Family Caregiver Online Survey (Dementia and Swallowing Difficulties)

NCT06471660 | Completed

• 1 other identifier: STUDY00000738
• Study Type: observational
• Target: 219
• Locations: 1 country
• Sites: 1

Brief Summary

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).

Conditions

Dementia; Dysphagia; Dementia Alzheimers; Dementia, Vascular; Dementia, Mixed; Dementia With Lewy Bodies; Dementia Frontal; Dementia, Mild; Dementia Moderate; Dementia Severe; Parkinson Disease Dementia; Dementia Frontotemporal

Keywords

caregiver; family caregiver; care partner; survey; remote; virtual; dementia; dysphagia

Outcome Measures

Primary Outcomes (11)

• Demographic Information

  Demographic Questionnaire

  Baseline

• Eight-item Informant Interview to Differentiate Aging and Dementia (AD8)

  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)

  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)

  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

  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)

  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

  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

  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

  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)

  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)

  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

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• McMaster University: collaborator
• University of Oregon: lead

Study Sites (1)

Remote study offered by the University of Oregon

Eugene, Oregon, 97403, United States

Location

MeSH Terms

Conditions

Dementia; Deglutition Disorders; Alzheimer Disease; Dementia, Vascular; Mixed Dementias; Lewy Body Disease; Lymphoma, Follicular; Pick Disease of the Brain

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Esophageal Diseases; Gastrointestinal Diseases; Digestive System Diseases; Pharyngeal Diseases; Otorhinolaryngologic Diseases; Tauopathies; Neurodegenerative Diseases; Cerebrovascular Disorders; Intracranial Arteriosclerosis; Intracranial Arterial Diseases; Leukoencephalopathies; Arteriosclerosis; Arterial Occlusive Diseases; Vascular Diseases; Cardiovascular Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Lymphoma, Non-Hodgkin; Lymphoma; Neoplasms by Histologic Type; Neoplasms; Lymphoproliferative Disorders; Lymphatic Diseases; Hemic and Lymphatic Diseases; Immunoproliferative Disorders; Immune System Diseases; Frontotemporal Dementia; Frontotemporal Lobar Degeneration

Study Officials

• Samantha Shune

  The University of Oregon

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 24, 2024
• First Posted: June 24, 2024
• Study Start: November 7, 2023
• Primary Completion: July 12, 2025
• Study Completion: July 14, 2025
• Last Updated: December 18, 2025

Record last verified: 2025-06

Locations

US (1)