Introduction
If you’ve worked in a SNF or home health long enough, you know this patient.
You walk in and see an 87 year old patient. Moderate to severe dementia. Her daughter is sitting by the bed, arms crossed, waiting for you to tell her something that makes sense. The nursing staff flagged her because she’s been coughing at meals. She’s lost eight pounds in two months. And the physician has already written in the chart: “SLP consult for dysphagia evaluation and recommendations.”
You do your evaluation. You see a patient that is coughing several times throughout the evaluation. You see a very fast rate of eating and large drinks. You see the daughter talking to the patient and telling her what to do repeatedly as she is trying to eat.
And then comes the part nobody prepared you for.
You tell the daughter what you suspect from the evaluation. You tell her that you think there may be some issues in the pharyngeal phase, however you would need an instrumental assessment, but she doesn’t want her mother to go through all that so she wants you to make your decision based on what you see here at bedside.
This is the post I wish had existed when I was three years into my career and still second-guessing myself in these moments. Because the honest truth is this: the evidence for treating dysphagia in persons living with dementia is limited, often unclear, and what we’ve been doing for decades is getting harder to defend.
Let’s talk about it.
First, the Honest Picture of the Research
I want to be upfront with you about where the research actually stands, because I think we do each other a disservice when we pretend there are clear answers when there aren’t.
A 2024 systematic review searched five major research databases from their beginning all the way through January 2024. They found only 10 eligible studies involving 1,360 participants that specifically investigated dysphagia treatment in persons living with dementia. After analyzing everything, their conclusion was essentially: we cannot determine which treatments are more effective for this population.
Part of the reason the research is so thin is that this population is genuinely hard to study. Cognitive decline affects a patient’s ability to participate in instrumental assessments, carry over swallowing strategies consistently, and complete structured treatment protocols. So most high-quality dysphagia RCTs either exclude patients with significant cognitive impairment or don’t include enough of them to draw meaningful conclusions.
What that means for us clinically: we are often working with research designed for a different population and trying to apply it to our most complex patients. That gap matters. And knowing it exists is actually the beginning of better clinical reasoning.
Thickened Liquids
For decades, our default response to dysphagia in dementia has been: thicken the liquids. It felt like the safe choice. It was easy to implement. The whole team understood it. Families accepted it.
Let’s be honest, thickening liquids is often our default response in most populations, not just with people with dementia.
A 2024 study published in JAMA Internal Medicine looked specifically at hospitalized patients with Alzheimer’s disease and related dementias who had dysphagia, comparing outcomes in those receiving thick liquids versus thin liquids. The senior author stated plainly that there is no concrete evidence that thick liquids improve health outcomes, and that thick liquids can actually lead to decreased palatability, poor oral intake, dehydration, malnutrition, and worse quality of life.
A landmark study by Robbins and colleagues found no difference in pneumonia rates between patients who received thickened liquids and patients who received thin liquids with a chin tuck. Same pneumonia risk. Different quality of life. In fact, in patients with aspiration of thick liquids, there was a higher mortality rate.
We also know that patients on thickened liquids often drink less. They don’t like how it tastes or feels. They get dehydrated. Dehydration worsens cognition. Worsened cognition makes dysphagia management harder. It can become its own kind of cycle, and the thing we put in place to help sometimes creates a different set of problems.
This does not mean we never use thickened liquids. There are patients for whom they are appropriate, and there are clinical situations where the benefit genuinely outweighs the risk. But it does mean we need to stop reaching for them reflexively. When we recommend them, we need honest informed consent, clear documentation of our reasoning, and a real conversation with the patient and family about what we know and what we don’t.
I’ve written more about this in my post on the Free Water Protocol if you want to dig into how that approach fits into your clinical toolkit.
PEG Tubes in Advanced Dementia: What the Evidence Actually Shows
This is one of the areas where the research HAS reached a fairly strong conclusion, even if the clinical reality doesn’t always reflect it.
Multiple systematic reviews over more than two decades have consistently found that PEG tube placement in advanced dementia does not improve survival, does not improve nutritional status, does not reduce the risk of aspiration pneumonia, and does not reduce the risk of pressure ulcers.
Let that settle for a moment.
Not one of those hoped-for outcomes. The 2024 European guidelines on nutrition and hydration now explicitly recommend that enteral nutrition should not be initiated in advanced dementia patients.
And here is something that is even harder to absorb: studies have found that nasogastric tube feeding in advanced dementia was actually associated with a higher pneumonia risk compared to careful hand feeding.
This doesn’t mean tube feeding is never appropriate. There are patients in early to moderate stages whose situation is different, and there are cases where the clinical picture warrants a serious conversation about options. Context always matters.
But for patients with advanced dementia and dysphagia, careful hand feeding is supported by the evidence. Enteral nutrition is not.
Our job in these conversations is not to be passive. We are not just there to identify aspiration risk and hand off the decision to someone else. We are the clinicians who understand swallowing physiology and nutrition and the research. We have an obligation to be active participants in these family and team discussions, to share what the evidence says clearly and honestly, and to advocate for quality-of-life centered care.
Always remember, that although we may not be the primary decision maker for the patient, we can provide evidence and knowledge that leads families and caregivers into making a well-informed decision.
That is sometimes uncomfortable. But it is exactly where our expertise belongs.
Compensatory Strategies: Helpful, But With One Important Caveat
Here’s where I want to be really honest about the clinical tension.
Postural changes and swallowing maneuvers are core tools in our toolkit. Chin tuck. Head rotation to the left or right. Supraglottic swallow. We learn them early and we use them often. In the right patient, they work.
But they all require one thing that our patients with dementia often cannot reliably provide: the ability to remember and apply a strategy consistently, every single swallow, every single meal. We may even see patients that don’t have dementia forget to use their strategies.
If you’ve ever spent twenty minutes teaching a patient with moderate dementia to do a chin tuck, only to come back the next day and find them eating with their head tilted back, you know exactly what I mean. The patient isn’t being difficult. The cognitive capacity to carry that strategy forward just isn’t there.
So what do we do?
We shift the target. Instead of teaching the patient to use the strategy, we build the strategy into the environment. We train the caregiver or the aide on positioning at setup. We modify the mealtime routine so safer mechanics are built in. We reduce distractions. We look at pace and food presentation and bowl placement.
There is also one technique that has some specific evidence in this population worth knowing about: spaced retrieval. It has been shown to help patients with dementia in long-term care retain compensatory swallowing strategies and self-feeding behaviors. It does not work for everyone, but it is worth having in your toolkit and worth trialing in patients who may have some residual capacity for learning.
The Rehabilitative Approach: What We Know—and What We Still Don’t Know
This is the piece that I think is underexplored with this population.
Research has found that SLPs working with hospitalized patients with Alzheimer’s disease and related dementias more frequently recommend compensatory approaches over rehabilitative, exercise-based approaches. Which makes clinical sense on the surface. If the patient can’t follow through with exercises independently, why bother?
But compensatory strategies don’t change underlying physiology. They manage it.
For patients in the earlier stages of dementia who retain some capacity to participate in therapy, there may be a real argument for incorporating rehabilitative approaches. A systematic review and meta-analysis of behavioral interventions in oropharyngeal dysphagia found significant treatment effects in favor of behavioral and rehabilitative interventions overall. The challenge is that very few of those studies specifically included dementia populations.
The honest answer is: we don’t have enough evidence yet to know exactly how much rehabilitative therapy can accomplish in this population, at what stages, and with what approaches. That is an uncomfortable place to sit. But it is also an invitation to think carefully about what we recommend and why, rather than defaulting to the same approaches for every patient.
This is also the time to look at each patient individually to determine what is the most appropriate treatment plan for that person. Some of your patients may be more appropriate for an interactive plan where they complete exercises and use strategies, with caregiver support if needed and available. With some patients, you may only be able to modify the environment and make external changes as they are unable to follow the instructions needed for safe eating and drinking.
The other, more difficult decision may be to do nothing. The family, caregiver or even patient may have made a decision that they would prefer to eat, drink and take their chances rather than be on thick liquids or modified textures. If that is their decision and you have made your recommendations, with reasons why you made those recommendations and educated family, caregivers and patient, then it may be time to step back and know that you did your due diligence.
What This Looks Like in Clinical Practice
So you’re standing in that room. The daughter is waiting. The patient is looking at you with eyes that may or may not track what you’re saying.
Here is what I have come to believe after 25 years in this field, working across SNF, hospital, LTAC, home health, and outpatient settings:
Our most evidence-supported role in this population is not the clinician who prevents aspiration at all costs.
It is the clinician who helps the team and the family make informed, quality-of-life-centered decisions about risk, eating, and what this patient would want.
That means being honest about what thickened liquids can and cannot do. It means knowing the research on PEG tubes and being willing to share it clearly, even when it’s hard for a family to hear. It means using the BOLUS Framework to think about risk more comprehensively, beyond aspiration alone. It means looking at the whole patient, their goals, their stage of disease, their quality of life, and the evidence, not just the swallowing deficits.
It also means asking the question we don’t ask often enough: what would this person want?
That question doesn’t always have a clean answer. But it is the right question to start with.
Key Takeaways
- Research on dysphagia treatment in dementia remains limited.
- Thickened liquids do not consistently reduce pneumonia risk and may negatively affect hydration, nutrition, and quality of life.
- PEG tubes generally do not improve survival or reduce aspiration pneumonia in advanced dementia.
- Compensatory strategies often require caregiver implementation rather than patient recall.
- Rehabilitative therapy may have a role for select patients in earlier stages, but additional research is needed.
- Clinical decisions should prioritize evidence, patient goals, and quality of life.
Clinical Bottom Line
The research for dysphagia treatment in dementia is limited. That is just the truth.
The two areas where the evidence is clearest are both cautionary: PEG tubes generally don’t improve outcomes in advanced dementia, and thickened liquids don’t reliably prevent aspiration pneumonia and carry real risks of their own.
What we are left with is not a protocol. It is a framework for thinking: use the best evidence available, look at the whole patient, center quality of life in the decision, be honest with families, and bring our full clinical expertise to these conversations rather than retreating to the safety of reflexive recommendations.
Remember, sometimes all we may be able to do is to change the environment and make it a more eating-friendly environment involving timing between bites and drinks, caregiver cues, removing distractions, different utensils and dishes, better lighting. Consider all of these in your evaluation.
These are hard cases. They were hard cases twenty years ago and they are still hard cases today. The difference now is that the research is giving us better language for why our old defaults may not be serving our patients well.
That is not a comfortable place. But I think it is an honest one.
And sometimes honest is exactly what a patient and their family need most from us.conclusion condensed into an easy-to-find section.
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References
Chan, C. T. W., Wu, T. Y., & Cheng, I. (2024). A systematic review on dysphagia treatments for persons living with dementia. European Geriatric Medicine, 15(6), 1573-1585. https://doi.org/10.1007/s41999-024-01107-6
Makhnevich, A., Perrin, A., Talukder, D., Liu, Y., Izard, S., Chiuzan, C., D’Angelo, S., Affoo, R., Rogus-Pulia, N., & Sinvani, L. (2024). Thick liquids and clinical outcomes in hospitalized patients with Alzheimer disease and related dementias and dysphagia. JAMA Internal Medicine, 184(7), 778-785. https://doi.org/10.1001/jamainternmed.2024.0736
Robbins, J., Gensler, G., Hind, J., Logemann, J. A., Lindblad, A. S., Brandt, D., Baum, H., Lilienfeld, D., Kosek, S., Lundy, D., Dikeman, K., Kazandjian, M., Gramigna, G. D., McGarvey-Toler, S., & Miller Gardner, P. J. (2008). Comparison of 2 interventions for liquid aspiration on pneumonia incidence: a randomized trial. Annals of Internal Medicine, 148(7), 509-518.
Goldberg, L. S., & Altman, K. W. (2014). The role of gastrostomy tube placement in advanced dementia with dysphagia: a critical review. Clinical Interventions in Aging, 9, 1733-1739.
Yuen, J. K., Luk, J. K. H., Chan, T. C., Shea, Y. F., Chu, S. T., Bernacki, R., Chow, D. T. Y., & Chan, F. H. W. (2022). Reduced pneumonia risk in advanced dementia patients on careful hand feeding compared with nasogastric tube feeding. Journal of the American Medical Directors Association, 23, 1541-1547.
Robison, R. D., Broadfoot, C., Gustafson, S., Yee, J. P., Burdick, R., Butz, N., Gilmore-Bykovskyi, A. L., Kind, A. J., & Rogus-Pulia, N. M. (2023). Compensatory versus rehabilitative dysphagia management approaches are more frequently recommended in hospitalized persons with Alzheimer’s disease and related dementias. Alzheimer’s & Dementia, 19, e078836.
American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. (2014). American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society, 62(8), 1590-1593.
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