An observational study in Family Research and Dementia, sponsored by Yale University. Completed at 1 site in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2024-12-18.
Sponsored by Yale University · Observational
Two remote phone/zoom calls are required to assess experiences as a family coping with dementia.
Using a combination of paper or online surveys in addition to interactive visits with blood pressure monitoring, participants are observed interacting with each other. Blood pressure devices are mailed to their homes and only worn for six minute intervals. The first visit generally lasts one hour and the second visit 90 minutes.
3,678 studies on the registry are indexed under Alzheimer Disease; 872 are open to participants now.
This study's enrollment of 354 is above the median of 200 across 751 observational studies indexed under Alzheimer Disease.
Browse Alzheimer Disease studies →Yale University is the lead sponsor of 1,724 studies on the registry; 298 are open to participants now.
Of its 210 completed or terminated interventional studies of FDA-regulated products, 126 (60%) have results posted.
Counted across the registry records on this site, refreshed daily.
In this study, adult children of a parent over 55 with early stage dementia who are responsible for helping parent with at least one task will be recruited
Exclusion Criteria:
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parent with dementia and an adult child who is a caregiver
Caregiver demand appraisals
(1a) Caregiver demand appraisals: 6 items from the 12-item Zarit Burden Interview (ZBI) will assess caregiver appraisals of demands (e.g., That because of the time you spend with your relative that you don't have enough time for yourself?". Caregivers self-report aspects of burden on a scale from 0 (never) to 4 (nearly always; α= .86). Higher numbers indicate higher demands. Administration is 2.5 minutes
Time frame: Baseline and one year
Caregiver perceived stress
(1b) Caregiver perceived stress: 6 items from the 12-item Zarit Burden Interview (ZBI) will assess caregiver perceived stress (e.g., "Stressed between caring for your relative and trying to meet other responsibilities (work/family)?"). Caregivers self-report aspects of burden on a scale from 0 (never) to 4 (nearly always; α= .86). Higher numbers indicate higher stress. Administration is 2.5 minutes.
Time frame: Baseline and one year later
Caregiver negative Coping
The Brief COPE Inventory is a shortened version (28 items) of the COPE inventory in which respondents indicate how often they use a particular coping strategy under stress as ranked on a 4-point scale with 1 (I haven't been doing this at all) to 4 (I've been doing this a lot). Examples of items include "I've been using alcohol or drugs to help me get through it." and "I've been criticizing myself" (α=0.72, 0.84, 0.75 for emotion, problem, and dysfunction focused subscales). Higher scores indicate poorer coping. Administration is 10 minutes
Time frame: Baseline and one year later
Relational Functioning
The Relationships Inventory will measure the degree to which individuals perceive that they can rely on their parent or child for help and support when needed (e.g., "to what extent can you count on your parent/child for help with a problem?" "to what extent can you count on your parent/child to give you honest feedback, even when you might not want to hear it?"). Ratings will be made on a scale from 1 (not at all) to 5 (very much; α=.79). Four additional items will assess the degree to which individuals perceive that their parent/child is a good support-provider (e.g., "overall, my parent/child is a good support-provider" using a scale from 1 (strongly disagree) to 7 (strongly agree). Higher numbers indicate higher relationship functioning. Administration is 5 minutes.
Time frame: Baseline and one year later
Health
Health-related quality of life will be assessed using the 12-item Short Form Survey (SF-12) version 1.0, documenting the extent of limitations in a number of domains. Higher scores indicate better physical and mental health-related quality of life. It has been used with both persons with ADRD and caregivers. Administration is 5 minutes. The minimum and maximum scores are 0 and 100.
Time frame: Baseline and one year later
Documents are hosted by the registry — open the source record to download them.
Plan to share: No
This study is completed, as verified in Dec 2024. You cannot join it, but the record below documents what was studied.
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