Reducing Burden in Care Partners of Community-Dwelling Persons With Dementia and Oropharyngeal Dysphagia
Completed · Not applicable
Conditions studied: Caregiver Burden, Alzheimer Disease, Dementia, Oropharyngeal Dysphagia
In brief
The goal of this clinical trial is to learn if a newly-created website tool, called WeCareToFeedDysphagia, helps to reduce feelings of burden in care partners of patients with Alzheimer's disease and related dementias (AD/ADRD) who were diagnosed with trouble swallowing (oropharyngeal dysphagia). The main questions this first test (pilot) study aims to answer are: * With the data this pilot study will collect, how do we best measure how strong a relationship is between care partners who use WeCareToFeedDysphagia and reduced feelings of burden (effect size estimates)? * Is it possible (feasible) to successfully repeat this study in a larger clinical trial with more research participants? Researchers will compare a group of care partners who have access to the WeCareToFeedDysphagia tool (intervention) to a group of care partners who do not have access to the tool. Both groups will receive contact information for help from a speech language pathologist expert (enhanced usual care). Participants will: * be given access to the web tool and receive 3 text message reminders over 3 weeks to use the tool (intervention group only). * be asked to complete a remote, web-based survey three times: when enrolled in the study, at 1 month following patient leaving the hospital, and at 3 months following patient leaving the hospital.
Key facts
- Study ID
- NCT06557863
- Run by
- Northwell Health
- People needed
- 80
- Starts
- 2024-10-08
- Expected to finish
- 2025-08-01
- Last updated by the study team
- 2026-06-01
Who can join
Age: 18 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Self identifies as the primary care partner of an older adult patient (patient aged 65 years or older) with Alzheimer's disease and related dementias (AD/ADRD) and oropharyngeal dysphagia (OD) admitted to the Northwell Health medicine service
- Care partner age 18 years or older
- Designated as the legally authorized representative (LAR) or health care proxy (HCP), or designated by the LAR or HCP to participate
- Proficient in English
- Has access to a device (e.g. smartphone, iPad, computer) capable of accessing a web browser
You may not qualify if…
- Care partner of patient with a percutaneous feeding tube [i.e. percutaneous endoscopic gastrostomy (PEG) tube, percutaneous endoscopic jejunostomy (PEJ) used exclusively]
- Care partner of patient who will not be discharged to the home or community setting (e.g., home, assisted living, independent living)
- Care partner will not be involved with OD management (e.g. buying or making food, feeding, supervising) after hospital discharge
Where it is running
- Feinstein Institutes for Medical Research — Manhasset, New York, United States
Full record on ClinicalTrials.gov
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