Dementia is an extremely heterogeneous disorder with a wide range of symptoms. Among these are swallowing disorders, which often occur in individuals with various forms of dementia. Swallowing related difficulties vary depending on the type of dementia, as well as on the stage of the disease, typically more pronounced in the later or more advanced stages.
In the first part of the theoretical framework, which focused on swallowing, we began by descibing the process of swallowing – specifically, the anatomy and the phases of normal swallowing. We then continued with swallowing disorders, covering the epidemiology and etiology of these issues, neurogenic swallowing disorders, clinical symptoms indicating impaired swallowing, and diagnostic methods. In the second part of the theoretical framework, we focused on dementia and its most common forms. We started by describing the clinical presentation of dementia and the differences between dementia and mild cognitive impairment, then provided a more detailed presentation of four of the most common forms of dementia: Alzheimer's disease, dementia with Lewy bodies, vascular dementia, and frontotemporal dementia. In the third part of the theoretical framework, we brought together the insights from the first and second chapters and, for each of the described types of dementia, outlined the swallowing disorders most characteristic of that specific form.
As part of the empirical section of the thesis, we aimed to determine which swallowing problems are characteristic of each of the most common forms of dementia, whether the severity of swallowing problems is related to the advancement of dementia, and whether patients and their relatives perceive these difficulties differently. Our sample consisted of 61 patients with dementia and their relatives, who visited the Outpatient Department of the Center for Cognitive Disorders at the Neurology Clinic of the University Medical Center Ljubljana during the time of our research. Four patients were unable to participate, so in those cases only the relatives' assessments were obtained. Swallowing difficulties were measured using the FOIS scale and the EAT-10+ questionnaire, which we developed based on the existing EAT-10 questionnaire. To the latter we added 3 questions and 10 items, which were created based on the characteristics of swallowing difficulties in dementia as described in the literature. The patients completed the EAT-10+ questionnaire and the FOIS scale for self-assessment, while the relatives based their evaluations on their observations of the swallowing difficulties present in their relative with dementia. Other data of interest for our research included the results of the KPSS cognitive test, the MoCA cognitive test, the MTA index, lumbar puncture results, type of speech disorder and the type of dementia. This information was obtained by reviewing medical records.
In our sample, swallowing difficulties were present in 29.5% of patients. The findings of the study showed that individuals with Alzheimer’s disease pathology most frequently experienced symptoms such as coughing during or after swallowing, reduced appetite, difficulty swallowing pills, prolonged chewing and bolus formation, effortful swallowing of solid foods, the need for multiple swallows or washing food down with water to help it pass through the throat, problems with chewing, and effortful swallowing of liquids. Among individuals with other types of dementia (vascular and mixed dementia), the most common issues were related to swallowing solid foods, along with coughing during or after swallowing and prolonged chewing and bolus formation. These findings are consistent with the existing literature on swallowing disorders in Alzheimer’s disease and vascular/mixed dementia. In the analysis of the relationship between the severity of swallowing difficulties and the advancement of dementia, we obtained mixed results. The correlation between patients’ self-assessment of swallowing and their score on the KPSS test was positive, which is contrary to expectations and existing literature. On the other hand, the correlation between caregivers’ assessment of swallowing and the KPSS test score was negative, or inversely proportional, which is in line with expectations and literature. A positive correlation was also found between the patients’ and caregivers’ assessments and the MoCA test score, which again contradicted expectations and previous research. However, it is important to emphasize that all correlations were weak (between 0.1 and 0.3) and statistically insignificant. Given that a lower score on the KPSS and MoCA tests indicates more advanced dementia, and a higher score on the EAT-10+ indicates more severe swallowing difficulties, we expected a negative or inverse correlation between the two tests and the questionnaire items. We interpret the results that do not align with theoretical expectations as being influenced by the characteristics of our sample; specifically, the stage of dementia of the patients included. A large proportion of them are still at the stage of mild dementia, where swallowing difficulties are not yet as apparent or pronounced. On the other hand, we found results that are consistent with expectations and theory in the correlation between the MTA index and the severity of swallowing difficulties. There was a positive correlation between the two, meaning that greater hippocampal atrophy and thus more advanced dementia is associated with more severe swallowing difficulties. Finally, we also examined differences in the perception of swallowing difficulties between patients and their caregivers. We found that for each item on the EAT-10+, except one, caregivers on average gave higher ratings than patients. This suggests that caregivers perceive patients’ swallowing difficulties as more severe than the patients perceive them themselves.
Our research represents the first step toward a systematic understanding of swallowing disorders in individuals with dementia within the Slovenian context. The findings shed light on the scope and complexity of this often overlooked issue, while also laying the groundwork for future research and clinical work. Building upon this knowledge will be essential in the future, not only for deepening professional expertise, but also for ensuring multidisciplinary care, in which the speech and language therapist plays an indispensable role, as such care is crucial for the health and improved quality of life of patients.
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