Oropharyngeal dysphagia (OD) affects nearly 90% of hospitalized persons with dementia. Yet, little is known about the care partner experience. The purpose of our study was to describe the experience of care partners related to OD management in patients with dementia as they transition from the hospital to the community setting.

Using a mixed-methods approach, we conducted telephone interviews with care partners of recently hospitalized older adults with dementia and OD. Interviews consisted of quantitative/qualitative assessments: communication with health care team, perception about risks/benefits of dysphagia diet, and informational needs. Descriptive statistics were used for quantitative data. For the qualitative data, transcripts were independently coded by research team and categorized into themes.

Of the care partners interviewed (N = 24), mean age was 63.5 (SD = 14.9), 62.5% were female, and 66.7% were White. Nearly 60% of patients had severe dementia, and 66.7% required feeding assistance. Care partners (n = 18) reported moderate burden of 14.11 (SD = 10.03). Most care partners (83.3%) first learned about OD during hospitalization. Only 29.2% of care partners reported that they discussed OD with a physician. Care partner perception of dysphagia diet risks/benefits ranged widely: 33.3% thought dysphagia diets would promote a more enjoyable existence. Over half (54.2%) of care partners indicated no choice regarding dysphagia diets was presented to them. Two thirds (n = 16) of care partners were nonadherent to diet recommendations; the top reason (n = 13%) was diet refusal by patients. Although 83.3% of care partners wanted additional information regarding dysphagia management, only 20.8% sought any.

Our findings highlight that care partners of persons with dementia face significant OD-related communication and informational gaps, which may lead to elevated burden. Future studies are needed to address unmet OD-related care partner needs.