swallow function, and recommend the safest, least restrictive diet texture to optimize oral intake.  Seems, straight forward, right?  WRONG.  Oh, how I wish I could go back in time and tell the young graduate student version of myself that things just are not going to be that simple…

So, how are we supposed to manage dysphagia in a way that balances our professional recommendations, the safety of the patient, and also the wishes of the patient and their family?  Unfortunately, there’s no concrete answer to that question! Here, I will attempt to address it the best I can. 

To read more about how to manage dysphagia during the holidays, check out this article!

Educate

First and foremost, EDUCATION.  As the professional, it is our job to educate the patient and family about our recommendations, and why we’re recommending them. Remember- if you’re unable to speak to not only what, but why, then maybe we need to rethink what the plan for that patient is. 

Providing education in multiple mediums is also helpful in assisting patients and families with understanding diet recommendations.  A one time, quick verbal education session often isn’t enough when it comes to ensuring carryover and understanding.  Providing handouts, reference websites, and pictures are all helpful to assist family members with demonstrating ‘teach back’ to ensure everyone is comfortable with what is occurring.  In addition, doing a ‘hands on’ training is also very beneficial for both the patient and their caregiver.  Many people are visual learners, and even more learn by doing so having them practice thickening liquids in real time is very beneficial for all involved.  We all know it take a few tries to get the technique ‘just right’ and practice really does make perfect when it comes to this!

Document

Next, you need the DOCUMENT that education clearly, and concisely.  A very wise professor in graduate school once said to my class “If you didn’t document it, it didn’t happen.”  Be specific, and thorough.  Make sure you capture whom (spouse, child, etc.) you talked to, when you talked (during therapy, in after a meal, during a meal) to them, and how you talked to them (in person, phone, WebEx). 

Also, include any education materials you provided, and be specific.  You want to avoid a “I wasn’t aware,” or “I didn’t know” situation when it comes to family and caregivers.  You do not always have to wait for the family to contact you – if you feel it is a complicated case, or there has been “illegal contraband”, food items brought to the patient take the initiative and call the family or caregiver (and document that phone call!) 

Check out these ‘Say this, not that!’ printable handouts about dysphagia for your clients and colleagues!

Focus on the client

Be sure to ask the patient what THEIR GOALS for therapy are.  We need to practice person-centered care, and take the wishes of the patient into account when formulating our therapy plan.    It is THEIR therapy – not ours!  Our patients are not going to participate in they feel like they were not a part of the conversation.  You are not going to get very far if you do not take the time to establish a rapport with that patient, and get to know them.  What are their likes and dislikes?   Are you using food items in your session that the patient likes?  Did you even bother to ask them what they like?  It is so easy just to go on autopilot and grab graham crackers and applesauce from the hospital pantry without remembering that not everyone likes applesauce… or graham crackers. 

Be patient

Accept the fact that not all patients and families are going to like you, or agree with you.  Having someone sign a ‘diet waiver’ or discharging a noncompliant patient from your service is not going to alleviate you of responsibility – you cannot abandon your patient just because they are not ‘buying what you are selling’ (I’ve also been told that ‘diet waivers’ do not hold up in court).  Everyone is entitled to make their own decisions… even the bad ones.  As the professional, it is your job to educate, counsel and DOCUMENT. 

Also, involve administration if needed.  Early communication is the best, and if everyone is in the loop, the situation can be better managed.  Make sure the doctor, nursing staff, dietary, and all other personnel involved in that patients care are onboard so you are able to present a unified front.  Have the data to back up your recommendations, and have the paper trail to prove that the patient and caregivers were educated about the recommendations, risks, and consequences of diet noncompliance. 

If there is a particular food item that the patient is requesting, show the patients and caregiver how to alter it to make it safe and compliant for the prescribed diet texture (and document it occurred!).  Many of the times, eating and food are the only items within a patient’s control, so they exercise that control when they can.  There is (usually) someone presiding over every aspect of their care and they cannot even use the bathroom alone.  We need to be sensitive to the fact that sometimes we are just the easy target to take out their control issues on. 

The last point to consider here is that a lot of families and friends say, “I love you” with food.  It is how they show they care and show their support.  They often feel powerless when a loved one is sick, and one of the few things they can do is provide food for comfort.  Again, we circle back to the education component of dysphagia management.  Educating those involved with the patient’s care regarding diet recommendations/needs is paramount so the appropriate items can be brought to the patient as a sign of support from those closest to them.

Empower

EMPOWER the families and caregivers to PARTICIPATE in the patient’s plan of care regarding dysphagia and diet texture management.  Most of the time we are asked, “What can we do with them when we visit?  How can we help?  Are there any exercises we can help them do?”  If your patient is able to complete a home exercise program (HEP) during their downtime, show the patient’s loved ones how to assist them with completing it outside of therapy time.  Be very concrete and deliberate in your instructions, and make it clear that completing some exercises with the patient outside of speech therapy does not give them the license to trial food and liquids that are not within the recommendations (and DOCUMENT it). 

The moral of the story here is there is so much more to dysphagia and diet texture management then structure and function of the swallowing mechanism itself.  As a clinician, you really need to take a step back, and look at the big picture.  If someone is noncompliant with their diet recommendations, do some self-reflection.  Have you educated them appropriately?  Has the family been educated?  Have you made yourself available for questions and concerns, and are you open to considering those concerns?  Is the rest of the care team behind you? 

Please check out the International Dysphagia Diet Standardization Initiative website at https://iddsi.org/  for further information re:  IDDSI diet levels, education materials, and handouts.

For more information about the social and ethical implications for dysphagia management, check out ARC Seminar’s 0.3 ASHA/AOTA CEU, practical short course “Life with Dysphagia:  Breaking down social and ethical barriers”.

Interested in more clinical tips, articles, and resources for your practice? Sign up for our bi-weekly mailing list below! We promise to treat your inbox with the respect and love it deserves 🙂

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Traditionally, the holiday season is a time for us to gather with friends and family, and to celebrate the various holiday traditions that have evolved over the years.  More often than not, those traditions revolve around everyone’s favorite subject:  FOOD!

Whether it’s baking holiday cookies and cakes or sitting around the table for your favorite holiday meal, food is the essential centerpiece of each gathering.  Unfortunately for people living with dysphagia, partaking in those holiday food feasts may not be possible if the proper precautions aren’t taken.

An estimated 1 in 25 adults will experience a swallowing problem each year in the United States.  With statistics like that, the chances someone you know that has some degree of swallowing difficulty is pretty high.  Dysphagia can range from just needing to take small bites/sips to needing all of your needs met via an alternative means, like a peg tube.  Traditionally, dysphagia diets don’t look terribly appetizing, and those assisting with preparing don’t help the cause by saying things like “looks like baby food”, or “looks gross.” 

Download our ‘Say this, not that!’ guideline for caregivers of dysphagia right here!

Dysphagia can also be very isolating. 

Those with swallowing difficulties may just avoid social gatherings all together since most social situations revolve around food.  Imagine if you couldn’t partake in your usual holiday festivities – how would YOU feel?  Here are some tips for planning your holiday gathering to be more inclusive, and also to assist you with advocating for your loved one (or yourself!) with dysphagia.

Plan ahead! 

Today, everyone’s dietary preferences are evolving – vegan, vegetarian, keto, top 8 free, peanut free, etc.  Why not include texture preferences with that as well?  Asking your guests ahead of time if they have any preferences or difficulties around food shows you’re invested in their experience at your gathering.  Maybe even ask for some favorite, safe recipes to be sent your way so you have something to serve your guest with an altered diet.

Remember the point of a holiday gathering is for everyone to have a good time – go the extra mile for your guests! On the flip side, if you’re caring for someone with dysphagia that will be attending the gathering, ask the host what their planned menu is.  More often than not, hosts will have their menu planned days to weeks in advance and will be able to speak to what they’ll be serving.  Make sure when you’re inquiring about the menu to make it clear that you’re not attempting to be critical of their menu, just that you want to plan ahead for your loved one (or yourself)! 

If you don’t feel comfortable with the proposed menu, plan your arrival to the gathering to take place after the main meal is served, or arrive early so you can depart prior to food being served.  I know this isn’t the best option for all involved, but it’s a way for you or your loved one to still be part of the holiday celebration safely. 

Bring your own food! 

This does sound strange, but if you’re going to a place where you couldn’t get a straight answer about what’s being served, or you’re nervous about what’s on the menu, this is the best way to ensure your loved one, or yourself, is going to have something safe to eat when it’s time to sit down at the table.  Make sure your food items are clearly labeled so they don’t get accidentally served, thrown away, etc. prior to mealtime.

You can bring a small can of food/liquid thicken, or even purchase pre-thickened liquids ahead of time to pack in your DLB – Dysphagia Lunchbox. Don’t worry about offending your host – they’re sure to appreciate the forethought on your part.  And to our hosts – be grateful your guest is bringing their own food so they can be a part of the day – don’t get offended that they’re not going to be eating your prime rib.  (They would if they could!)

Ask for help! 

If you or your loved one is in need of an altered diet, there’s a solid chance that there is a speech-language pathologist you have worked with in the past floating out in the world.  REACH OUT TO THEM – THEY WANT TO HELP YOU!  Send an email or give a call to them and let them know your concerns, and your plans.  They’ll be more than happy to help you structure your meal to make it safe and inclusive for everyone involved. 

If you don’t have a speech – language pathologist contact, put out some feelers on social media in dysphagia specific groups.  Now, please keep in mind that as helpful as social media can be, remember there’s also a lot of misinformation out there so be careful when sourcing information from social media. 

In addition to social media, the International Dysphagia Diet Standardization initiative www.iddsi.org has a wealth of knowledge and information about diet textures, and ways to better prepare food for people on altered diets.  There’s even a great section entitled “Focus on Puree” that you can access here:  https://iddsi.org/focus-on-puree/ Here’s a direct link to their resource page, which has loads of downloads and even some recipe books for pureed and mined/moist diets:  https://iddsi.org/resources/ 

EDUCATE, EDUCATE, EDUCATE. 

Take the time to educate the host, and others that will be attending the holiday gathering about dysphagia (with permission, of course).  Be sure to highlight more positive ways to describe the altered food, and also ensure that other guests won’t serve the person something unsafe in error.  Also, make it clear that dysphagia just doesn’t ‘go away’ because it’s a holiday.  Phrases like “just this once” or “oh, a little bit won’t hurt” are not acceptable – a little bit, will in fact, hurt.  It never hurts to be overly cautious.  You can initiate a group text with education or send a group email.  Everyone is very tech connected nowadays, so communication prior to the gather should not be too much of an issue. 

When in doubt, STAY HOME. 

If you’re uncomfortable with how things are panning out with your holiday plans, just stay home.  Unfortunately, not everyone is going to be receptive to new or different things, and some people are just flat out stubborn.  Staying home during the holidays isn’t the best option, but it’s important to put safety first.  As mentioned previously, everyone is very tech connected in today’s day and age, and maybe joining the family via Zoom or FaceTime is your best option.  You need to surround yourself with people who have your best interest at heart.

It’s important that we move towards normalizing dysphagia, and the need for altered diets.  Many people who experience swallowing disorders are living in the community and deserve the same considerations people with other types of diet preferences have access to.  You wouldn’t think twice about someone telling you they’re vegan or on the keto diet, so why make people with dysphagia feel alienated? Even some chain restaurants have diet specific menus now. Dysphagia can lead to many things, and isolation is one that isn’t often considered.  It’s important to make our loved ones feel included, and safe.  Always remember, if you were in their shoes, what would you want?  Remember you can thicken pretty much anything… even cocktails.

For more information about dysphagia around the holiday season and dysphagia diets, please visit https://www.asha.org/Practice-Portal/Clinical-Topics/Adult-Dysphagia/#collapse_7 Also, be sure to stay in the loop with ARC Seminars to be the first to know about the launch of our new webinar “Life with Dysphagia:  Knocking social and ethical barriers”.  This course has loads of information, and ways to better assist patients and caregivers with living with dysphagia. 

Interested in more clinical tips, articles, and resources for your practice? Sign up for our bi-weekly mailing list below! We promise to treat your inbox with the respect and love it deserves 🙂

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