Background Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia. The objective of this study is to conduct a systematic review of intervention content, effectiveness and subgroup differentiation of mental health interventions for informal caregivers of persons with dementia living at home. Method We searched four electronic databases (PubMed, PsychINFO, Scopus and CINAHL) and included only methodically high-quality randomized controlled trials (RCTs), published in English or German language between 2009 and 2018. The intervention programmes focused on mental health of family caregivers. A narrative synthesis of the included studies is given. Results Forty-eight publications relating to 46 intervention programmes met the inclusion criteria. Burden, depression and quality of life (QoL) are the predominant parameters that were investigated. Twenty-five of forty-six interventions (54.3%) show positive effects on at least one of the outcomes examined. Most often, positive effects are reported for the outcome subjective burden (46.2%). Only six studies explicitly target on a certain subgroup of informal dementia caregivers (13%), whereas all other interventions (87%) target the group as a whole without differentiation. Conclusion The most beneficial results were found for cognitive behavioural approaches, especially concerning the reduction of depressive symptoms. Besides this, leisure and physical activity interventions show some good results in reducing subjective caregiver burden. In order to improve effectiveness, research and practice may focus on developing more targeted interventions for special dementia informal caregiver subgroups.
The heterogeneous and multi-factorial nature of dementia requires the consideration of all health aspects when predicting the risk of its development and planning strategies for its prevention. This systematic review of reviews provides a comprehensive synthesis of those factors associated with cognition in the context of dementia, identifying the role of social aspects and evidencing knowledge gaps in this area of research. Systematic reviews and meta-analyses from 2009–2021 were searched for within Medline, PsycINFO, CINAHL Complete, Cochrane, and Epistemonikos. Reviewers independently screened, reviewed, and assessed the records, following the PRISMA-2020 guidelines. From 314 included studies, 624 cognitive-related factors were identified, most of them risk factors (61.2%), mainly belonging to the group of ‘somatic comorbidities’ (cardiovascular disease and diabetes) and ‘genetic predispositions’. The protective factors (20%) were mainly related to lifestyle, pointing to the Mediterranean diet, regular physical activity, and cognitively stimulating activities. Social factors constituted 9.6% of all identified factors. Research on biological and medical factors dominates the reviewed literature. Greater social support and frequent contact may confer some protection against cognitive decline and dementia by delaying its onset or reducing the overall risk; however, overall, our findings are inconsistent. Further research is needed in the fields of lifestyle, psychology, social health, and the protective factors against cognitive decline and dementia.
Background Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes. Methods We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements. Results Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p < 0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as “adult child parent relationship & younger informal caregiver”, “adult child parent relationship & middle aged informal caregiver”, “non family relationship & younger informal caregiver”, “couple & male informal caregiver of older age”, “couple & female informal caregiver of older age”, “couple & younger informal caregiver”. The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes. Conclusion Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.
ObjectiveThe recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies.ProcessWe use the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility. An iterative consensus-based process was used within the international multidisciplinary SHARED project.Conceptual frameworkUnderpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in a definition of social health as wellbeing that relies on capacities both of the individual and the social environment. Consequently, domains in the conceptual framework are on both the individual (e.g., social participation) and the social environmental levels (e.g., social network). We hypothesize that social health acts as a driver for use of cognitive reserve which can then slow cognitive impairment or maintain cognitive functioning. The feasibility of the conceptual framework is demonstrated in its practical use in identifying and structuring of social health markers within the SHARED project.DiscussionThe conceptual framework provides guidance for future research and facilitates identification of modifiable risk and protective factors, which may in turn shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.
Background Dementia is a multi-factorial condition rather than a natural and inevitable consequence of ageing. Some factors related to dementia have been studied much more extensively than others. To gain an overview of known or suspected influential factors is a prerequisite to design studies that aim to identify causal relationships and interactions between factors. This article aims to develop a visual model that a) identifies factors related to cognitive decline that signal the onset of dementia, b) structures them by different domains and c) reflects on and visualizes the possible causal links and interactions between these factors based on expert input using a causal loop diagram. Method We used a mixed-method, step-wise approach: 1. A systematic literature review on factors related to cognitive decline; 2. A group model building (GMB) workshop with experts from different disciplines; 3. Structured discussions within the group of researchers. The results were continuously synthesized and graphically transformed into a causal loop diagram. Results The causal loop diagram comprises 73 factors that were structured into six domains: physical (medical) factors (23), social health factors (21), psychological factors (14), environmental factors (5), demographic factors (5) and lifestyle factors (3). 57 factors were identified in the systematic literature review, additionally 16 factors, mostly of the social health cluster, were identified during the GMB session and the feedback rounds. Conclusion The causal loop diagram offers a comprehensive visualisation of factors related to cognitive decline and their interactions. It supports the generation of hypotheses on causal relationships and interactions of factors within and between domains.
Background Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of ‘stability of home-based care arrangements for people living with dementia’ (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability. Method This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included. Results The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes ‘dementia and care trajectory’ and ‘structure of the dyadic relationship’ best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability. Conclusion The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families.
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