Informal Caregiver Burden Research Articles

The relationship between caregiver burden and anger level of informal caregivers of patients in palliative care centre.

Palliative care is a comprehensive service that includes not only the patient but also the caregivers. This research was carried out to determine the relationship and factors affecting the burden and anger level of informal caregivers of patients. This descriptive study was conducted with caregivers (n=206) of patients hospitalised in two Palliative Care Centers in Ordu, Türkiye. In the research, it was determined that there was a statistically significant relationship between the burden of caregivers and the trait anger level, anger-in, anger-out sub-dimension scores of The Trait Anger and Anger Expression Scale, but a negative relationship was found between the burden of caregivers and anger control sub-dimension scores of The Trait Anger and Anger Expression Scale. The burden of a caregiving process has a positive impact on the trait anger level, anger-in, anger-out but has a negative impact on anger control. Nurses should monitor a caregiver's level of anger and burden and develop programmes required to decrease the caregiver's anger level and burden.

HUMANISTIC BURDEN OF INFORMAL CAREGIVERS OF CHILDREN AND YOUNG ADULTS WITH NEWLY DIAGNOSED TYPE 1 DIABETES (T1D): A SYSTEMATIC LITERATURE REVIEW (SLR)

OBJECTIVES: To describe the humanistic and economic burden of informal caregivers of children, adolescents, and young adults newly diagnosed with T1D.
 METHODS: An SLR was conducted in MEDLINE®, Embase®, and PsycInfo® (search date: December 7, 2021) to identify clinical and observational studies assessing the humanistic burden experienced by informal caregivers (i.e., persons who provide unpaid care) of children, adolescents, and young adults aged 6 to 21 who were diagnosed with T1D within three months.
 RESULTS: Four prospective cohort studies and one randomized controlled trial (RCT) were included. Caregiver sample size ranged from 59 to 191. Duration of T1D was 2 to 6 weeks. Among parents of children aged ≤11 years, mothers had a moderate posttraumatic stress disorder symptom severity (mean score: 11.9; standard deviation [SD]: 7.4), while fathers experienced mild severity (8.4; SD: 6.2; p < 0.001; Posttraumatic Diagnostic Scale). Mothers experienced clinically significant symptoms (defined as score >5) of anxiety (mean score: 7.5), social dysfunction (7.5), and somatic symptoms (5.1; General Health Questionnaire [GHQ]-28). Fathers showed clinically significant anxiety (5.5) and social dysfunction (7.7; GHQ-28) only. Results from the RCT indicated a mean hypoglycemia fear score of 46.6 out of 108 at diagnosis and 34.9 after 14 weeks, with a higher score indicating greater fear (Hypoglycemia Fear Survey-Parents). Parents of children aged >11 years experienced clinically significant social dysfunction (mean score for mothers/fathers: 7.6/7.1) and anxiety (mothers: 5.4; GHQ-28). Parents experienced moderate to extreme diabetes-specific stress (defined as score ≥5; mean score: 6.3; SD: 1.9) at diagnosis, and no to moderate stress (4.5; SD: 2.1) at 3 months. None of the included studies reported on economic burden.
 CONCLUSIONS: This SLR highlights parents of children and young adults with newly diagnosed T1D experience caregiver burden, with a greater burden among mothers than fathers. Due to the paucity of evidence, further studies are warranted to better understand the humanistic burden among this group of informal caregivers.

The Impact of Alzheimer’s Disease on Care Partners (P14-6.010)

<h3>Objective:</h3> To provide an overview of the care partner burden of Alzheimer’s disease (AD) and explore how burden increases with disease progression using a systematic literature review. <h3>Background:</h3> The burden of informal caregiving of people with AD is often overlooked. <h3>Design/Methods:</h3> A protocol was developed before searches in PubMed, Embase, PsycINFO, and Cochrane Library were run in October 2021 via the Silvi.ai-platform. Eligible studies were published in English and provided data from 2010 or later. Two reviewers screened titles and abstracts independently. A single reviewer conducted full-text analysis and data extraction, and a PRISMA overview was generated. Studies were quality-ranked using the Oxford quality grading scale. <h3>Results:</h3> Of 911 hits, 61 studies were relevant for data extraction. Most care partners were female. The majority of studies reported moderate-to-severe impact on care partners’ life (Zarit Burden Interview [ZBI] and the Maslach Burnout Inventory) and overall quality of life (QoL; WHO QoL Questionnaire); care partners exhibited higher levels of stress, depression, and anxiety versus controls. Females had a significantly higher care partner burden versus males (Caregiver Burden Inventory [CBI]). The higher the number, frequency, and severity of symptoms affecting patients, the more intense care partner distress (Neuropsychiatric Inventory Distress Scale). Care partners of people with severe dementia due to AD reported the greatest care partner burden (short version ZBI and CBI). There was a clear correlation between hours of care giving and Activities of Daily Living Questionnaire score. The higher the score, the more hours of caregiving. <h3>Conclusions:</h3> Caregiving to a person with AD is associated with emotional stress, depression, anxiety, low overall QoL, and impacted physical health. Female care partners are disproportionately affected versus males. The more severe the AD, the larger the burden. More research is required to illuminate the true health consequences for care partners of people with AD. <b>Disclosure:</b> Mrs. Hviid Hahn-Pedersen has stock in Novo Nordisk. Mr. Solís-Tarazona has received personal compensation for serving as an employee of Novo Nordisk A/S. The institution of Prof. Holm-Larsen has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Novo Nordisk.

Management of Informal Caregivers’ Burden in a Selected Region of the Czech Republic

Objective: Care of handicapped or elderly by the family members in the home environment brings not only many positives for the care recipients, but can also impose a significant burden on the caregiver. The goal of the study was to assess the caregiver burden, burnout syndrome and the effect of caregivers’ sociodemographic characteristics. Design: Cross-sectional study. Participants: The sample consisted of 168 caregivers who took care of disabled children or seniors. Methods: Zarit Burden Interview identifying the subjective burden of informal caregivers, and Maslach Burnout Inventory assessing the burnout syndrome were used. Results: A higher level of caregiver burden and the development of burnout syndrome occurring most frequently in the dimensions of Emotional Exhaustion and Personal Accomplishment was observed. The caregiver burden was found to be lower in men, in caregivers living alone, and in the respondents from higher income households; it increased with the weekly amount of care. Conclusions: The results proof the demanding nature of informal care. A longitudinal study could illuminate the temporal changes in the family dynamics.

The Effect of Benson Relaxation Technique on Caregiver Burden in the Informal Caregivers of Cancer Patients: A Randomized Controlled Trial

Background: Informal caregivers provide long-term support and care for cancer patients and they do not receive enough support from the family and the health system; as a result, they suffer from a lot of caregiver burden. Objectives: In the current study, we investigated the effect of the Benson relaxation technique on caregiver burden in informal caregivers of cancer patients. Methods: This randomized clinical trial with a control group was conducted on 113 caregivers, who scored X ≥ 48 from the Novak and Guest caregiver burden inventory. They were randomly divided into intervention group (n = 57) and control group (n = 56). The intervention group performed Benson relaxation twice a day for 20 minutes each time for 1 month. The control group did not receive any intervention. Then, after 1 month, Novak and Guest caregiver burden questionnaire was completed by both groups. The conceptual framework for this study was based on the general system theory modified by Ludwig Von Bertalanffy. Results: The mean score of the total caregiver burden before the intervention in the intervention and control groups was 71.16 ± 14.42 and 74.47 ± 15.16, respectively. After the intervention, the mean score of the total care burden in the intervention and control groups changed to 57.21 ± 14.66 and 75.47 ± 13.94, respectively. Data analysis shows a significant decrease in the intervention group (P = 0.000). Conclusions: The results showed that the Benson relaxation technique as a cheap and non-pharmacological method effectively reduces the caregiver burden in informal caregivers of cancer patients.

Effects of Early- and Late-Onset Alzheimer's Disease on Caregiver Burden

Introduction: Alzheimer’s disease (AD) is the most common cause of dementia. Early-onset AD (EOAD) occurs when it affects someone under the age of 65, and many people diagnosed are in their 40s and 50s. Many studies in the literature examine the caregiver burden of people with late-onset AH (LOAD), and it is unclear whether the experience of caregiving differs according to the age of onset of AH. Aim: This study aimed to determine whether there is a difference in the caregiver burden of primary informal caregivers of community-dwelling patients with AD according to the age of onset of the disease. Methods: A comparative descriptive study design was used in this study. The sample comprised 109 people with AD (34 EOAD and 75 LOAD) and their caregivers. Sociodemographic characteristic questionnaires, the Caregiver Burden Inventory, the Mini-Mental State Examination, the Neuropsychiatric Inventory, Barthel’s Activities of Daily Living, and the Clinical Dementia Rating Scale were used. Descriptive statistics, t-tests, and chi-square were used to describe and analyze the data. Results: Caregivers of patients with EOAD had significantly higher scores for social burden than caregivers of patients with LOAD (t=3.156, p=0.002). Furthermore, caregivers of patients with EOAD experienced more developmental, physical, and total burden than caregivers of patients with LOAD. However, these differences were not statistically significant (p&amp;gt;0.05). Conclusion: Considering that there will be differences in the caregiver burden of AH according to the age of onset, it is necessary to offer services tailored to the needs of AD caregivers.

Risk Factors with the Greatest Impact on Caregiver Burden in Informal Homecare Settings in Austria: A Quantitative Secondary Data Analysis

The aim of this study was to reveal the factors that most contribute to caregiver burden in informal adult caregivers, caring for adult care recipients in homecare settings in Austria. A quantitative supplementary secondary analysis based on the dataset of the Austrian Caregiver Study was conducted between February 2021 and March 2022. Based on the dataset of the primary study, which was deemed representative for caregivers in homecare context, 2532 caregivers (92.3% of the cases) were selected for data analysis. Theoretically relevant regressors on caregiver burden, which were available in the dataset, were identified based on an adaptation of Pearlin’s framework of caregiver stress. Data analysis was conducted using descriptive statistics followed by multifactorial analysis of variance and a logistic regression model. Multiple variables, related to (1) sociodemographic characteristics of both care recipients and caregivers; (2) caregiving situation; (3) family-, work-, and finance-related characteristics; (4) availing social support and services, emerged as statistically significant owing to their influence on caregiver burden. Further data analysis illustrated that the five variables with the greatest impact on caregiver burden were as follows: (1) caregiver’s health status, (2) care recipient’s behavioral problems, (3) frequency of provision of direct care, (4) time spent on care, and (5) care dependency level.

Views of Older Adults on Using Support to Prevent Overload in Informal Caregivers: Results of a Story Completion Study

Older care recipients living at home increasingly rely on support from informal caregivers. As informal caregivers often combine these caregiving tasks with other tasks, such as paid work, they are at risk of becoming overloaded. To decrease informal caregiver burden, different forms of support are available that also affect older care recipients’ lives, such as respite care, technology, or home care. The aim of this qualitative study was to obtain more insight into the perceptions, potential concerns and preferences of older informal care recipients about the use of support to relieve informal caregivers. We performed a story completion writing task among 23 informal care recipients aged 65 years or older, using hypothetical situations to let them reflect on different caregiver relief support options. The task was followed-up by a story-mediated interview. We used thematic analysis to inductively analyze story completions and interviews. We found that older informal care recipients were often willing to use support to relieve their caregivers, to ensure their wellbeing. However, they were also concerned about how the use of such support may conflict with their interests, preferences and values (e.g. respect for their autonomy, privacy, having a trusting relationship with a caretaker, paying attention to human aspects in care). Older adults were most hesitant to use adult day care facilities and technological support options. While these areas of tensions cannot always be completely resolved, it is important to jointly identify and discuss these, and work towards solutions to balance the respective interests, values and needs of older adults and caregivers. Health and social care professionals and older adults’ personal networks may help in overcoming hesitation to use support.

Relationship between Burden, Quality of Life and Difficulties of Informal Primary Caregivers in the Context of the COVID-19 Pandemic: Analysis of the Contributions of Public Policies

The study aimed to characterize and understand the difficulties experienced by informal caregivers from a bio-psychosocial and environmental perspective, taking into account the socio-demographic and health characteristics of the informal caregiver and the person cared for, quality of life, perceived burden, social support, and the impact of the COVID-19 pandemic on the informal caregiver and the person cared for. The participants were 371 informal primary caregivers, 80.9% female, aged between 25 and 85 years, mean 53.17 (SD = 11.45) years. Only 16.4% of the informal caregivers benefited from monitoring and training for informal caregiver skills; 34.8% received information on the rights of the person being cared for; 7.8% received advice or guidance on the rights and duties of the informal caregiver; 11.9% of the caregivers benefited from psychological support; and 5.7% participated in self-help groups. A convenience sample was used, and data were collected via an online questionnaire. The main findings show that the major difficulties experienced by caregivers are related to social constraints, the demands of caring, and the reactions of the person cared for. The results reveal that the burden of the main informal caregivers is explained by the level of education, quality of life, level of dependence of the person cared for, level of difficulties, and social support. The COVID-19 pandemic impacted caregiving by increasing the perceived difficulty of accessing support services, such as consultations, services, and support; causing distress feelings in the caregiver, such as, anxiety and worry; increasing the needs and symptoms of the person cared for; and increasing the degree of isolation, for both, the informal caregiver and the person cared for.

Non-pharmacological interventions on anxiety and depression in lung cancer patients' informal caregivers: A systematic review and meta-analysis.

Lung cancer is one of the common cancers and the leading cause of death. Tremendous caregiving burden of informal caregivers of lung cancer causes psychological disorders, such as anxiety and depression. Interventions for informal caregivers of patients with lung cancer to improve their psychological health, which ultimately leads to patients' positive health outcomes, are crucial. A systematic review and meta-analysis was conducted to: 1) evaluate the effect of non-pharmacological interventions on the outcomes of depression and anxiety for lung cancer patients' informal caregivers; and 2) compare the effects of interventions with differing characteristics (i.e. intervention types, mode of contact, and group versus individual delivery). Four databases were searched to identify relevant studies. Inclusion criteria for the articles were peer-reviewed non-pharmacological intervention studies on depression and anxiety in lung cancer patients' informal caregivers published between January 2010 and April 2022. Systematic review procedures were followed. Data analysis of related studies was conducted using the Review Manager Version 5.4 software. Intervention effect sizes and studies' heterogeneity were calculated. Eight studies from our search were eligible for inclusion. Regarding total effect for the caregivers' levels of anxiety and depression, results revealed evidence for significant moderate effects of intervention on anxiety (SMD -0.44; 95% CI, -0.67, -0.21; p = 0.0002) and depression (SMD -0.46; 95% CI, -0.74, -0.18; p = 0.001). Subgroup analyses for both anxiety and depression of informal caregivers revealed moderate to high significant effects for specific intervention types (cognitive behavioral and mindfulness combined with psycho-education interventions), mode of contact (telephone-based interventions), and group versus individual delivery. This review provides evidence that cognitive behavioral and mindfulness-based, telephone-based, individual or group-based interventions were effective for informal caregivers of lung cancer patients. Further research is needed to develop the most effective intervention contents and delivery methods across informal caregivers with larger sample size in randomized controlled trials.

The Relationship Between Health Anxiety and Caregiver Burden in Informal Caregivers of Patients with COVID-19

Background: Irrational health anxiety increases due to insufficient information about COVID-19 and misinterpretation of allergy symptoms in favor of COVID-19. The disease increases the caregiver burden in informal caregivers and, subsequently, causes physical and mental disorders for them and negatively affects the provision of care for patients. Objectives: This study aimed to examine the relationship between health anxiety and caregiver burden in informal caregivers of patients with COVID-19. Methods: In this cross-sectional and correlational study, the convenient sampling method was adopted to select 340 informal caregivers of patients with COVID-19 who were discharged during the last three weeks of hospitalization in Vasei Hospital of Sabzevar City, Iran, in 2021. To collect the required data, the online links of the demographic information questionnaire, Salkoviskis's short health anxiety inventory (SHAI), and Novak and Guest's Caregiver Burden Inventory (CBI) were sent to the subjects through messengers. The data were analyzed using SPSS 22 as well as descriptive and analytical statistics. Results: According to the results, the mean caregiver burden score in informal caregivers of patients with COVID-19 was 69.72 ± 14.91, and the mean health anxiety score was 16.22 ± 8.24. Pearson's test results were indicative of a significant relationship between caregiver burden and health anxiety (P &lt; 0.001). Conclusions: Since a significant relationship was found between health anxiety and caregiver burden in informal caregivers of patients with COVID-19 in this study, it was argued that the health of informal caregivers was an important health issue certainly deserving serious attention of the health service providers.

The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia

Caregiver burden is a serious global issue associated with the growing number of older adult patients with Alzheimer's disease (AD). AD patients become more dependent on their caregivers and require assistance with basic daily life activities. This study aims to measure the caregiver burden of informal caregivers of AD patients and to determine their characteristics. In addition, it intends to understand caregiver coping techniques and assess their medication knowledge. This was a cross-sectional study including 148 informal caregivers mainly recruited by the Saudi Alzheimer's Disease Association (SADA). A four-part study questionnaire was used for data collection in the Arabic Language and included the following: socio-demographic characteristics of AD patients and their caregivers, the 12-item version of the Zarit Burden Interview (ZBI), and adapted questions on coping techniques and medication knowledge. A total of 148 caregivers (62% were female) participated in this study, and 79.06% were between 30 and 60 years old. The ZBI average score was 27, indicating a moderate to high burden. Caregivers reported their need for services to improve their quality of life. The medication knowledge was insufficient in most aspects except that more than half were aware of medications' side effects. Our study revealed that the average burden among informal caregivers of AD patients was moderate-high.

Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases. Phase 1 involved a cross-sectional study design, with a convenience sample of 61 caregivers of patients on maintenance HD for at least 3 months. All caregivers in the study completed the Arabic version of the Zarit Burden Interview to identify caregiver burden. Phase 2 of the study involved a qualitative descriptive design involving semi-structured interviews with nine caregivers. (3) Results: Study findings indicate that caregivers did not experience severe burden. Being older, a female caregiver and having comorbidities was positively associated with increased levels of caregiver burden. In the qualitative phase of the study, a number of important factors emerged that may contribute to a reduction in caregiver burden, including social support, cultural acceptance, and religious influences. (4) Conclusion and impact: CB was found to be low when a comparison was made with other studies using similar populations. Understanding the factors that influence caregiver burden will contribute to the accurate assessment of caregiver burden and help reduce burden in informal caregivers, patients with renal failure, and others with chronic illnesses worldwide.

Involvement and burden of informal caregivers of patients with mental illness: the mediating role of affiliated stigma

BackgroundThe fear and lack of understanding of mental illness can lead to stigma. The stigma of mental illness affects not only individuals who suffer from it, but also the caregivers. Stigma among caregivers can lead to delay in seeking care, poor adherence to treatment and a high risk of relapse. Caregivers of patients with mental illness are at an increased risk of distress due to the burden to stigma and caregiving burden. An increase in caregivers’ burden can lead to a reduction in caregivers’ involvement. There is a relationship between caregivers’ involvement, burden, and affiliated stigma. The present study examined the mediating role of affiliated stigma in the relationship between caregivers’ burden and involvement among informal caregivers of hospital-admitted patients with mental illness in Uganda.MethodsA cross-sectional study was conducted among 428 informal caregivers (mean age: 39.6 years [SD±14.6]; females = 62.1%). Information was collected regarding sociodemographic characteristics, affiliated stigma, and the involvement and burden of informal caregivers. ResultsThe findings indicate that affiliated stigma serves as a full mediator between the caregiver’s roles and involvement (β=15.97, p<0.001). Being female increased the caregivers’ burden of caregiving (β= -0.23, p<0.001).ConclusionThe findings in the present study suggest that intervention to address affiliated stigma among caregivers of patients with mental illness should be incorporated into mainstream mental health care to reduce the caregiving burden.

Social support, positive caregiving experience, and caregiver burden in informal caregivers of older adults with dementia.

Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment fundamentally affect not only a person living with dementia (PLwD), but also his/her informal caregiver(s), often resulting in a high caregiver burden. A number of variables, including the caregiver's sociodemographic characteristics, the clinical characteristics of PLwD, social support, and the caregiver's personal resources determine the caregiver's burden. The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods. The data were collected from September 2021 to February 2022 among 115 "PLwD-informal caregiver" dyads in the community settings in Slovakia. Measures included the Zarit Burden Interview (ZBI-12), the Oslo Social Support Scale (OSSS-3), the Positive Aspects of Caregiving Scale (PACS), and two questions on applying therapeutic communication methods-reminiscence and validation according to Naomi Feil. The Short IQCODE was used for assessing cognitive decline in PLwD. Pearson's and Spearman's correlations, t-tests, Chi-square, ANOVA, and linear multiple regression analyses were used to analyze the data (IBM SPSS 27). The mean age of informal caregivers was 54 ± 12.4 years (81.7% of women) and the mean caregiving duration was 4.8 ± 4.8 years. The mean age of PLwD was 80.5 ± 8.3 years (73.0% of women) and their Short IQCODE mean score was 4.1 ± 1.0. Lower caregiving burden was significantly associated with higher perceived social support (β = 0.33, p < 0.01), with higher positive caregiving experience (β = 0.33, p < 0.01), and higher caregiving intensity (β = 0.24, p < 0.05) among informal caregivers of PLwD. The associations between caregiver burden and applying two therapeutic communication methods were not significant. Implementing psycho-social and educational public health interventions focused on strengthening social support and maintaining positive perceptions of caregiving can help reduce the increased risk of caregiver burden in informal caregivers of older adults with dementia.

Burden in primary informal caregivers of children and adolescents with type 1 diabetes: Is it associated with depression, family dysfunction, and glycemic control?

The requirement of a chronic treatment and the increase in life expectancy in children with type 1 diabetes (T1D) leads to the possibility of caregiver burden. The aim of our study was to evaluate the burden in primary informal caregivers (PIC) of children and adolescents with type 1 diabetes and its association with depression, family dysfunction, and glycemic control. A retrospective study was performed in PIC of children and adolescents with T1D. Zarit Burden Interview Scale (ZBIS) was used to evaluate caregiver burden. Beck Depression Inventory (BDI-II) was used to evaluate depression in PIC, and the Family APGAR questionnaire was used to evaluate the family functionality. A total of 100 PIC of children and adolescents with T1D were included. Caregiver burden was found in 33% of caregivers. The total score of the Zarit scale was 41 (34-49); 19% had mild caregiver burden, and 14% had severe caregiver burden. According to the BDI-II, 82% had minimal depression, 11% mild depression, 5% moderate depression, and 2% severe depression. Family function was good in 69%; 13% had moderate dysfunction, and 18% had severe dysfunction. A positive correlation between caregiver burden and BDI-II score (r = 0.84; p = 0.001) and the grade of depression (r = 0.87; p = 0.001) was found. A logistic regression model showed that BDI-II score was associated with caregiver burden (OR 1.14; 95% CI 1.061-1.23; p = 0.001). A BDI-II cut off of 9 or more had a sensibility and specificity of 58% and 28%, respectively, for caregiver burden [AUC 0.751 (0.64-0.85); p = 0.001]. A BDI-II score ≥9 was a predictor of caregiver burden (OR 3.4; 95% CI 1.4-8.1; p = 0.008). Caregiver burden is present in more than one third of the PIC of patients with T1D and is associated with depression. A BDI-II score ≥9 is a predictor of caregiver burden which may be a point to take into account in the integral approach to the patient with T1D and his or her family nucleus.

Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing

Informal caregiving is becoming increasingly important in dementia care, but causes a considerable burden on caregivers which impacts their wellbeing. We aimed to develop and pilot test a digital monitoring tool (REsilience Monitor for INformal caregivers in Dementia [REMIND]) for wellbeing and resilience of informal caregivers to provide timely support and thereby prevent their overburden and eventually crises admissions of persons with dementia. A human-centered design method based on co-creation with informal caregivers and professionals was used to design REMIND. During co-creation meetings and in-between sprint sessions, a point of focus was formulated, and a prototype was created. Case manager-caregiver duos pilot-tested REMIND for 3months. Semi-structured interviews were conducted to determine usability and acceptability. Thematic analysis was applied to the transcripts. Informal caregivers and professionals with varying backgrounds participated in three co-creation meetings. Defined point of focus was to develop a tool that is able to provide insight into the experienced burden of informal caregivers. The REMIND prototype consisted of weekly questions about wellbeing and resilience for informal caregivers and a dashboard with answers for case managers. Eight case managers and 13 informal caregivers considered REMIND easy-to-use. Informal caregivers mentioned that REMIND stimulated self-reflection. Case managers appreciated the tool's ability to gain insight in the actual wellbeing of informal caregivers. The REMIND tool developed in co-creation with end-users potentially increases insight in actual wellbeing of informal caregivers for both caregivers and case managers. A long-term (controlled) follow-up study is needed to evaluate REMIND's impact on caregiver burden and crisis admissions.

Burden, satisfaction caregiving, and family relations in informal caregivers of older adults.

Family caregivers of older persons devote much of their time and energy to caring for another person. This exposure may burden caregivers and compromise their health and quality of life. To investigate the relationship between burden, sociodemographic, caregiving, and health characteristics of informal caregivers of dependent older adults. Cross-sectional and analytical study carried out in Palmas, Tocantins, Brazil, with 52 informal caregivers of older persons who need full-time help for basic living activities. Caregivers' burden was assessed by Zarit Burden Interview (ZBI). Data were analyzed using a T-test, Pearson's correlation, and Multiple Linear Regression. The ZBI mean score of caregivers was 26.3 points (SD = 14.6; min = 0; max = 68). Burden scores were higher among caregivers who did not receive help from other people in care (p = 0.016), reported family dysfunction (p = 0.001), and had depression symptoms (p = 0.007). A correlation was found between the scores of burdens and satisfaction with care (r = 0.76; p < 0.001) and perceived material support (r = -0.30; p = 0.40). Satisfaction with care (β: 0.61; p < 0.001) and family dysfunction (β: 8.07; p = 0.033) were significantly associated with the burden score. Caregivers with dysfunctional families and satisfaction with the care presented the highest-burden scores. The findings reveal the need for strategies to facilitate mediation and reduce caregiver burden by strengthening the family network support or providing professional assistance.

NEUROPSYCHIATRIC SYMPTOMS IN PRIMARY CARE PATIENTS WITH DEMENTIA

Abstract Neuropsychiatric Symptoms of dementia are mostly valued within care and burden of formal and informal caregivers and less considered as diagnosis predictors. Diagnosis of dementia in Primary Care Service (PCS) is frequently late and based mostly in general clinic assessment, and patient/family subjective complaints. We study the association of Neuropsychiatric Symptoms (NPI-Q) and existing diagnosis of dementia in PCS. The objectives are to know 1) the prevalence of symptoms identified by familial caregivers in people with a diagnosis of dementia and 2) if there is an association of symptoms with the existence of a diagnosis.Method: we randomly select a community based sample of a pool (N=2734) of primary care users with mental health concerns referred by General Physicians, (N=154), mean age 76 years (sd 7.8), 57% women. Caregivers (N=39) were interviewed and fulfil NPI-Q. Results of descriptive and logistic regression analysis showed that 39% (60) had a formal diagnosis of dementia not differentiating men and women. The neuropsychological symptoms frequency varied between 3.1% (hallucinations) and 16.3% (apathy/indifference), and the symptoms’ mean was 4.5(sd 2.1). The amount of symptoms was not associated with the diagnosis. The symptoms that predict the diagnosis were Apathy/ Indifference OR 5.24(1.25-22.0),p.024 and Motor Disturbance OR 5.70(1.17-27.6), p.031. Qualitative data from caregivers interview show that they are not very comfortable with the terminology of NPI-Q, which may limit the accuracy of assessment. Conclusion some neuropsychological symptoms identified by caregivers seems to be relevant as predictors of diagnosis of dementia in Primary Care.

IMPACT OF OLDER ADULTS’ INTERNET USE ON THE ECONOMIC BURDEN OF INFORMAL CAREGIVING

Abstract Objectives Digital technology enables older adults to live independently by handling health-related tasks or shopping/banking online, thus can reduce care burden. This study examines the impact of older adults’ Internet use on formal and informal care hours and its influence on estimating cost savings with active and potential Internet users. Methods Medicare beneficiaries ages 65 and above with functional difficulties were sampled from the 2015 National Health and Aging Trends Study (N=1,806). Care is measured by total hours for help older adults received in the past month, separated by formal and informal care. Internet use for health-related tasks and shopping/banking were measured. A survey weighted two-part model with gamma distribution was estimated. The cost savings of informal caregiving was estimated by a replacement approach. Results Older adults' health-related Internet use substantially reduced informal care hours by 27.7% (19.8 hours per month, p &amp;lt; .05), but not for formal care hours. A monthly estimated cost reduction of informal caregiving was $3,094 per an older adult with functional difficulties by applying 2020 median wage of home health aide workers. The annual savings in the cost of informal caregiving associated with older adults’ health-related Internet use is estimated to be $8.1 billion with the active users and additionally $20.1 billion with the potential health-related Internet users in the US. Discussion: Promoting health-related Internet use among older adults with functional difficulties to relieve economic burden of informal caregiving will be discussed.