Cognitive fluctuations are reported in 90% of individuals with dementia with Lewy bodies (DLB) and along with dysautonomia, are a key source of disability. Through this effort, we sought to investigate the relationship between autonomic burden and cognitive fluctuations, neuropsychiatric burden and quality of life in moderate-advanced DLB. This multicenter, prospective, observational, longitudinal cohort study, Predicting ACcurately End-of-Life in Dementia With Lewy Bodies and Promoting Quality End-of-Life Experiences (PACE-DLB), was conducted in the United States to study individuals with moderate-advanced DLB. The primary exposure for the current analysis was time-varying total autonomic burden, as measured by the autonomic symptom checklist (ASC) at baseline and follow-up visits. The primary outcomes were cognitive fluctuations measured by Clinician Assessment of Fluctuations (CAF) scores and neuropsychiatric burden as measured by Neuropsychiatric Inventory Questionnaire (NPI-Q) scores. Secondary outcomes included quality of life (QoL) captured through the Quality of Life-Alzheimer's Disease scale. Mixed-effects regression analyses were conducted to assess the effect of autonomic burden on each primary outcome, with age, sex, education, Charlson Comorbidity Index, anticholinergic burden, levodopa equivalent daily dosage, and EPWORTH sleepiness scale scores adjusted as potential confounders. We additionally conducted modified graphical network model analyses. A total of 189 patients with 745 longitudinal observations were included in the analysis. Mean age of the cohort was 74.92 years (SD 7.77 years) with 22% female participants. At baseline, ASC was directly associated with CAF (RC = 0.16; 95% CI 0.01-0.31; p = 0.032) and NPI-Q (RC = 3.27; 95% CI 2.37-4.18; p < 0.001). In longitudinal analysis, ASC remained directly associated with CAF (RC = 0.18; 95% CI 0.11-0.24; p < 0.001) and NPI-Q (RC = 2.10; 95% CI 1.49-2.71; p < 0.001). ASC scores were inversely associated with QoL of the caregiver (RC = -0.04; 95% CI -0.06 to -0.02) in longitudinal adjusted analysis. Graphical network modeling incorporating possible relationships across characteristics showed that autonomic burden was directly and stably associated with cognitive fluctuations (weight = 0.15) and neuropsychiatric burden (weight = 0.47). Autonomic burden correlates with severity of cognitive fluctuations and neuropsychiatric burden in moderate-advanced DLB. It also correlates with the QoL of the caregiver over time. These results encourage investigation into novel potential therapeutic avenues in moderate-advanced DLB.

Mild behavioral impairment (MBI) occurs in absence of dementia, but no studies explored whether MBI may limit the individuals' ability to complete everyday tasks necessary to live independently. In this study we elucidated on the relevance of specific behavioral markers on functional decline in both cognitively normal (CN) older adults and with mild cognitive impairment (MCI), and evaluated whether individuals with MBI present worse cognition and neurodegenerative dysfunctions compared to subjects without MBI. Observational cross-sectional study. Alzheimer's Disease Neuroimaging Initiative (ADNI) database. Amnesic MCI (aMCI; n = 232) participants and CN (n = 418) individuals. Neuropsychological assessment, volumetric MR brain scan, Flortaucipir PET for in vivo assessment of regional tau deposition, functional assessment questionnaire (FAQ), and neuropsychiatric inventory. MBI occurred in 53.5% aMCI and 19.6% CN. In aMCI, the most prevalent behaviors were affective dysregulation (34.4%), impulse dyscontrol (30.6%), and decreased drive/motivation (15.9%), whereas affective dysregulation (13.1%) and impulse dyscontrol (10.2%) were most prevalent in CN. In aMCI, affective dysregulation, decreased drive, social inappropriateness and abnormal perception MBI domains significantly predicted the FAQ score, whereas only decreased drive/motivation MBI domain showed a predicted role on FAQ in CN. No effects of MBI were detected on regional tau deposition or brain volumes in aMCI. Our findings suggest that the occurrence of MBI might predict a high risk of dysfunction in daily life in both aMCI and CN. An early detection of functional impairment may improve the success of disease-modifying interventions.

BackgroundNeuropsychiatric symptoms (NPS) are among the most challenging manifestations of dementia. Currently available assessment tools often fail to fully capture their complexity. Thus, novel approaches are needed.ObjectiveThe present study aimed to explore the application of a diary-based assessment of NPS in patients with dementia attending a memory clinic and compare this novel approach with the Neuropsychiatric Inventory (NPI) in terms of scores, time efficiency, and influence of potential confounders.MethodsAll consecutive outpatients with dementia and NPS attending the Center for Cognitive Disorders and Dementia, Sapienza University of Rome, were considered for enrollment. Caregivers completed a specially designed NPS diary for one month. Subsequently, a standard NPI (sNPI) was administered, and two diary-based NPIs (dNPI-R1 and dNPI-R2) were independently reconstructed by trained raters. Scores were compared using repeated-measures ANOVA and Cochran's Q test. Multivariate regression models were conducted to examine the impact of covariates. In addition, the NPS diary was qualitatively analyzed, and caregivers provided structured feedback.ResultsForty patient-caregiver dyads completed the study procedures. The sNPI yielded higher scores and longer administration time than dNPIs. Diary-based assessments showed high inter-rater reliability and were less influenced by caregiver burden.ConclusionsThe NPS diary offered an ecological, caregiver stress-resistant, reliable, time-efficient, and feasible evaluation of NPS. It allowed a detailed description of NPS, including temporal fluctuations, triggers, and resolution strategies. Integration of this complementary modality with standard evaluations allows a more comprehensive assessment of NPS in dementia.

Background: Depression has a substantial direct and indirect impact on physical illness among the general outpatients. This impact includes amplifying physical symptoms and worsening functional impairment, thereby increasing morbidity and mortality, decreasing patients’ adherence to treatment, increasing the cost of treatment, and reducing the health-related quality of life. Aim: This study aimed to determine and compare the prevalence and factors associated with depression amongst rural and urban general outpatients. Study Design: It was a descriptive comparative cross-sectional study. Place and Duration of Study: The study was conducted in two general out-patients clinics located in urban and rural Kano, respectively, viz. Aminu Kano Teaching Hospital (AKTH) and Kumbotso Comprehensive Community Healthcare Clinic (KCCHC). Methodology: A minimum sample size was calculated to be 50 per each group (Rural vs Urban) and 10 was added per each group to allow for attrition or non-response. A simple random sampling was employed to select 60 participants with depression. Patient Health Questionnaire 9(PHQ-9) was used to screen for depression, and was confirmed using Mini International Neuropsychiatric Inventory (MINI-5) among the participants. They were also assessed for social support using the Oslo-3-item Social Support Scale (OSS-3). Results: A higher prevalence of depression was found among urban patients (53.6%) than their rural counterparts (33%). In the urban area, depression was associated with chronic medical illness, a family history of mental illness, lower social support and lower social status. In rural areas, depression was associated with being single; increased frequency of consultation visits, fewer years in formal education and having more than one physical illness. Conclusion: Depression was more prevalent among urban outpatients than their rural counterparts. There is a need to incorporate regular screening of depression in the study areas, most notably among patients who are at high risk (Urban &gt; rural) of depression based on the factors that were identified to be associated with depression in the study.

BackgroundThere is increasing interest in non-pharmacological approaches to address the needs of patients with Alzheimer's disease and other dementia. However, previous research highlighted the need to adapt interventions to the healthcare system.ObjectiveTo evaluate the effectiveness for community-dwelling patients with mild-to-moderate dementia in France, of maintaining occupational therapy (OT) over a longer period compared with standard OT.MethodsWe used a pragmatic, single-blinded randomized controlled trial (RCT) design (ClinicalTrials.gov NCT03435705). A total of 238 community-dwelling adults with dementia were recruited from OT services and randomly assigned to receive either standard OT (12-15 home-based sessions over a 3-4-month period) or OT maintained for an additional 4 months. The primary outcome was behavioral symptoms measured with the Neuropsychiatric Inventory (NPI) at 8 months. The secondary outcomes included participants' functional performance, depressive symptoms, quality of life, institutionalization, caregivers' burden and sense of competence. Primary analysis followed intention-to-treat. Linear model was used to compare changes in NPI scores between groups at 8 months, with imputation for missing values.ResultsIn total, 211 participants (88.6%) were assessed for the primary outcome at 8 months. Participants benefiting from OT maintenance showed no significant improvement in behavioral symptoms compared to controls (adjusted mean difference = -3.8, 95% confidence interval: -10.3; 2.7). Maintenance of OT had no effect on secondary outcomes.ConclusionsOur pragmatic RCT did not support changing the current policy regarding the coverage of the French model of OT. Nevertheless, the non-significant improvement in behavioral symptoms calls for further long-term trials.

The efficacy and safety of Yokukansan for concomitant behavioral and psychological symptoms of Alzheimer's disease: a randomized, double-blinded clinical trial.

To evaluate the efficacy and safety of Tonifying Kidney-Yang Decoction (TKYD) in treating patients with vascular cognitive impairment (VCI) characterized by Shen (Kidney)-yang deficiency (SYD) syndrome. This multicenter, double-blind, randomized, and placebo-controlled clinical trial was conducted in 4 hospitals of China from September 2020 to December 2021. Eligible patients were enrolled and randomly assigned in a 1:1 ratio to receive either TKYD granules or placebo twice daily for 12 weeks. The primary outcomes were changes in scores of the Beijing Version of the Montreal Cognitive Assessment (MoCA-BJ) and Shen-Yang Deficiency Syndrome Scale (SYDSS) from baseline to week 12. The secondary outcomes included scores of the Mini-Mental State Examination (MMSE), Color Trails Test interference index, Stroop Color and Word Test-Stroop interference effect, Neuropsychiatric Inventory (NPI), Apathy Evaluation Scale-Clinician Version, and Activities of Daily Living scales. Safety was monitored throughout the trial. A total of 120 patients completed the trial, including 63 and 57 in the TKYD and placebo groups, respectively. After 12 weeks of treatment, the TKYD group exhibited a significantly greater increase in MoCA-BJ (change: 1.40 vs. 0.11) and reduction in SYDSS scores (change: -12.17 vs. -7.46) than the placebo group (P<0.05 or P<0.01). Regarding specific domains of MoCA-BJ, TKYD exhibited significantly greater improvements in visuospatial/executive function, orientation and delayed recall (P<0.05 or P<0.01). In terms of change scores in SYDSS, TKYD also showed greater reductions in diarrhea before dawn, lumbago, and weakness of knees (P<0.05 or P<0.01). For the secondary outcomes, the TKYD group exhibited significantly higher MMSE scores and lower NPI scores compared with the placebo group (P<0.05 or P<0.01). No treatment-related adverse events were reported. TKYD is effective and safe for improving cognitive function and alleviating SYD symptoms in VCI patients with SYD syndrome. (Registration No. ChiCTR1900025713).

Use of the neuropsychiatric inventory questionnaire to assess antipsychotic prescribing practices in patients with dementia: A quality improvement project.

Altered eating behaviours are a hallmark of behavioural variant frontotemporal dementia (bvFTD) but are less well characterised in progressive nonfluent aphasia (PNFA) and semantic dementia (SD). We investigated the frequency and onset of eating behaviour changes across the three subtypes. We retrospectively reviewed the data of 58 patients (14 bvFTD, 30 PNFA and 14 SD). The presence and onset of eating changes were assessed using the Neuropsychiatric Inventory and medical records. Eating behaviours were categorised into overeating, reduced food intake and food preference change. Primary outcomes were prevalence and incidence rates from the initial disease symptoms. A time-to-event analysis was used to compare the cumulative incidence of eating behaviour changes; cumulative incidence curves were estimated using the Kaplan-Meier method; and group differences were assessed using the log-rank test. Although the prevalence of eating changes was the highest in bvFTD (85.7%), followed by PNFA (63.3%) and SD (57.1%), the differences were not statistically significant (p = .220). Incidence also did not differ significantly (p = .054). However, overeating was significantly more frequent in the bvFTD group than in the PNFA and SD groups (p = .011). Changes in appetite and eating behaviour are common across the frontotemporal dementia spectrum and are not limited to bvFTD. Although the overall prevalence is similar across subtypes, overeating is specifically observed in bvFTD, whereas reduced food intake and food preference changes occur non-specifically.

Mild Behavioral Impairment (MBI) reflects later-life emergence of persistent neuropsychiatric symptoms and is increasingly recognized as an early manifestation of neurodegenerative disease, yet cerebellar correlates remain underexplored. We tested whether cerebellar morphometry is associated with incident MBI in mild cognitive impairment (MCI). Using longitudinal Alzheimer's Disease Neuroimaging Initiative data, MBI was derived from Neuropsychiatric Inventory/ Neuropsychiatric Inventory-Questionnaire items mapped to five diagnostic domains and defined as new symptoms persisting for ≥2 consecutive visits after a symptom-free baseline. Of 530 MCI participants without baseline symptoms, 181 who developed MBI were matched 1:1 to controls by age, sex, and education. DeepCERES quantified lobular cerebellar cortical thickness and asymmetry from 3T T1-weighted MRI. We used logistic regression with false discovery rate correction and conducted domain-specific analyses (affective dysregulation, impulse dyscontrol, decreased motivation). MBI cases had lower Mini Mental State Examination scores and higher dementia conversion than controls. Greater thickness in right cerebellar lobules IV (OR 1.215), V (OR 1.122), and VIIIB (OR 1.169), and greater asymmetry in right lobule V (OR 1.035), were associated with incident MBI. Affective dysregulation showed the strongest, largely right-lateralized associations and greater interhemispheric asymmetry. Main results were unchanged after separate sensitivity adjustments for Mini Mental State Examination scores and for index-visit psychiatric medication use. Incident MBI in MCI is linked to right-lateralized cerebellar cortical thickening and asymmetry, most prominently for affective dysregulation. These patterns may reflect early compensatory and/or neuroinflammatory processes within cerebello-cortical circuits relevant to affect regulation.

Apathy is a common neuropsychiatric symptom in Alzheimer's disease (AD) associated with cognitive and functional impairment. Longitudinal studies have examined the associations between apathy and cognition in AD and other dementias, but more information is needed to understand whether the relationships are consistent longitudinally, and whether apathy relates to decline in AD-related cognitive domains or to drop-out rates in the follow-up. We used data from 236 people (age M = 75.15 and 51.3% female at baseline) with very mild or mild AD from the Finnish ALSOVA study with up to 5 years of follow-up. Global cognition was measured with the Consortium to Establish a Registry for Alzheimer's disease-Neuropsychological Battery, apathy with the Neuropsychiatric Inventory, and disease severity with the Clinical Dementia Rating-Sum of Boxes. Associations between cognition and apathy were examined with correlation analyses, linear regression analyses and linear mixed models. In longitudinal analyses, we found that apathy was associated with worse global cognition (B = -0.39, SE = 0.12, p = .001) after adjusting for disease severity. However, apathy and global cognition were not consistently associated with one another in cross-sectional analyses. Older age (OR = 0.95, p = .02), but not apathy, was associated with a lower likelihood of participating in the final follow-up visit. In conclusion, apathy associates with worse global cognition longitudinally, but when examined cross-sectionally, the apathy-cognition associations are inconsistent. Apathy at baseline does not seem to affect drop-out rates in a long follow-up of individuals with very mild or mild AD.

Caregiver distress in dementia is multifactorial. The contribution of disease specific factors including anosognosia (poor awareness of cognitive/behavioral deficits) and theory of mind (ToM) deficit (difficulty with understanding other's perspective) requires further investigation. Cross sectional secondary analysis was performed on a dataset of 205 research participants (age = 64.2 ± 9.46): 57 Alzheimer's disease, 38 behavioral variant frontotemporal dementia, 12 non-fluent primary progressive aphasia (PPA), 24 semantic variant PPA, 18 progressive supranuclear palsy syndrome, 14 corticobasal syndrome, and 42 cognitively normal controls (NC). Anosognosia was measured using the Patient Competency Rating Scale (PCRS-self minus PCRS-caregiver; clinically meaningful anosognosia >20 points difference), ToM deficit was evaluated using The Awareness of Social Inference Test: Social Inference-Enriched (TASIT-SIE), and caregiver distress was measured using the Neuropsychiatric Inventory Questionnaire (NPI-Q) Total Distress score. Differences across syndromes were evaluated controlling for age and sex, and multivariable linear regression was used to determine predictors of caregiver distress. Clinically meaningful anosognosia (patient overestimation of function) and ToM deficit were significantly higher in all dementia syndromes compared to NCs. Anosognosia and ToM deficit each independently predicted caregiver distress and had an additive effect (p < 0.05). Our findings are consistent with other research showing that anosognosia in individuals with chronic neurological disorders including dementia can increase caregiver distress; however, our results highlight the additive importance of patients' theory of mind deficits above and beyond their anosognosia. Evaluation of both patient anosognosia and ToM deficit in clinical contexts may provide meaningful information to predict which caregivers are at particular risk for adverse outcomes.

BackgroundAccessible screening tools are crucial for the early detection of cognitive impairment in Parkinson's disease (PD), especially in contexts where in-person assessments are not feasible.ObjectiveTo assess the clinical usability of telephone-based cognitive screening (TBCS) tools in PD patients.MethodsForty-two non-demented PD individuals and N = 103 healthy controls (HCs) underwent a TBCS battery including the Telephone Interview for Cognitive Status (TICS), the Telephone-based Frontal Assessment Battery (t-FAB) and sub-tests from the Telephone-based Verbal Fluency Battery (t-VFB) and Telephone Language Screener (TLS). PD individuals were also administered the Montreal Cognitive Assessment (MoCA) in person and assessed for behavior and cognitive-driven functional independence via caregiver-report questionnaires administered over the telephone (Neuropsychiatric Inventory, NPI and Amsterdam IADL Questionnaire - 30-item version, A-IADL-Q-30, respectively). Correlations were run to test the construct and ecological validity of TBCS tests in PD individuals; ROC analyses were run to test the capability of TBCS tests to discriminate PD individuals from HCs and PD individuals with a defective MoCA from those performing normally (PD-MCI vs. PD-CN).ResultsThe vast majority of TBCS measures were significantly associated with the MoCA and A-IADL-Q-30 scores, supporting convergent and ecological validity, respectively; TBCS measures also diverged from the NPI. TBCS measures of global cognition and executive-attentive measures discriminated PD individuals from HCs with acceptable accuracy (AUC = 0.71-0.75), showing, by contrast, a better performance in differentiating PD-MCI from PD-CN groups (AUC = 0.74-0.89).ConclusionTBCS tests are clinimetrically sound tools for identifying cognitive deficits in PD.

BackgroundIn dementia research, affective neuropsychiatric symptoms (NPS)-depression, anxiety, and apathy-remain understudied. Improving strategies to ensure robust and comparable identification of clinically relevant NPS is essential for better research.ObjectiveWe sought to determine how often objective metrics and clinical gestalt metrics agree on NPS presence or absence. We further sought to determine optimal cut-offs for affective NPS presence/absence using the Neuropsychiatric Inventory Questionnaire (NPIQ) severity ratings.MethodsWe assessed agreement for NPS presence/absence among 5 different depression metrics, 4 anxiety metrics, and 2 apathy metrics via Jaccard indices using the National Alzheimer's Coordinating Center (NACC) dataset. Analysis included exploring four different NPIQ severity rating thresholds of ">0", ">1", ">2", and "=0 and >1".ResultsNPIQ cut-off >1 for presence and =0 for absence of an NPS led to the best agreement with other metrics. However, there was poor agreement for NPS presence across depression metrics (6%) and across anxiety metrics (7%). Choice of metric could greatly skew the frequency of an NPS being present. All 3 affective NPS were more common in Lewy body disorder compared to Alzheimer's disease or vascular cognitive impairment, regardless of metric.ConclusionsThough NPIQ severity rating cut-off choice should depend on study design, using a severity score of >1 for presence and =0 for absence may best fit clinical gestalt for affective NPS. Lewy body disorders present with more affective NPS than other common dementia etiologies. Future consensus on criteria for depression and anxiety syndromes in dementia may improve their identification.

Subjective cognitive complaint (SCC) has been reported in normal elderly (NE) and Mild Cognitive Impairment (MCI). We investigated the neuropsychiatric predictors of SCC in NE and MCI, and the biomarkers abnormalities, and neural correlates of SCC in MCI. Clinical, cognitive and imaging data of 233 MCI and 419 NE were obtained from the Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI-3) database. SCC was assessed by the Cognitive Change Index (CCI) and Everyday Cognition (ECog). Neuropsychiatric symptoms were evaluated through the Neuropsychiatric Inventory (NPI). Brain amyloid and tau status were obtained from [18 F]Florbetapir-PET and [18 F]Flortaucipir-PET SUVR in predefined target regions, and brain and grey matter volumes from structural MRI. SCC was significantly correlated with depression, anxiety, apathy, irritability, and sleep disorders, in MCI. Linear regression showed that depression and anxiety were significantly associated to SCC index, in MCI. SCC was neither significantly different in amyloid positive vs. negative, nor in tau positive vs. negative MCI. MCI with SCC showed significantly lower Braak 3–4 region volume and reduced amygdala volume, compared to MCI without SCC. MCI with SCC and NPI showed lower posterior cingulate cortex volume compared to MCI without SCC or NPI, whereas MCI with SCC but without NPI had lower anterior cingulate cortex volume, compared to MCI without SCC or NPI. These findings recommend the crucial role of psychological therapies focused on anxiety and depression, to prevent the worsening of the subjective cognitive complaint that represent a strong factor of conversion to objective cognitive disorders.

IntroductionNeuropsychiatric symptoms are often considered late manifestations of dementia and can be neglected during early clinical assessments. Besides visual hallucinations, less is known about other neuropsychiatric symptoms in mild dementia with Lewy bodies (DLB). We aimed to 1) describe neuropsychiatric symptoms and associated caregiver distress in mild DLB; 2) describe neuropsychiatric symptoms stratified by dementia stage within the included participants.MethodsIndividuals with probable DLB and their caregivers underwent clinical and neuropsychiatric assessments. Clinical Dementia Rating Global Score (CDR-G) of 0.5 (denoting "very mild dementia") was used to stratify the participants into earlier and later stage subgroups. The Neuropsychiatric Inventory (NPI) was used to assess neuropsychiatric symptoms. Median regression was used to estimate the difference in symptom severity and caregiver distress between the subgroups.ResultsFifty participants (age 73.5 ± 5.7years, 43 males, median mini mental state exam (MMSE) 26 [IQR 23 - 27], median CDR 0.5 [IQR 0.5 - 1]) were enrolled. Twenty-six had earlier and 24, later stage dementia. Neuropsychiatric symptoms were common across both subgroups (96.2% and 95.8% prevalence respectively), with apathy, anxiety and depression being most prevalent (≥50% prevalence). Overall symptom severity was similar between the subgroups, although caregivers of the later stage subgroup reported more distress.ConclusionNeuropsychiatric symptom, especially apathy, anxiety and depression, are extremely common in mild DLB. Assessment of neuropsychiatric symptoms is therefore an essential part of clinical care in DLB, starting from initial presentation. Future studies should consider factors other than symptom severity that contribute to caregiver distress.

Associations between frailty, biomarkers of cerebral pathology, cognitive and neuropsychiatric symptoms: a memory clinic study

Neuropsychiatric symptoms (NPS) are highly prevalent in nursing home residents. The main aims of this study were to examine whether music-based care (MBC) had sustained effects on NPS in nursing home residents with dementia and chronic pain and to describe the distribution of NPS. A secondary analysis of a cluster-randomised controlled trial with intervention and control groups was performed. The 8-week MBC intervention included daily individualised prerecorded music integration. A large sample of nursing home residents with dementia and chronic pain in 12 nursing homes in Norway were screened for pain and dementia by experts and included in the study. The Neuropsychiatric Inventory Nursing Home Edition (NPI-NH) was completed for the residents at pre-test and after the 8-week MBC intervention. Descriptive statistics were used to characterise the sample, and multilevel mixed model analysis assessed the difference in change in NPI-NH scores before and after the intervention between the groups. The sample (n = 232) had a mean age of 86 years (SD 8.8), with 71% being female. Overall, 41%, 38% and 21% had severe, moderate or mild dementia, respectively, while 77% had moderate pain and 23% severe pain. Over two-thirds (68%) of the sample had at least one clinically important (≥ 4) NPI-NH symptom at pre-test, with mean NPI-NH total score of 19 (range 0–89). The most commonly identified NPI-NH subcategories were agitation (44%), affective symptoms (34%) and psychosis (25%) at pre-test. There was no significant difference in changes either comparing the NPI-NH total score (p = 0.396) (confidence interval: CI [–2.6 to 6.6]) between the intervention group (n = 108) and the control group (n = 124) or comparing any of the three NPI subcategories: psychosis (p = 0.203) (CI [–0.5 to 2.3]), agitation (p = 0.830) (CI [–2.3 to 1.8]) or affective symptoms (p = 0.447) (CI [–0.9 to 2.1]). No statistically significant sustained effect of the MBC intervention on NPI symptoms was found among residents with dementia and chronic pain. Future studies should include measurement points closer to the intervention to evaluate short-term effects of MBC. Data were collected from June 2020 until June 2021 (ClinicalTrials.gov Identifier: NCT04229446), registered 9/10/2019.

Informal caregivers provide a large part of the care required by people living with dementia. With disease progression, the burden on caregivers typically increases. Dyadic interventions, addressing both the caregiver and the person living with dementia simultaneously, can help to stabilize home care settings. This study examines the effectiveness and cost-effectiveness of an app-assisted dementia care intervention. Living@home is a two-arm, randomized, controlled, multi-center interventional study designed to evaluate the effectiveness of a dyadic, app-based intervention on home care stability as well as the cost-effectiveness of this approach. The inclusion criteria are a formal diagnosis of dementia and living in their own home for the person with dementia, as well as access to a smartphone and internet for the informal caregiver. A total of 554 dyads will be recruited in five participating memory clinics and randomized (1:1 ratio, using block randomization) into either the intervention or the control group. The intervention group will receive personalized dementia care management for a period of 12 months. A mobile health app connecting caregivers with a Family Care Specialist offers informal caregivers access to memory clinics and Care Specialists at any time, monitoring of their health situation through real-time data collection, overview of care-related tasks, information and alerts tailored to the reported individual caregiver burden. The control group receives care-as-usual. Both groups will be assessed at baseline and after 12 months. The primary outcome is the caregiver's perseverance time (Perseverance Time Scale), and crucial secondary supportive outcomes are neuropsychiatric symptoms in the person living with dementia (Neuropsychiatric Inventory), and the caregiver's perceived burden (Zarit Burden Interview). Further secondary outcomes include the caregiver's resilience and self-efficacy, the dyads' physiological stress level (as measured by hair cortisol concentrations), health-related quality of life, caregiver depression and anxiety, dyads' unmet needs, and cost-effectiveness. Intervention effects will be estimated by using multivariate regression analyses. Evidence on the effectiveness and cost-effectiveness of the intervention created from this study can help to inform decision makers and support the transition of the intervention to standard care. ClinicalTrials.gov NCT07251088, Registered25.11.2025.

BackgroundDepression assessment in persons with dementia (PWD) often prioritizes caregiver report, with limited integration of self-report due to concerns about PWD insight.ObjectiveThis cross-sectional study examined discrepancies between self- and caregiver-reported depression in PWD and identified neuropsychiatric and diagnostic predictors of discordance.Methods402 PWD diagnosed with Alzheimer's disease (AD), behavioral variant frontotemporal dementia (bvFTD), semantic variant primary progressive aphasia (svPPA), or progressive supranuclear palsy (PSP) self-reported depression using the Geriatric Depression Scale (GDS), while caregivers completed the Neuropsychiatric Inventory (NPI). Discrepancies were categorized as Concordant (agreement), Discordant Type 1 (self-reported depression denied by caregiver), or Discordant Type 2 (caregiver-reported depression denied by PWD).ResultsOne-third (33.8%) of dyads showed discrepancies: 66.2% were concordant, 10.2% Discordant Type 1, and 23.6% Discordant Type 2. PSPs had higher incidence of Type 1 discordance compared to AD (OR = 2.91, p < 0.05), while svPPAs were less likely to incur Type 2 discordance than AD (OR = 0.33, p < 0.01). Higher self-reported GDS Hopelessness, Withdrawal, and Worry predicted higher rates of Type 1 discordance, while lower Dysphoria predicted Type 2 discordance. Higher caregiver-reported NPI Apathy increased odds of Type 1 discordance (OR = 2.46, p < 0.05) and lower NPI Anxiety increased odds of Type 2 discordance (OR = 0.50, p < 0.01). Among cases with Type 1 discordance, caregivers often endorsed PWD apathy, irritability, agitation, or anxiety instead of depression.ConclusionsDiscrepancies in reporting depression in PWD can reflect underreporting by caregivers, not only denial by PWD. Integrating self-report, caregiver input, and clinical judgment may improve diagnostic accuracy for depression in PWD and improve care.