Informal Caregiving Networks of Older Adults with Dementia - Virtual

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Details

  • Location: Online
  • Age: 18+
  • Duration: 5 phone visits over 2 years
  • Visits: Online
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Eligibility Requirements

This study is enrolling up to 3 caregivers who care for the same person with dementia (PWD). This consists of the primary caregiver and up to 2 additional informal caregivers.

A primary caregiver, for the purposes of this study, is defined as having the primary responsibility for providing care and/or spending the most time providing care (as opposed to providing intermittent supplementary help to the PWD).

An informal caregiver, for the purposes of this study, is defined as one who provides direct care (e.g., assistance with daily activities of living or decision making) who is related to the PWD.

The PWD must:

  • Be 65 years+
  • Have moderate to severe cognitive impairment due to Alzheimer’s disease or other related dementias

The caregiver participants (formal or informal) must:

  • Be 18 years +
  • Be able to communicate in English or Spanish
  • Not be living in a nursing home or other residential care settings (e.g., assisted living facilities)

About the Study:

Dementia caregiving often involves multiple caregivers to meet the day-to-day care needs of the person with dementia (PWD). But caregiving research has traditionally been focused on a primary caregiver. This novel study aims to characterize informal caregiving networks of PWD over time to help identify strategies for alleviating caregiver burden.

Purpose:

This study is looking to:

  • map networks of informal caregiving to better reflect the real-world phenomenon of caregiving involving multiple caregivers
  • examine the role of network characteristics on caregiver and PWD outcomes.

What is Involved:

This phone-based study includes:

  • Completing surveys over the phone at enrollment and then every 6 months for 2 years (5 times total). 
    • Each survey completion will take ~1 hour and will be compensated.
  • After a primary caregiver has participated in the initial survey, up to 2 additional caregivers who are involved in caregiving for the PWD (as applicable) will be invited to participate in the study.
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