Dementia Family Caregivers Research Articles

Prediction models for burden of caregivers applying data mining techniques

Introduction Caregiver stress negatively influences both patients and caregivers. Predictors of caregiver difficulty may provide crucial insights for providers to prioritize those with the highest risk of stress. The purpose of this study was to develop a prediction model of caregiver difficulty by applying data mining techniques to a national behavioral risk factor data set. Methods Behavioral data including 397 variables on 2,264 informal caregivers, who provided any care to a friend or family member during the past month, were extracted from a publicly available national dataset in the U.S (N = 451,075) and analyzed. We applied several classification algorithms (J48, RandomForest, MultilayerPerceptron, AdaboostM1), to iteratively generate prediction models for caregiving difficulty with 10-fold cross validation. Results 44.7% of informal caregivers answered that they faced the greatest difficulties while they took care of patients. Among those who faced the greatest difficulties, the reasons were creating emotional burden (45%). Patient cognitive alteration (e.g. cognitive changes in thinking or remembering during the past year), care hours, and relationship with a caregiver appeared as the main predictors of caregiver stress (classified correctly 63%, difficulty AUC = 65%, no difficulty AUC = 65%). Conclusions Data mining methods were useful to discover new behavioral risk knowledge and to visualize predictors of caregiver stress from a multidimensional behavioral dataset.This study suggests that health professionals target dementia family caregivers who are anticipated to experience patients' neuro-cognitive changes, and inform the caregivers about importance of limiting care hours, burn out and delegation of caregiving tasks.

Family Caregiving in Dementia and its Impact on Quality of Life and Economic Burden in Japan – Web-Based Survey

Family Caregiving in Dementia and its Impact on Quality of Life and Economic Burden in Japan – Web-Based Survey

Comparing the Effect of a Moderate Physical Activity Intervention on the Mental Health Outcomes of African American and Caucasian Dementia Family Caregivers: A Secondary Data Analysis

ABSTRACT Increased attention to the effects of the stressful demands of caregiving on the mental health of dementia caregivers has resulted in the development of numerous interventions. The current study is a secondary analysis of a randomized controlled trial that tested a 12-month moderate physical activity intervention with dementia caregivers. Our secondary data analysis examined racial differences in caregiver mental health outcomes including subjective burden, depressive symptoms, and positive affect, as well as differences in physical activity. A total of 211 community-dwelling dementia family caregivers were randomly assigned to a 12-month Enhanced Physical Activity (treatment) Intervention (EPAI) or a Caregiver Skill Building (control) Intervention (CSBI). Of these, 34 African American and 80 Caucasian caregivers completed the study. At baseline, race was associated with subjective burden and positive affect, but not with depressive symptoms. Post intervention (12 months), there were no racial differences in subjective burden or depressive symptoms. However, race was significantly associated with decreased positive affect (p = 0.003) and decreased total minutes of physical activity (p = 0.012). Findings suggest that the mental health needs of African American caregivers warrant additional exploration, where physical activity may be of benefit. These findings provide a cultural perspective to consider during intervention development for future nurse-driven research.

Ambivalence and guilt feelings: Two relevant variables for understanding caregivers' depressive symptomatology.

Providing care for a relative with dementia is considered to be a chronic stressor that has been linked to negative mental health consequences for caregivers. A theoretical model was developed and tested to assess the degree to which ambivalence and guilt feelings contribute to caregivers' depressive symptomatology. Participants included 212 dementia family caregivers. In addition to ambivalence and guilt feelings, sociodemographic characteristics, behavioural and psychological symptoms of dementia, and depressive symptomatology were assessed. Hypotheses derived from the stress and coping model were tested using path analysis. The analysed model showed an excellent fit to the data. In total, 35% of the variance in depressive symptomatology was explained by the assessed variables. Although significant correlations were obtained between frequency and appraisal of behavioural and psychological symptoms of dementia and depression, the obtained model suggests that this effect was mediated through ambivalence. In addition, ambivalence had an indirect effect on depression. The association of ambivalence with depression was explained through feelings of guilt; that is, respondents who reported ambivalent feelings were more likely to experience guilt, leading in turn to greater depressive symptomatology. The findings suggest that dementia caregivers' ambivalence and guilt feelings are relevant for understanding their depressive symptomatology. These factors should be addressed in psychological interventions with caregivers.

Stories of family caregivers of people with dementia in Greece: Implications for counselling

A substantial body of literature has identified high rates of burden, psychological morbidity, social isolation, health and financial difficulties among dementia caregivers. The present qualitative study adopted an Interpretive Phenomenological Analysis approach in order to explore the lived experiences of dementia family caregivers within the Greek sociocultural context. The sample was purposive and consisted of 10 women dementia family caregivers from Athens and Thessaloniki. Individual in-depth interviews were conducted and analysed according to IPA. The participants’ personal accounts included themes related to ethical/existential and cultural aspects of family caregiving; changes in family relationships; impact of the caregiving experiences; sources of support and help seeking; positive and meaningful aspects of the care experience. The research findings are discussed in the context of Gilligan’s moral psychological theory, and cultural dimensions of family caregivers. Implications for counselling interventions aiming at supporting caregivers are presented.

ANALYSIS OF CAREGIVER RISK TO ASSESS NEEDS OF FAMILY CAREGIVERS FOR PATIENTS WITH DEMENTIA

Family Caregivers of patients with dementia experience greater risk of caregiving than other caregivers. Caregiver risk of family caregivers in dementia is multidimensional and interrelated and a critical determinants of quality of life. Therefore, caregiver risk can systematically assess well-being and identify needed areas of support for caregivers of patients with dementia. The purposes of this study were to examine risk domains of family caregivers for patients with dementia and to investigate associations between characteristics of patients with dementia and risk domains of family caregivers This is a descriptive, correlational, and cross-sectional study using convenience sample from 25 district dementia support centers in Seoul, South Korea. The questionnaires for family caregivers included risk appraisal and demographic and caregiving information. Data on patients with dementia of family caregivers completing the questionnaires included duration and type of dementia, CDR (Clinical Dementia Rating), MMSE (Mini Mental State Examination), and demographic information. In comprehensive assessment of risk in family caregivers of patients with dementia, caregiving burden of patients with dementia was identified as the most significant risk among five risk domains of family caregivers: information, safety, burden, social support, and health. This finding is consistent with previous studies which indicated that caregivers of patients with dementia have moderate or severe levels of burden and may partially explain burden of caregivers as integrated response to physical, psychological, emotional, social, and financial stressors on caregiving. Burden in caregiving of patients with dementia is the most significant risk domains of family caregivers, followed by social support and health risk of family caregivers. Gender and health-related quality of life of patients with dementia are significant factors of information, burden, and health risk of family caregivers for caregiving. Gender, age, marital status, education, income, employment, having certified care worker, and neuroticism of family caregivers are associated with risk of information, safety, social support, and health of family caregivers in caring for patients with dementia. *This research was supported by research fund by Seoul Dementia Center and Basic Science Research Program through the National Research Foundation of Korea (NRF) funded by the Ministry of Science, ICT and future Planning(NRF. 2013R1A2A2A01069090).

34 An investigation of gastrointestinal symptoms, psychological well-being and cognitive performance in informal dementia caregivers

Background Caring for a relative with dementia is considered particularly stressful and is associated with numerous adverse health effects at multiple levels of the brain-gut axis. There is also evidence that long-term family caregivers are more likely to develop irritable bowel syndrome. Aim The current study aimed to compare family dementia caregivers to a non-caregiver control group, and to examine the impact of interventions, designed to help dementia caregivers manage stress and the caregiving role, on gastrointestinal symptoms, cognitive performance and psychological well-being. Method Caregiver participants were recruited via clinics at St. Finbarr’s Hospital, Cork and control participants via the university community. Participants completed the irritable bowel syndrome symptom severity scale, as well as validated tests of stress, anxiety, and depression. Participants also completed cognitive tasks from the CANTAB battery. A subset of caregivers completed both a carer training program and mindfulness-based stress reduction program. Each program was delivered in a group setting by an experienced instructor and lasted 6-8 weeks. Results Although caregivers had higher levels of stress and poorer cognitive performance, gastrointestinal symptoms were not altered compared to controls. Following both interventions, caregivers had improved cognitive performance. However, reported stress, anxiety and depression were not significantly altered following the interventions. Stress-reduction interventions also had no significant impact on gastrointestinal function. Conclusions The stress associated with informal dementia caregivers does not manifest across gastrointestinal symptoms and stress-reduction techniques do not improve gastrointestinal well-being. This is in contrast to the impact of caregiving at higher levels of the brain-gut axis.

Potentially preventable hospitalizations in dementia: family caregiver experiences.

Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

Randomized Controlled Trial of Inner Resources Meditation for Family Dementia Caregivers

This randomized controlled trial examined the comparative effectiveness of 2 interventions for improving diurnal cortisol slope and life satisfaction and reducing stress symptoms among older female dementia family caregivers. Thirty-one family dementia caregivers were randomized to 8 weeks of Inner Resources for Stress mindfulness meditation and mantra training (IR) or psychoeducation and telephone support (PTS). Intention-to-treat analyses revealed statistically significant pre-post improvements in diurnal cortisol slope and overall life satisfaction, but not depression or self-efficacy, in the IR relative to the PTS group. Adherence to between-session meditation practice was significantly associated with decreases in depression and self-reported improvements in ability to cope with stress. In addition, IR participants rated the overall benefits of the program more highly than the PTS group. These results indicate that mindfulness meditation and mantra has promise as a feasible and effective caregiver intervention for quality of life and physiological responding to stress.

Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers

ABSTRACTObjectives: Experiential avoidance in caregiving (EAC) has been found to be related with dementia family caregivers´ distress and blood pressure (BP). The association between EAC and avoidant attentional biases to emotional stimuli in dementia caregivers, and the potential mediating role of these attentional biases in the association between EAC and increased BP are explored.Method: Seventy nine dementia family caregivers performed a dot-probe task with emotional pictures (distressing and positive) varying in content (general vs. caregiving-related (CR)) and time of exposure (100 vs. 500 ms). They also completed measures of EAC, anxiety, depression, alexithymia and rumination, and their BP was measured.Results: EAC was associated with avoidant attentional biases to CR emotional pictures and negative pictures in general at 100 ms. Experiential Avoidance in Caregiving Questionnaire (EACQ) ‘avoidant behaviors’ and EACQ ‘intolerance of negativity’ factors were associated with diastolic and systolic BP, respectively, with attentional avoidance of CR emotional pictures (distressing and positive, respectively) mediating this association.Conclusion: Attentional avoidance of CR emotional stimuli may be the link between EAC and increased BP, as it prevents emotional processing and facilitates the maintenance of physiological activation. EAC may pose a risk for cardiovascular disease in dementia caregivers.

Effects of Caregiving Burden on Gain and Family Quality of Life Among Dementia Family Caregivers： The Moderating Role of Coping Strategies

Effects of Caregiving Burden on Gain and Family Quality of Life Among Dementia Family Caregivers： The Moderating Role of Coping Strategies

Does vigilance in decision-making matter for dementia family caregivers?

ABSTRACTObjectives: Family responsibilities and social expectations often prompt conflict in caregivers’ decision-making processes. Janis and Mann's (1977) conflict model describes vigilance as high-quality decision-making resulting in optimal outcomes. The purpose of our research was threefold: (1) to describe decision styles in a population of family caregivers of persons with dementia; (2) to examine the socio-economic characteristics associated with caregivers who are more likely to be vigilant decision-makers; and (3) to assess differences in caregiving experiences between vigilant and non-vigilant caregivers.Method: Our analysis was based on 639 survey respondents recruited from a university-affiliated memory disorders clinic.Results: Our typical caregiver was Caucasian non-Hispanic, was currently married, and had two children. Approximately half of our sample used a ‘pure vigilant’ decision style. Vigilance was associated with more positive and fewer negative caregiving outcomes.Conclusion: Supporting caregivers to become vigilant decision-makers is a functionally viable intervention that could significantly improve the caregiving experience.

Diurnal salivary alpha-amylase dynamics among dementia family caregivers.

The study examined diurnal regulation of salivary alpha-amylase (sAA) in association with daily stressors, adult day services (ADS) use, and other caregiving characteristics. A sample of 165 family caregivers of individuals with dementia (IWD) completed an 8-day diary study. Caregivers provided 5 saliva samples across the 8 days. On some days, caregivers provided all or most of the care. On other days, their relative attended ADS for part of the day. A 3-level unconditional linear spline model was fit to describe the typical sAA diurnal rhythms. Predictors were then added to the unconditional model to test the hypotheses on ADS use and daily stressors. Daily ADS use did not have an effect on diurnal sAA regulation. However, controlling for daily ADS use, greater ADS use over the 8 days was associated with a more prominent rise between 30 min after wake-up and before lunch, and a more prominent decline between before lunch and late afternoon. Fewer ADS days were associated with a more flattened sAA diurnal rhythm. Additionally, greater daily care-related stressor exposures had a within-person association with lower sAA levels in the late afternoon. Care-related stressor exposures had significant within- and between-person associations with sAA diurnal slopes. Furthermore, daily positive experiences had a significant between-person association with sAA diurnal slopes. Caring for a disabled family member may heighten the vulnerability to potential physiological conditions. Respite from care stressors from ADS use may have some biobehavioral benefits on sAA regulations. (PsycINFO Database Record

"There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study.

Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers' beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an "expert" point of contact, and having beliefs about the caregiving role that enabled the use of services. Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Need Assessment of Online Dementia Family Caregiver Education Program

Need Assessment of Online Dementia Family Caregiver Education Program

An evidence-based technological caregiver skill building intervention for dementia family caregivers: pilot study

An evidence-based technological caregiver skill building intervention for dementia family caregivers: pilot study

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator

ABSTRACTObjectives: The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan.Method: This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal.Results: Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant.Conclusion: Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Finding Meaning in Written Emotional Expression by Family Caregivers of Persons With Dementia.

This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments.

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers

ABSTRACTObjectives: To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions.Method: Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services.Results: For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability.Conclusions: Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.

Taiwanese Stories of Dementia

This article explores how Taiwanese people construct and recount their experiences of dementia in factual and fictional stories. It compares the narrative meanings in Taiwanese stories with those of analogous mainland Chinese and Hong Kong accounts. The article finds that the Taiwanese stories differ from their mainland Chinese and Hong Kong counterparts in three ways. First, the onset of dementia is largely an unforeseen calamity for the Taiwanese storytellers, while it is an anticipatable life circumstance for the mainland Chinese and Hong Kong storytellers. Second, the Taiwanese storytellers tend to locate the cause for the deterioration of their elderly family member in illness, while the mainland Chinese and Hong Kong storytellers tend to explain away the deterioration of their elderly family member as normative aging. Third, the Taiwanese storytellers maintain their existing identities when faced with the newfound challenge of family caregiving in dementia, while the mainland Chinese and Hong Kong storytellers commonly appropriate the former culturally embodied identity of the family member whom they now care for.