• 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.
    • Positive experiences in dementia care-giving: findings from the IDEAL programme

      Quinn, Catherine; Toms, G.; Rippon, I.; Nelis, S.M.; Henderson, C.; Morris, R.G.; Rusted, J.M.; Thom, J.M.; van den Heuvel, E.; Victor, C.; et al. (2022)
      There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.