TY - JOUR
T1 - Resilience-promoting social networks among unpaid dementia caregivers
T2 - protocol for a mixed-methods, 2-year exploratory study
AU - Peckham, Allie
AU - Guest, M. Aaron
AU - Pituch, Keenan
AU - Hook, Jane
AU - Mporanyi, Marlene Umubyeyi
AU - Sadow, Sage
N1 - Publisher Copyright:
© Author(s) (or their employer(s)) 2025.
PY - 2025/2/16
Y1 - 2025/2/16
N2 - Introduction Unpaid caregivers of people living with dementia often experience lower levels of perceived life satisfaction and higher rates of depression and anxiety compared with those caring for individuals without Alzheimer's disease or related dementias. While research on unpaid caregiver well-being and satisfaction has primarily focused on the characteristics of people living with dementia and their dyadic relationships, it has not adequately explored the role of social networks in supporting unpaid caregiver well-being. In this study, we aim to fill this gap by taking an egocentric social network approach to understand the multiple dimensions of social relations among unpaid caregivers of people living with Alzheimer's disease or related dementia. Methods and analysis We will conduct a mixed-method, 2-year exploratory study that involves a structured survey-based telephone interview in year 1 and semistructured interviews in year 2 with caregivers of PLWD recruited through community and healthcare partners. Participants will participate in 1 60-min interview in year 1 (n=100) and a 45-60 min semistructured interview in year 2 (n=75). Eligibility for caregivers includes being an unpaid caregiver, aged 40 years or older, residing and providing care in Arizona or Nevada. The survey consists of questions about caregiver and care recipient demographics, caregiver background, caregiver stress, resilience, well-being and egocentric social network data. Network composition attributes, such as tie strength, the function of the relationship and reliance on network members, will also be assessed. In year 2, qualitative semistructured interviews will supplement these quantitative measures to understand network selection, perceived network changes over time and network strength. Ethics and dissemination The Arizona State Institutional Review Board (00018191) approved this study. All participants will receive electronic informed consent documents to review and sign. During the initial interview, participants will be asked if they have any questions about the informed consent documents. We will confirm that participants have completed the required consent form before the start of any research activity. The findings of this study will be disseminated through peer-reviewed journal articles, academic and community presentations, and community-focused publications targeting caregivers.
AB - Introduction Unpaid caregivers of people living with dementia often experience lower levels of perceived life satisfaction and higher rates of depression and anxiety compared with those caring for individuals without Alzheimer's disease or related dementias. While research on unpaid caregiver well-being and satisfaction has primarily focused on the characteristics of people living with dementia and their dyadic relationships, it has not adequately explored the role of social networks in supporting unpaid caregiver well-being. In this study, we aim to fill this gap by taking an egocentric social network approach to understand the multiple dimensions of social relations among unpaid caregivers of people living with Alzheimer's disease or related dementia. Methods and analysis We will conduct a mixed-method, 2-year exploratory study that involves a structured survey-based telephone interview in year 1 and semistructured interviews in year 2 with caregivers of PLWD recruited through community and healthcare partners. Participants will participate in 1 60-min interview in year 1 (n=100) and a 45-60 min semistructured interview in year 2 (n=75). Eligibility for caregivers includes being an unpaid caregiver, aged 40 years or older, residing and providing care in Arizona or Nevada. The survey consists of questions about caregiver and care recipient demographics, caregiver background, caregiver stress, resilience, well-being and egocentric social network data. Network composition attributes, such as tie strength, the function of the relationship and reliance on network members, will also be assessed. In year 2, qualitative semistructured interviews will supplement these quantitative measures to understand network selection, perceived network changes over time and network strength. Ethics and dissemination The Arizona State Institutional Review Board (00018191) approved this study. All participants will receive electronic informed consent documents to review and sign. During the initial interview, participants will be asked if they have any questions about the informed consent documents. We will confirm that participants have completed the required consent form before the start of any research activity. The findings of this study will be disseminated through peer-reviewed journal articles, academic and community presentations, and community-focused publications targeting caregivers.
KW - Aging
KW - Caregiver Burden
KW - Caregivers
KW - Dementia
KW - Social Support
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UR - http://www.scopus.com/inward/citedby.url?scp=85218472874&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2024-090528
DO - 10.1136/bmjopen-2024-090528
M3 - Article
C2 - 39956592
AN - SCOPUS:85218472874
SN - 2044-6055
VL - 15
JO - BMJ open
JF - BMJ open
IS - 2
M1 - e090528
ER -