Dysphagia and Diet Challenges
This is a common scenario. Your mother has just been discharged from the hospital after suffering a stroke. One of the lingering effects is a swallowing disorder or dysphagia. The doctor sent her home with instructions for a pureed diet and thickened liquids. Even though you listened to the doctor and you thought you understood, when you get home you’re immediately overwhelmed.
A friend suggests some cookbooks on Amazon. But how do you know if these are “good” cookbooks? Will they provide reliable information for you to manage your mother’s new diet safely?
Dysphagia can be life-threatening. Patients are at risk for pneumonia, malnutrition, and dehydration. Add to that how a swallowing disorder impacts the patient’s quality of life, with many patients complaining the food doesn’t look or taste like what they’re used to.
Managing a swallowing disorder includes therapeutic strategies ordered by the doctor and implemented by a qualified speech-language pathologist (SLP). The doctor may also order a dysphagia diet, a diet requiring the patient’s food be modified in texture and thickness to prevent choking.
Role of IDDSI Guidelines In Choosing a Safe Cookbook
Dysphagia cookbooks should follow standards set by the International Dysphagia Diet Standardisation Initiative (IDDSI).
IDDSI, formed in 2013, is an international volunteer-run, not-for-profit committee which developed standardized terminology, descriptors, and testing methods for dysphagia diets. It’s the standard of practice in the United States.
Prior to 2013, medical providers were using the National Dysphagia Diet (NDD) to guide decisions on safe dysphagia diets. That has been replaced by the IDDSI framework.
With the NDD, there was great variation in food and drink types. This made it challenging to categorize foods in a universal way. There was still confusion and miscommunication regarding food textures and drink consistencies. This caused more swallowing-related illnesses and deaths. That’s why IDDSI was formed– to improve communication and to ultimately increase safety for patients.
Evaluating Dysphagia Cookbooks
Caregivers should know that cookbooks which only reference food textures like pureed, mechanically altered, and advanced are not IDDSI terms. Neither are those referencing liquid consistencies such as thin, nectar thick, honey thick, and pudding thick.
These classifications are referencing the NDD. The NDD is an old, outdated system. It's full of inconsistent interpretations. It's no longer published and is no longer endorsed by the organization that published it. That organization now endorses IDDSI.
A “good” cookbook should not only be visually appealing and easy to follow, but it needs to be safe.
In fact, one of my top suggestions to caregivers is: before you buy one of these cookbooks, you really should talk to the dietitian or speech therapist for your loved one and ask, "Does this look like a book that would be appropriate?"
Author’s background knowledge should be verifiable
Consider the author qualifications when you choose a cookbook. Does the book give the author’s background? The writer should have some knowledge base about what dysphagia is, how it’s treated, and the IDDSI guidelines. I'd feel more comfortable if it was somebody that you can clearly associate with knowledge and background, such as a speech-language pathologist (SLP) or a registered dietitian (RD).
It doesn't necessarily have to be a licensed professional. I'm not a licensed professional, but I’m someone who's worked in the area of dysphagia for more than 20 years.
Check the table of contents
Most of the books provide a table of contents in the book sample. If it mentions the old NDD terms such as “mechanical”, “soft”, “ground”, “advanced” — consider if this complies with your doctor’s orders.
Look at how much is devoted to education. A good dysphagia cookbook should educate on how and why foods, techniques, and recipes are chosen.
Notice the pictures
Some cookbooks promote themselves as being in full color, then they aren’t. Full color is best for these types of books.
Notice if stock images are used. You see this often with new authors. They aren’t pictures of real food made specifically for that book. That would be ideal.
Some cookbooks marketed for dysphagia patients include misleading images that show unsafe foods. For example, a cookbook with stew on its cover is concerning. Stew has multiple textures and consistencies. This can be dangerous for people with swallowing difficulties. Such imagery on cookbook covers might mislead caregivers and patients about which foods are truly safe to eat.
Ask your SLP or RD for help
Lean on your SLP or dietitian for guidance. A SLP or dietitian well-trained in current dysphagia guidelines will be able to tell when a cookbook is not the best for your medical needs as determined by your doctor.
The point isn’t that a “good” swallowing cookbook has to follow IDDSI.
What matters the most: Your cookbook should match the specific diet standards prescribed by your healthcare team. If your hospital uses NDD standards, get a cookbook that follows that. Your cookbook's recipes and terms must match your discharge diet. This ensures safe, swallowable food.
If you’re a speech language pathologist (SLP) or dietitian reading this, you have a whole different level of knowledge than the average consumer.
You can be the guide for these caregivers who may be feeling lost. Use your professional knowledge. See what jumps out at you.
One book I looked at was promoting a bonus section of 20 must-do swallowing exercises. That will make any well-trained SLP’s professional hackles go up immediately. Swallowing therapy is very individualized. So, to say that these are “must-do” exercises is misleading.
Red Flags in Swallowing Cookbooks
Does it feel like an infomercial? A quality dysphagia cookbook shouldn’t give off vibes of an infomercial. If the writing feels “pitchy,” you should wonder: Are they selling this book because they care about dysphagia patients, or are they just selling a book for the sake of selling a book? A simple paragraph describing what the book is and how it can help is enough. There should be more than an optimized sales page to get you to “buy now.”
Dysphagia Cookbooks for the “Newly Diagnosed". Another trend I’m seeing is cookbooks touting themselves as being written for the “newly diagnosed.” My fear is caregivers and patients are being taken advantage of when they see this wording on the covers of books or in book reviews. They may not have the experience or knowledge base to understand that just because it says it’s for the newly diagnosed doesn’t mean it’s the best dysphagia cookbook for you.
I can look at a swallowing cookbook on Amazon and quickly judge whether it’s a good cookbook or not. But if you're newly diagnosed, or you've never dealt with this before, how do you know?
Notice the cookbook descriptions. Are they giving you grandiose claims? Look at this example of a book description:
“In this extraordinary cookbook, you will find transformative dysphagia-friendly recipes.”
That's not a description most humans would write about a cookbook. I mean, it's too over-the-top. We’re talking about a dysphagia cookbook. Not the Mona Lisa.
Question the reviews. If the reviews seem excessively flattering, think critically about what you’re reading. Compare each review to the other. Do you notice patterns in writing style?
Look for reviews from verified purchasers. Do they sound knowledgeable on the topic? Do they sound real?
If the author has one 5-star rating but no other ratings, you should question that. Why are there no other ratings?
I reviewed a cookbook recently. I posted a 1-star review with a detailed breakdown of my concerns. The book soon went “out of print”.
Watch for Misleading Recipes. When I read a recipe for “Ricotta Cream with Honey and Walnuts”, I’m concerned. Nuts and hard bits are not an appropriate food under the IDDSI Framework due to the choking hazard.
In culinary terms, chopped foods are larger pieces than minced foods. In the Minced and Moist section of a dysphagia cookbook, I’ve seen many recipes that included “chopped" in the title - like “Chopped Cod with Spinach” or “Chopped Chicken with Vegetables”. Chopped pieces will be too large for someone on a Minced & Moist diet.
Examples of Unsafe or Misleading Recipes
I’ve found some errors in swallowing cookbooks, including:
Misspelled information. The Minced and Moist IDDSI level referred to as “minced and moisted.”
Mis-labeled information. Recipes in the minced section had the word “chopped” in the recipe title.
Inappropriate ingredients. Recipes that instruct adding chopped nuts, for example. To maintain swallowing safety, nuts are never part of a recommended diet under the IDDSI guidelines.
Inappropriate foods. Recipes for bread items are common. Muffins or pancakes being listed in the Minced and Moist section of a swallowing cookbook is grossly inappropriate.
Breads become sticky. They don't break apart. They become sticky, gooey mass that hold other things in it. It’s a real choking hazard.
What is a “good dysphagia cookbook”?
Modern Dysphagia Cooking: Turn Family Favorites into Dysphagia-Friendly Dishes is a cookbook I co-authored with Laurie Berger, Nancy Yezzi, and Paul Haefner.
Laurie is a registered dietitian with 23 years experience. Paul has 30 years of food service experience in long-term care. Nancy has 30 years of clinical experience and she has worked at Simply Thick for nine years. Our dysphagia cookbook is the only one I know that uses IDDSI guidelines extensively. I understand there are others coming out, however.
Other Tips for Evaluating Cookbooks
Here are a few more quick tips to refer to when you’re looking to buy a swallowing cookbook:
Look at cover images. Do the photos look like real dysphagia-safe food or stock photos?
Are there believable statistics and headlines?
Does the online description page feel more like a sales pitch than a real story?
Notice the price of the books. Some cost $10, others are $2.99. With such a small investment, why not try them, right? Quality books often cost more.
Does the book devote less than a page to the IDDSI? If they barely mention it. I’d be concerned.
If they don’t talk about how to test food – be worried.
Final Recommendations
I wouldn’t suggest many of the cookbooks I’ve seen on Amazon.
Why? Because just looking at the pictures of the food on the cover and I can see the foods are not suitable for IDDSI. That makes it less likely the recipes are going to meet the IDDSI requirements. This also makes me feel the author may not understand IDDSI either.
Caregivers should do at least 2 things before buying a cookbook:
Talk to the dietitian or SLP for your loved one and ask, "Does this look like a book that would be appropriate?"
Make sure the cookbook you choose matches the doctor’s orders.
Hopefully, this gives you a better idea of what to look for in a good, quality, safe cookbook for dysphagia.
For a full list of cautions from IDDSI, see their consumer handouts here.
About the author
John Holahan is the President and Founder of SimplyThick, LLC and an inaugural member of the IDDSI Hall of Appreciation. He is also a member of the Canadian IDDSI Reference Group (CIRG) and a founder of the United States IDDSI Reference Group (USIRG). He is the inventor of the patented thickener - SimplyThick. Mr. Holahan has worked with thickeners since 2001.
For more information on John’s background in dysphagia, listen here to his interview on the “First Bite” podcast.
Resources
International Dysphagia Diet Standardisation Initiative (IDDSI). (n.d.). Resources. https://www.iddsi.org/resources
International Dysphagia Diet Standardisation Initiative (IDDSI). (n.d.). IDDSI Framework.https://www.iddsi.org/standards/framework
International Dysphagia Diet Standardisation Initiative (IDDSI). (n.d.). Patient Handouts.https://www.iddsi.org/resources/patient-handouts
American Speech-Language-Hearing Association. (n.d.). Swallowing disorders.https://www.asha.org/public/speech/swallowing/
Dawson, M. (Host). (2024, December 31). SimplyThick, IDDSI, and compassionate clinical implications with John Holahan (No. 290). First Bite. [Speech TherapyPD.com podcast]
American Speech-Language-Hearing Association. (n.d.). Swallowing disorders in adults.https://www.asha.org/public/speech/swallowing/swallowing-disorders-in-adults/
Berger, L., Haefner, P., Holahan, J., & Yezzi, N. A. (2023). Modern dysphagia cooking: Turn family favorites into dysphagia-friendly dishes [Self-published].
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