Community-Dwelling Patients With Dementia and Their Informal Caregivers With and Without Case Management: 2-Year Outcomes of a Pragmatic Trial

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services.

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“…A total of 521 dyads from regions with and without case management across the Netherlands were included [16]. …”

Section: Methodsmentioning

confidence: 99%

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

Joling

Windle

Dröes

et al. 2016

Dement Geriatr Cogn Disord

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“…clinical or trained in dementia care) [54]. It may be more successful when more intensive (up to 50 clients per fulltime worker), with proactive and timely follow-up [55,56]. It should deliver relationship-based, holistic, enabling and accessible care [57].…”

Section: Dementia Case Management (Collaborative Care/care Coordination)mentioning

confidence: 99%

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

Lord

Beresford‐Dent

Rapaport

et al. 2019

Soc Psychiatry Psychiatr Epidemiol

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Purpose To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. Methods We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. Results Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumerdirected and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. Conclusions Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. Trial registration PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

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“…Effective interventions for the person with dementia are, for example, those supporting the person to adapt to, and cope with, their changing abilities and limitations, including cognitive rehabilitation therapies, such as goal-oriented tailored cognitive rehabilitation therapy, cognitive stimulation group therapy, cognitive training, and exercise and psychomotor therapy (Bahar-Fuchs et al, 2013; Dr€ oes et al, 2011); case management based on the model of empowerment (MacNeil Vroomen et al, 2015), and other interventions aimed to enhance a person's strengths and capabilities (from care for basic needs, to support to participate in a community, taking stock of one's life through reminiscence, and providing opportunities to gain new skills); staff awareness training, which aims to enable professional caregivers to better identify signs of awareness in people with dementia to improve their quality of life and that of their caregivers (Clare et al, 2013); and support groups (Toms, Clare, Nixon, & Quinn, 2015). Other beneficial interventions are those aimed at recognizing care needs (Miranda-Castillo, et al, 2013) and at providing meaningful activities creating stimulating, positive experiences, like green care farms (de Boer et al, 2015;Verbeek, 2015) and horticultural activities (Gonzalez & Kirkevold, 2015), and when dementia is more advanced, non-verbal communication methods, like doll therapy, snoezelen and Namaste (Shin, 2015;Stacpoole, Hockley, Thompsell, Simard, & Volicer, 2015;van Weert, van Dulmen, Spreeuwenberg, Ribbe, & Bensing, 2005).…”

Section: Interventionsmentioning

confidence: 99%

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice

Dröes

Chattat

Diaz

et al. 2016

Aging & Mental Health

159

195

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Community-Dwelling Patients With Dementia and Their Informal Caregivers With and Without Case Management: 2-Year Outcomes of a Pragmatic Trial

Cited by 28 publications

References 34 publications

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice

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