Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.
Abstract The recent shift towards a holistic, person-centered approach to older people’s care that considers a person’s overall well-being requires collaboration within and between medical and social healthcare organizations. To map and contextualize the scientific literature on the effectiveness of integrated person-centered care interventions, including implementation experiences in Sweden. Publications were identified by searching MEDLINE and contacting experts. Workshop discussions in Stockholm (Sweden), on 21/03/2023, were recorded and transcribed. Original peer-reviewed articles published in Swedish or English from 01/01/2000 to 10/03/2023, were screened. Evidence from included studies was narratively synthesized and interventions were categorized using two frameworks: (1) Integrated Care for Older People (ICOPE) and (2) Integrated People Centered Health Services (IPCHS). Workshop discussions were thematically summarized. We included 73 publications analyzing 31 unique and heterogeneous interventions pertaining, mainly, to the micro and meso levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability in 48%, and service utilization in 58%. Experts emphasized the need for participatory designs and shared ownership for adoption and scalability of interventions, and transitions from person- to people-centered integrated care. In conclusion, integrated person-centered care interventions demonstrated the strongest evidence for the optimization of service utilization. Unexpectedly, evidence for health outcomes was less consistent. This could be due to several issues mentioned by the experts, such as poor evaluation practices, lack of participatory research approaches, and scarcity of macro-level initiatives. Our findings offer internationally transferable perspectives on the real-world challenges in delivering integrated care.
Abstract Older adults are increasingly stepping into informal caregiving roles, primarily due to the inadequacy of formal care services to meet their growing demands. We aimed at identifying profiles of older caregivers according to their quality of life (QoL), and describing the factors characterizing them. A cross-sectional analysis of a cohort study was conducted, including informal caregivers from the Swedish National Study on Aging and Care in Kungsholmen. The study included a total of 1382 observations, corresponding to 994 caregivers aged 60 and above, from waves 1 (2001) to 5 (2013). Multiple Correspondence Analysis combined with cluster analysis were used to obtain the caregiver profiles according to the items of SF-12 QoL instrument. Multinomial regression was performed to determine which demographic, clinical and psychosocial factors were related to belonging to each profile. Three caregiver profiles were identified according to the physical and mental health domains of their QoL. People with good QoL (58%) had better mental and physical health status, and reported a lower caregiver burden. People with intermediate QoL (35%) were older than those in the other profiles and, along with the group with poor QoL (7%), had worse health status and often received care themselves. The poor QoL group was also characterized by higher prevalence of depression and perception of burden, and lower levels of social support. Different modifiable factors are associated with the QoL of older informal caregivers, especially in the mental health domain, and could thus be the target of future preventive interventions.
Umbrella reviews (reviews of systematic reviews) are increasingly used to synthesize findings from systematic reviews. One important challenge when pooling data from several systematic reviews is publication overlap, that is, the same primary publications being included in multiple reviews. Pieper et al. have proposed using the corrected covered area (CCA) index to quantify the degree of overlap between systematic reviews to be pooled in an umbrella review. Recently, this methodology has been integrated in Excel- or R-based tools for easier use. In this short letter, we highlight an important consideration for using the CCA methodology for pairwise overlap assessment, especially when reviews include varying numbers of primary publications, and we urge researchers to fine-tune this method and exercise caution when review exclusion decisions are based on its output.
OBJECTIVES:This umbrella review aimed to evaluate whether certain interventions can mitigate the negative health consequences of caregiving, which interventions are more effective than others depending on the circumstances, and how these interventions are experienced by caregivers themselves. DESIGN:An umbrella review of systematic reviews was conducted. DATA SOURCES:Quantitative (with or without meta-analyses), qualitative and mixed-methods systematic reviews were included. ELIGIBILITY CRITERIA:Reviews were considered eligible if they met the following criteria: included primary studies targeting informal (ie, unpaid) caregivers of older people or persons presenting with ageing-related diseases; focused on support interventions and assessed their effectiveness (quantitative reviews) or their implementation and/or lived experience of the target population (qualitative reviews); included physical or mental health-related outcomes of informal caregivers. DATA EXTRACTION AND SYNTHESIS:A total of 47 reviews were included, covering 619 distinct primary studies. Each potentially eligible review underwent critical appraisal and citation overlap assessment. Data were extracted independently by two reviewers and cross-checked. Quantitative review results were synthesised narratively and presented in tabular format, while qualitative findings were compiled using the mega-aggregation framework synthesis method. RESULTS:The evidence regarding the effectiveness of interventions on physical and mental health outcomes was inconclusive. Quantitative reviews were highly discordant, whereas qualitative reviews only reported practical, emotional and relational benefits. Multicomponent and person-centred interventions seemed to yield highest effectiveness and acceptability. Heterogeneity among caregivers, care receivers and care contexts was often overlooked. Important issues related to the low quality of evidence and futile overproduction of similar reviews were identified. CONCLUSIONS:Lack of robust evidence calls for better intervention research and evaluation practices. It may be warranted to avoid one-size-fits-all approaches to intervention design. Primary care and other existing resources should be leveraged to support interventions, possibly with increasing contributions from the non-profit sector. PROSPERO REGISTRATION NUMBER:CRD42021252841; BMJ Open: doi:10.1136/bmjopen-2021-053117.
BACKGROUND:Excessive blood glucose promotes neuropathological cognitive decline in individuals with type 2 diabetes mellitus and the metabolic syndrome, but no systematic synthesis of the evidence for the same association exists in individuals without these conditions.OBJECTIVES:To systematically review studies exploring the role of glucose on cognition, dementia risk, and related biomarkers in adults without diabetes or metabolic syndrome.DATA SOURCES:We searched databases from inception until July 2021 and manually searched the reference lists of included studies. Risk of bias was assessed using the Joanna Briggs Institute tool.RESULTS:We found 46 observational studies including approximately 98,216 participants. Substantial heterogeneity in study results precluded drawing definitive conclusion whether blood glucose levels are associated with cognition or dementia risk. Higher blood glucose, however, was associated with greater amyloid burden, brain atrophy, and reduced cortical thickness.CONCLUSIONS AND IMPLICATIONS:High glucose concentrations in blood may exacerbate dementia-related neuropathology but whether this translates into pathological cognitive decline or elevate dementia risk later in life remains unclear.
Background The negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups of older informal caregivers (1) experience the greatest subjective burden and (2) incur a faster decline in objective health status. Methods From a total of 3363 older participants in the Swedish National study on Aging and Care in Kungsholmen (SNAC-K), we identified 629 informal caregivers (19.2%, mean age 69.9 years). Limitations to life and perceived burden were self-reported, and objective health status was quantified using the comprehensive clinical and functional Health Assessment Tool (HAT) score (range: 0–10). Ordered logistic regressions and linear mixed models were used to estimate the associations between caregiving-related exposures and subjective outcomes (cross-sectionally) and objective health trajectories (over 12 years), respectively. Results Having a dual role (providing and receiving care simultaneously), caring for a spouse, living in the same household as the care receiver and spending more hours on caregiving were associated with more limitations and burden. In addition, having a dual role (β=−0.12, 95% CI −0.23 to −0.02) and caring for a spouse (β=−0.08, 95% CI −0.14 to −0.02) were associated with a faster HAT score decline. Being female and having a poor social network were associated with an exacerbation of the health decline. Conclusions Both the heterogeneity among caregivers and the related contextual factors should be accounted for by policymakers as well as in future research investigating the health impact of informal caregiving.
Introduction Informal (unpaid) caregivers play an essential role in caring for older people, whose care needs are often not fully met by formal services. While providing informal care may be a positive experience, it can also exert a considerable strain on caregivers’ physical and mental health. How to best support the needs of informal caregivers remains largely debated. This umbrella review (review of systematic reviews) aims to evaluate (1) whether effective interventions can mitigate the negative health outcomes of informal caregiving, (2) whether certain types of interventions are more effective than others, (3) whether effectiveness of interventions depends on caregiver/receiver, context or implementation characteristics and (4) how these interventions are perceived in terms of acceptability, feasibility and added value. Methods and analysis We will include systematic reviews of primary studies focusing on the effectiveness of interventions (public or private, unifaceted or multifaceted, delivered by health or social care professionals or volunteers) aimed at reducing the impact of caregiving on caregivers’ physical or mental health. This will also include quantitative and qualitative syntheses of implementation studies. The literature search will include the following databases: Medline, CINAHL, PsycINFO and Web of Science. A key informant-guided search of grey literature will be performed. Quality appraisal will be conducted with the AMSTAR-2 checklist for quantitative reviews and with an ad hoc checklist for qualitative syntheses. Narrative and tabular summaries of extracted data will be produced, and framework synthesis will be employed for weaving together evidence from quantitative studies in effectiveness reviews with findings on implementation from qualitative studies. Ethics and dissemination This umbrella review will use data from secondary sources and will not involve interactions with study participants; it is thus exempt from ethical approval. Results will be presented at international conferences and will be published in a peer-reviewed journal. PROSPERO registration number CRD42021252841.