Clinical trial NCT06471660: Family Caregiver Online Survey (Dementia and Swallowing Difficulties)
Official title: Influence of Swallowing Impairment on Burden Among Caregivers of Persons With Alzheimer's Disease and Related Dementias
Study type: OBSERVATIONAL
Overall status: RECRUITING
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
Lead sponsor: University of Oregon
Sponsor class: OTHER
Collaborators: name: McMaster University
First posted: 2024-06-24
Enrollment: 250
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: OTHER
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Unpaid, adults living with and caring for a family member with dementia with or without swallowing difficulties.

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).

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.

Eligibility criteria: 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

Primary outcomes:
measure: Demographic Information
timeFrame: Baseline
measure: Eight-item Informant Interview to Differentiate Aging and Dementia (AD8)
timeFrame: Baseline
measure: Global Deterioration Scale (GDS)
timeFrame: Baseline
measure: International Dysphagia Diet Standardisation Initiative Functional Diet Scale (IDDSI-FDS)
timeFrame: Baseline
measure: Zarit Burden Interview
timeFrame: Baseline
measure: Caregiver Analysis of Reported Experiences with Swallowing (CARES)
timeFrame: Baseline
measure: Caregiving Competence Scale
timeFrame: Baseline
measure: Dysphagia-Related Knowledge Questionnaire
timeFrame: Baseline
measure: Preparedness for Caregiving Scale
timeFrame: Baseline
measure: Multidimensional Scale of Perceived Social Support (MSPSS)
timeFrame: Baseline
measure: Eating Assessment Tool 10 (EAT-10)
timeFrame: Baseline
Secondary outcomes:
Other outcomes:
Locations:
city: Eugene
country: United States
facility: Remote study offered by the University of Oregon
state: Oregon
Study officials:
affiliation: The University of Oregon
name: Samantha Shune
role: PRINCIPAL_INVESTIGATOR
References: