Caregiver Burden Research Articles

Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): Immunological Features Underpinning Controversial Entities.

Pediatric acute-onset neuropsychiatric syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), represent an overlapping group of disorders which is characterized by acute-onset obsessive compulsive disorders, eating restriction, tics, cognitive and behavioral deterioration which typically follows a relapsing-remitting course but some patients have a primary or secondary persistent progress. This condition is likely caused by heterogeneous inflammatory mechanisms (autoantibodies, complement activation, pro-inflammatory cytokine production) involving the basal ganglia as evidenced by imaging studies (patients vs. controls), sleep studies that found movements and/or atonia during REM sleep, and neurological soft signs that go along with basal ganglia dysfunction. The condition causes significant psychiatric and behavioral symptoms, caregiver burden and sleep abnormalities. Autoantibodies resulting from molecular mimicry of infectious agents (namely group A Streptococcus) and neuronal autoantigens that map to the basal ganglia play also a subtle role. This narrative review aims to describe the key immunological features documented thus far and that likely play a role in the pathogenesis and clinical manifestations of this disorder.

The Impact of Caregiver Physical Activity on Caregiver Burden and Quality of Life

The Impact of Caregiver Physical Activity on Caregiver Burden and Quality of Life

Evaluating the Impact of Nurse-led Geriatric Homecare Interventions: A Systematic Review of Randomized Controlled Trials

Nurse-led interventions have gained prominence as a promising approach for geriatric care, yet the existing evidence base remains limited. This systematic review aimed to evaluate the impact of nurse-led home care interventions on health outcomes. Adhering to the PRISMA guidelines, we conducted a comprehensive search of PubMed, ScienceDirect, Scopus, ProQuest, and Embase databases from their inception until April 2024. A narrative synthesis was used. Following the screening of 901 studies derived across five electronic databases, nine trials were analyzed in this review. The interventions showed mixed results on quality of life, with significant improvements in some studies but not others. Physical health and performance generally improved, with fewer falls and better functional status in the intervention groups. Mental health outcomes were also mixed. Caregiver burden did not significantly change overall, but some aspects, such as isolation, improved. Hospitalization rates did not significantly differ between groups in most studies, but emergency department visits were lower in the intervention groups. Mortality rates were also similar between groups, but more patients in the intervention groups died at home. Despite the diversity in approaches, nurses played an active and comprehensive role in all programs. These findings highlight the adaptability and flexibility of nurse-led interventions. Further research is needed to refine these interventions, identify their most effective components, and understand how they can be tailored to meet the unique needs of older adults and their caregivers.

Caregiver burden after stroke: a 10-year follow-up study of Polish caregivers for stroke patients

BackgroundA long-term assessment of stroke outcomes from the perspectives of patients and their caregivers is important for optimising long-term post-stroke care. The extended effects of stroke caregiving, particularly caregiver burden beyond 5 years since stroke, remain to be determined. Hence, this study aimed to determine caregiver burden at 10 years after stroke, compare the burden severity at 10 years with its levels at 5 years and 6 months after stroke, and identify predictors of the burden severity at 10 years post-stroke.MethodsA longitudinal follow-up study including a group of first-ever stroke patients/informal continuous caregivers pairs was followed for 10 years and interviewed face-to face at their home setting.Caregiver burden was evaluated with the Caregiver Burden Scale. Potential predictors were examined using standardised measures and identified by applying the Classification and Regression Tree.ResultsA total of 40 caregiver/patient pairs participated in the study. At 10 years, 47.5% of the caregivers experienced a considerable burden. This was more than after 5 years (17.5%) and comparable to that after 6 months (37.5%), p < 0.003. Longer time spent caregiving, caregivers’ weaker sense of coherence, more severe stroke, and caregivers’ anxiety were the independent predictors of considerable burden 10 years after stroke.ConclusionsCaregivers’ burden in the late chronic post-stroke phase is a significant problem, as nearly half of the caregivers experience a substantial burden. This problem mainly concerns individuals who spend at least 7 h daily caregiving and have a lower Sense of Coherence.The long-term evaluation of stroke consequences reported by stroke patients and their caregivers can be an important source of information for healthcare professionals in order to optimise the care and support they provide at various stages of life after stroke.

Evaluating the combination of in-person and electronic social networking services for family caregivers of stroke survivors: A quasi-experimental analysis.

The effectiveness of health interventions delivered via a combination of in-person and electronic social networking services for caregivers of stroke survivors remains uncertain. This study evaluates the feasibility of implementing educational and peer support programs for these caregivers through such platforms. Quasi-experimental design. This study included 105 caregiver-survivor dyads, with 54 dyads allocated to the intervention group and the remaining 51 to the control group. The LINE intervention comprised a combination of in-person and electronic social networking services including stroke and rehabilitation education, problem-solving skills training, long-term care information support, and 24-h peer and professional support for caregivers. The outcomes were assessed at baseline, after 1 month, and after 3 months, and encompassed caregivers' care burden, depressive symptoms, perceived social support, and quality of life, as well as the rehabilitation adherence and depressive symptoms of stroke survivors. Generalized estimating equations were used to examine group differences. The data were collected between August 2021 and October 2022. The average age of the caregivers was 48.3 years. Caregivers in the intervention group reported reduced care burdens and enhanced perceptions of social support and quality of life as compared to those in the control group. Additionally, stroke survivors in the intervention group were less likely to exhibit high-risk depressive symptoms. Delivering a stroke caregiver support intervention via in-person and electronic social networking services, such as LINE, effectively reduced the care burden for caregivers of stroke survivors. Additionally, it enhanced caregivers' perceived social support and quality of life. This study demonstrated that caregiver education and peer support programs administered through a combination of in-person and electronic social networking services can serve as an effective support system for the psychosocial health of stroke caregivers. These findings support the integration of such interventions into standard clinical practice by healthcare providers or governmental bodies.

Caregiver burden in informal spousal caregivers predicts psychological and physical health in patients following coronary artery bypass graft surgery: a longitudinal clinical cohort study.

Previous research has shown that informal caregiver burden can have deleterious effects on patient recovery; however, this relationship has yet to be investigated in patients undergoing coronary artery bypass graft (CABG) surgery. This study aimed to examine the impact of the change of caregiver burden from pre- to post-surgery on patients' mental and physical health after CABG surgery. Ninety patient-caregiver dyads were assessed one month before the surgery, two months and one year after the surgery. Caregivers completed the Oberst Burden Scale to measure caregiver burden. Patients completed the Beck Depression Inventory to measure depressive symptoms, a subscale of the Hospital Anxiety and Depression Scale to measure anxiety symptoms, the Short Form-12 health assessment to measure health-related quality of life, and the Coronary Revascularisation Outcomes Questionnaire to measure surgery symptoms. Hierarchical linear regression analyses were conducted to explore the association between change in caregiver burden and post-surgery patient outcomes. A greater increase in caregiver burden from pre- to two-months post-surgery significantly predicted higher patients' depressive symptoms (β = 0.179, p = 0.010), anxiety symptoms (β = 0.114, p = 0.017), reported post-surgery symptoms (β = 0.335, p = 0.008) and reduced physical health-related quality of life (β = -0.358, p = 0.003), after controlling for a wide range of covariates. These findings were not replicated at a one-year follow-up. These results provide insights into the impact of caregiver burden on patient distress following CABG surgery, supporting the idea of psychological support interventions for caregivers to increase patients' short-term recovery outcomes.

Feasibility and potential effects of a dyadic coping intervention for patients with spinal cord injury and their spouses: a study protocol for a pilot randomised controlled trial

IntroductionIt remains difficult for patients with spinal cord injury (SCI) to fully recover their sensory and motor functions; thus, they must rely on the assistance of caregivers to complete activities...

The impact of religious spiritual care training on the spiritual health and care burden of elderly family caregivers during the COVID-19 pandemic: a field trial study

BackgroundFamily caregiving is associated with many physical and psychological problems for caregivers, but the effect of spiritual support on reducing their issues during a crisis is also the subject of research. The study aims to examine the impact of religious spiritual care training on the spiritual health and care burdens of elderly family caregivers during the COVID-19 pandemic.MethodsThe randomized controlled field trial involved 80 Iranian family caregivers in Bushehr City, who were selected by convenience sampling based on the inclusion criteria and divided into experimental (40 people) and control (40 people) groups by simple random sampling in 2021 and 2022. Data collection was conducted using spiritual health and care burden questionnaires using the Porsline software. The virtual intervention included spiritual and religious education. Four virtual sessions were held offline over two weeks. The first session was to get to know the participants and explain the purpose, The second session focused on the burden of care, the third on empowerment, and the fourth on mental health and related issues. In the control group, daily life continued as usual during the study.ResultsMean changes in existential health (3.40 ± 6.25) and total spiritual health (5.05 ± 11.12) increased in the intervention group and decreased in the control group. There were statistically significant differences between the two groups for existential health (t = 3.78, p = 0.001) and spiritual health (t = 3.13, p = 0.002). Cohen’s d-effect sizes for spiritual health and caregiving burden were 0.415 and 0.366, respectively. There was no statistically significant difference in mean changes in religious health (p = 0.067) or caregiving burden (p = 0.638) between the two intervention and control groups.ConclusionGiven that the religious-spiritual intervention had a positive effect on existential health and no impact on religious health or care burden, it is recommended that comprehensive planning be undertaken to improve the spiritual health of family caregivers to enable them to better cope with critical situations such as a COVID-19 pandemic.Trial registrationIRCT code number IRCT20150529022466N16 and trial ID number 48,021. (Registration Date2020/06/28)

The role of psychoeducation and yoga in reducing the burden of family caregivers of people with Alzheimer’s disease

The role of psychoeducation and yoga in reducing the burden of family caregivers of people with Alzheimer’s disease

Can Long-Term Care Insurance Change Eldercare Patterns? Evidence from China

ABSTRACT Long-term Care Insurance (LTCI), providing care services and economic compensation to older adults with activity limitations, plays a crucial role in addressing the care needs of older adults and easing the burden on family caregivers. This article is based on the 2011–2018 China Health and Retirement Longitudinal Study (CHARLS) and uses China’s LTCI pilot program as a quasi-experiment to examine the impact of LTCI on older adults’ care patterns in China. It employs a staggered difference-in-differences (staggered DID) methodology to model the economic support, living arrangements and care, and spiritual comfort provided to older adults. Results indicate that LTCI significantly enhances the economic and emotional independence of older adults. On the one hand, LTCI effectively decreases the economic and emotional dependence of older adults on their children. On the other hand, LTCI raises the likelihood that older adults rely on social institutions and personnel for care. Additionally, LTCI is associated with achieving higher life satisfaction. Interestingly, the impact of LTCI varies significantly across sub-samples of different types of older adults and different policy regulations. Overall, findings indicate that LTCI shifts older adults’ care patterns from family to socialized care, thereby reducing children’s caregiving burden.

Determinants of Depression in Caregivers of Geriatric Patients in Jeddah, Saudi Arabia: A Cross-Sectional Study.

Background and Objectives: Caregiving for geriatric patients is essential for ensuring the well-being and quality of life of older adults. Family caregivers play a crucial role, but they often face a significant burden that can lead to adverse mental health outcomes, including depression. This study aimed to estimate the prevalence of depression among caregivers of geriatric patients in Jeddah, Saudi Arabia, and to analyze its association with caregiver burden and various socio-demographic and caregiving parameters. Methods: A cross-sectional study was conducted in Jeddah, Saudi Arabia, between January and March 2024. Adult caregivers of geriatric patients were recruited through various social media platforms. Data were collected via an electronic questionnaire that included demographic information, caregiving parameters, the Patient Health Questionnaire-9 (PHQ-9) for depression screening, and the Zarit Burden Interview (ZBI-12) for caregiver burden assessment. Data were analyzed using descriptive statistics, chi-square tests, and multivariate logistic regression. Results: Of the 269 participants, the average age was 32 years, and the gender distribution was nearly balanced. The prevalence of depression (PHQ-9 score ≥ 10) among caregivers was 45.4% (95% CI: 39.3, 51.5%). Significant factors associated with higher depression scores included younger age, female gender, single status, being a student, low income, and caregiving burden. In the multivariate analysis, female gender (OR 2.50, 95% CI 1.30-4.80) and caregiving burden (mild-to-moderate burden: OR 6.18, 95% CI 2.94-13.00; high burden: OR 22.75, 95% CI 8.75-59.13) were independent predictors of depression. Conclusions: The study highlights the high prevalence of depression among caregivers of geriatric patients in Jeddah and underscores the significant impact of caregiving burden on mental health. These findings emphasize the need for targeted interventions, such as mental health support, respite care programs, and culturally sensitive educational training, to mitigate caregiver burden and enhance the well-being of caregivers.

Caregiver burden and eating-related guilt during dysphagia rehabilitation: A descriptive cross-sectional time series study.

Caregivers of patients with chronic dysphasia experience stress and guilt regarding their eating behaviors. Dysphagia rehabilitation, including minimal oral intake with tube feeding, may be vital for caregivers. This study investigated the effects of dysphagia rehabilitation on caregiver well-being and attitudes toward eating assistance. This cross-sectional questionnaire study was conducted at two dental university hospitals on caregivers of homebound patients with dysphagia undergoing rehabilitation. Caregivers' experiences, with an emphasis on guilt and psychological status, were assessed using the Apathy Scale and Patient Health Questionnaire-5 Depression Scale. Patients were evaluated at the time of the survey and rehabilitation commencement using the Barthel Index and Functional Oral Intake Scale (FOIS). Changes in FOIS scores and caregiver guilt were assessed using the Wilcoxon signed rank test and McNemar test, respectively. The impact of oral intake changes on caregiving motivation was assessed using the Fisher exact test. Between August 2019 and January 2021, 55 of 100 targeted caregivers responded (median age=64.5 years). A significant difference in FOIS scores was found (median rehabilitation duration=9.7 months). Despite 25 pneumonia cases, 65% of the caregivers continued to encourage oral intake. Guilt decreased from 48% during peak dysphagia to 22% at survey time (odds ratio=0.2, 95% CI=0.04-0.70; P < 0.01). No association was found between caregiving motivation and improved oral intake. Severe dysphagia impacted caregiver well-being, indicating preferences for patients' oral intake. To support caregivers, healthcare professionals should explore and integrate new multidisciplinary approaches into dysphagia rehabilitation strategies.

Enhancing Healthcare Management: Assessing User Acceptance and Usability of the 'SmartCG' Mobile Application.

In Thailand, increasing caregiving needs for senior citizens, particularly in low-income homes, may elevate the caregiver (CG) burden. This study assesses the user acceptance and usability of the 'SmartCG' mobile application in enhancing healthcare management. The app offers health evaluations, home visits, knowledge management, screening forms, and care plans. Using the Technology Acceptance Model, 402 caregivers from Mahasarakham province evaluated the app's usability on a 5-point Likert scale. Results showed a significant increase in acceptance scores after using SmartCG (11.49 ± 1.54 to 13.19 ± 2.74, p < 0.001). Users reported high satisfaction with its ease of use (mean = 4.10 ± 0.61) and found the knowledge-based menu (mean = 4.07 ± 0.63) and visiting/map menus (mean = 4.05 ± 0.63) user-friendly. This study provides empirical evidence that the SmartCG app effectively enhances healthcare management, emphasizing the importance of user-friendly interfaces in healthcare technology.

The effectiveness of case management and nursing counselling among caregivers of patients with dementia: A pilot study.

According to the data released by the Taiwan Ministry of Health and Welfare in 2021, in 2019, 235,000 patients sought medical treatment for dementia-related diseases at the National-Health-Insurance-participating hospitals and clinics for more than three outpatient visits or had been hospitalised, and the number had increased by 15,000 from the previous year (Ministry of Health and Welfare, 2021). This implies that families are affected, causing tremendous physical, psychological, and economic pressures and burdens on the caregivers and families of the patient. The estimated social cost of caring for dementia families increased from $1.3 trillion in 2019 to $2.8 trillion in 2030 (World Health Organisation, 2021). Thus, long-term care for the dementia population has become a critical issue in medical care and social services in Taiwan and worldwide. In 2017, Taiwan Ministry of Health and Welfare has been starting Dementia care policy with 10 years long-term care plan through set up dementia care centre. The purpose of this study is to investigate the effectiveness of dementia care centre for reducing the burden and improving the quality of life for caregivers of dementia patients. This pilot study adopts a quasi-experimental research design and uses purposive sampling to select in house informal caregivers of dementia patients who are part of a dementia collaborative care programme at a medical centre in the northern region and were willing to participate in this study. Upon enrolment in the study, subjects were given a pre-test, followed by a one-hour face-to-face nursing consultation and assessment after 2weeks. Subsequently, a telephone nursing consultation was conducted once a month for 3months. Two weeks after completing all counselling sessions, a post-test was administered to measure the caregiver burden with The Chinese version of the Caregiver Burden Inventory and the quality of life for caregivers with The 'Chinese Health Questionnaire CHQ-12'. After providing case management and nursing counselling, the total caregiver burden score significantly decreased from an average of 40.1 (SD=21.6) at the pre-test to an average of 38.6 (SD=21.4) at the post-test, reaching statistical significance (p<0.01). The results of this study showed that providing dementia caregivers with case management and nursing consultation services helpsimprove the overall caregiver burden (particularly emotional burden and physical burden) as well as the health questionnaire scores. However, the social burden and time burden did not improve after receiving case management and counselling among caregivers; instead, post-test scores of these aspects were significantly higher.

Clinical characteristics, longitudinal adaptive functioning, and association with electroencephalogram activity in PPP2R5D-related neurodevelopmental disorder.

Protein phosphatase 2 regulatory subunit B56δ related neurodevelopmental disorder (PPP2R5D-related NDD) is largely caused by de novo heterozygous missense PPP2R5D variants. We report medical characteristics, longitudinal adaptive functioning, and in-person neurological, motor, cognitive, and electroencephalogram (EEG) activity for PPP2R5D-related NDD. Forty-two individuals (median age 6 years, range = 0.8-25.3) with pathogenic/likely pathogenic PPP2R5D variants were assessed, and almost all variants were missense (97.6%) and de novo (85.7%). Common clinical symptoms were developmental delay, hypotonia, macrocephaly, seizures, autism, behavioral challenges, and sleep problems. The mean Gross motor functional measure-66 was 60.2 ± 17.3% and the mean Revised upper limb module score was 25.9 ± 8.8. The Vineland-3 adaptive behavior composite score (VABS-3 ABC) at baseline was low (M = 61.7 ± 16.8). VABS-3 growth scale value scores increased from baseline in all subdomains (range = 0.6-5.9) after a mean follow-up of 1.3 ± 0.3 years. EEG beta and gamma power were negatively correlated with VABS-3 score; p < 0.05. Individuals had a mean Quality-of-life inventory-disability score of 74.7 ± 11.4. Twenty caregivers (80%) had a risk of burnout based on the Caregiver burden inventory. Overall, the most common clinical manifestations of PPP2R5D-related NDD were impaired cognitive, adaptive function, and motor skills; and EEG activity was associated with adaptive functioning. This clinical characterization describes the natural history in preparation for clinical trials.

The assessment of care burden and influencing factors on family caregivers for cancer patients.

The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities. This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye. This cross-sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio-demographic characteristics. The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles. Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost-effective holistic care. The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case-control studies, cross-sectional studies) in Epidemiology (STROBE). Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs.

Exploring factors affecting the acceptance of fall detection technology among older adults and their families: a content analysis

BackgroundThis study conducted in-depth interviews to explore the factors that influence the adoption of fall detection technology among older adults and their families, providing a valuable evaluation framework for healthcare providers in the field of fall detection, with the ultimate goal of assisting older adults immediately and effectively when falls occur.MethodsThe method employed a qualitative approach, utilizing semi-structured interviews with 30 older adults and 29 families, focusing on their perspectives and expectations of fall detection technology. Purposive sampling ensured representation from older adults with conditions such as Parkinson's, dementia, and stroke.ResultsThe results reveal key considerations influencing the adoption of fall-detection devices, including health factors, reliance on human care, personal comfort, awareness of market alternatives, attitude towards technology, financial concerns, and expectations for fall detection technology.ConclusionsThis study identifies seven key factors influencing the adoption of fall detection technology among older adults and their families. The conclusion highlights the need to address these factors to encourage adoption, advocating for user-centered, safe, and affordable technology. This research provides valuable insights for the development of fall detection technology, aiming to enhance the safety of older adults and reduce the caregiving burden.

The Association of Sociodemographic Factors and Utilization of Diabetes Technologies with Diabetes Management: An Investigation in Children and Adolescents with Type 1 Diabetes.

We aimed to investigate the relationship between sociodemographic and clinical characteristics, as well as the utilization of diabetes technologies, with diabetes management in individuals with type 1 diabetes (T1D). Our study included 134 cases diagnosed with T1D who were followed for at least 1 year with T1D. Of the cases, 67.2% were using insulin pens as their insulin regimen, while 37.8% were using insulin pumps. The rate of continuous glucose monitoring (CGM) usage was 29.9%. The rate of CGM usage was 5% in families with low income levels. Glycosylated hemoglobin A1c(HbA1c) level of children with working mothers was found to be higher compared to those with non-working mothers (median 9.2% vs. 8%; P = .009). Cases with 3 or more siblings had higher HbA1c levels compared to those with 2 or fewer siblings (median 8.7% vs. 8.1%; P = .044).The median HbA1c was 8.7% in cases using insulin pens and checking fingerstick blood glucose (SMBG); 8.3% in cases using insulin pumps and SMBG; 7.6% in cases using insulin pens with CGM, and 7.5% in cases using insulin pumps with CGM (P = .003). The utilization of insulin pumps with CGM in T1D cases exhibited lower HbA1clevels. Similarly, even the usage of insulin pens with CGM demonstrated improved diabetes management. Maternal employment and having a higher number of siblings may negatively affect diabetes management due to increased caregiver burden. We believe that personalized healthcare delivery tailored to the individual needs of T1D patients based on family and clinical characteristics could have positive effects on diabetes management.

Supporting caregivers of people with dementia: insights from Demensia KITA mobile application online content development

Dementia significantly impacts caregivers, particularly in low and middle-income countries where support is often inadequate. Given the gap in affordable and culturally relevant digital resources for Malaysian dementia caregivers, we developed "Demensia KITA," a mobile application (app) specifically tailored to their needs. This study utilized a theoretical framework proposed from existing literature and the "Model of Carer Stress and Burden". This paper discusses our app content development, highlighting key findings and challenges. To assess caregivers’ needs, the Nominal Group Technique (NGT) with five dementia caregivers was conducted, followed by a Focus Group Discussion (FGD) with eight medical professionals. Both sessions were conducted online via Google Meet. In the NGT, ideas were generated, organized, prioritized, reviewed, and refined by medical professionals in the FGD. Content relevant to addressing the complexities of dementia caregiving was then discussed. Topics were either adapted from established modules or newly developed from credible sources. Subsequently, these were organized into modules and themes, and subsequently underwent expert validation. From the NGT, three key domains emerged: Knowledge, Services, and Support. These were further organized into two modules: 'Patient Care for Caregivers' and 'Caregiver Wellbeing'. Within these, twelve sub-modules were identified, covering a range of topics including basic knowledge on dementia, patient care, nutritional management, oral and dental care, simple exercises, daily activity and memory rehabilitation, service directories, support groups, emotional and stress management, welfare assistance, and daily motivation. This framework was developed to address the specific needs of dementia caregivers in terms of psychoeducation, psychosocial and caregiving skills, incorporating expert opinions in the field. This study corroborates the feasibility of online methods for mobile health app content development and encourages similar research. Future studies should evaluate Demensia KITA's effectiveness in alleviating caregiver burden across all regions, assess users’ acceptance, and ensure it meets the evolving needs of Malaysian caregivers with regular updates.

Randomized Clinical Trial of ICECaP (Individualized Coordination and Empowerment for Care Partners of Persons with Dementia): Primary Mental Health and Burden Outcomes.

Efficacy of the Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP), an intervention that involves one-on-one individualized support from a dementia care coordinator for a dementia care partner, compared to an active control group. At least once monthly contact is made from a dementia care coordinator to the dementia care partner by telephone, video conferencing, email, or in-person support at clinical visits for the person with dementia. In this pilot randomized unblinded control trial of ICECaP, n=61 (n=90 randomized) care partners completed 12-months of the ICECaP intervention and n=69 (n=92 randomized) care partners received routine clinical support (controls) in an outpatient memory care clinic at an academic medical center, from which the participants were recruited (ClinicalTrials.gov: NCT04495686, funded by Department of Defense and Virginia Department for Aging and Rehabilitative Services). Early termination endpoints (death and higher level of care) and trial drop out were comparable across groups. Primary efficacy outcomes were evaluated by comparing changes in care partner mental health, burden, and quality of life from baseline to 12-months between ICECaP and controls. Linear-mixed ANCOVA revealed no significant group differences in longitudinal changes on measures of caregiving burden, care partner depression, anxiety, quality of life, or reactions to the behavioral symptoms of the person with dementia. Hypothesized reasons for lack of initial efficacy on primary 12-month outcomes are discussed.