• Influence of positive aspects of dementia caregiving on caregivers' well-being: a systematic review

      Quinn, Catherine; Toms, G. (2019-10)
      Background and Objectives: There is a growing evidence base that informal caregivers can identify positive aspects of providing care and that this may have a beneficial influence on their well-being. The aim of this systematic review was to explore how positive aspects of caregiving (PAC) affects the well-being of caregivers of people with dementia. Research Design and Methods: We searched electronic databases for quantitative studies exploring the association between PAC and caregiver well-being. Studies were included if they involved informal (unpaid) caregivers of people with dementia, at least 75% of whom had to be residing in the community. A narrative synthesis was used to explore patterns within the data. Results: Fifty-three studies were included in the narrative synthesis. Most studies utilized a cross-sectional design. The majority of samples consisted primarily of spouses and female caregivers. Twenty different PAC measures were employed and studies referred to a variety of constructs, such as satisfactions, gains, meaning, and rewards. PAC was associated with lower depressive symptoms and burden. Conversely, PAC was associated with better mental health, quality of life, satisfaction with life, and competence/self-efficacy. PAC was not associated with self-rated health or personal strain/stress. Discussion and Implications: The findings suggest that identifying PAC is associated with better caregiver well-being, although further longitudinal studies are required to explore how this relationship changes over time. Interventions that enable caregivers to gain a more positive experience of caregiving could be beneficial for their well-being.
    • A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia

      De Poli, C.; Oyebode, Jan R.; Airoldi, M.; Glover, R. (2020-07)
      BACKGROUND: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet. Current research lacks a conceptual framework for explaining variation in satisfaction of care needs. This work develops a conceptual framework mapped onto the care delivery process to explain variations in whether, when and why care needs of people with dementia are met and to expose individual-, service-, system-level factors that enable or hinder needs satisfaction. METHODS: Data collected through 24 in-depth interviews and two focus groups (10 participants) with people with dementia and family carers living in the North East of England (UK) were analysed thematically to develop a typology of care needs. The need most frequently reported for people with dementia (i.e. for support to go out and about) was analysed using themes stemming from the conceptual framework which combined candidacy and discrepancy theories. RESULTS: The operationalisation of the framework showed that satisfaction of the need to go out was first determined at the point of service access, affected by issues about navigation, adjudication, permeability, users' resistance to offers, users' appearance, and systems-level operating conditions, and, subsequently, at the point of service use, when factors related to service structure and care process determined (dis)satisfaction with service and, hence, further contributed to met or unmet need. CONCLUSION: The conceptual framework pinpoints causes of variations in satisfaction of care needs which can be addressed when designing interventions and service improvements.