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Dementia Caregiving Qualitative Study

  • Study HIC#:2000031451EXEMPT
  • Last Updated:10/27/2021

Providing informal, family care for parents living with Alzheimer's disease or related dementia often involves learning new skills, facing challenges, and discovering resources. This study will help researchers discover what family caregivers of parents living with Alzheimer's disease or related dementia have experienced and learned while they provided care. This study consists of a one-time Zoom or phone interview with a researcher. Men and woman ages 40-60 who cared for a parent living with Alzheimer’s disease or related dementia who passed away between six months and three years ago are eligible to participate. Participants will be compensated for their time.

  • Start Date10/18/2021
  • End Date12/31/2022

Trial Purpose and Description

Providing informal, family care for parents living with Alzheimer's disease or related dementia often involves learning new skills, facing challenges, and discovering resources. This study will help researchers discover what family caregivers of parents living with Alzheimer's disease or related dementia have experienced and learned while they provided care. This study consists of a one-time Zoom or phone interview with a researcher. Men and woman ages 40-60 who cared for a parent living with Alzheimer’s disease or related dementia who passed away between six months and three years ago are eligible to participate. Participants will be compensated for their time.

Eligibility Criteria

Participants will be up to 40 adult children or adopted children of a deceased, late-stage ADRD parent. 

  • Eligibility criteria include that participants are age 40-60, 
  • are US citizens, speak English as a primary language, 
  • pass a screening for simple cognitive impairment (Orientation-Memory-Concentration test with < 6 errors. Katzman et al., 1983), 
  • consider themselves to have been a primary caregiver for their parent with ADRD (including, having provided at least three months of in-home care to their parent with ADRD, and provided at least one instrumental activity of daily living to their parent), 
  • were providing care to the parent up until their death, that the death occurred between six months and three years prior, 
  • and that the participant be willing to recall specific experiences from caregiving. 

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