Dementia and other neurodegenerative disorders place growing pressure on European health systems, yet evidence on how care pathways are structured, implemented, and evaluated remains fragmented. This systematic review synthesizes European evidence on dementia and neurodegenerative care pathways and develops an evidence-informed conceptual synthesis capturing core functions, domains of care delivery, and cross-cutting implementation principles. The review followed PRISMA 2020 guidelines and was registered in PROSPERO (CRD420251020962). Five databases (PubMed/MEDLINE, Embase, CINAHL, Web of Science, and the Cochrane Library) and gray literature sources were searched for studies published in the last 10 years (to June 2025) examining structured care pathways. Risk of bias was assessed using design-specific tools (RoB-2, ROBINS-I, MMAT), and findings were synthesized narratively due to substantial heterogeneity. Eighty-one studies from 11 European countries and multinational initiatives were included. Reported pathways varied widely in scope, structure, and implementation. Most focused on early-stage processes (referral, diagnosis, and initial post-diagnostic support), while later-stage elements (long-term management, advance care planning, and palliative care) were less frequently represented in the literature. Across studies, a consistent functional core was recurrently reported, including care coordination, multidisciplinary teamwork, case management, caregiver involvement, and structured follow-up. Surrounding domains, such as workforce training, digital and assistive technologies, and quality measurement, were described with variable levels of formalization. Findings reflect patterns reported in the literature rather than a direct representation of routine care across European health systems. Substantial heterogeneity in study designs, reporting practices, and pathway descriptions limited comparability across contexts. This review identifies common organizational functions underlying dementia care pathways and proposes an evidence-informed conceptual framework to support interpretation, comparison, and future development of more integrated and person-centered care models.

Dementia care across Europe is characterized by substantial regional disparities in research participation, funding, and care practices, which challenge the development of equitable and inclusive research agendas. The PANEUCARE consortium adopted a pan-European, co-produced approach that integrates professional expertise with the perspectives of people living with dementia and caregivers to identify priorities for a more equitable dementia research landscape. Insights were generated through two workshops with dementia professionals and consultation groups involving people living with dementia and caregivers, followed by deliberative synthesis to explore common challenges, regional barriers, and shared research priorities. Participants highlighted persistent issues including workforce shortages, delayed diagnosis, fragmented care pathways, caregiver burden, and the underrepresentation of Southern and Eastern European contexts in research. At the same time, examples of local innovation, such as community-based services, cross-sector collaboration, and the use of digital tools, demonstrated context-specific resilience and opportunities for cross-regional learning. Priority areas for future research included strengthening cross-regional collaboration, addressing workforce development, improving culturally sensitive and post-diagnostic care, enhancing support for caregivers, and promoting more inclusive participation in research. These insights informed the development of the EQUITABLE framework (Equity, Quality, Urgency, Involvement, Transdisciplinary collaboration, Adaptability, Budget-consciousness, Linguistic and cultural sensitivity, and Engagement), which provides actionable guidance for designing inclusive and context-sensitive dementia research across Europe. By bringing together professional expertise and lived experience, PANEUCARE highlights how Europe's diversity in dementia care can be leveraged as a resource for shared learning and policy development, supporting a more equitable, sustainable, and responsive European dementia research landscape.

BackgroundSocial health is increasingly recognized as a key dimension of wellbeing in dementia, yet it remains unclear to what extent available assistive technologies are personalisable, usable, and effective in addressing related unmet needs.ObjectiveThis umbrella review aimed to (1) identify how many and which technologies are personalisable, usable and effective in supporting social health in dementia, and (2) synthesize recommendations from the current literature on how to improve equitable implementation.MethodsAn explorative review of reviews was conducted, including 28 reviews published between 2007 and 2024. The INDUCT/DISTINCT Best Practice Guidance for Human Interaction with Technology in Dementia was also included. Technologies and recommendations were analyzed using a combined frequency-based and thematic approach and categorized according to the three social health domains (fulfilling potential and obligations; managing life with some degree of independence; participation in social activities) and across micro-, meso-, and macrolevels.ResultsOf all technologies discussed, 48% were reported as personalisable and 59% as usable. However, only 23% of personalisable technologies demonstrated effectiveness in at least one randomized controlled trial. Most evidence related to the domain of managing life with some degree of independence, while fewer technologies showed demonstrated effectiveness for fulfilling potential or enhancing social participation. Recommendations primarily addressed implementation strategies, equity considerations, and stakeholder collaboration. Future research priorities included the development of needs-based, personalisable, and diversity-sensitive technologies, improved methodological rigor, and supportive policy and funding structures.ConclusionsWhile half of the technologies are described as adaptable to user needs, preferences or abilities and more than half as usable, robust evidence for their effectiveness in promoting social health remains limited. Clearer operationalisation of personalisation, stronger evaluation designs and improved implementation strategies are needed to ensure that people with dementia can equitably access technologies that promote their social health.

BackgroundAlzheimer's disease is common in later life and affects the person with dementia as well as their family. As the disease progresses, declining functions of activities of daily living increase dependence on relatives for support, who can become caregivers.ObjectiveTo summarize the current state of knowledge regarding caregivers' views on Alzheimer's disease and other types of dementia, and to identify overarching themes.MethodsWe conducted a scoping review using PRISMA guidelines. Inclusion criteria were: a) qualitative studies or qualitative sections of mixed-methods studies about views on dementia among informal caregivers, b) publication between 2013 and 2023, c) publication in a peer-reviewed journal, d) English or German language. The search was carried out in five scientific databases (MEDLINE, PsycInfo, PSYNDEX, CINHAL, Web of Science). Information on authors, years, settings, participants, aims, methods, type of analysis, and results were extracted. Using reflexive thematic analysis, themes of views on dementia reported in the given articles were summarized.ResultsWe identified 42 relevant studies reporting views on dementia in informal caregivers and constructed seven themes: "Dementia as natural cognitive decline", "Dementia as caregiver burden", "Dementia as stigmatized experience", "Dementia as transition in relationship dynamics", "Dementia as uncertainty", "Dementia as enriching experience" and "Dementia as self-inflicted vs. externally determined".ConclusionsViews on dementia among informal caregivers encompass complex, multi-dimensional attitudes and perceptions warranting a nuanced dementia discourse and offering various starting points for interventions. "Dementia as transition in relationships dynamics" emerged as an especially important topic requiring more attention in dementia research.

Background Multidomain lifestyle interventions can improve dementia risk by risk factor modification. Little is known about possible mechanisms underlying this effect.Objective Analyze whether changes in a validated dementia risk score were linked to changes in neuroimaging markers in a sample of older adults at increased dementia risk, participating in a multimodal lifestyle intervention.Methods Participants of the multi-centric AgeWell.de-trial at the Leipzig study site were examined using 3 Tesla MRI at baseline and 24-months follow-up, assessing markers of hippocampal-limbic atrophy and vascular pathology (hippocampal volume (HCV), entorhinal cortex thickness, free water fraction, peak width of skeletonized mean diffusivity, white matter hyperintensity volume, mean gray matter cerebral blood flow). Dementia risk was assessed using the Lifestyle for Brain Health (LIBRA)-index. Multivariable linear regression analyses assessed effects of changes in LIBRA on neuroimaging markers.Results Of 56 participants at baseline, 41 underwent the follow-up assessment (Mage: 68.1 (4.1), % female: 46.3, intervention/control group: 16/25). Lower LIBRA-scores, indicating lower dementia risk, were associated with higher HCV at baseline. LIBRA improved in both groups, with no between-group difference in change. Increases in LIBRA were linked to smaller decline in HCV independently of the intervention. No further effects of lifestyle changes on neuroimaging were detected. Exploratory analyses indicated that detrimental lifestyle changes were linked to decreased cognitive performance in the intervention group.Conclusions We found no conclusive evidence for associations between lifestyle changes due to a multidomain lifestyle intervention and structural brain health markers. Larger samples and longer interventions may clarify underlying mechanisms.

IntroductionPeople with dementia and their caregivers regularly face unmet needs, not only in dementia care, but also in self-care, education, training, and the use of digital tools. National dementia policies, clinical guidelines, and best practices can improve dementia care and quality of life across Europe. This study examined how far current national guidelines and good practices address these domains, and where important gaps remain. The objective was to identify unmet needs in national guidelines and good practices on self-care, education and training, and digital tools for people with dementia and their caregivers.MethodsWe conducted a cross-country comparative analysis in countries participating in the JADE Health collaboration: Bulgaria, Croatia, Denmark, Germany, Latvia, Lithuania, Poland, Spain, and Ukraine. Country partners provided national and regional dementia guidelines and descriptions of good practices, which were systematically reviewed and compared against selected best practices from the EU Best Practice Portal, focusing on alignment and gaps in the three domains.ResultsWe found substantial variation between countries in the maturity, scope, and implementation of dementia guidelines and good practices. Some countries, such as Denmark and Germany, have relatively advanced policy frameworks and clinical guidance, while others, such as Croatia, rely on promising but regionally limited programs, and several, including Bulgaria and Latvia, still depend on fragmented services. Across all countries, integrated approaches that combine structured self-care support, systematic education and training, and scalable digital tools were rare.DiscussionBest practices explicitly addressing self-care, education and training, and digital tools remain limited and unevenly implemented. Strengthening and disseminating such practices is essential to guide the further development of dementia care across Europe and to reduce persistent unmet needs among people with dementia and their caregivers.

INTRODUCTION:Pharmacogenetics-guided prescribing may reduce adverse drug reactions by 30%. European and American expert groups (Dutch Pharmacogenetics Working Group and Clinical Implementation Consortium) issue genotype-based dosage recommendations, but pharmacogenetic testing is still not routinely used. Here, we assess the potential of pharmacogenetic testing to optimize pharmacotherapy in people with dementia (PwD). METHODS:We genotyped variants in CYP2D6 , CYP2C9, CYP2C19, CYP3A4, CYP3A5, and SLCO1B1 genes and related them to individual medication data in 115 PwD from an epidemiological cohort from Northeast Germany. RESULTS:The vast majority of PwD (93%) carried at least one actionable variant. Fourteen (12%) had at least one strongly actionable variant. Four of them (4%) took the drug affected and carried the strongly actionable genetic variant. DISCUSSION:Pharmacogenetic testing may contribute to improved pharmacotherapy in PwD. The potential improvements were mainly for medications commonly taken by elderly, but also for medications used to treat or associated with progression of dementia.

OBJECTIVES:People with dementia experience multiple barriers to accessing timely diagnosis and care, primarily due to issues on a care system level. The aim of this Policy Paper was to compare health and social care systems for dementia and unpaid carers across 14 European countries. METHOD:Each country was represented by a clinical or non-clinical dementia care researcher who provided country-specific data on its health and social care system, sense-checked by health and social care practitioners. National policies were searched to inform the country overview of its health and social care system. RESULTS:Except for Norway, health and social care are managed separately. Barring Germany, electronic and paper-based health data are routinely collected. Scotland is the only country that collects social care data that can be linked to healthcare data. Access to health care is free at point of access, whilst social care usage is means tested in Poland, Germany, Ireland and the UK, creating a substantial financial barrier for many people with dementia and carers. Three out of 14 countries do not have a national dementia strategy. CONCLUSION:Health and social care systems are oftentimes disjointed across Europe, lacking adequately linked data infrastructure. Research needs to explore the interpersonal connectivity between care systems, patients and professionals.

Previous trials reported that collaborative Dementia Care Management (cDCM) could be cost-effective in the short term, especially for those living alone. However, long-term evidence is lacking. Therefore, the study’s objective was to determine the long-term efficacy and cost-effectiveness of cDCM in those living alone compared to those living with a caregiver. compared with usual care. A General Practitioner (GP)-based, cluster-randomized-controlled intervention trial (DelpHi-MV) was conducted. Participating GP practices were randomly allocated to one of two arms (care as usual or cDCM). Participants were included if they were 70 years or older, living at home, and screened positive for dementia. Participants of the intervention group received a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia collaborating with GPs and healthcare stakeholders over six months. Controls received usual care. We conducted a subgroup analyses separating the sample into those living alone versus those living not alone. Health-Related Quality of Life (SF-6D), Quality-adjusted life years, and resource used were assessed at baseline, 12, 24 and 36 months. 428 (n = 303 cDCM, n = 125 usual care) participants were included in the analysis. Based on multivariate regression models adjusted for baseline scores, cDCM was more cost-effective in PlwD living alone. Compared to controls, the gain in QALY (alone: +0.224 [95% CI 0.03 to 0.42], p = 0.027; not alone: 0.079 [95% CI -0.11 to 0.27], p<0.417), savings in costs (alone: -3,815 [-12,573 to 5,982], p = 0.485; not alone: 3,283 [-3,514 to 11,121], p = 0.307), and the probability of cost-effectiveness at WTP 40.000€/QALY was significantly higher in PlwD living alone (92% vs 32%). Differences in costs were especially due to a trend for delayed institutionalization in the first and second year for those living alone. cDCM is cost-effective in the long term beyond the intervention or short-term periods, improving patients HRQoL and reducing costs in those living alone. Therefore, should become a health policy priority and translated into routine care practice. Whether cDCM more likely leads to better-prepared institutionalization should be investigated in future research to support the community-dwelling living situation as long as possible and make institutionalizations as smooth as possible.

Previous trials reported that collaborative Dementia Care Management (cDCM) could be effective for patients and caregivers and cost-effective for healthcare systems in the short term. However, long-term evidence is lacking. Therefore, the study’s objective was to determine the long-term efficacy and cost-effectiveness of cDCM compared with usual care. A General Practitioner (GP)-based, cluster-randomized-controlled intervention trial (DelpHi-MV) was conducted. Participating GP practices were randomly allocated to one of two arms (care as usual or cDCM). Participants of the intervention group received a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia collaborating with GPs and healthcare stakeholders over six months. Controls received usual care. Primary endpoints were behavioral and psychological symptoms (NPI), caregiver burden (Berlin Inventory of Caregivers' Burden), Health-Related Quality of Life (HRQoL, QoL-AD, SF-12), anti-dementia drug treatment, potentially inappropriate medication, and cost-effectiveness (incremental cost and Quality-adjusted Life Years, QALYs) after 36 months. 308 participants (n = 221 cDCM, n = 87 usual care) were included for the efficacy analyses, and 428 (n = 303 cDCM, n = 125 usual care) for the cost-effectiveness analysis that included deceased patients. Based on multivariate regression models adjusted for baseline scores, participants receiving cDCM showed significantly less behavioural and psychological symptoms (adjusted mean difference -10.3 [95% CI -16.9 to -3.6], p = 0.003, Cohens-d = -0.78), better mental health (+2.26 [0.3 to 4.2], p = 0.023, d = 0.26) and lower caregiver burden (-0.59 [-0.8 to -0.4], p<0.001, d = 0.71), and more likely received anti-dementia drugs (adjusted odds ratio 1.91 [1.0 to 3.8], p = 0.065, Cramérs-V = 0.12) compared to usual care participants. There was no effect on overall HRQoL, physical health, or potentially inappropriate medication after 36 months. cDCM gained QALYs (+0.14 [0.01 to 0.27], p = 0.050, d = 0.20) and increased costs (+437€ [-5,438 to 6,313], p = 0.868, d = 0.02), resulting in a cost-effectiveness-ratio of 3,186€/QALY. Cost-effectiveness was significantly better in PlwD living alone (-3,815€, +0.224 QALYs, cDCM dominates) compared to those living with a caregiver (+3.283€, +0.079 QALYs, 47,538€/QALY). cDCM is effective and cost-effective in the long term, improving patients, caregivers, and health system-relevant outcomes beyond the intervention or short-term periods, and, therefore, should become a health policy priority and translated into routine care practice.

Recent research on preventing cognitive decline has focused on lifestyle interventions, with first studies indicating cognitive benefits and suggesting a positive link between adherence to the interventions and their effectiveness. The purpose of this study was to analyse possible predictors of this very adherence to single components of a multi-domain lifestyle intervention. A total of n = 317 participants of the intervention group were included, characterized with an age ≥60 (mean age 68.9) and an increased risk of dementia (CAIDE score of ≥9). Generalized linear regression models were used to regress four predictor blocks (sociodemographic factors, cognitive and psychosocial predictors, lifestyle factors and chronic conditions, all assessed at baseline) on the adherence to each of four components of AgeWell.de (nutritional counselling, enhancement of social and physical activity and cognitive training). Adherence was operationalised as mean score of seven time points at which a study nurse assessed the degree of goal achievement per component. The goals were set individually at beginning of the intervention. Strengthening effects on adherence were found for higher education, unimpaired mental state and higher self-efficacy. Increasing age, reporting depressive symptoms, smoking and partwise higher body mass index were instead negatively associated with adherence. No effect was found for chronic conditions. The study has identified both strengthening and mitigating predictors of adherence. This is relevant to future intervention designs aimed at enhancing adherence as a pivotal aspect for effectiveness. While age or education remain non-modifiable, self-efficacy emerge as a promising predictor. In light of optimizing the efficacy of forthcoming lifestyle interventions, a reasonable approach may involve the incorporation of strategies for enhancing self-efficacy within the study design.

Background and Objectives:Depressive symptoms are common in people with dementia, significantly reducing well-being and potentially exacerbating dementia symptoms. The objective of the present study was to investigate the role of support from the social environment for depressive symptoms in people with dementia over a 4-year period. Research Design and Methods:We used data from a cohort of 334 community-dwelling people with dementia (M age = 80.2, 59.3% female) who were interviewed annually in their homes by specially qualified nurses. We used multilevel growth curve models with random intercepts and slopes to model depressive symptoms over time. We modeled both the role of between-person differences and the role of within-person changes in social support for depressive symptoms. Results:At the beginning of the study, 13.8% of people with dementia reported mild to severe depressive symptoms. People with more social support showed fewer depressive symptoms overall over the 4-year period (% change per point on a scale from 22 to 110: -1.2, 95% CI: -1.8, -0.4). In addition, a decline in a person's social support was associated with more depressive symptoms (% change: -0.9, 95% CI: -1.7, -0.2). These effects were stable even after controlling for sociodemographic (age, sex, education) and clinical factors (cognitive and functional status, comorbidities). Discussion and Implications:The social environment plays an important role in depressive symptoms in people with dementia-beyond clinical factors like cognitive and functional abilities. Improving support from the social environment could be a lever for alleviating depressive symptoms. In the care of people with dementia, not only medical needs but also psychosocial needs should come to the forefront.

INTRODUCTION:This study investigated the association between modifiable factors and symptom progression in dementia over up to 8 years. METHODS:Multilevel growth curve models assessed the role of modifiable risk factors (low education, hearing impairment and its treatment, depression, physical inactivity, diabetes and its treatment, smoking, hypertension and its treatment, obesity, alcohol consumption, social isolation, and visual impairment) on cognitive and functional trajectories in 353 people with dementia. RESULTS:Higher education was associated with higher initial cognitive status but faster decline. Antidiabetic medication was associated with slower cognitive decline, whereas depression and visual impairment were linked to low baseline functioning and faster cognitive decline. DISCUSSION:Several modifiable risk factors influenced symptom progression. Education initially had a protective effect, whereas depressive symptoms were linked to worse symptom progression. Treatment of comorbidities (diabetes, visual impairment) could have a positive impact on dementia symptoms. Modifiable risk factors are promising targets for tertiary prevention. Highlights:Modifiable risk factors were associated with symptom progression in dementia over up to 8 years.More education was associated with higher initial cognitive status but faster decline.Depressive symptoms were linked to less favorable symptom progression.Treatment of comorbidities (diabetes, visual impairment) may positively impact the course of symptoms.Modifiable risk factors are promising targets for tertiary prevention.

Taking care of a person with dementia is challenging and can contribute to depressive symptoms in caregivers. To provide tailored support, predictors of depressive symptoms need to be better understood. Yet, there is a lack of longitudinal studies and little knowledge about the role of psychosocial factors. To address this gap, this study investigates the role of perceived lack of appreciation as well as perceived burden of losing the relationship to the person with dementia on depressive symptoms in caregivers longitudinally – beyond known demographic and clinical predictors. We analyzed data from 179 dyads consisting of people with dementia (Mage = 80, 61.5% female) and their caregivers (Mage = 64.5, 70.9% female) in Germany. Dyads were interviewed annually by specially qualified nurses over a time span of four years. Depressive symptoms of caregivers were assessed with the Patient Health Questionnaire (PHQ), psychosocial factors were assessed using the Berlin Inventory of Caregiver Burden (BIZA-D). We employed a multilevel growth curve model with random intercepts and slopes. We investigated the role of both within- and between-person differences in psychosocial factors for depressive symptoms in caregivers. Perceived lack of appreciation and the perceived burden of losing the relationship to the person with dementia were significant both as within- and between-person differences. The severity of cognitive symptoms in the person with dementia was significant as between- but not within-person difference. Neuropsychiatric symptoms were significant as within- but not between-person difference. For the first time, this study indicates that psychosocial factors play an important role in the development of depressive symptoms in caregivers of people with dementia. Appreciation by the social environment and addressing the changing relationship between the caregiver and the person with dementia might be promising targets for interventions.

Remote digital cognitive assessments have great potential to address major unmet needs in global healthcare services. Early detection of Alzheimer's disease (AD) and the prediction and monitoring of disease progression represents an ideal use case given the scale of the disease and the limitations of legacy approaches. However, for remote digital assessments to be deployed at greatest benefit to both user and provider stakeholders, new frameworks for their use will need to be put in place to deliver best practice and maintain fitness for purpose into the future. The expert group REMOTE-AD, funded through the EU Joint Programme on Neurodegenerative Disease Research (JPND), brings together a multinational and multidisciplinary expert group to provide a framework and standards for the future use of remote digital cognitive assessments in early AD. REMOTE-AD is structured into four groups working on 1.) Determination of the unmet needs in AD clinical practice that can be addressed with remote digital assessments, 2.) Delivery of a framework for identification and appraisal of appropriate measures and measurement technologies for differing use cases, 3) Evaluation of social and ethical considerations relating to the deployment of remote digital assessments and 4) Design of systems for future implementation. Two workshops will be convened to outline scope of work and then to finalize recommendations. Here we will present results arising from the first workshop. Remote digital tools form part of the future of AD management but any plans for deployment are currently limited by the absence of frameworks and systems for their usage. REMOTE-AD has been assembled to address this need and its outputs will benefit healthcare services in the EU and worldwide.

Background The use of unsupervised digital cognitive assessments provides considerable opportunities for early and comprehensive testing for Alzheimer disease, minimizing the demand on time and personnel resources in medical practices. However, the acceptance within health care has yet to be assessed. Objective In this implementation study, the acceptance of an app-based, repeated cognitive assessment for early symptoms of Alzheimer disease in the outpatient care setting from both physicians’ and patients’ perspectives was examined. Methods In total, 15 primary care practices participated, where patients with self- or relative-reported memory problems could be prescribed an app (neotivCare app [neotiv GmbH]) for comprehensive cognitive testing. Patients used the app to test their episodic memory function weekly for 12 weeks at home. After the testing period and the final consultation, physicians and patients received questionnaires to assess the app’s acceptance. Results We received completed questionnaires from physicians for 45 patients. In addition, we received 45 completed questionnaires from the patients themselves. The physicians reported that, for most patients, the app supported their decision-making in the diagnostic process (26/45, 58%). In addition, most physicians found the app’s information dependable (34/45, 76%) and felt more certain in their decisions (38/45, 84%). From the patients’ perspective, a majority felt thoroughly tested (34/45, 76%), and only a few considered the time commitment for the cognitive tests to be too burdensome (7/45, 16%). Furthermore, despite the weekly cognitive testing and the lengthy 12-week testing period, a majority of patients participated in all tests (39/54, 72%). Conclusions Our results indicate a high level of acceptance by physicians and patients, suggesting significant potential for the implementation of unsupervised digital cognitive assessments into routine health care. In the future, acceptance should be assessed in large-scale studies, with a particular focus on the impact on health care delivery and patient outcomes.

Dementia risk scores have been suggested a promising surrogate outcome for lifestyle interventions targeting cognitive function and dementia risk. First evidence suggests beneficial effects of multidomain lifestyle interventions on dementia risk scores. We investigated effects of the multidomain AgeWell.de-intervention on dementia risk, assessed using the LIfestyle for BRAin health (LIBRA)-index. Secondary analyses of AgeWell.de, a multicomponent intervention (including optimization of nutrition, medication, physical, social and cognitive activity) in older adults at increased risk for dementia (trial registration: German Clinical Trials Register, DRKS; ID: DRKS00013555). We analyzed data from n = 461 participants (age: 60-77 years) with available information on all n = 12 risk/protective factors comprised by the LIBRA (coronary heart disease, diabetes, hypercholesterolemia, hypertension, depression, obesity, smoking, physical inactivity, renal disease, low-to-moderate alcohol use, high cognitive activity, healthy diet) at baseline and 24 months-follow-up. Intervention effects on LIBRA-scores and individual LIBRA-components were assessed using generalized linear models. The intervention reduced total LIBRA-scores, indicating a decreased risk for dementia at 24 months follow-up (b = -0.63, 95% CI: -1.14, -0.12). Intervention effects on LIBRA-scores were particularly due to favorable changes in diet (OR = 1.60, 95% CI: 1.16, 2.22) and hypertension (OR = 1.61, 95% CI: 1.19, 2.18). In younger participants (60-69 years), the intervention increased the odds of high cognitive activity at follow-up (OR = 2.00; 95% CI: 1.20, 3.34). The AgeWell.de-intervention successfully reduced dementia risk, assessed using the LIBRA-score, underscoring the usefulness of the LIBRA as a surrogate outcome when interpreting success of multidomain lifestyle interventions. However, several risk factors for dementia captured in the LIBRA, e.g., physical inactivity, did not change due to the intervention, possibly requiring more intensive interventions and support of participants in conducting the intervention.

Depressive symptoms are a common neuropsychological symptom in people with dementia. They are associated with reduced well-being and may exacerbate dementia symptoms. So far, there has been little research on how modifiable factors, such as the social environment, are associated with the severity of symptoms. The aim of the present study was to investigate the role of support from the social environment for depressive symptoms in community-dwelling people with dementia – beyond sociodemographic and clinical factors. We used data from 378 people screened positive for dementia in primary care (Mage = 80.2, 59.5% female) who were interviewed annually in their homes by specially qualified nurses. Social support was assessed using the Questionnaire for the Assessment of Social Support (FSozU), depressive symptoms were measured using the Geriatric Depression Scale (GDS). We used multilevel growth curve models with random intercepts and slopes to model depressive symptoms over time. We modelled both the role of between-person differences and the role of within-person changes in social support for depressive symptoms. At the beginning of the study, the number of people with dementia who reported mild to severe depressive symptoms was 15.6 %. More social support was associated with fewer depressive symptoms overall over the four-year period (blog = -0.27, % change: -23.66, 95% CI: -32.29, -13.93). A decline in social support was associated with more depressive symptoms (blog = -0.23, % change: -20.55, 95% CI: -28.82, -12.19). These effects remained stable after controlling for sociodemographic and clinical factors. This is the first study to show that the social environment plays an important role in depressive symptoms in people with dementia – above and beyond clinical factors. Social support as a modifiable factor may be a lever for alleviating depressive symptoms in dementia. In the care of people with dementia, not only medical but also psychosocial needs should be given greater attention.

Objectives The aim of the present study was to examine the reliability and validity (structural and convergent) of the Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem).Design Cross-sectional survey study.Setting Online survey in Germany.Participants The ResQ-Care-Dem was completed by 243 informal caregivers of people with dementia (Mage=59.7 years, SD=10.9, 84.8% female).Methods The ResQ-Care-Dem consists of four scales: two resilience scales (psychological aspects and social aspects of resilience) and two burden scales (interpersonal burden and general burden). The reliability of the two resilience and two burden scales was assessed using Cronbach’s alpha as a measure of internal consistency. Structural validity was examined using a principal axis factor analysis. Convergent validity was assessed by Pearson’s correlations with the Zarit Burden Interview (ZBI-7), the Caregiver Self-Efficacy Scale (CES-8) and the Gain in Alzheimer Care Instrument (GAIN).Results The ResQ-Care-Dem scales’ internal consistencies ranged between 0.65 and 0.81. The factorial structure could partly be confirmed, with the items of the four scales primarily loading on four factors. The burden scales demonstrated high and positive correlations with the score for caregiver burden (ZBI-7, r=0.51 – 0.55) and small to high, negative correlations with the scores for caregiver self-efficacy (CES-8, r=–0.52 –0.56) and gains from caregiving (GAIN, r=−0.21 −0.22), supporting construct validity of the scales. The resilience scales showed small to high positive correlations with the scores for caregiver self-efficacy (CES-8, r=0.50 – 0.57) and gains from caregiving (GAIN, r=0.27 – 0.50), as well as moderate negative correlations with the caregiver burden score (ZBI-7, r=−0.45 −0.50), providing evidence for the scales’ construct validity.Conclusions The reliability and structural validity of the ResQ-Care-Dem were partially confirmed. Evidence supporting its convergent validity suggests that the questionnaire has potential as a tool for assessing caregiver burden and resilience factors among informal caregivers of people with dementia. While these findings indicate potential practical applicability, future studies should investigate its performance in real-world settings and assess changes over time (eg, responsiveness) in longitudinal studies.