Adequate Self-Care = Better Patient Care? How Does Caring for a Family Member with Dementia Affect the Caregiver?

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    Recruiting
  • End date
    Mar 16, 2023
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Updated on 25 March 2022
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dementia
alzheimer's disease
Online studies
Accepts healthy volunteers

Summary

My name is Meredith Adams, and I’m a second-year graduate student majoring in Speech Pathology at Northeastern University. I am conducting a master's student thesis study with Dr. Therese O’Neil-Pirozzi. The goal of this IRB-approved one time, online, anonymous 10-15 minute survey study (NU IRB# 22-02-07) is to create a survey tool to assess how caring for a family member with dementia affects perceptions of family caregivers regarding their own physical health, mental health, quality of life (QOL), and financial status. This survey is designed in the hopes that carer lives may be improved by providing needed services and resources for families of individuals with dementia.

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Description

The primary purpose of this study is to assess how caring for a family member with dementia affects perceptions of family caregivers who are 18 years of age and older in the areas of physical health, mental health, quality of life (QOL), and financial status. While some research has evaluated the psychological burden of becoming a professional caregiver for an adult with a degenerative illness or acquired brain injury, there is less research considering the burden of being a familial caregiver to a person with dementia. This research seeks to help close that gap. Participants for this study will be adult family caregivers between the ages of 18 and older, who do not have a diagnosis of Alzheimer’s Disease or other related dementias and are not professional caregivers (ie. nurses, CNAs, SNF employees). For this study, a familial caregiver is defined as a person who is actively participating in the patient's care, such as ADLs, and are providing emotional and physical support for the person with dementia. Additionally, familial caregivers must live with the individual with dementia and actively participate in a minimum of 15 hours a week of caring to participate in this study. Demographic information will be sourced from caregivers and will include their age, age of person whom they care for with dementia, how long have they had a dementia diagnosis, type of dementia if known, and, given descriptors of mild/moderate/severe dementia, a severity rating of the individual’s dementia, gender, race, ethnicity, geographical location (urban vs. rural), relationship to the person for whom they are caring (i.e. parent, spouse/partner, sibling, son/daughter, other family members, and friends), diagnosed health conditions, and how many hours a week they spend caring for their family member with dementia. More than one caregiver of the same individual may participate in the study if interested.

Details
Condition Dementia, Alzheimer's Disease, Caregiver
Clinical Study IdentifierTX291208
Last Modified on25 March 2022

Eligibility

 Yes No Not Sure

Inclusion Criteria

adults aged 18 years of age and older
do not have a diagnosis of Alzheimer’s Disease or other related dementias
are not a professional caregiver (ie. nurses, CNAs, SNF employees)
are living with the individual with dementia
participate in a minimum of 15 hours a week of caring

Exclusion Criteria

younger than 18 years of age
have a diagnosis of Alzheimer’s Disease or other related dementias
are a professional caregiver (ie. nurses, CNAs, SNF employees)
are not living with the individual with dementia
participate in a less than 15 hours a week of caring
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