Social support and well-being in dementia family caregivers: The mediating role of self-efficacy

Objectives: The study investigated self-efficacy as a possible mediator of the relationship between the social support and depressive symptoms of primarily informal caregivers, mainly family members, of patients with dementia in Hong Kong.

Method: One hundred and thirty-four caregivers were interviewed. Path analyses were conducted using a self-efficacy scale that consists of three subscales assessing three domains of caregiving self-efficacy. Self-efficacy for obtaining respite, responding to disruptive patient behaviours, and controlling upsetting thoughts about caregiving were measured.

Results: Results showed that self-efficacy acted as a partial mediator between social support and depressive symptoms of these caregivers.

Conclusion: Findings suggest that self-efficacy may function as a mechanism through which social support influences depressive symptoms, and the importance of this self-efficacy mechanism can be domain-specific.     

Informal caregivers’ burden and stress in caring for stroke survivors with spatial neglect: an exploratory mixed-method study

Background: Spatial neglect prolongs stroke survivors’ recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors.

Objective: To explore the factors associated with burden and stress among informal caregivers of stroke survivors with spatial neglect.

Methods: Following the previous study of 108 stroke survivors, we reached 24 stroke survivors’ caregivers, and 20 caregivers (age: M±SD=56.9±12.7 years; 12 females) completed the study. 10 survivors had symptoms of spatial neglect, and 10 did not (i.e., SN+ or SN-, respectively) at the time when discharged from inpatient rehabilitation, which was 9.3±6.2 months before the present study. Via a semi-structured telephone interview, we assessed caregivers’ burden and stress qualitatively and quantitatively.

Results: No difference was observed across caregiver groups in cognitive function, depressive mood, or community mobility. In comparison, caregivers of the SN+ group allocated more time to care, controlling for survivors’ disability (adjusted effective size d = 1.80). Their self-perceived burden and stress were more severe than the other group (adjusted d = .99). Qualitative analysis indicated caregivers of the SN+ group were more likely to describe economic stressors and undesirable changes in career and vacation planning. While 80% of participants preferred their care recipients to receive additional motor or mobility therapy, caregivers of the SN+ group were more likely to suggest additional therapy for cognitive impairment.

Conclusions: This exploratory study suggests that spatial neglect may heighten caregivers’ burden and stress levels. Future studies with a large sample size are required.     

Predictors of caregiving burden: impact of subjective health,negative affect,and loneliness of octogenarians and centenarians

Objectives: This study aimed (1) to determine whether octogenarian and centenarian care recipients’ self-report on physical, social, and emotional status are different from caregivers’ reports, (2) to assess associations between octogenarian and centenarian care recipients’ poor physical, social, and emotional status and caregiver burden, and (3) to determine which report, the care recipients’ self-report or caregivers’ report, about the participants’ physical and emotional status predicted more accurately levels of caregiver burden.

Method: Self-ratings and caregiver informant ratings were obtained from 309 participants of the Georgia Centenarian Study. Care recipients’ health, negative affect, and loneliness were reported by both the caregivers and care recipients for the analyses. Differences between care recipients’ and caregivers’ reports were assessed by t-test. Blockwise multiple regression analysis was computed to assess predictors of caregiver burden.

Results: Caregivers’ reports on the three measures were significantly higher than self-reports. Caregivers’ negative affect and loneliness, not physical health, reported by caregivers predicted higher caregiver burden. Care recipients’ reports did not predict caregiver burden.

Conclusion: Caregivers perceived care recipients’ social and emotional status more negatively, and caregivers’ negative perceptions on care recipients’ well-being status were an important predictor of caregiver burden.     

Meditation-based interventions for family caregivers of people with dementia: a review of the empirical literature

Objectives: Providing care for a family member with dementia is associated with increased risk of adverse mental health sequelae. Recently, interventions utilising meditation-based techniques have been developed with the aim of reducing psychological distress among dementia caregivers. The present review aimed to critically evaluate the extant empirical literature in order to determine: (1) whether meditation-based interventions can reduce depression among dementia caregivers and (2) whether meditation-based interventions can reduce subjective burden among dementia caregivers.

Method: After adhering to inclusion and exclusion criteria, a total of eight studies were included in the present review. Methodological quality was assessed using one of two scales dependent on study design.

Results: The results provide tentative evidence that meditation-based interventions do indeed improve levels of depression and burden in family dementia caregivers.

Conclusions: The review highlighted the strengths and weakness of the studies’ methodological designs. Whilst this novel review offers evidence in support of meditation-based interventions to improve the psychological distress of family dementia caregivers, future research should direct efforts to conduct larger scale, more rigorous studies. Clinical implications of the findings are also discussed.     

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

Objectives: 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.     

Remaining connected despite separation – former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home

Objectives: This qualitative study aimed to illuminate former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home.

Method: Ten narrative interviews with former family caregivers were performed and subjected to qualitative content analysis.

Results: An overall theme showed that family caregivers were remaining connected to the person with dementia despite separation. They experienced being ‘caught by surprise’ when the placement occurred. Negative expectations of dementia care made the separation more difficult. Lacking adequate information increased feelings of insecurity. Despite these hurdles, family caregivers found meaning in the new situation as they felt that they could remain connected to their loved one. Being recognized as partners in care of the person with dementia after placement was a facilitating aspect. Family caregivers regarded a well-functioning interaction with staff and a supportive social network as reassuring since they facilitated staying in touch.

Conclusion: Knowledge of the relinquishing process and adequate information about dementia and its progression may help family caregivers better prepare for and adapt to the situation. Family caregivers need to be recognized as partners in care and a welcoming nursing home environment is of utmost importance.     

The meaning of burden of care in a faith-based community: the case of ultra-Orthodox Jews (UOJ)

Objectives: The context of caregiving in the ultra-Orthodox Jewish community is still an uncharted field. We sought to facilitate an in-depth understanding of caregivers in Israel through their views of their position as primary caregivers, their coping mechanisms with the challenges of caregiving burden, and their unfulfilled needs.

Method: Data were drawn from interviews with 28 participants, serving as primary caregivers for at least a year.

Results: Three major themes emerged from the data analysis: (1) burden of care as a universal experience, (2) the faith-based spiritual meaning of caring for parents, and (3) modest needs and expectations from the formal services – a total reliance on the familial-community service system, while there is some indication of unfulfilled needs that should be addressed by the formal service system.

Conclusion: Intervening parties should be aware of the ‘cultural color,’ and not ignore the unique difficulties this population faces. Policy-makers should acknowledge the patterns of non-formal services used in this community.     

Nerve root anomalies detected intra-operatively technical nuances towards achieving a successful surgical outcome: our experience of three case reports at a tertiary level centre

Objective: Analysis of three case reports of nerve root anomalies detected intra-operatively and its implications.

Design: Data collected during one year prospective non-randomised study using hospital records.

Setting: Single tertiary care centre.

Subjects: 3 patients in one year period.     

GoFAR: improving attention,behavior and adaptive functioning in children with fetal alcohol spectrum disorders: Brief report

Objective: This brief report describes the GoFAR intervention designed to improve attention, behavior, and adaptive functioning in children with FASD, ages 5 to 10 years.

Methods: Thirty children were randomized to one of three conditions: GoFAR; FACELAND, and CONTROL; 25 completed the interventions. Over 10 sessions children and caregivers learned a metacognitive strategy (FAR) designed to improve cognitive control of behavior and adaptive functioning and practiced it during behavior analog therapy. Attention, behavior problems, and adaptive skills were measured pre- and post-intervention.

Results: From pre- to post-testing the GoFAR intervention group improved on the Test of Variables of Attention (TOVA). Both intervention groups improved in Daily Living Skills.

Conclusion: This pilot study demonstrated that children with FASD and their caregivers benefit from a focused intervention designed to improve effortful control of behavior. The study suggests the need for a larger clinical trial to evaluate the intervention’s effectiveness.     

Past is prologue: how to advance caregiver interventions

Objectives: Research on caregiving interventions has increased substantially in recent years. Although many promising approaches have been tested, results are often modest. The goal of this paper is to identify conceptual and methodological issues that could lead to better treatment outcome.

Method: A critical review of the literature on interventions for caregivers of persons with dementia.

Results: A fundamental issue in caregiver interventions is what are appropriate goals for treatment and what outcome measures should be used to address those goals. There also needs to be more testing of the mechanisms by which treatment leads to improvement. Intervention studies should also more regularly examine fidelity of treatment implementation.

Conclusion: Recommendations are made for improving the design of future trials through better attention to the heterogeneity of the caregiving population, improved conceptualization of goals and the use of innovative designs that accommodate differences in caregivers’ needs and resources.     

Self-transcendence,spiritual perspective,and sense of purpose in family caregiving relationships: a mediated model of depression symptoms in Korean older adults

Objectives: This study used structural equation modeling to test the mediated model of late-life depression to understand the mechanisms that account for the direct and indirect effects of spiritual variables and purpose in life on depression within the context of Korean family caregiving relationships.

Method: A secondary analysis study design used data from a study that tested a theory of family interdependence of 157 Korean elder-family caregiver dyads in Seoul, Korea.

Results: Both caregivers’ and elders’ self-transcendence was positively related to their own sense of purpose in life. However, only elders’ spiritual perspective was related to purpose in life. Also, elders’ purpose in life was positively associated with caregivers’ purpose in life. Furthermore, there was a strong negative relationship between elders’ purpose in life and their depressive symptoms, but there was not a significant negative relationship between caregivers’ purpose in life and elders’ depressive symptoms. Last, elders’ purpose in life mediated the negative effects of elders’ self-transcendence and spiritual perspective and of caregivers’ self-transcendence and purpose in life on elders’ depression.

Conclusion: The findings suggest that purpose in life for both the caregiver and elder played an important role in elders’ depression. Self-transcendence also was related to decreased depression in elders. It is suggested that more attention be given to caregiver and elder purpose in life in developing interventions to reduce or avoid elder depression in Korean elders.     

Possible error in the Danish version of the WHO Quality of Life (WHOQOL-BREF) Questionnaire

Background: The WHOQOL-BREF is widely used to measure quality of life.

Aims: The goal of the present study was to use the questionnaire in a doctoral study.

Methods: We studied all the instructions provided by the WHO.

Results: In the Danish version of the WHOQOL-BREF there is a discrepancy between the negatively phrased question 9 and both the syntax file and the verbal instructions for coding the data provided by the WHO.

Conclusions: This is a notification of possible error interpretations in projects that use the questionnaire. This could be corrected by manual correction in the coding process or by changing the negatively phrased question 9.     

Caregiver forgiveness is associated with less burden and potentially harmful Behaviors

Objectives: This study investigated whether caregiver forgiveness of care recipient's (CR's) upsetting behaviors is associated with less burden and potentially harmful behaviors (PHB) by the caregiver.

Method: Seventy-six family caregivers of persons with dementia were recruited by means of convenience sampling through two local dementia service centers in Hong Kong. Caregivers were asked to complete an anonymous questionnaire that assessed CR behavior problems and caregiver burden, PHB and forgiveness.

Results: Results showed that forgiveness partially mediated the associations between CR disruptive behaviors and caregiver burden, and between CR depression and caregiver burden. At the same time, burden partially mediated the relationship between forgiveness and PHB.

Conclusion: The associations between certain behavioral problems and burden were mediated by caregiver forgiveness. Forgiveness also predicted harmful behaviors, both directly and indirectly through burden. Future research should investigate the basis of forgiveness in dementia caregivers and whether forgiveness may constitute another dimension in caregiver interventions.     

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving

Objectives: Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process.

This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress.

Method: A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out.

Results: Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies.

Conclusion: Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.     

Profile and burden of care among caregivers of Ultra-Orthodox Frail Elders

Objective: A paucity of research exists on burden of care (BoC) and factors associated with it among minority groups, such as Ultra-Orthodox Jews. The aims of this study were (1) to portray the profile of Ultra-Orthodox Jewish (UOJ) caregivers and their BoC; (2) to explore relations between care recipients' characteristics, care situations, characteristics of caregivers, and BoC.

Methods: A total of 107 UOJ (66 women, 41 men) family caregivers were interviewed face to face in their homes, using valid and reliable measures.

Results: Participants reported moderate BoC and high level of social support. Caregiver's self-rated health, caregiver's anxiety, and social support emerged as significant predictors of caregiver burden.

Conclusions: Our findings might help social workers and other health professionals to better understand the unique characteristics of the UOJ community and to target caregivers with higher anxiety, lesser social support, and poorer self-rated health in order to reduce their caregiving burden.     

Religiosity and quality of life: a dyadic perspective of individuals with dementia and their caregivers

Objectives: Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members’ religiosity on perceptions of IWDs’ quality of life (QoL). Neither of these issues has been extensively explored.

Method: One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs’ everyday-care values and preferences, including religious preferences. Using an actor–partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs’ QoL.

Results: After accounting for care-related stress, one's own religiosity is not significantly related to IWDs’ or caregivers’ perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs’ QoL, caregivers’ religiosity is positively related to IWDs’ self-reports of QoL, and IWDs’ religiosity is negatively associated with caregivers’ perceptions of IWDs’ QoL.

Conclusion: These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD's QoL. It is important that caregivers understand IWDs’ values concerning religion as it may serve as a coping mechanism for dealing with dementia.     

Internal decompression for spinal stenosis (IDSS) for decompression and use of interlaminar dynamic device (CoflexTM) for stabilization in the surgical management of degenerative lumbar canal stenosis with or without mild segmental instability: our initial results

Introduction: Internal decompression of spinal stenosis (IDSS) and Posterior dynamic stabilization (PDS) form a bridge between decompression laminectomy alone and rigid fusion, by attempting to sustain beneficial effects of decompression and stabilization in an attempt to prevent bad effects of relentless degeneration.

Objective: To evaluate the clinical outcome in operated patient of posterior dynamic stabilization.

Design: Data were collected over 1 year in prospective, nonrandomized follow-up study using outcome scales.

Setting: Single surgeon, tertiary care centre in Mumbai, India.

Described here is the operative technique of posterior dynamic stabilization using CoFlex^TM and clinical outcome of 67 consecutive patients using Visual Analogue Scale and Oswestry Disability Score.     

Coping with the caregiving role: differences between primary and secondary caregivers of dependent elderly people

Objectives: The topic of how primary informal caregivers cope with their caregiving demands has generated significant research. However, little is known about secondary informal caregivers, who often share caregiving responsibilities. This cross-sectional study aims to analyse and compare the use and effectiveness of coping strategies of primary and secondary informal caregivers of dependent elderly people, living at home.

Method: A sample of 180 informal caregivers of dependent elderly people – 90 primary and 90 secondary caregivers – was obtained. The study was conducted in the district of Aveiro (Portugal). The Portuguese version of Caregivers’ Assessment Management Index – CAMI (Nolan, Keady, &; Grant, 1995) was administrated to both sub-samples.

Results: Findings suggest that emotion-cognitive strategies are less efficient for secondary caregivers (e.g. drawing on personal or religious beliefs). Common problem-solving strategies adopted by both types of caregivers involve relying on own their experience and expertise and addressing and finding a solution to the problem. Neither group were highly efficient at managing care-related stress, but both identified benefits from taking time off or maintaining interests outside of caregiving.

Conclusion: These findings can guide professionals in targeting and monitoring interventions aiming to develop caregivers’ effective coping strategies. Besides, engaging secondary caregivers in current available interventions and services, usually targeted to the primary caregiver, is of paramount need, as they can reduce the burden of primary caregivers and delay institutionalisation.     

Do caregiving burden and satisfaction predict loneliness in older care recipients?

Objectives: The goal of this study was to assess the extent to which caregiving burden and satisfaction of primary family caregivers in Israel predict loneliness among their older care recipients.

Method: The study included a convenience sample of 325 dyads of respondents. The short version of Zarit Caregiving Burden Interview and Lawton Caregiving Appraisal measures were used to assess caregiving burden and satisfaction; the de Jong Gierveld Loneliness Scale was used to assess care recipient's loneliness.

Results: The results showed that greater caregiving burden was significantly correlated with increased loneliness, whereas greater caregiving satisfaction was significantly correlated with lower levels of loneliness.

Conclusion: The literature has broadly addressed the association between caregiving burden and satisfaction and the caregivers’ well-being, whereas this association with regard to care recipients’ well-being has been barely examined. The multivariate analyses showed that caregiving burden was insignificant in explaining loneliness, whereas greater caregiving satisfaction was found significant in explaining lower levels of loneliness. The results and implications for further research and practice are discussed.