Purpose: Literature to date describing the lived experience of dysphagia has predominantly focussed on the clinical populations of stroke and head and neck cancer. The current study aimed to understand the experience of people with dysphagia of varying aetiologies living at home in the community.
Method: Using a qualitative descriptive approach grounded in phenomenology, individuals with dysphagia were interviewed ( = 15) about their experiences living with and managing dysphagia at home.
Result: Thematic analysis revealed an overarching theme of which described the process of managing dysphagia at home. This theme was characterised by three subthemes: (1) The story of dysphagia; (2) Engaging with support networks; and (3) Limited community awareness of dysphagia.
Conclusion: This study highlights a range of psychosocial impacts individuals with dysphagia living at home may experience. Participants described how managing other health conditions alongside dysphagia influenced their perspectives about dysphagia. speech-language pathologists must consider individual client health priorities and provide support for not just the physical but also the psychosocial needs of clients. The reduced profile of dysphagia in our communities continues to be an ongoing barrier for clients with dysphagia and their families.
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http://dx.doi.org/10.1080/17549507.2020.1765020 | DOI Listing |
Am J Gastroenterol
December 2024
Gastroenterology Unit, Department of Translational Research and New Technologies in Medicine and Surgery, University of Pisa, Pisa, Italy.
Background Aims: Esophageal symptom-specific anxiety, hypervigilance, and adaptive behaviors at mealtime may affect dysphagia reporting in patients with eosinophilic esophagitis (EoE) but this has not been investigated. Moreover, the relationship between such confounding factors and histological disease activity (HDA) is unclear.
Methods: This was a prospective study on adults with EoE.
Alzheimers Dement
December 2024
Faculdade Ciências Médicas de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Background: Malnutrition is a condition associated with negative outcomes in elderly patients, such as loss of functionality and mortality. The cause of malnutrition is multifactorial: secondary to changes in eating habits, dysphagia and loss of interest in food. It is a frequent condition in patients with advanced dementia.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Department of Psychology & Language Sciences, University College London, London, United Kingdom.
Background: Dysphagia is an important feature of neurodegenerative diseases and potentially life-threatening in primary progressive aphasia (PPA), but remains poorly characterised in these syndromes. We hypothesised that dysphagia would be more prevalent in nonfluent/agrammatic variant (nfv)PPA than other PPA syndromes, predicted by accompanying motor features and associated with atrophy affecting regions implicated in swallowing control.
Methods: In a retrospective case-control study at our tertiary referral centre, we recruited 56 patients with PPA (21 nfvPPA, 22 semantic variant (sv)PPA, 13 logopenic variant (lv)PPA).
Alzheimers Dement
December 2024
University of Wisconsin-Madison School of Medicine and Public Health, Madison, WI, USA.
Background: Caregiver burden, or the impact of caregiving, commonly occurs in caregivers of persons with dementia (PWD); however, prior research focused on caregiver burden in this population has not considered the impact of dysphagia. Therefore, the purpose of this study was to measure dysphagia-specific burden in caregivers of PWD and examine its relationship to general caregiver burden, as well as the PWD's current diet level and dementia severity.
Method: Data were collected from PWD-caregiver dyads participating in a prospective, dysphagia-focused clinical trial at the initial study visit.
Alzheimers Dement
December 2024
University of São Paulo Medical School, São Paulo, Brazil.
Introduction: Patients with severe cognitive impairment, with the progression of the disease, show behavioral impairments, loss of functionality and, in many cases, swallowing changes (dysphagia). Dysphagia comes with serious complications that can cause health damage, such as malnutrition, dehydration and serious lung damage secondary to aspirations. Eating process goes beyond nutritional intake, as it has a social, cultural, behavioral, physical and cognitive component.
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