Risk and protective factors for psychosocial resilience in spousal caregivers for spouses with cognitive decline - Abstract
Family caring plays an essential role in sustaining health systems, but can place social, financial,
physical, and emotional demands on carers. Understanding what caregivers need to support them is key to
facilitating family care. Spousal carers for spouses with Alzheimer’s and Alzheimer’s-related dementia
(AD/ADRD) are particularly subject to additional stress and burden. Why some carers seem to manage their
long-term well-being better than others is less understood. Differences in well-being observed between
caregivers may be an indicator of how they differ in adapting to changing circumstances and their ability to
maintain or recover their mental health and well-being following an adverse event (psychosocial resilience).
This study leverages data from international Harmonized Cognitive Assessment Protocol (HCAP) studies
and longitudinal data from The Health and Retirement Study (HRS) framework of biennial aging cohort
studies. The HRS (15 waves), The Irish Longitudinal Study on Ageing (TILDA) (6 waves), the English
Longitudinal Study of Ageing (ELSA) (9 waves) and the Survey of Health, Ageing and Retirement in Europe
(SHARE) (8 waves) are large, nationally representative, prospective cohort studies that examine the social,
economic and health circumstances of community-dwelling adults aged ≥50 years from which spousal carer-
dyads can be drawn. Cognitive assessments are available from HCAP and detailed measurements of well-
being and mental health and cognition from the individual longitudinal cohort studies (including measures of
depressive symptoms, quality of life and life satisfaction), in addition to well-characterized social, economic
and health data, formal care provision, and policy context. This study aims to: (1) Identify changes over time
in psychosocial resilience in mental health and well-being, and cognitive health in spousal caregivers for
spouses with normal cognition/AD/ARD; (2) Determine the risk and protective factors associated with
resilient groups and investigate what role societal and policy contexts play in shaping these trajectories; (3)
Investigate how the needs of both the caregiver and the care recipient influence psychosocial resilience. To
address these aims, multiple waves of HRS framework survey data combined with HCAP data will be
investigated and advanced longitudinal statistical techniques (Growth mixture models, multilevel analysis and
actor-partner interdependence models) will be applied.
Given the complex nature of this study, we have assembled an outstanding multi-disciplinary team of
clinical and academic researchers with expertise in each of the constituent parts of the project. Study results
will identify important risk and protective factors for psychosocial resilience in carer-dyads that are amenable
to intervention. In doing so, the study will inform the priorities for social and community-level services and
supports for spousal caregivers to enhance resilience and maintain cognition in both caregivers and their
spouses, as well as aid in the design of new policies and programs to meet these needs.
