Caregiver Networks project seeks to improve how we measure the relationships and complex networks of persons living with memory loss (PWML) and the various people who provide them support. This research will help us determine whether Network Canvas is a viable tool to capture social network data around persons with memory loss and their caregivers.
Our findings will help us better understand how to measure these networks more accurately by understanding how interpersonal interactions within these networks (e.g., conflict, closeness) impact the psychological and physical well-being of those involved.
Why is this work needed?
Most research concerning people living with memory loss and their caregivers concentrates on a sole dyadic relationship with a primary caregiver. In most real-world instances, however, care networks are far more complicated and include multiple family members and non-related friends all of whom may provide varying levels of support and care to an individual with memory loss.
Caregiver networks are understudied, in part, because they are difficult to measure, yet the interpersonal relationships within these systems may hold vital information necessary to improving the well-being of both caregivers and individuals with memory loss.
Addressing the Research Gap
To address this research gap, our team will conduct interviews nationally with people living with memory loss and their caregivers. Interviews will utilize a visual, user-friendly social network methodology software - Network Canvas - to ‘build’ the caregiver networks surrounding each individual with memory loss in the study. We will collect information about members of the care network who are traditionally not included in caregiver network research, and capture data such as self-reported and perceived contributions of others related to the care of the person with memory loss and interpersonal relationships within the network.
Leveraging our Software
Our Aims
Unveiling Caregiver Network Dynamics for People with Memory Loss
We will utilize Network Canvas to measure and map the social networks of caregivers for people with memory loss. Utilizing this measurement approach, we aim to elucidate the diverse ways individuals define "family" caregivers, challenging the conventional caregiver-PWML duo and advocating for caregiver networks as a more authentic research approach.
Deciphering Well-being Predictors in Caregiver-PWML Networks
We aim to identify network predictors impacting the well-being of caregiver-PWML dyads. Examining diverse caregiver contributions, we'll assess inter-network influences on burden, anxiety, stress, and overall well-being, among others.
Project Details
This research project (R01AG083034) is funded by the National Institute on Aging of the National Institutes of Health and is led by an interdisciplinary team spanning the fields of geriatrics, health disparities, psychology, social network analysis, and human-centered data collection methodology.
Project Team
Dr. Lindquist is Chief of Geriatrics at Northwestern Medicine and Professor of Medicine at Northwestern University Feinberg School of Medicine.
Principal Investigator
Dr. Birkett is an Associate Professor in the Department of Medical Social Sciences and Preventative Medicine, and the Director of the Complex Systems and Health Disparities (CONNECT) Research Program within the Institute for Sexual and Gender Minority Health and Wellbeing.
Principal Investigator
Patrick Janulis
PhD
Co-Investigator
Judith Moskowitz
PhD, MPH
Co-Investigator
Norine Wong
MSW, BA
Co-Investigator
Chris Forcucci
RN
Co-Investigator
Alaine Murawski
LSW
Charlie Olvera
MA
Vanessa Ramirez-Zohfeld
MPH
Celie Joblin
MPH
Kate Banner
MA
Joshua Melville
MSc
Louis Porras
BA