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.
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.