DYSPHAGIA IN HOSPITALIZED OLDER ADULTS WITH DEMENTIA: A MIXED METHODS STUDY OF FAMILY CARE PARTNERS

Background: Oropharyngeal dysphagia affects up to 86% of hospitalized patients with dementia. Texture-modified food and thickened fluids are the mainstay of dysphagia management in patients with dementia, yet data on whether these diets improve clinical outcomes is lacking. Using a mixed methods approach, this study aimed to evaluate the following: 1) adherence to dysphagia diets 2) caregiver knowledge and understanding of dysphagia diets and 3) the decision-making process behind choosing a dysphagia or non-dysphagia diet.

Methods: Semi-structured phone interviews with caregivers of recently hospitalized older adults with dementia and dysphagia occurred between 7/26/21-8/13/21. Participants were identified via chart review. Interviews included assessments of: caregiver’s knowledge about the dysphagia diet prescribed and feeding instructions; patients’ adherence to the diet following hospital discharge; and information provided by the hospital to inform the caregiver’s chosen diet.

Results: Of the 24 caregivers interviewed, mean age and time since becoming a caregiver were 63.5 (SD 14.9) and 68.1 months (SD 64.4), respectively. With regard to diets and compliance: 54% of patients were on thickened liquids, 58% were on pureed foods, and only 33% of caregivers reported diet compliance. Themes for non-compliance included: poor communication with healthcare providers, patient refusal, and preference for quality of life. With regard to caregiver knowledge about outcome data for dysphagia diets: 33% believed that dysphagia diets decrease the risk of pneumonia; 46% thought that dysphagia diets prolong life; and 33% believed that dysphagia diets promote a more comfortable or enjoyable existence. Themes for caregiver diet choice included: patient safety, prolongation of life, patient compliance, lack of awareness of alternative choices, and quality of life.

Conclusions: Given the lack of outcome data to support a clinical benefit from dysphagia diets and the possible impact on quality of life for patients with dementia and dysphagia, the prescription of these diets in this population should involve an informed, evidence-based, shared decision-making process.