Web Tool for Caregiver Burden in Alzheimer's Disease

Overseen By Study Coordinator

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Northwell Health

Disqualifiers: Feeding tube, Not discharged home, Others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 2

80 Participants Needed

Trial Summary

What is the purpose of this trial?

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.

Research Team

Liron Sinvani, MD

Principal Investigator

Northwell Health

Eligibility Criteria

This trial is for primary care partners, aged 18 or older, of patients 65+ with Alzheimer's and related dementias who have swallowing difficulties. Participants must speak English, be the patient's legal representative or designated by them, and have web access.

Inclusion Criteria

I am proficient in English.

I am legally authorized to make decisions for a patient.

I have a device like a smartphone or computer that can access the internet.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants in the intervention group receive access to the WeCareToFeedDysphagia tool and receive 3 text message reminders over 3 weeks to use the tool.

3 weeks

Remote, web-based survey at baseline, 1 month, and 3 months

Follow-up

Participants are monitored for changes in care partner burden and quality of life at 1 month and 3 months post hospital discharge.

3 months

Remote, web-based survey at 1 month and 3 months

Treatment Details

Interventions

• WeCareToFeedDysphagia

Trial Overview The study tests if a website tool called WeCareToFeedDysphagia can ease the burden on caregivers of dementia patients with swallowing issues. It compares caregivers using this tool to those without it while both receive expert contact info.

Participant Groups

Group I: Enhanced Control + WeCareToFeedDysphagia Experimental Treatment 1 Intervention

Participants receive usual care from their medical team and receive contact information for speech-language pathology follow-up care. Participants will also receive access to the WeCareToFeedDysphagia web tool and receive text message reminders to use the tool.

Group II: Enhanced Control Active Control 1 Intervention

Participants receive usual care from their medical team and receive contact information for speech-language pathology follow-up care.

Who Is Running the Clinical Trial?

Northwell Health

Lead Sponsor

Trials

481

Recruited

470,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+