Towards a middle-range theory of 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem): findings from a meta-study on mixed research.

Abstract

Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability? Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis. 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of <i>change</i> and <i>balancing</i> over time; (2) the characteristics of the care arrangement, including <i>needs</i>, the <i>carer role</i>, the <i>dyadic relationship</i> and <i>resources</i>; and (3) the context, which is determined by <i>society and culture</i> and the respective <i>healthcare system</i>. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer. This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice. This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).