Management of patients with dementia and dysphagia can be very complex. These patients may exhibit changes in behavior during meals, changes in physiology of swallow, and changes in cognitive or language function that affect their ability to understand or implement treatment strategies. Patients may also exhibit sensory loss that affects both their ability to eat and swallow and their ability to use treatment strategies. As clinicians, we must evaluate all aspects of the patient's function in relation to their swallowing and eating ability. We must also place the results of this evaluation in the context of the patient's cognitive problems and ability to apply and use therapy strategies.
Statement of Therapy Goals. When we consider a patient for assessment and management, the requirement of Medicare and many other third parties is that we can anticipate functional improvement as a result of our interventions. Functional improvement should not be defined as ability to do an exercise in therapy. Instead, functional improvement should be defined as change/ improvement in some aspect of eating and swallowing ability. Patient goals should be stated in terms of anticipated functional improvement such as, "After therapy, the patient should be able to swallow thickened liquids safely." This is in contrast to stating a therapy goal as, "Patient will be able to do range of motion exercises."
Another functional goal may be to improve the volume of food swallowed in a specific length of time, such as 15 or 30 minutes. This is in contrast to a goal that might state, "Therapy will facilitate the patient's ability to hold their breath while swallowing, or patient will be able to repeat an exercise 10 times successfully." Unless exercises are stated in terms of functional outcomes, the clinician is at risk for not receiving payment for their work.
Candidacy for Therapy. We should not assume that all patients that we evaluate are candidates for therapy. If a patient with dementia is unable to perform tasks or exercises needed for swallowing, the patient is likely not a therapy candidate.
Dysphagia Assessment. When a patient with dementia and possible dysphagia is referred for assessment, a full dysphagia evaluation and eating assessment is needed. If the dysphagia is suspected of being a pharyngeal dysphagia, an instrumental assessment is necessary to accurately define the patient's swallow physiology and outline a treatment plan as well as treatment efficacy. Many clinicians omit this assessment because some nursing homes are not eager to pay for it. Without a physiologic assessment, money will be wasted, as the clinician must "guess" at the nature of the patient's dysphagia and the appropriate treatment. In addition, examining treatment efficacy during the pharyngeal instrumental assessment helps the clinician to identify the best therapy and to determine whether the patient can benefit from therapy. Since we don't have enough evidence on the treatment efficacy of each swallowing treatment for patients with dementia, it is important that each clinician assess the effectiveness of various treatments for each patient. For example, a patient who is aspirating because of a delayed pharyngeal swallow may experience much faster triggering of the pharyngeal swallow when swallowing certain intense tastes, or certain bolus temperatures. This constitutes treatment efficacy data for the specific patient and, as such, can be shared with Medicare or a third party payer. Developing and achieving measurable positive outcomes for dysphagic patients is critical to achieving third party funding for the care of these patients.
If patients are in the advanced stages of their disease with severe dementia, studies show that patients cannot benefit from even non-oral nutritional interventions. One of the most important decisions or recommendations the clinician can make after assessing a dysphagic patient with dementia is whether or not the patient can benefit from treatment. It is unethical to treat patients for whom we cannot anticipate improvement. Sadly, some of our patients with dementia cannot be expected to improve and therefore are not therapy candidates. We can counsel the patient's family. We can educate the staff caring for the patient as to why the patient cannot benefit from treatment, including the reasons that no direct therapy should be provided.
Patients with dementia are some of the most complex and difficult individuals to evaluate and treat. It is critical that we examine the entire patient situation in the context of their disease progression and make realistic recommendations as to whether patients can or cannot benefit from treatment. We must also draft our treatment plans and outcomes so they relate to function, not an exercise. The patient with dementia deserves the best of care in the context of what their disease status will allow.