Families Coping Together With Alzheimer's Disease

NCT04642885 | Completed

• 2 other identifiers: 2000024219R01AG058565
• Study Type: observational
• Target: 354
• Locations: 1 country
• Sites: 1

Brief Summary

Two remote phone/zoom calls are required to assess experiences as a family coping with dementia.

Conditions

Family Research; Dementia

Outcome Measures

Primary Outcomes (3)

• 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

  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.

  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

  Baseline and one year later

Secondary Outcomes (2)

• Relational Functioning

  Baseline and one year later

• Health

  Baseline and one year later

Study Arms (1)

dyad

parent with dementia and an adult child who is a caregiver

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

• Parent must be 55 plus with symptoms or a diagnosis of dementia
• Adult child must be over 18 and involved in some way with assisting parent.

Sponsors & Collaborators

• Yale University: lead
• National Institute on Aging (NIA): collaborator
• National Institutes of Health (NIH): collaborator
• Department of Health and Human Services: collaborator

Study Sites (1)

Yale school of Public Health

New Haven, Connecticut, 06511, United States

Location

MeSH Terms

Conditions

Dementia

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders

Study Officials

• Joan Monin, PhD

  Yale University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 20, 2020
• First Posted: November 24, 2020
• Study Start: June 30, 2019
• Primary Completion: November 30, 2023
• Study Completion: November 30, 2024
• Last Updated: December 18, 2024

Record last verified: 2024-12

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)