Abstract
BackgroundThe longitudinal study, “Couples Lived Experiences,” focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual’s emotional and physical health outcomes. Until now, most psychosocial research in dementia has focused either on the person with dementia (PWD) or the caregiver separately. The previous literature examining relationship characteristics and their role in outcomes for the caregiver and PWD is scant and suffers from methodological issues that limit the understanding of which relationship characteristics most influence outcomes for caregivers and care-receivers and what other factors may mitigate or exacerbate their effects.MethodsWe will enroll 300 dyads and collect information via online interviews of each member of the couple, every 6 months for 3 years. Relationship characteristics will be measured with a set of short, well-validated, and reliable self-report measures, plus the newly developed “Partnership Approach Questionnaire.” Outcomes include global quality of life, subjective physical health, mental health (depression and anxiety), and status change (transitions in levels of care; i.e., placement in a nursing home). Longitudinal data will be used to investigate how relationship characteristics are affected by cognitive, functional, and behavioral changes, and the impact of these changes on health outcomes. Qualitative data will also be collected to enrich the interpretation of results of quantitative analyses.DiscussionPsychosocial interventions have demonstrated effectiveness in promoting the wellbeing of PWD and their caregivers. The knowledge gained from this study can lead to the development or enhancement of targeted interventions for older couples that consider the impact of cognitive and functional decline on the relationship between members of a couple and thereby improve their wellbeing.Trial registrationThis study has been registered with ClinicalTrials.gov. ClinicalTrials.gov Identifier is: NCT04863495.
Highlights
The longitudinal study, “Couples Lived Experiences,” focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual’s emotional and physical health outcomes
Partner relationships may be a important form of social support, which is why the current study focuses on relationship characteristics of couples
The burden of dementia on older couples is especially poignant, and they generally endure the illness together, cognitive decline and behavioral symptoms alter the role of the partnercaregiver and impact their relationship in ways this study aims to elucidate
Summary
The longitudinal study, “Couples Lived Experiences,” focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual’s emotional and physical health outcomes. Psychosocial interventions have substantial evidence of efficacy in improving outcomes for caregivers and persons with dementia (PWD) (e.g., the NYU Caregiver Intervention (NYUCI) [5,6,7,8]. Older adults, whose relationships are generally of greater duration, were likely to have a higher concordance, which may reflect dynamic processes and shared experiences that increase with the length of the marriage [14]. The burden of dementia on older couples is especially poignant, and they generally endure the illness together, cognitive decline and behavioral symptoms alter the role of the partnercaregiver and impact their relationship in ways this study aims to elucidate
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