Family Caregiver Online Survey (Dementia and Swallowing Difficulties)

December 17, 2025 updated by: University of Oregon

Influence of Swallowing Impairment on Burden Among Caregivers of Persons With Alzheimer's Disease and Related Dementias

The Family Caregiver Survey is a one-time, 30-minute, online survey for people living with and caring for a family member with dementia. The goal of this research is to explore the needs of family caregivers, specifically when it comes to managing swallowing difficulties (dysphagia).

Study Overview

Status

Completed

Conditions

Detailed Description

This research aims to increase our understanding of dysphagia-related caregiver burden and inform the development of a comprehensive dysphagia intervention, one that promotes the health and quality of life of both the caregiver and the person with dementia.

Aim 1. Quantify dysphagia's contribution to burden among family caregivers of persons with dementia across the disease trajectory to identify when may be best to intervene.

Aim 2. Characterize the moderating effects of caregiver readiness and support on dysphagia-related burden and care recipient quality of life to identify what are the most appropriate intervention targets.

Study Type

Observational

Enrollment (Actual)

219

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Oregon
      • Eugene, Oregon, United States, 97403
        • Remote study offered by the University of Oregon

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

Unpaid, adults living with and caring for a family member with dementia with or without swallowing difficulties.

Description

Inclusion Criteria:

  • Be a caregiver for a family member (or chosen family member) with dementia
  • Have been caregiving for at least 2 months
  • Live at home with the care recipient
  • Not be paid for the care provided
  • Be over the age of 18
  • Live in the US

Exclusion Criteria:

  • Not be a caregiver for a family member (or chosen family member) with dementia
  • Have been caregiving for less than 2 months
  • Not live at home with the care recipient
  • Be paid for the care provided
  • Be under the age of 18
  • Live outside in the US

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Demographic Information
Time Frame: Baseline
Demographic Questionnaire
Baseline
Eight-item Informant Interview to Differentiate Aging and Dementia (AD8)
Time Frame: Baseline
The AD8 is a screening test that is sensitive to detecting early cognitive changes associated with dementia. AD8 is a scale from 0-8, with higher scores signifying more severe cognitive decline.
Baseline
Global Deterioration Scale (GDS)
Time Frame: Baseline
The Global Deterioration Scale (GDS) provides an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer's disease. GDS is a scale from 0-7, with higher scores signifying more severe cognitive decline.
Baseline
International Dysphagia Diet Standardisation Initiative Functional Diet Scale (IDDSI-FDS)
Time Frame: Baseline
The IDDSI-FDS is a validated tool that was created in order to capture degree of diet texture restriction. Degree of diet texture restriction has been previously used in the literature as a self- or informant-reported proxy measure for dysphagia severity given that it represents the functional impact of the dysphagia on daily eating. The scale ranges from 0-8, higher scores indicating less diet texture restriction.
Baseline
Zarit Burden Interview
Time Frame: Baseline
The Zarit Burden Interview is a valid, reliable, and widely used self-report measure designed to quantify general caregiver burden, incorporating both objective and subjective burden. It queries common areas of concern, including those related to finances, health, social life, and interpersonal relationships, and explores both personal and role strain. Scores range from 0-88, with higher scores signifying more burden.
Baseline
Caregiver Analysis of Reported Experiences with Swallowing (CARES)
Time Frame: Baseline
The CARES is a valid and reliable questionnaire designed to screen for dysphagia-related caregiver burden. The 26-item questionnaire explores the potentially burdensome, more objective behavioral and functional changes that have occurred as a result of dysphagia (Part A) and the more subjective stressors experienced by the caregiver (Part B). Scores range from 0-26, with higher scores signifying more dysphagia-related caregiver burden.
Baseline
Caregiving Competence Scale
Time Frame: Baseline
The Caregiving Competence Scale, developed for caregivers of persons with dementia and adapted for dysphagia management, is a valid and reliable four-item scale measuring caregivers' perceived adequacy of their own performance. Scores range from 0-12, with higher scores signifying more perceived competence.
Baseline
Dysphagia-Related Knowledge Questionnaire
Time Frame: Baseline
The Dysphagia-Related Knowledge Questionnaire is a study-specific measure assessing caregiver knowledge of functional aspects of dysphagia and dysphagia management, including key definitions, signs/symptoms, management techniques, consequences, and the dysphagia trajectory. Scores can range from 0-13, with higher scores signifying more dysphagia-related knowledge.
Baseline
Preparedness for Caregiving Scale
Time Frame: Baseline
The Preparedness for Caregiving Scale, adapted for dysphagia management, explores caregivers' perceived preparation related to caring for the physical and emotional needs of their care recipient. Scores range from 0-12, with higher scores signifying more perceived preparedness.
Baseline
Multidimensional Scale of Perceived Social Support (MSPSS)
Time Frame: Baseline
The MSPSS is a self-report measure of subjectively assessed social support that has been validated for use within a variety of populations across the lifespan. Scores range from 12-84, with higher scores signifying more perceived social support.
Baseline
Eating Assessment Tool 10 (EAT-10)
Time Frame: Baseline
The EAT-10 is a validated, widely used clinically, and easy-to-administer 10-item symptom-specific swallowing outcomes tool designed to understand the extent to which an individual's quality of life has been impacted by dysphagia. While generally completed by patients themselves, previous research has suggested that proxies can reliably report on observable symptoms, such as those rated on the EAT-10 related to swallow function. Scores range from 0-40, with higher scores signifying more severe dysphagia symptoms and greater impact to quality of life.
Baseline

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Oregon

Collaborators

McMaster University

Investigators

  • Principal Investigator: Samantha Shune, The University of Oregon

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

November 7, 2023

Primary Completion (Actual)

July 12, 2025

Study Completion (Actual)

July 14, 2025

Study Registration Dates

First Submitted

May 24, 2024

First Submitted That Met QC Criteria

June 17, 2024

First Posted (Actual)

June 24, 2024

Study Record Updates

Last Update Posted (Actual)

December 18, 2025

Last Update Submitted That Met QC Criteria

December 17, 2025

Last Verified

June 1, 2025

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • STUDY00000738

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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