Aging Solo with Early Dementia

  • STATUS
    Recruiting
  • days left to enroll
    5
Updated on 25 March 2022
cognitive impairment
mild cognitive impairment
Accepts healthy volunteers

Summary

This study is investigating social networks and informal caregiving of people with early dementia who don't have spouses/partners or children. We are conducting interviews by phone or Zoom with adults aging solo with early dementia, as well as people who have been caregivers for someone with dementia who was not a close relative (such as an aunt or uncle, neighbor, or friend). By learning how people think about and ask for caregiving, we hope to design ways to help people with dementia and their care partners plan more effectively for the future.

Description

This study will identify how people with early dementia and non-family caregivers enter and navigate caregiving relationships. This formative work will inform development of interventions to help nontraditional dyads or networks prepare for common care needs in the dementia trajectory. The study is supported by a pilot grant from the Emory Center for Health in Aging.
We will conduct up to 30 one-time interviews by phone or Zoom (15 patient, 15 caregiver), up to 60 minutes each. Participants will receive a $50 gift card. There are no costs or direct benefits to participants; there is a small risk of discomfort discussing sensitive topics. Participants may disenroll at any point up to completion of the interview.
Interviews will be recorded and transcripts will be anonymized, with data secured in a secure cloud-based server at Emory University. Enrollment and data collection are expected to be complete by October 2022. We will conduct template analysis using Nvivo software and will present results at scientific meetings and in peer-reviewed journals. Results of the study will be used by a stakeholder panel to plan pilot testing of an intervention to improve patient preparedness for aging solo with dementia.

Details
Condition Dementia, Caregiver, Formal Caregiver
Clinical Study IdentifierTX291209
Last Modified on25 March 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

Adults with a diagnosis of mild cognitive impairment or early dementia who do not have a spouse or long-term partner and do not have children, who live independently in the community and are able to provide informed consent; or
Adults who provided weekly unpaid care and support for at least one year to non-family individuals with dementia

Exclusion Criteria

Residents of long-term care facilities, individuals who cannot provide consent
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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