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Background: Home-based care (HBC) services have gained global attention for their potential to reduce caregiver burden among informal caregivers of persons with dementia (PwDs), who experience high caregiving intensity. However, research on HBC and its effects on dementia caregiving in China remains limited., Methods: Data were collected from primary caregivers of PwDs in Jiangsu Province, China. Caregiving intensity and HBC utilization were measured using self-developed instruments. Caregiver burden was assessed by The Burden Scale for Family Caregivers-short. Factor analysis was employed to decompose HBC services. Hierarchical multiple regression analysed the moderating effects of HBC on the relationship between caregiving intensity and burden., Results: A community sample of 318 caregiver and PwDs dyads was included. Caregivers averagely aged 62.16 years, with 61% being female, 84% not employed, and 66.2% having low income. PwDs aged 77.45 years averagely, with 52.8% being female and an average behavioural problems score of 42.27. Caregivers averaged 15.19 on response measures. The number and time spent on ADL-based tasks were positively associated with caregiver burden (β = 0.26, p < .001; β = 0.16, p < .01). However, attendance and time of supervision tasks were not significant predictors of burden. HBC services in China comprised four dimensions: Referral service, Household care, Skilled care, and Mental health service. While these did not directly predict caregiver burden, they moderated the associations between ADL-based tasks and caregiver burden (β=-0.25, p < .001; β=-0.24, p < .001; β=-0.23, p < .001; β=-0.20, p < .001), between time of ADL-based tasks and caregiver burden (β=-0.17, p < .001; β=-0.18, p < .001; β=-0.17, p < .001; β=-0.15, p < .01), and between the attendance at supervision tasks and caregiver burden (β=-0.11, p < .05; β=-0.20, p < .001; β=-0.17, p < .001; β=-0.17, p < .001). Only Referral service buffered the relationship between supervision time and caregiver burden (β = -0.13, p < .01)., Conclusion: Informal caregivers of PwDs face high caregiving intensity and burden. HBC services may moderate this relationship, with different services playing varying roles. Further research is essential to explore the impact of supervision levels and develop effective strategies to enhance HBC services for dementia caregiving in China., (© 2024. The Author(s).)

The demanding nature of caring for relatives with Alzheimer's disease and related dementias (ADRD) can lead to family caregiver burden and poor health. The stigmatization of people with ADRD can also impact caregivers' stress, while their support-seeking strategies may mitigate negative impacts of burden on their health. To examine hypothesized relationships, the present study considered whether different dimensions of ADRD family stigma influenced the association between a care recipient's behavioral symptoms and their family caregiver's perceived burden and if direct support seeking explained a connection between caregiver burden and well-being. Family caregivers ( n  = 375) completed a Qualtrics survey. Path analysis revealed ADRD behavioral symptoms predicted both caregiver and layperson forms of stigma. Layperson stigma also intervened between behavioral symptoms and caregiver burden. Direct support seeking mediated the association between caregiver burden and well-being. Findings underscore the utility of including stigma within ADRD caregiver stress models and studying caregiver health from network and communication perspectives.

Objectives: A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers., Method: A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables-caregiving competence, loneliness, caregiver burden, and depressive symptoms-were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]., Results: The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups., Conclusion: The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Objectives: To systematically evaluate the effects of telehealth interventions on the caregiver burden and mental health of caregivers for people with dementia (PWD)., Method: Relevant randomized controlled trials (RCTs) of telehealth interventions on caregivers were extracted from nine electronic databases (PubMed, The Cochrane Library, Web of Science, Embase, CINAHL, SinoMed, CNKI, WanFang, and VIP). The retrieval time was from inception to 26 July 2023., Results: Twenty-two articles with 2132 subjects were included in the final analysis. The meta-analysis demonstrated that telehealth interventions exerted a significant effect in reducing caregiver burden (SMD: -0.14, 95 % CI: -0.25, -0.02, p  = 0.02), depression (SMD = -0.17; 95%CI: -0.27, -0.07, p  < 0.001) and stress (SMD = -0.20, 95%CI: -0.37, -0.04, p  = 0.01). However, no statistically significant effect was observed on anxiety (SMD = -0.12, 95%CI: -0.27, 0.03, p  = 0.12). Moreover, subgroup analysis showed that tailored interventions were associated with more evident reductions in depression (SMD = -0.26; 95%CI: -0.40, -0.13, p  < 0.001) than standardized interventions (SMD = -0.08; 95%CI: -0.22, 0.06, p  = 0.25). In addition, telehealth was effective in relieving depression in Internet-based (SMD = -0.17, 95%CI: -0.30, -0.03, p  = 0.01) and Telephone-based group (SMD = -0.18, 95%CI: -0.34, -0.02, p  = 0.03), while there was no significant difference in the Internet and Telephone-based group (SMD = -0.18, 95%CI: -0.54, 0.18, p  = 0.32)., Conclusion: Telehealth could effectively reduce the burden and relieve the depression and stress of caregivers of PWD, while its effect on anxiety requires further research. Overall, telehealth has potential benefits in dementia care.

Background: Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months., Methods: A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression., Results: Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis., Conclusions: Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships., (© 2024 Japanese Psychogeriatric Society.)

Chinese family caregivers of people with dementia (PWD) can suffer from physical and psychological burden. This study aimed to examine the effects of logotherapy-based interventions on Chinese family caregivers of older adults with dementia to decrease caregiver burden. This mixed-methods study used a pre-experimental design with pre-posttests and semi-structured interviews. A purposive sample of 13 family caregivers from a suburban district in Shanghai was enrolled with (1) caregiver burden and (2) access and capability to use smart devices. Participants received eight online group logotherapy sessions with a focus on hope and meaning construction. Participants completed the Zarit Burden Interview, a 22-item measure of caregiver burden, before and after the intervention, and a 30-min semi-structured interview post-intervention. From the quantitative data, dementia caregivers reported severe caregiving burdens at the baseline ( M  = 54.77, SD  = 9.33). Caregiver burden significantly decreased after the logotherapy-based intervention ( M  = 52.15, SD  = 8.80, p  < .001). Two themes pertaining to participants' experiences in intervention emerged from the qualitative data: (1) improved attitudes toward suffering, and (2) enhanced sense of meaning in life and hope. The cultural relevance of logotherapy to Chinese familism and Confucianism may further enhance its feasibility in the Chinese context.

Objectives: Evidence-based interventions for dementia caregivers, such as the Savvy Caregiver Program (SC), seek to address skills and knowledge deficits, caregiver burden, depressive symptoms, and grief. Little research has examined mechanisms by which these interventions accomplish their goals. Caregiver preparedness may be a possible mechanism by which caregiver interventions may confer benefits., Methods: The sample included 76 dementia caregivers who completed the 6-session SC. Participants completed the Anticipatory Grief Scale, Center for Epidemiological Studies-Depression Scale, the Preparedness for Caregiving Scale, and the Zarit Burden Interview-Short Form., Results: A repeated measures ANOVA was utilized to determine the interaction between baseline scores and pre-post change in caregiver preparedness. Analysis significantly predicted caregiver burden, ( F (1)  = 6.68, p =.012, partial η 2 =.10), depressive symptom endorsement, ( F (1)  = 6.41, p =.014, partial η 2 =.09, and anticipatory grief, ( F (1)  = 6.22, p =.02, partial η 2 =.1), post-treatment., Conclusions: Pre-post change in caregiver preparedness significantly predicted pre-post change across measures of caregiver burden, depressive symptom endorsement, and anticipatory grief. Findings suggest that caregiver preparedness may be one mechanism by which the SC confers positive outcomes. These findings provide an empirical and theoretical basis for tailoring future dementia caregiver interventions., Clinical Implications: Clinical Interventions may seek to improve caregiver preparedness and subsequent outcomes through utilization of programs like SC.

Dementia spousal caregivers are at risk for adverse mental and physical health outcomes. Caregiver burden, anticipatory grief, and proinflammatory cytokine production may contribute to depressive symptoms among caregivers. People who report childhood trauma are more likely to have exaggerated stress responses that may also contribute to depressive symptoms in adulthood. This study aimed to test whether the relationship between whole-blood cytokine production and depressive symptoms is strongest in caregivers who report high levels of childhood trauma., Methods: A sample of 103 dementia spousal caregivers provided self-report data on demographics, health information, caregiver burden, anticipatory grief, and depressive symptoms. We also determined lipopolysaccharide-induced whole-blood cytokine production as the primary measure of immune cell reactivity. We measured interleukin-1β (IL-1β), interleukin-6 (IL-6), tumor necrosis factor-α (TNF-α), and interleukin-10 (IL-10) and converted z-scores of each cytokine into a composite panel. We regressed depressive symptoms on proinflammatory cytokine production, caregiver burden, and anticipatory grief, adjusting for demographic and health-related covariates., Results: Whole-blood cytokine production and childhood trauma were associated with depressive symptoms. Childhood trauma moderated the relationship between whole-blood cytokine production and depressive symptoms. Whole-blood cytokine production was only associated with depressive symptoms at mean and high levels of childhood trauma, but not at low levels of childhood trauma. The main effects of burden and anticipatory grief on depressive symptoms were strongest for caregivers reporting high levels of childhood trauma., Discussion: Childhood trauma has lasting impacts on psychosocial experiences later in life and has effects that may confer susceptibility to inflammation-related depression. Our findings contribute to ongoing efforts to identify risk factors for adverse mental health in dementia spousal caregivers., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to disclose. This research was conducted within a larger study funded through the National Institutes on Aging [R01AG062690]., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Objectives: Previous studies have examined the psychological burden of caregivers of patients with dementia. However, although many caregivers struggle to assist patients with dementia with medication management, the relationship between assisting such patients with taking their medicines and the caregiver psychological burden is understudied. Therefore, this study identified the association between caregivers' psychological burden and assisting patients with dementia with taking medication., Methods: A cross-sectional survey was conducted among caregivers of patients with dementia in Japan. The survey questionnaire included questions that assessed the symptoms of patients with dementia, their status of taking medication through medication assistance from caregivers, and caregivers' psychological burden using the Kessler Psychological Distress Scale and the Japanese version of the Perceived Stress Scale., Key Findings: A total of 57 caregivers participated in the study. Higher Kessler Psychological Distress Scale scores were significantly associated with unsuccessful assistance with taking regular medication (β = 0.35, 95% confidence interval [CI]: 2.23-12.0, P < .05), depressive symptoms (β = 0.26, 95% CI: 0.10-8.53, P < .05), and irritability (β = 0.38, 95% CI: 2.71-11.5, P < .05). Likewise, higher scores on the Japanese version of the Perceived Stress Scale were significantly associated with irritability (β = 0.37, 95% CI: 1.87-12.5, P < .05) among patients with dementia., Conclusion: The findings suggest that caregiver psychological burden is associated with unsuccessful assistance with taking regular medication for patients with dementia., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: The main objective of this study was to examine the burden of schizophrenia, depression, Alzheimer's disease/dementia, and stroke on caregivers and non-caregivers in Japan. This study also aimed to provide a comparative landscape on the burden of caregiving for each disorder., Methods: The Japan National Health and Wellness Survey database, 2016 and 2018 was used in this study. Health-related quality of life (HRQoL), work productivity, and health care utilization were assessed using a self-administered, Internet-based questionnaire. The burden of caregiving experienced by each group of caregivers was compared with background-matched non-caregivers (controls) as well as with caregivers of patients with each disorder., Results: Caregivers of patients with schizophrenia, depression, Alzheimer's disease/dementia, or stroke had lower HRQoL, higher healthcare costs and work productivity impairment than non-caregivers. Furthermore, caregivers of patients with psychiatric disorders such as schizophrenia and depression had lower HRQoL and work productivity than caregivers of patients with Alzheimer's disease/dementia and stroke. In addition, according to the Caregiver Reaction Assessment (CRA), caregivers of patients with schizophrenia and depression were more inclined to perceive a loss in physical strength and financial burden to the same extent as their self-esteem., Conclusions: This study indicated a substantial caregiving burden among caregivers of patients with psychiatric and neurological diseases in Japan. The caregiver burden of psychiatric disorders (schizophrenia and depression) was greater than that of neurological disorders (Alzheimer's disease/dementia and stroke), suggesting a need to provide support to caregivers of patients with psychiatric disorders to be better able to care for their patients., Trial Registration: None., (© 2024. The Author(s).)

Background: Providing care for people with dementia incorporates a level of burden which can affect quality of life for both the caregiver and the recipient of care. This study measures the level of burden experienced by Jordanian caregivers for people with dementia and explore related predictors., Methods: Through a cross-sectional survey, participants were invited through convenience sampling to participate in a structured interview., Results: A total of 406 participants completed the survey. According to Zarit Burden Interview, the mean burden score of the sample was 26.2 (SD = 16.2). This score falls under the mild to moderate burden level. Older age of the patient, severe dementia, lower number of caregivers, if the caregiving negatively affected family relations, and if the caregiving negatively affected jobs, were significant predictors of burden., Conclusion: Caregivers in the current study reported no burden to a minimum burden. This result does not mean that these caregivers have no or minimal stress or that they do not have psychological needs; on the contrary, these results call for more attention to providing extra psychological and emotional support to caregivers of patients with dementia in order to decrease the burden level and maintain their efforts in caregiving. Future studies are required to discern the shape and context of unmet caregiver needs, assessment, and support., (© 2024 Japanese Psychogeriatric Society.)

Background: Family caregivers of older adults living with dementia are known to experience higher burden levels. Methods: This empirical study conducted a sub-group analysis of burden levels of 97 family caregivers by the dementia severity of care recipients. Family caregivers were assessed before and after the 9-week Stress-Busting Program for Family Caregivers TM (SBP). Results: Family caregivers of older adults living with severe dementia had the highest baseline Zarit Burden Interview (ZBI) score of 27.7 which decreased to 25.0 ( p < .05); family caregivers of those living with moderate dementia had a baseline ZBI score of 24.3 which decreased to 20.4 ( p < .01); and family caregivers of those living with mild dementia had the lowest baseline ZBI score of 21.0, which decreased to 18.0 ( p < .01). Conclusion: The SBP intervention was associated with a 15% reduction in burden scores for family caregivers of older adults living with dementia., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Aims: The objective of this study was to examine the relationship between caregiving burden and pre-death grief, with a specific focus on adult-child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation., Methods: A convenience sample of 320 adult-child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit-Meuser Caregiver Grief Inventory-Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist-Revised., Results: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre-death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre-death grief, but in the male group, this mediating effect did not exist., Conclusion: The study found evidence supporting the link between caregiving burden and pre-death grief among adult-child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre-death grief. These associations only existed in the female group., Implications: This paper presented the importance of active coping skills in the dementia caregiving process., Impact: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre-death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre-death grief. Community-based and personal care support services should be promoted to alleviate their caregiving burden., Reporting Method: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: 'No patient or public involvement'., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD., Methods: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy., Results: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy., Conclusion: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD., Trial Registration: ISRCTN14565552 (retrospectively registered)., (© 2024. The Author(s).)

This study aimed to investigate if our web application could be a viable intervention for providing caregivers with information on resilient coping strategies for the reduction of their burden, thereby leading to the alleviation of behavioural and psychological symptoms of dementia (BPSD). We recruited outpatients with dementia and informal caregiver dyads at Nagoya University Hospital from April 2022 to October 2022. The caregivers were asked to have the web application installed on their smartphones during the study period and answer the following two self-administered questionnaires once a month for 3 months: (a) Abe's BPSD Score (ABS), which assesses BPSD, and (b) the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) score, which measures caregiver burden. Thirteen patients and informal caregiver dyads were enrolled in this study. The caregivers exchanged information on the care of patients with dementia in the virtual community using the web application during the study period. Upon entry, J-ZBI scores were correlated with ABSs (r = 0.65). Linear mixed-effects model revealed the average J-ZBI scores decreased over time with significance (p = 0.013), however, the average ABSs did not change during the study period. This is the first study to show that our web application reduces caregiver burden. However, to confirm the efficacy of our web application, further investigations are required., Competing Interests: Authors declare no conflicts of interest for this article.

Background: The number of patients with dementia increases rapidly in aging populations. Dementia is an irreversible disease that causes a patient to be dependent on others' care and also causes family caregivers to experience difficulties in multiple domains., Purpose: In this study, a dementia caregiver's burden scale that addresses family caregivers' characteristics and caring environments was developed and validated., Methods: In-depth interviews with nine caregivers were conducted to identify the attributes of perceived burden and establish preliminary questions. Content validity was confirmed by seven experts using the item content validity index and scale content validity index/average. Construct validity, criterion-related validity, and reliability were verified using data from 205 primary caregivers of patients with dementia., Results: Exploratory factor analysis revealed that five factors, including physical health deterioration, responsibility and role of caregiver, emotional distress, medical expense concerns, and family conflict, and 24 items explained 68.6% of the total variance. The calculated Cronbach's α for the overall scale was .96., Conclusions: The scale developed in this study may be used to measure the burden perceived by family caregivers of patients with dementia in the physical, emotional, social, financial, and situational domains. Also, the scale may be used to guide the development of tailored interventions that take into consideration different family caregiver and caring situation-related characteristics., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Wolters Kluwer Health, Inc.)

This study aimed to analyze the relationship between the caregiver burden, death obsessions, and somatic symptoms; and whether the death obsessions are playing a mediating role in the relationship between the caregiver burden and somatic symptoms. The study was done on the informal dementia caregivers residing in India. Three questionnaires in a google form were circulated. The correlational and mediation analysis revealed that there was a significant and positive correlation between the caregiver burden, death obsessions, and somatic symptoms. Further, the death obsessions significantly mediated the relationship between caregiver burden and somatic symptoms., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Importance: Long-term evidence for the effectiveness and cost-effectiveness of collaborative dementia care management (CDCM) is lacking., Objective: To evaluate whether 6 months of CDCM is associated with improved patient clinical outcomes and caregiver burden and is cost-effective compared with usual care over 36 months., Design, Setting, and Participants: This was a prespecified secondary analysis of a general practitioner (GP)-based, cluster randomized, 2-arm clinical trial conducted in Germany from January 1, 2012, to December 31, 2014, with follow-up until March 31, 2018. Participants were aged 70 years or older, lived at home, and screened positive for dementia. Data were analyzed from March 2011 to March 2018., Intervention: The intervention group received CDCM, comprising a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia care collaborating with GPs and health care stakeholders over 6 months. The control group received usual care., Main Outcomes and Measures: Main outcomes were neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI]), caregiver burden (Berlin Inventory of Caregivers' Burden in Dementia [BIZA-D]), health-related quality of life (HRQOL, measured by the Quality of Life in Alzheimer Disease scale and 12-Item Short-Form Health Survey [SF-12]), antidementia drug treatment, potentially inappropriate medication, and cost-effectiveness (incremental cost per quality-adjusted life year [QALY]) over 36 months. Outcomes between groups were compared using multivariate regression models adjusted for baseline scores., Results: A total of 308 patients, of whom 221 (71.8%) received CDCM (mean [SD] age, 80.1 [5.3] years; 142 [64.3%] women) and 87 (28.2%) received usual care (mean [SD] age, 79.2 [4.5] years; 50 [57.5%] women), were included in the clinical effectiveness analyses, and 428 (303 [70.8%] CDCM, 125 [29.2%] usual care) were included in the cost-effectiveness analysis (which included 120 patients who had died). Participants receiving CDCM showed significantly fewer behavioral and psychological symptoms (adjusted mean difference [AMD] in NPI score, -10.26 [95% CI, -16.95 to -3.58]; P = .003; Cohen d, -0.78 [95% CI, -1.09 to -0.46]), better mental health (AMD in SF-12 Mental Component Summary score, 2.26 [95% CI, 0.31-4.21]; P = .02; Cohen d, 0.26 [95% CI, -0.11 to 0.51]), and lower caregiver burden (AMD in BIZA-D score, -0.59 [95% CI, -0.81 to -0.37]; P < .001; Cohen d, -0.71 [95% CI, -1.03 to -0.40]). There was no difference between the CDCM group and usual care group in use of antidementia drugs (adjusted odds ratio, 1.91 [95% CI, 0.96-3.77]; P = .07; Cramér V, 0.12) after 36 months. There was no association with overall HRQOL, physical health, or use of potentially inappropriate medication. The CDCM group gained QALYs (0.137 [95% CI, 0.000 to 0.274]; P = .049; Cohen d, 0.20 [95% CI, -0.09 to 0.40]) but had no significant increase in costs (437€ [-5438€ to 6313€] [US $476 (95% CI, -$5927 to $6881)]; P = .87; Cohen d, 0.07 [95% CI, -0.14 to 0.28]), resulting in a cost-effectiveness ratio of 3186€ (US $3472) per QALY. Cost-effectiveness was significantly better for patients living alone (CDCM dominated, with lower costs and more QALYs gained) than for those living with a caregiver (47 538€ [US $51 816] per QALY)., Conclusions and Relevance: In this secondary analysis of a cluster randomized clinical trial, CDCM was associated with improved patient, caregiver, and health system-relevant outcomes over 36 months beyond the intervention period. Therefore, it should become a health policy priority to initiate translation of CDCM into routine care., Trial Registration: ClinicalTrials.gov Identifier: NCT01401582.

Objectives: Although caregiver burden is common in the context of dementia caregiving, the caregiving role is linked to beneficial outcomes too. Individuals reporting higher positive aspects of caregiving tend to exhibit lower burden relative to those reporting few. The goal of this retrospective review of outpatient memory clinic medical records was to demonstrate whether and how constructs of burden and positive aspects of caregiving coexist within individual caregivers, and to explore potential contributors to caregiver profiles created based upon these constructs., Method: Cluster analyses were conducted on 1160 caregivers from an initial intake interview meeting criteria on primary measures of Positive Aspects of Caregiving and the Zarit Burden Interview and repeated with 225 caregivers meeting inclusion criteria on all measures. Samples were compared for similarity, and the smaller sample ( n  = 225) was deemed appropriately representative. Multinomial logistic regressions examined cluster predictors in sample with 225 caregivers., Results: Results suggested a three-cluster solution: a High Burden group, a High Positive Experiences group, and a Low-Moderate Experiences group showing low burden and moderate positive experiences. Greater behavioral problems predicted belonging to the High Burden cluster. Greater care recipient dependence predicted belonging to the High Positive Experiences cluster while greater independence predicted the Low-Moderate Experiences cluster., Conclusion: Findings suggest that burden and positive aspects of caregiving do not simultaneously present in caregivers at high levels. Supportive caregiver interventions might be tailored to profiles demonstrated here. Future research should investigate other potential contributors to experiences of burden and positive aspects of caregiving.

Dementia is a chronic disorder of the brain that affects cognitive performance. The caregivers of individuals with dementia experience a greater burden that affects their Quality of Life (QoL). This cross-sectional study conducted in India was designed to assess the caring burden and QoL among the caregivers of people with dementia, as well as to ascertain the relationship between QoL scores and burden. Our sample included 80 caregivers of people with dementia. Most of the caregivers ( n  = 59, 73.8%) had a higher level of caregiver burden. There was a negative correlation between caregiver burden scores and QoL. A higher level of caregiver stress and low QoL were experienced by caregivers of dementia patients. In developing countries like India, counseling, and education on home health care for people with dementia should be provided to reduce the burden and enhance the QoL of caregivers.

Background and Objectives: Family caregivers of persons with dementia face an elevated risk of several chronic illnesses compared to their noncaregiver counterparts. Although exercise is a strong preventive measure for several debilitating health conditions, longitudinal research guided by theoretical frameworks has not identified how behavioral determinants predict exercise among caregivers. This study aimed to investigate how intrapersonal exercise determinants contribute to caregivers' exercise participation while accounting for social-contextual factors, including perceived caregiving burden and pandemic-related distress, by employing an extended Health Belief Model., Research Design and Methods: The study was a longitudinal observational design. Community-dwelling older adult family caregivers of individuals with dementia (n = 127) were recruited with the support of a nonprofit organization. Participants completed measures of the Health Belief Model that also included dual process constructs (intention and habit), along with caregiving burden, pandemic-related distress, and exercise behavior across three consecutive months. Data were analyzed using a multilevel structural equation model with participants (Level 2) nested within time (Level 1)., Results: The model revealed direct effects of caregiving burden that debilitate perceived behavioral control, attitudes, threats, and worsen burden, in addition to hampering intention and habit when accounting for total effects. Pandemic-related distress exacerbated caregiving burden and weakened Health Belief Model constructs via total effects., Discussion and Implications: These findings inform constructs to develop a community-based education program for family caregivers to successfully adopt and maintain exercise behavior. Incorporating supportive resources and coping strategies for caregivers of persons with dementia is needed to address the effects of behavioral deterrents., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: This study examined the performance of the Modified Caregiver Strain Index (MCSI) in a sample of Black and White caregivers of persons living with dementia., Research Design and Methods: Data on 153 dyads enrolled in the Care Ecosystem dementia care management program were analyzed, including sociodemographic variables, dementia severity, and caregiver burden and wellbeing. Factor structure, item-response patterns, and concurrent validity were assessed across racial groups., Results: Differences between Black and White caregivers included gender, dyad relation, and socioeconomic disadvantage. Factor structure and item loadings varied by racial cohort, with parameters supporting a 3-factor model. For Black caregivers, finances and work, emotional and physical strain, and family and personal adjustment items loaded together on individual factors. For White caregivers physical and emotional strain items loaded on separate factors, although personal and family adjustment items loaded with work and financial strain items. Item-level analysis revealed differences between groups, with Black caregivers endorsing physical strain to a greater degree (p = .003). Total MCSI scores were positively correlated with concurrent measures like the PHQ-9 (White: r = 0.67, Black: r = 0.54) and the GAD-2 (White: r = 0.47, Black: r = 0.4), and negatively correlated with self-efficacy ratings (White: r = -0.54, Black: r = -0.55), with a p < .001 for all validity analysis., Discussion and Implications: The MCSI displayed acceptable statistical performance for Black and White caregivers of persons living with dementia and displayed a factor structure sensitive to cultural variations of the construct. Researchers results highlight the inherent complexity and the relevance of selecting inclusive measures to appropriately serve diverse populations., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Objectives: To assess the bidirectional association of caregivers' burden and anticipatory grief with acute health care use (inpatient or emergency admission) among older adults with severe dementia., Design: Prospective cohort., Setting and Participants: A total of 215 family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 3 years (up to 10 surveys). We measured caregiver burden using the Caregiver Reaction Assessment scale and anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form., Methods: Using separate multivariable mixed-effects logistic regressions, controlling for relevant confounders, we assessed the association of caregiver burden and anticipatory grief (independent variables measured at time t) with older adults' acute health care use in the next 4 months (outcome measured at time t + 1). We also performed separate multivariable mixed-effects linear regressions to assess the association of older adults' acute health care use in the past 4 months (independent variable measured at time t) with caregiver burden and anticipatory grief (outcomes measured at time t)., Results: At baseline, 33% of the older adults had an inpatient or emergency admission in the past 4 months. Regression results showed that higher caregiver burden [odds ratio (OR), 1.58; 95% CI, 1.15-2.16] and anticipatory grief (OR, 1.02; 95% CI, 1.00-1.04) significantly increased the likelihood of older adults experiencing acute health care use in the next 4 months. However, older adults' acute health care use in the past 4 months did not significantly change their caregivers' burden or anticipatory grief., Conclusions and Implications: Higher caregiver burden and anticipatory grief increase the likelihood of older adults having acute health care use. Addressing caregivers' well-being has implications for reducing acute health care use in older adults and the economic burden of severe dementia., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Without appropriate support, taking care of people living with dementia may become a burden for family caregivers. Identifying the needs for caregivers can help them minimise the burden of caring and meet quality care for people living with dementia., Methods: In the first phase, a content validity test was conducted on the Carers' Needs Assessment of Dementia (CNA-D) in the Indonesian version. The second phase, a sequential explanatory mixed-methods design, was conducted on 65 family caregivers in two stages. The first stage was a cross-sectional study. A correlation test between caregiver problems and caregiver burden was conducted. The caregiver problems that were statistically significant were analyzed to reveal the unmet needs. A needs analysis was also conducted on problems experienced by more than half of the caregivers. In the second stage, we conducted a semi-structured individual interview, and thematic analysis was used to analyze the data., Results: The result of the validity test of the CNA-D instrument, Indonesian version, obtained a high value for content validity. The main problem of caregivers is a lack of information about dementia; however, it does not have a significant correlation with caregiver burden. The caregiver problem with the highest correlation to caregiver burden is burnout due to caring. More than 50% of caregivers' needs in Sleman Regency were not met in this research. The most essential needs that were not met were counselling and psychotherapy (83.3%-92%). The personal understanding of dementia, spiritual values in caring, cultural values in caring, barriers to accessing healthcare services, and self-care strategies should be considered in fulfilling family caregiver needs., Conclusion: Most of the needs of family caregivers of people living with dementia in Sleman Regency, Yogyakarta, have not been met. Therefore, it requires collaboration with multi-professionals and all stakeholders to fulfil these needs., (© 2024 Japanese Psychogeriatric Society.)

Background: Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers., Objective: To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period., Methods: This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, "other" caregiver and "multiple" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers' QoL outcomes across types of relationship over time., Results: About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers' socio-demographics, "other" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD's dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively)., Conclusions: The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: There are many challenges that entail caring for an individual with dementia, affecting not only the individual with the condition but also their caregivers. This can lead to increased burden, frustration, and depression among those taking care of them. A research gap exists concerning the care of people with dementia in Egypt, particularly regarding the mental health of caregivers. Limited studies have been conducted in Egypt, particularly focusing on the mental health of caregivers. This lack highlights the need to understand the prevalence and impact of caregiver burden in this population., Objectives: The research aimed to evaluate the burden of dementia, levels of depression, and anxiety among family caregivers of individuals with dementia., Methods: A cross-sectional study was conducted at a geriatric unit clinic of a psychiatric hospital in Cairo University, Egypt. Caregiver burden, anxiety, and depression were assessed using questionnaires. These questionnaires included the Zarit Burden Interview (ZBI), Generalized Anxiety Disorder scale (GAD-7), and Patient Health Questionnaire-9 (PHQ-9), together with demographic data on the patients and caregivers., Results: The majority of the 141 participants (73% (n = 103)) were female, mostly daughters, with an average age of 40 years. Approximately 50% (n = 71) of the subjects exhibited mild to moderate burden, whereas 30% (n = 43) showed moderate to severe burden. About 31% (n = 44) of the subjects exhibited symptoms of moderate depression, whereas 9% (n = 13) had symptoms of severe depression. Furthermore, almost 43% (n = 60) of caregivers exhibited a moderate level of anxiety. Furthermore, a significant association was seen between caregiver burden and the presence of anxiety and depression., Conclusion: This study showed a substantial burden in providing care, elevated levels of despair, and anxiety among caregivers of PWD. The findings highlight how important it is to develop targeted therapies and support systems in order to lessen the load on caregivers, advance their mental health, and improve overall care for both caregivers and their patients in Egypt. Policy-makers should prioritize investing in dementia-related support systems and services to empower caregivers and improve the quality of life for both caregivers and their patients., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: People caring for patients with dementia are prone to suffering from burden. Behavioral and psychological symptoms of dementia (BPSD) may have an impact on caregiver burden. In Latin American countries, there is a lack of research on caregiver burden. We aimed to determine which BPSD have the greatest impact on caregiver burden among Peruvian patients with dementia and to compare the effects of BPSD on caregiver burden across different types of dementia., Methods: A cross-sectional study was conducted on 231 patients living with Alzheimer's dementia (AD), behavioral variant frontotemporal dementia (bvFTD), dementia with Lewy bodies (DLB), and vascular dementia (VD) and their caregivers who attended a Peruvian memory clinic. BPSD were assessed with the Neuropsychiatric Inventory (NPI). Caregiver burden was assessed with the Zarit Burden Inventory. We used analysis of variance to compare the AD, bvFTD, DLB, and VD groups. Correlations between Zarit Burden Inventory and NPI subscale scores were assessed with Spearman's correlation., Results: DLB caregivers had significantly higher levels of burden than the other patient groups (p &lt; 0.05) and higher total NPI scores than caregivers for other patient groups (p &lt; 0.05). bvFTD caregivers had significantly higher total NPI scores than AD and VD caregivers (p &lt; 0.05). Hallucinations, aberrant motor behavior, and apathy were the symptoms most significantly correlated with caregiver burden in those caring for DLB, bvFTD, and AD patients, respectively., Conclusion: Neuropsychiatric symptoms are higher in DLB caregivers. Hallucinations, aberrant motor behavior, and apathy are the main symptoms correlated with burden., (© 2024 S. Karger AG, Basel.)

Background: Neuropsychiatric symptoms are a robust risk factor for caregiver burden in family dementia caregivers. By grouping these symptoms, clinical interpretations regarding neuropsychiatric symptoms may facilitated because different groups of symptoms may require a different approach for intervention, thereby reducing caregiver burden., Objective: As clustering of neuropsychiatric symptoms could be clinically relevant, we aimed to explore the effects of these clusters on burden in family dementia caregivers., Methods: 152 family dementia caregivers were included. Caregiver burden was measured using the Ervaren Druk door Informele Zorg (EDIZ)/Self-Perceived Pressure from Informal Care, a Dutch questionnaire. Caregivers also reported the neuropsychiatric symptoms and functional impairments in daily activities of the people with dementia they cared for. Multiple regression analyses were used in this cross-sectional study., Results: Adjusted for functional impairments and sociodemographic variables, neuropsychiatric symptoms were associated with more caregiver burden (p < 0.001). However, this association did not differ between the three neuropsychiatric symptom clusters (p = 0.745)., Conclusions: Neuropsychiatric symptoms were associated with more family caregiver burden, but no conclusive evidence was found that this association differed for the three clusters. Clustering of neuropsychiatric symptoms is, however, worth exploring further in future studies with more participants. If specific links are found, these could be targeted in clinical practice in order to prevent, reduce and/or postpone caregiver burden.

Background: Research has linked increased cognitive decline in a dementia care recipient to worsening caregiver burden, but the presence of positive aspects of caregiving is associated with better outcomes. As cognitive decline worsens, a lack of positive caregiving experiences could lead to burden for the caregiver. This study investigated relationships among dementia caregiver burden, cognitive decline, and positive aspects of caregiving in dementia, predicting an indirect effect of positive aspects of caregiving., Methods: Data from 724 patients of an outpatient memory clinic in Ohio were examined and dyads included based on clinically supported patient diagnoses on the dementia spectrum. Caregivers completed the Zarit Burden Interview (ZBI) and Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Examination were used to estimate cognitive decline, standardized to create a single variable. Multiple potential covariates were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored the presence of an indirect effect of PAC on the relationship between cognitive decline and ZBI using 5000 bootstrap samples., Results: Only the potential covariate caregiver age was correlated with any of the primary variables; this variable was controlled in analyses. Significant relationships emerged between cognitive decline and ZBI (r = -0.12, P < 0.001), between PAC and ZBI (r = -0.23, P < 0.001), and between cognitive decline and PAC (r = -0.07, P < 0.05). An indirect effect of positive aspects of caregiving on the relationship between cognitive decline and ZBI was statistically significant (B = 0.0092, 95% bias-corrected confidence interval: 0.0008, 0.0185), accounting for 14.4% of the variance in the model., Conclusions: A lack of positive aspects of caregiving could be partially responsible for development of dementia caregiver burden as cognitive decline worsens. Longitudinal examination of these relationships is needed to understand causality fully. Findings may help healthcare providers tailor treatment to alleviate caregiver burden., (© 2023 The Authors. Psychogeriatrics published by John Wiley & Sons Australia, Ltd on behalf of Japanese Psychogeriatric Society.)

Objectives: To examine the association between caregiver (CG) depression and increase in elder mistreatment and to investigate whether change in care recipient (CR) neuropsychiatric symptoms (NPS) and change in CG-perceived burden influence this association., Methods: Using 2-year longitudinal data, we analyzed a consecutive sample of 800 Chinese primary family CGs and their CRs with mild cognitive impairment or mild-to-moderate dementia recruited from the geriatric and neurological departments of 3 Grade-A hospitals in the People's Republic of China. Participatory dyads were assessed between September 2015 and February 2016 and followed for 2 years., Results: CG depression at baseline was associated with a sharper increase in psychological abuse and neglect. For CRs with increased NPS, having a depressed CG predicted a higher level of psychological abuse than for those CRs without NPS. For CGs with decreased burden, the level of depression was associated with a slower increase in neglect than for CGs who remained low burden., Discussion: This study showed the differential impact of CG depression on the increase in elder mistreatment depending on the change in CR NPS and CG-perceived burden. The present findings provide valuable insights into the design of a systematic and integrative intervention protocol for elder mistreatment that simultaneously focuses on treating CG depression and perceived burden and CR NPS., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

The co-design of a mobile health (mHealth) application for family caregivers of people with dementia to address functional disability care needs is presented. Participants included family caregivers of people with dementia, aged care nurses, physicians, occupational therapists, and information technology (IT) experts. The co-design process involved two phases: (1) needs assessment phase (an online survey and in-depth interviews with family caregivers and expert consultation); and (2) development of an mHealth application (content and prototype development). Data triangulation from phase one informed the content of the application. Data triangulation resulted in three content modules: "an overview of dementia and care," "management of daily living activities," and "caregivers' health and well-being." The content was based on contemporary literature, and care guidelines with input from family caregivers and dementia care experts. IT engineers developed the mHealth application. In this study, an Android-based mHealth application was designed to address the functional care needs of family caregivers and the co-design process ensured the incorporation of end-users' real-world experiences and the opinions and expertise of key stakeholders in the development of the application prototype.It is to be noted that before releasing the application into the app store, testing its feasibility and effectiveness is essential.

Background: Dementia is commonly accompanied by neurobehavioral symptoms; however, the relationship between such symptoms and health-related outcomes is unclear., Objective: To investigate the impact of specific neurobehavioral symptoms in dementia on healthcare resource use (HCRU), patient quality of life (QoL), and caregiver burden., Methods: Data were taken from the 2015/16 Adelphi Real World Dementia Disease Specific Programme™, a point-in-time survey of physicians and their consulting dementia patients. Multiple regression analyses were used to examine associations between patient symptom groups and health-related outcomes., Results: Each patient symptom group of interest (patients with agitation/aggression and related symptoms [AARS] with psychosis, patients with AARS without psychosis, and patients with other behavioral symptoms) had a positive association with HCRU variables (i.e., HCRU was greater), a negative association with proxy measures of patient QoL (i.e., QoL was decreased), and a positive association with caregiver burden (i.e., burden was greater) compared with patients with no behavioral symptoms (control group). The magnitude of effect was generally greatest in patients with AARS with psychosis. Regression analysis covariates that were found to be most often significantly related to the outcomes were dementia severity and the patients' living situation (i.e., whether they were in nursing homes or living in the community)., Conclusion: Combinations of behavioral symptoms, particularly involving AARS plus psychosis, may have a detrimental impact on health-related outcomes such as HCRU, patient QoL, and caregiver burden in dementia. Our results have implications for intervention development in patients who report clusters of symptoms and caregivers, and for identifying at-risk individuals.

Background/objective: Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood., Design/setting: Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program., Participants: Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program., Intervention: Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks., Measurements: A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up., Results: At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively)., Conclusion: Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI., Competing Interests: No conflict of interest was reported by all authors

Background: In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months., Method: We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona., Results: At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P < 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls., Conclusions: Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home., (© 2020 Japanese Psychogeriatric Society.)

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 ± 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

Background: Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well-being of the PWD-caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear., Objectives: We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers)., Design and Setting: A prospective cohort study with three time points of assessments (at 0, 6, and 12 months)., Participants: Family caregivers of community-dwelling PWD (n = 178)., Measurements: At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1-3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes., Results: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P < .001) and poorer QoL (P < .001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P = .006 and P = .746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P = .010 and P = .110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief., Conclusion: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348-2353, 2020., (© 2020 The American Geriatrics Society.)

This study aimed to evaluate caregiver burden and quality of life (QoL) and their predictors in family caregivers of dementia patients. A descriptive cross-sectional survey was carried out with a sample of 102 patients and their family caregivers. The Caregiver Burden Inventory (CBI) and Short Form-12 (SF-12) were used to collect data. CBI mean score was 37.97 ± 21.30. Mean scores of SF-12 sub-domains varied between 36.02 and 77.94 and were significantly lower as compared to normative means of the general population, excluding only the physical health subdomain. Among several patient and caregiver-related correlations, the number of medications and worse cognitive function of the patient, caregiver's age and having limited space at home were found as predictors of burden, whereas caregiver's chronic disease and having a limited space were predictors of QoL. Also, the burden and QoL were correlated. This study demonstrated a high burden and low QoL in dementia caregivers. In societies where caregivers are mostly informal such as that in Turkey, supportive systems should be established.

Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers' bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers' trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers' loss, particularly among those with more robust social networks prior to bereavement., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Today, biomedical advancements allow older adults, including those with dementia, to live longer, with most living at home with a lay caregiver. Recent research details the stressful role of caregiving to persons with dementia (PWD). The current qualitative phenomenological study describes the lived experience of caregivers caring for PWD, including their experience with palliative care. A community sample of lay caregivers (N = 11) underwent recorded individual interviews. Interviews were analyzed following van Manen's approach to isolate thematic statements. Most caregivers were older (mean age = 71, SD = 9.6; range = 53 to 84 years) and female (n = 10). Study themes included: (a) Uncertainty: The Slippery Slope, (b) The Sense of Loneliness, (c) Complexities of Frustration, and (d) On the Other Side of the Spectrum. Findings show these caregivers are dealing with a dynamic range of feelings about their experiences. Opportunities exist for health care professionals to discuss such feelings and refer caregivers to supportive services, including palliative care. [Journal of Gerontological Nursing, 46(8), 17-27.]., (Copyright 2020, SLACK Incorporated.)

Most dementia care is provided at home by family members. This caregiving places an additional burden on the family members, which can negatively impact their physical and psychological well-being. The caregivers' burden can also contribute to behavioral problems in the care-recipients. The purpose of this study was to examine the mediating/moderating effects of positive thinking (PT) on the relationship between caregivers' burden (embarrassment/anger, patient's dependency, and self-criticism) and their care-recipients' behavioral problems (memory, depression, and disruption) in a sample of 100 dementia caregivers. Results indicated that caregivers' embarrassment, self-criticism, and perception of patient dependency predicts depression in care-recipients, and these relationships are moderated by PT. Results also indicated that as PT increases, the relationship between embarrassment and disruption goes down as well as does the relationship between self-criticism and depression. The study provided direction for the development of a PT training intervention to help caregivers to combat their burden.

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset ( N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support., (© The Author(s) 2019. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers., Methods: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers., Results: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers., Conclusions: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care., (© The Author(s) 2019. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Introduction: Caring for a spouse with dementia can be extremely challenging. Many caregivers experience profound declines in well-being; however, others remain healthy., Objective: This study determined whether the personal pronouns used in interactions between persons with dementia (PWDs) and their spousal caregivers were associated with caregiver well-being., Methods: Fifty-eight PWDs and their spousal caregivers engaged in a 10-min conversation about an area of disagreement in a laboratory setting. Verbatim transcripts of the conversation were coded using text analysis software, and caregivers and PWDs each received scores for (a) I-pronouns, (b) you-pronouns, and (c) we-pronouns. Caregivers' well-being was assessed using a composite measure of depression, anxiety, burden, and strain., Results: Results revealed that less use of we-pronouns by caregivers and PWDs and greater use of I-pronouns by PWDs were -associated with lower caregiver well-being., Conclusions: These findings indicate that less use of pronouns that refer to the couple (we-pronouns used by either partner) and greater use of pronouns that refer to the PWD (I-pronouns used by the PWD) are indicative of caregivers at heightened risk for lower well-being., (© 2020 S. Karger AG, Basel.)

Background: The number of demented patients has increased significantly in recent years. The many challenges that dementia causes increase the stress of their caregivers and lead to shortening the time to institutionalization compared to the general population. A psychoeducational program for these accompanying persons was set up in Brussels. This type of program resulted in a 557-day delay in institutionalization in New York City. The objective of our study was to check whether our program also has such an impact, but also to see its potential effect on the psychobehavioral disorders of patients and the burden of caregivers., Methods: We recruited two groups without randomization: psychoeducated caregivers and caregivers interested in the program and contacted regularly (every 6 months) without having participated. They were all contacted by telephone and responded to the NCPI and Zarit Burden Scale (ZBS) questionnaires., Results: We could not demonstrate any significant impact, either on the institutionalization delay (p = 0.960), on the frequency of psychobehavioral disorders in demented patients (p > 0.05), or on the burden of caregivers (p = 0.403). However, the survival rate among the demented patients with psychoeducated caregivers was significantly higher than that among the demented patients with nonpsychoeducated caregivers (p < 0.001)., Conclusions: Our small-sample, nonrandomized study did not reveal any differences in institutionalization delay, caregiver burden, or perception of psychobehavioral disorders related to our psychoeducational program. A new study should be carried out on the impact of psychoeducation on the survival of demented patients, in view of our preliminary analyses., (© 2020 S. Karger AG, Basel.)

Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver., Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review., Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords., Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients' behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver's age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship., Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources.

Background: Family carers are an important source of care for older people. Although several studies have reported that subjective caregiver burden is related to depressive symptoms there are no systematic reviews quantifying this association., Objective: To establish the extent to which subjective caregiver burden is associated with depressive symptoms and whether this association would vary by study or care characteristics., Methods: We searched major databases such as PubMed, CINAHL, PsycINFO, Scopus and ISI Proceedings up to March 2018, and conducted a meta-analysis of included studies. Summary estimates of the association were obtained using a random-effects model to improve generalisation of findings., Results: After screening of 4,688 articles, 55 studies were included providing a total of 56 independent comparisons with a total of 9,847 carers from data across 20 countries. There was a large, positive association between subjective caregiver burden and depressive symptoms ([Formula: see text] = 0.514; 95% CI = 0.486, 0.541), with very low heterogeneity amongst individual studies (I2 = 8.6%). Sensitivity analyses showed no differences between cross-sectional or repeated measures ([Formula: see text] = 0.521; 95% CI = 0.491, 0.550; 51 samples) and longitudinal studies ([Formula: see text] = 0.454; 95% CI = 0.398, 0.508; 6 samples). We found a higher effect size for those caring for people living with dementia compared to those caring for frail older people, and stroke survivors. Carer sex, age and kinship did not change the estimate of the effect., Conclusions: Subjective caregiver burden is a significant risk factor for depressive symptoms in carers of older people and may precipitate clinical depression. Those caring for people with dementia experience greater burden. There is a need for longitudinal evaluations examining the effects of potential mediators of the association of subjective burden and depressive symptoms. Future interventions should test whether minimizing subjective burden may modify the risk of developing depression in carers of older relatives., Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: Rafael del-Pino-Casado was co-author of three of the included studies together with Catalina López-Martínez in one of these studies.