A scoping review of intensive longitudinal methods in informal caregivers of people with dementia

Abstract

Abstract Background The daily life of informal caregivers assisting individuals with dementia widely varies throughout the day and week. As an answer, an increasing number of researchers have used intensive longitudinal methods (ILMs) such as diary studies, experience sampling methods, or ecological momentary assessment. Objectives and Methods The present scoping review aims at synthesizing the use of ILMs in informal dementia caregivers to clarify what is currently done and how, as well as what remains unaddressed. Results The screening process identified 48 studies from 22 different datasets. Synthesis of these studies showed the diversity of devices and uses of ILMs in informal care, including the exploration of associations between variables or accompanying an intervention. ILMs showed the important variability of caregiving phenomena, as well as the important association of momentary stress and well-being. Gaps were nevertheless identified, such as transparency in the construction of the tool or the absence of focus on emotions and dyads. Conclusions For now, this field of research remains in its infancy and does not seem to have reached its full potential as it has in other fields. Nevertheless, it appears that ILMs are promising tools for informal dementia caregivers as they contribute to understanding the complexity of their daily life, with changing resources and challenges. Future directions include focusing more on (emotion) regulation, temporal lags, and the use of ILMs in interventional designs. Trial registration The present review was registered on OSF (osf.io/b2qr4).

Keywords

• Informal caregivers
• Family carers
• Experience sampling
• Ecological momentary assessment
• Burden
• Intensive longitudinal methods