Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours

ObjectiveDue to the presence of neuropsychiatric behaviors and the decreased ability for activities of daily living (ADLs), family caregivers experience high burden levels in caring for people with dementia (PWD). This study sought to test the mediating role of caregiving hours in association with PWDs’ ability for basic activities of daily living (BADL) function or neuropsychiatric behaviors and caregiver burden.MethodsThis study used two waves of survey data, collected between 2013 and 2016, from 186 PWD–caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan. Two sets of multiple linear regression models were used to analyze the relationships between the changes in patients’ BADL function, patients’ neuropsychiatric behaviors, caregiving hours in ADL (including BADL and Instrumental ADL), and caregiver burden (measured using Zarit Burden Interview). Bootstrapping methods were used to detect the mediating effects of caregiving hours in ADL if the 95% confidence interval (CI) did not cover 0.ResultsCaregiving hours in BADL mediated the relationship of PWDs’ BADL function and caregiver burden (effect = −0.0137, 95% bootstrap CI = −0.0379, −0.0003). However, such mediating effects were not found in the relationship of PWDs’ neuropsychiatric behaviors and caregiver burden.ConclusionsIn order to relieve caregiver burden, respite care services for caregivers for PWD should target services that assist with PWD’s BADL.     

Frailty Does Not Impact Caregiver Burden in Patients with Cirrhosis

Background

Frailty is common and is associated with increased mortality, lower quality of life, and higher readmission rates in cirrhotic patients. Not only are these outcomes important, but further understanding the impact of frailty on a caregiver’s life is crucial to better comprehend caregiver burden in cirrhotic patients and develop strategies to improve care for patients and their caregivers.

Methods

A single-center, prospective study was conducted of cirrhotic patients and their caregivers between 4/1/2019 and 11/1/2019. Frailty testing combined aspects from the Fried Frailty Instrument, Short Physical Performance Battery, and activities of daily living. Caregivers completed questionnaires to evaluate caregiver burden using the Zarit Burden Interview (ZBI-12), and perceived social support, using the Interpersonal Support Evaluation List.

Results

In total, 94 cirrhotic patients were included, 50% males with a median age of 63.1 years. The most common etiology of cirrhosis was nonalcoholic steatohepatitis. Frailty was prevalent (45.1%). In total, 12.8% of caregivers reported a high burden based on ZBI-12. There was no association between frailty and caregiver burden, hospitalization rates, or death. However, frailty was associated with a higher number of outpatient GI visits (p?=?0.002). Lower perceived social support among caregivers was associated with a higher caregiver burden (p?<?0.0001).

Conclusion

Frailty is prevalent in cirrhotic patients but is not associated with higher rates of caregiver burden. Low perceived social support among caregivers, however, was associated with higher caregiver burden. It is important to recognize the impact of caregiver burden on caregivers of cirrhotic patients and ensure caregivers have the appropriate support to mitigate burden.

     

A survey of caregiver burden for stroke survivors in non-teaching hospitals in Western China

The social factors that moderate stroke caregiver burden have been found to be culture- and gender-specific. We examined the factors that influence the social support and self-efficacy of caregivers of stroke survivors and the burden of caregiving in China. To determine the caregiver burden of stroke survivors, their social support, and their self-efficacy. A total of 328 stroke survivors and their caregivers were recruited from 4 tertiary medical centers to participate in this cross-sectional study. The sociodemographic and stroke-related characteristics of the participants were obtained. Perceived social support and self-efficacy were assessed using the Social Support Rating Scale and General Self-efficacy Scale, respectively. Caregiver burden was assessed using the Zarit Burden Interview Scale. Relationships between the variables were assessed using Pearson’s correlation, the chi-square test, and a paired t test. A total of 27.4% of the caregivers reported receiving adequate social support, while 20.7% reported high levels of self-efficacy. A total of 67.1% of the caregivers experienced varying degrees of care burden, while the remaining 32.9% felt no burden. Participants’ sociodemographic characteristics (age, daily care time, self-rated health, and financial situation) were significantly related to caregiver burden, social support, and self-efficacy (P < .001). The findings indicate an inverse relationship between caregiver burden, social support and self-efficacy. Adequate social support and self-efficacy can reduce stroke caregivers’ burden. Hospital departments should provide assistance to stroke caregivers through educational programs and group training to increase their social support and self-efficacy, thereby alleviating their burden.     

Social support and caregiving circumstances as predictors of caregiver burden in Taiwan

Previous research has failed to consider the importance of caregiving circumstances and their impact on social support and caregiver burden. Hence, this study aimed to investigate the association between perceived and received social support and caregiver burden. This cross-sectional study was carried out on 301 family caregivers. Data was collected using structured questionnaires which included a Social Support Scale, Family APGAR (adaptation, partnership, growth, affection, resolve), and Caregiver Burden Scale. Findings showed that the caregiver burden was best predicted by two perceived and one received social support variables. Caregiver burden was likely to be higher when the caregivers had lower levels of family function and social support. Perceived social support was better at predicting caregiver burden than received social support. Our study indicates that family function has an important influence on caregiver burden. Further studies on family based interventions are needed to determine approaches for effectively reducing caregiver burden. The role of perceived social support in the health of caregivers should be further investigated as a possible protective determinant in the caring process.     

Family functioning and social support for older patients with depression in an urban area of Shanghai,China

PurposeGeriatric depression is now very common and leads to significant economic costs and family burden in China. Families with a depressed patient often report problematic family functioning in Western samples, and lack of social support is strongly associated with geriatric depression. However, the relationship between geriatric depression, family functioning and social support in mainland China has not been well studied.Materials and methodsThis study compared family functioning and social support in a Chinese sample of elderly patients with major depression and non-depressed elderly people, and evaluated the impact of family functioning, social support and socio-demographic factors on depression. A questionnaire was administered to 102 elderly patients with major depression and 107 non-depressed elderly people.ResultsThe elderly patients with major depression had worse family functioning and lower social support than elderly individuals without depression. Multivariate linear regression analysis showed associations between depressive symptoms and unhealthy family functioning, lower social support and single marital status.ConclusionsThe findings suggest that family interventions and improvement of social support are important in reducing depression among elderly patients. In addition, strategies to alleviate geriatric depression should be considered by the whole society, the community, family members and the depressed elderly patients themselves.     

Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

BackgroundCaregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria.MethodsA qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method.ResultsFifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists), other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma).ConclusionThis study provides insight into the burden of care of older adults with chronic illness. Caregivers’ commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing.     

Association between family caregivers and depressive symptoms among community-dwelling older adults in Japan: A cross-sectional study during the COVID-19 pandemic

ObjectivesNovel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic.MethodsThis cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status.ResultsCompared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms.ConclusionsFamily caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers.     

Care Tasks in the Stress Process for Family Caregivers in Urban China

Objectives: To explore the role of care tasks in the caregiving stress process, this study tested the relationships between distinct care tasks, primary stressors, caregiver burden, and depressive symptoms among caregivers.

Methods: The data were collected from a sample of 754 caregivers who provided care for frail, elderly family members in Shanghai, China. Path analysis was conducted to identify the relationships between the three types of care tasks (monetary support, physical care and emotional care), the caregivers’ background, primary stressors, caregiver burden, and depressive symptoms.

Results: The results show distinct paths through the three types of care tasks in the stress process. Caregivers with higher incomes were more likely to provide monetary support to their care recipients. Being a female caregiver and having greater primary stressors were associated with more involvement in physical care, which predicted higher levels of caregiver burden and further exacerbated depression. The cognitive impairment of care recipients was associated with greater emotional care, with the caregivers who provided more emotional care reporting higher levels of caregiver burden but lower levels of depression.

Conclusions: This study underscores the importance of considering different types of care tasks to properly understand caregiving stress across cultures and societies.

Clinical Implications: This study highlights the need for interventions to alleviate the caregiving stress by helping family caregivers understand the importance of emotional care, training them to appropriately meet the psychological and social needs of their care recipients and providing financial support for caregivers with lower income to purchase respite care services.     

Relationship between expression of gratitude by home-based care receivers and caregiver burden among family caregivers

BackgroundsWe focused on the frequency of “gratitude” expressed by home-based care receivers towards family caregivers before they were in the condition that needed care and investigated the relationship with caregiver burden.MethodsThis cross-sectional online survey was completed by 700 family caregivers in Japan. Caregiver burden was assessed using the Zarit Burden Interview. Caregivers with a score of ≤ 19 were defined as having mild caregiver burden, those with a score of 20 to 38 as having moderate, and those with a score of > 38 as having severe. Additionally, caregivers were asked, “How often did you get a ‘thank you’ from your care receiver before they were in a condition that needed care?” Answers were scored using a 11-point Likert scale. Answers with scores 0-2 were defined as low frequency of gratitude, 3-6 as middle, and 7-10 as high.ResultsAmong all caregivers, 233 (33.3%), 229 (32.7%) and 238 (34.0%) accounted for having mild, moderate and severe caregiver burden, respectively. High frequencies of gratitude of 48.9%, 43.7%, and 39.1%, respectively, were concluded with a significantly higher rate in the mild than in the severe caregiver burden group (p = 0.03). The results of multinominal logistic regression analysis, even after adjusting for several factors, show that high frequency of gratitude was significantly associated with caregiver burden (p < 0.01, OR: 0.48, 95%CI: 0.28-0.81).ConclusionsWe found the frequency of gratitude from the care receiver before they were in the condition that needed care was substantially associated with caregiver burden.     

Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model

In this study we assessed the new transactional stress and social support model, postulating the role of neuroticism, ethnicity, familism, and social support in perceived burden in dementia caregivers. We used a convenience sample (N=77) of African American and White dementia caregivers. Results substantiated interrelationships among social support variables, and the influence of perceived positive social support on burden. Neuroticism was related to the perception of positive social support and burden. Results corroborated the model, focusing on neuroticism and quality of social support in modeling perceived burden in family caregivers. Findings call attention to the role of presumably long-standing individual differences in neuroticism that influence caregiver appraisals of stress and social support.     

Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study

ObjectivesTo explore spouse caregivers’ means of coping with the disease and compare them based on the age of onset of the disease in order to adapt support programs.MethodsInterviews were conducted with 38 spouse caregivers of persons with late-onset dementia (PLOD) and 40 spouse caregivers of persons with early onset dementia (PEOD). The first step in the analysis was qualitative, using QSR N’Vivo 10 to identify the coping strategies. The second step was quantitative, comparing the coping strategies based on the age of onset of the disease with a χ2 test.ResultsAn inventory of 26 strategies used by all caregivers was established and consolidated into two groups: acceptance strategies and avoidance strategies. The statistical results show that some strategies were used by the two groups of caregivers. However, when differences emerged, the “Planning” strategy was used by spouse caregivers of PEOD, whereas the “Re-arranging”, “Humor” and “Getting away from the entourage” strategies were used by spouse caregivers of PLOD.ConclusionIt would be interesting to develop a support program with a common framework and specific modules depending on the age of onset of the disease. Common modules would permit developing and strengthening acceptance strategies. Specific modules for caregivers of PEOD would guide them in the acquisition of more adaptability and flexibility in the assistance provided to the PWD, which can sometimes be too rigid and controlled. Specific modules for caregivers of PLOD would help them to develop the ability to request help and identify the intervention limits of the entourage.     

Family caregiving in pulmonary arterial hypertension

Background

Pulmonary arterial hypertension (PAH) is a devastating disease that places a significant burden on patients and their families. However, family caregiving, to the best of our knowledge, has never been described in this population. This study sought to describe depressive symptoms, types of performed care tasks, social support, and the impact of caregiving among family caregivers of patients with PAH.

Methods and Results

Data were obtained from 35 dyads of patients with PAH (mean age, 51 years; 63% were female; 54% had World Health Organization functional class III symptoms) and their family caregivers (mean age, 52 years; 60% were female; 68% were spouses). Five caregivers (14%) were identified as manifesting moderate to severe depressive symptoms. The majority of caregivers reported that their daily activities were centered around caregiving responsibilities. More than 85% of caregivers were involved in managing care for the patient, and more than half helped the patient with self-management activities. The level of caregivers’ perceived social support was low, especially for emotional and informational support. Lower levels of social support were significantly associated with more severe depressive symptoms in caregivers (r = −.50, P = .002).

Conclusion

Caregivers of patients with PAH play a significant role in patients’ medical care and self-management, yet they lack sufficient emotional support or information to meet the demands of caregiving. These findings underscore the importance of supporting family caregivers of patients with PAH.     

A high sense of coherence protects from the burden of caregiving in older spousal caregivers

ObjectivesCaregiving is often associated with burden and chronic stress. Sense of coherence (SOC) may help the caregivers in coping with their stress and was identified as a positive factor for health outcomes and quality of life. We aimed to study the links between SOC, burden, depression and positive affects among caregivers of frail older patients.MethodsSeventy-nine spousal caregivers were recruited via the geriatric outpatient clinic. Data collected: Zarit Burden Inventory, SOC-13, Geriatric Depression Scale, Caregiver Reaction Assessment (CRA), sleep, time of supervision, Katz Index, Global Deterioration Scale and Neuropsychiatric Inventory. Analyses: Caregiver’s characteristics were analyzed by burden severity and SOC level. Multivariable logistic regressions were used in order to identify the variable that best predict caregiver burden and high SOC.ResultsThe mean age was 79.4 ± 5.3; 53% were women. Among care-recipient, 82% had cognitive impairment and the median Katz Index was 3. Caregivers with a high SOC and an older age reported a lower burden (Odds Ratio (OR) 0.18, 95% confidence interval (CI) 0.04–0.65 and OR 0.87, 95% CI 0.76–0.98, respectively). A higher burden was associated with patient functional limitations (OR 8.69, 95% CI 2.28–40.46).DiscussionHaving a high sense of coherence seems to be a protective factor against the burden. To support caregivers, health providers should recognize the expertise of the caregivers and the meaningfulness of this care situation.     

The Composition and Structure of Depressive Symptomatology among Young and Older Caregivers of Persons with Dementia

Informal caregivers of persons with dementia (PWD) experience higher rates of clinical depression relative to general populations of older adults. Because caregivers range considerably in age (e.g., older spouses as compared to adult children or grandchildren), the need exists to evaluate the psychometric properties of depression screening measures to ascertain if cohort differences exist. The current study was conducted to determine whether responses to the Center for Epidemiological Studies–Depression (CES-D) Scale are equivalent between older (range 66 to 93 years; n?=?542) and younger PWD caregivers (range 21 to 65; n?=?884). Only responses to the interpersonal affect factor differ between the two. We contend that this pattern of consistency is due to similarity of role demands which may cause depressive symptoms to present more uniformly among PWD caregivers in contrast to heterogeneous groups of young and older adults. Overall, our findings support the higher-order factor structure of CES-D responses within a population at elevated risk for depression.     

Characteristics of participants’ and caregivers’ influence on non-response in a cross-sectional study of dementia in an older population

ObjectiveThe issue of non-response in dementia epidemiological studies, which may result in the underestimation of the prevalence of dementia, has attracted little attention. We aimed to explore the causes and related factors of non-response in a dementia survey among Chinese veterans.MethodsA two-phase, cross-sectional study investigated the prevalence of dementia and mild cognitive impairment in Chinese veterans aged ≥60 years. We collected the socio-demographic data and prior medical history, evaluated the health status of veterans and their caregivers, assessed the cognitive status of veterans, and evaluated the care burden of caregivers by Caregiver Burden Inventory (CBI).ResultsOf 9676 eligible participants, 525 (5.4%) veterans in phase 1 and 1706 (35.0%) veterans among 4875 veterans in phase 2 did not respond. Illness, hospitalization and death accounted for 63.0% and 75.5% non-response in phases 1 and 2, respectively. Non-participation in social activities, self-perceived poor health status, worsened health changes, self-reported need for life care, and history of hearing loss or glaucoma independently predicted non-response in phase 1 or 2. The heavy care burden, suggested by the higher CBI scores and self-reported health deterioration of the primary caregivers, predicted non-response in phase 1 or 2.ConclusionsThe negative factors from both the participants and their caregivers independently predicted the non-response in the dementia study in an older population. Preventative strategies from the perspectives of the participants and caregivers should be developed to improve the response rates in both phases in a cross-sectional study.     

Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

ObjectivesThis study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers.MethodsThe data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model.ResultsThe study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05).DiscussionOur findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.     

The effect of parental social support and acculturation on childhood asthma control

Objective: There exists large ethnic disparities in asthma among Latino children; Puerto Ricans (PRs) are disproportionately affected, while Mexicans have the lowest prevalence and morbidity. Disparities are poorly understood, however, acculturation and social support are suggested to influence asthma control among children. This study investigated the relationship between acculturation, social support and asthma control among PR and Mexican children and their caregivers. Methods: Primary caregiver-child dyads (n?=?267) of PR (n?=?79) and Mexican (n?=?188) descent were recruited from clinics at two inner-city hospitals in Bronx, NY and three clinics in Phoenix, AZ. Children were 5–12 years of age and had a confirmed asthma diagnosis. Dyads completed measures of social support, acculturation and asthma control; logistic regression was used for analysis. Results: Mexican children had better asthma control than PR children (p?<?0.001). PR caregivers were more acculturated than Mexican caregivers (p?<?0.05); however, acculturation did not predict control. Across Latino subgroups caregivers’ total level of social support predicted better asthma control among children (p?<?0.05), and support received from family and friends each independently predicted better control (p?<?0.05). Conclusions: Results suggest that social support reduces some of the burden associated with asthma management enabling caretakers to better control their children’s asthma.