Self-management of dementia by family carers: conceptualisation and measurement

Background: Carers of people with dementia face unique challenges and are in need of continuous and extensive support in order to effectively manage the caregiving tasks and their role. Effective self-management of dementia by carers is an important but poorly investigated concept. The existing literature clearly highlights the need to clarify the essential components of this concept, and to develop an instrument to measure it. Both will contribute to improving support interventions for carers. Methods: A hybrid concept analysis was performed to conceptualise self-management of dementia by carers based on theory and practice. First, an exhaustive literature review was performed that included relevant publications about self-management of dementia. Then a number of experts in dementia care and carers were interviewed. The methods used to measure self-management of dementia by carers involved developing and investigating the content and the face validity of the Self-management of Dementia by Carers (SMDC) Scale. Then the internal consistency and test re-test reliabilities were investigated. Moreover, an exploratory factor analysis (Principal Axis Factoring) was performed to investigate the construct validity of the SMDC Scale. Results: The findings from the literature review in the hybrid concept analysis revealed 24 components of effective self-management that were grouped into actions, skills and attributes. The findings from the interviews in the hybrid concept analysis revealed 10 categories grouped into three themes: caregiving, self-care and having a helpful relationship with care recipients. The hybrid concept analysis resulted into conceptualising self-management of dementia by carers based on both theory and practice. This conceptualisation informed the development of the SMDC Scale. After extensive testing, the SMDC Scale showed acceptable validity and reliability. The results of the exploratory factor analysis revealed 6 factors and 36 items structure. Conclusion: This research conceptualised self-management of dementia by carers and developed a measure of this concept (the SMDC Scale). The conceptualisation can be used to develop self-management support interventions for carers. The SMDC Scale can be used to measure carers’ self-management capability and evaluate the effectiveness of support interventions.