Introduction and Overview
This course is Part 2 of the two-part series focusing on dysphagia in patients with dementia, and what we as SLPs can do as far as modifications, education, and so on to benefit and to be an advocate for those patients.
In Part 1, we discussed everything leading up to evaluation, and this course will look at the specific evaluation and treatment aspects of this topic. I think it is really important that we do not become complacent and do the “same old same old.” It is important that we evaluate every single patient that we touch and look at them as an individual person.
Here are some of the questions that we should ask ourselves as we are evaluating a patient with dysphagia and dementia. The first question is, “Is this problem acute, acute on chronic, or chronic?” Part of that is, was there infection? We know that can cause a marked decline in cognition. Was there a medication change? Is this potentially medication-related, which we talked a lot about last week. Also, was there a surgery with intubation, and was there some vocal fold dysfunction or paralysis due to that surgery? We have to look at whether the problem is new, or is something that has been going on for a while.
Then we have to look at the patient's prior level of function. We can look back weeks or months even; before this recent decline began to determine what was the patient's level of function? That may include alternate diet consistencies, whether the patient had any signs or symptoms of aspiration, or whether there were any occupational therapy (OT) modifications such as adaptive equipment.
Are there any patterns to the dysphagia? Sometimes we fail to look at patterns. Is the patient only having trouble with specific foods or food groups? Is there a specific time of day that is more challenging for the patient? Is there a specific staff member who may be working with the patient, and the patient does not do as well when he or she works with that staff member? We need to look at the patterns that could be involved. Also, in Part 1, we talked about all the medications and their potential effects on the swallow.
What type of caregiver support exists in the patient's environment? That might be at home, or in a skilled nursing facility (SNF), or an assisted living facility (ALF). Is someone there to assist the patient? Is someone there to provide healing for the patient?
Next, does the patient have an advanced directive/living will? So, does the patient have a written directive of what his or her wishes are?
Lastly, is the patient on palliative care? This affects whether eating is for nutrition or for comfort. We have to ask ourselves all of those questions.
When we evaluate a patient, of course we need a thorough case history. We need to review what medical condition(s) has caused this change when we are doing our International Classification of Disease (ICD-10) coding. We also need to look at the multiple comorbidities. We know different etiologies or different disease processes may increase the chance for dysphagia, and so we look for those in the medical record.
We need a thorough patient interview and review of symptoms. The most important questions you can ask are, “Why are you here?” and “What symptoms are you experiencing?” If the patient is in the earlier stages of dementia, he may be able to answer. If he is in the end stages, you are going to have to make it a lot more basic, and use yes/no questions. If patients are in the earlier stages, a quality of life assessment may be good to use. Or, if a close family member or caregiver that works with them often is present, the caregiver can help assess quality of life as well and give you that information.
Then we have our clinical assessment of dysphagia, or bedside swallow. When we are looking at clinical assessments, we may use instruments such as the Swallowing Ability and Function Evaluation (SAFE) or the Mann Assessment of Swallowing Ability (MASA). SAFE has some subtest scores, stanines, etc. The MASA gives you a total score, and it corresponds to a likelihood of aspiration. You could also use different assessments such as the Functional Oral Intake Scale or the Dysphagia Outcome Severity Scale. There are quite a few different assessments that are available. Many of them actually correspond to the G-code severity indicator, so that is a good thing to have as well.
There are other tools as well. These include things like pulse oximetry, the three-ounce water test, or cervical auscultation, which can be somewhat subjective. The three-ounce test is not very likely to catch silent aspiration, but it is still a good tool to use. I like to say there is a whole toolbox of tools to use. You need to use the tools that are most specific to the focus of your evaluation and treatment for that specific patient.
And then, of course, we have our instrumental assessments. We have esophagrams for patients whom we suspect have esophageal issues. Typically, we are going to see those coming from a gastroenterologist. We have modified barium swallow (MBS) studies or videofluoroscopies, fiberoptic endoscopic evaluations of swallowing (FEES), and manometry. With the MBSs and FEES, the Penetration-Aspiration Scale from Rosenbek et al. may be used; that is another good numerical score to use with your G-codes, for your Medicare Part B patients.
Key Considerations for Treatment
What are our key considerations? We need to be asking if this is an acute dysphagia. Was there a specific incident that can be remedied without diet changes? One of the biggest mistakes that some of us - who are a little more “old school” in the SLP realm, and who have been out of graduate school a decade or two – make is that if we see a patient cough, we automatically thicken their liquids. That is what we were taught. What we know now is that everyone aspirates at some point, and if it is not a severe instance, then maybe we should not immediately change a diet or a liquid consistency due to a single incident.
If the patient has a percutaneous endoscopic gastrostomy (PEG) tube, what can we do for that patient? Can we have some non-nutritive PO (by mouth) intake? Can we do stimulation or pleasure feeding for potential rehabilitation of the swallow? As we know, the best exercise for swallowing is to swallow.
I have seen some research pros and cons on neuromuscular electrical stimulation (NMES) for patients with dementia. That could be another whole course, but we have to ask ourselves, is NMES a potential option for this patient? Does the patient have a stimulable swallow?
Early Conversations are Key
One of the most helpful hints I can tell you is to not wait until the patient is end-stage to have this conversation with patients and families. So often in my years of practice, I have sat down with patients and/or their families, and they may just have heard the word “dementia” for the first time. That diagnosis may be brand new. If I ask them, “Has your doctor explained what dementia is, and the typical progression?” most often the family says no. So, as early as possible, we need to give patients and their families information on what we may see in the different stages, because as we know, it is a progressive process. The patient will decline. There is no permanent solution or cure for dementia. We would like to slow the decline as much as possible, but giving patients and their families the information ahead allows them - as this disease progresses into a more severe realm – to have the conversations they need to have with the loved one. They should talk ahead of time about whether the patient may want alternate nutrition or hydration, and under what parameters, so the patient can actually give those advanced directives himself. Families also need to be educated that a PEG does not necessarily mean that we are giving up, or that we are not going to feed the patient or care for the patient; it is a change of focus. We also educate the family on feeding for pleasure and improving quality of life with PO intake.
Theory of Retrogenesis
I want to talk quickly about the theory of retrogenesis. As we briefly discussed in Part 1, there are different stages of dementia. In another series I did on SpeechPathology.com, we reviewed the different stages of the Global Deterioration Scale (GDS). But the stages are fairly fluid. There is no hard-set limit to each stage. They can blend together a little bit. But the theory of retrogenesis, in the most basic terms, is the “once an adult, twice a child” mindset. It is the theory that as the dementia progresses, the cognitive abilities of the patient revert further and further back to younger years. So, a person at GDS 4, for instance, may have the cognitive processing ability of an 8 to 12-year-old; GDS 5, a 4 to 8-year-old; GDS 6, typically that of a toddler, two to four years old. Patients at GDS 7, those end-stage patients, have the cognitive processing abilities of an infant. That is important to know when we are thinking about what we should expect and what strategies to use for patients in each of these stages.
Types of Treatment or Interventions
What treatment or interventions can we provide? First, there are medical interventions, and typically those are not anything that SLPs have a direct hand in. We do not prescribe medications, and we do not do surgery. We may recommend consultations, but the medical interventions - such as feeding tube placement or a specific surgery - are controlled by the MD.
Then we have prevention. What they say about “an ounce of prevention” is true. We can do so much more with patients when we take a preventative approach, especially with oral hygiene. I know you are probably chuckling right now because good oral hygiene – or the lack thereof - is sometimes the bane of our existence as SLPs. But we know that poor oral hygiene is actually a risk factor for aspiration pneumonia. We can also do some exercises to maintain strength, just like you would in a gym.
Next, there are our SLP interventions, and one of the common misconceptions about patients with dementia is that they cannot learn anything new. That is such a fallacy. Just because a patient has a diagnosis of dementia, does not mean that she cannot be taught. Our basic principles say that with patients with dementia, we use their intact skills to compensate for deficits. Especially in those earlier stages of dementia, research has shown that patients can learn new information. There are many different evidence-based practices; spaced retrieval is one of my favorites that I use that is very useful in those early to mid stages. We may use rehabilitative strategies in an attempt to fix the physical problem. We may use compensatory strategies such as positioning strategies or swallow strategies to compensate for the problem. We might also recommend the free water protocol. Now, you notice I did not use a proper name for it. Typically, you will hear the term “Frazier free water protocol,” but you need to check with your workplace, because the wording of the water protocol and/or the limits of those protocols are important; you will have to work within the policies and procedures of your work location.
Precautions and caregiver trainings are other interventions we may implement. Are there positioning strategies that we can use? Are there feeding techniques that may be useful, such as feeding from one side or the other, smaller bite size, alternating bites and sips, or other techniques? Specialized dining equipment may also help; we are going to talk a lot more about that when we get to the section about environmental modifications.
Inevitably, we are going to come to the topic of supplements or alternatives for nutrition. So you have things such as Magic Cups™ and Super Donuts®. I learned about Super Donuts recently. We know that sweet is pretty much the last taste to go, and so many times, even in later stages, you will see patients eat dessert only. That is because they can still taste and find pleasure in the taste of sweets. If the patient likes to finger-feed sweets, then Super Donuts would be great. If the patient loves ice cream, Magic Cup could be a great supplement.
And then you have your liquid supplements, which are Boost®, Ensure®, etc. You have to ask, if there is a patient who just picks at her food but drinks like a camel, could we use liquid supplements to help her maintain her nutritional status?
Management of Dysphagia
When we look at the management of dysphagia, one of the first and foremost things that we must assess on a daily basis is the patient's level of alertness. Is the patient having a good day? On those good days, when that patient is alert, give the patient extra portions. If the patient wants to eat, give him all the food he wants, because if that patient is having trouble maintaining nutrition, we have to capitalize on those good days.
Also, it helps to be flexible with feeding time, speed and environment. If the patient is wandering in the middle of the night, and indicates that she is hungry, why should we not allow that patient to have snacks in the middle of the night? We are staffed 24/7 in residential care facilities, so there is always someone there. We should have the time to get that patient a quick snack or something to eat.
In addition, people eat at different speeds. Most SLPs I know are probably not eating at the safest speed. I am a speed eater; I will eat with one hand while documenting with the other hand, or take a couple bites of something while I am between emails or conference calls. My husband, on the other hand, is a slowpoke eater, and he takes twice as long as I do to eat dinner. So we have to think about that, and ask that question. What was the patient's prior function? Did the patient take a while to eat or was she a speed eater? If she previously took a while to eat before, and is taking a while to eat now, well, that is nothing out of the ordinary.
Some patients may love loud, bustling social environments. Other patients may be much more introverted, so we have to be flexible with that.
Try using written cues if the patient still has preserved reading abilities. If the reading abilities are not preserved, but the patient still recognizes photos, you can use photo cues or a schedule board. When you are teaching strategies to patients, use one-step, simple directions. If you give a four-step set of directions, you are going to overwhelm most patients. So stick with simple directions, visual cues if you can, and then use memory or recall strategies such as spaced retrieval, or possibly some chunking, or one of those types of strategies. It is also helpful to use physical cues. For instance, if you are trying to teach a patient a chin tuck, you may have to manually assist the patient with getting the correct position. It may take many, many repetitions for that patient to achieve muscle memory for maintaining that position.