Toward a Better Understanding of Psychological Well‐Being in Dementia Caregivers: The Link Between Marital Communication and Depression

To read this article's abstract in both Spanish and Mandarin Chinese, please visit the article's full‐text page on Wiley InterScience ( http://interscience.wiley.com/journal/famp ). Dementia research has frequently documented high rates of caregiver depression and distress in spouses providing care for a partner suffering from dementia. However, the role of marital communication in understanding caregiver distress has not been examined sufficiently. Studies with healthy couples demonstrated an association between marital communication and the partners' psychological well‐being, depressiveness, respectively (e.g., Heene, Buysee, & Van Oost, 2005 ). The current study investigates the relationship between caregiver depression and communication in 37 couples in which the wives care for their partners with dementia. Nonsequential and sequential analyses revealed significant correlations between caregiver depression and marital communication quality. Caregivers whose husbands used more positive communication reported less depression and distress. Additionally, caregiver depression was negatively correlated with rates of positive reciprocal communication indicating dependence between the couples' interaction patterns. This study is one of the first to illustrate the relevance of spousal communication in understanding caregiver distress and depression.     

Family caregivers and indicators of cancer-related distress

Increases in the cost of medical care coupled with shorter hospital stays and an aging population are but a few of the reasons why home care for patients has become so important. This study examines variables that contribute to distress among lay-caregivers who provide home care to cancer survivors. Participants consisted of 135 survivor-caregiver dyads in which the caregiver was a member of the survivor's family or a close friend. Measures of caregiver distress were selected from the Ferrell et al. (1995) quality of life tool; predictor variables included cancer survivor and caregiver demographics, physical and emotional health status and behavioural characteristics. Hierarchical regression analysis indicated that, jointly, the three sets of indicators accounted for 35% of caregiver distress. Standardized regression coefficients indicated that relational deprivation (feelings of loss of togetherness, planned activities and contact with other individuals) was the most important predictor of caregiver distress (p<0.01). Female sex, less practice of healthy behaviours, greater number of patient care needs and pessimistic expectations (all ps<0.05) also were significant predictors in the final trimmed model. Results suggest that cancer support services that address the needs of the care receiver with the protection of the family caregiver in mind should be considered.     

Inventory of Overburden in Alzheimer's Patient Family Caregivers with no Specialized Training

Background/Objective: Alzheimer-type dementia is one of the most frequent causes of dependence in an aging population, which combines with a considerable demand for care. Furthermore, when the caregiver is a family member or person without specialized training, such care impacts on that person's health. The Inventory of Overburden in Alzheimer's Patient Family Caregivers with no Specialized Training (IPSO-CA24) was designed to find out the needs of these caregivers and evaluate the caregiver's burden or distress. Method: The psychometric properties of the questionnaire were analyzed (in a reliability analysis, exploratory factor analysis and confirmatory analysis) based on the responses of 255 caregivers. Results: The factor analyses showed a six-factor structure (Reaction to diagnosis, Physical health, Psychological symptomatology (caretaker), Behavioral symptomatology (patient), Knowledge of the illness, and Level of dependence) explaining 66.52% of the total variance with a reliability of .75 to .93. Support was also found for its convergent validity. Conclusions: The IPSO-CA24 responds to the need for an instrument enabling multidimensional evaluation of the burden on the family caregiver without specialized training.     

Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers

The impact of patient suffering on family caregivers is an understudied but important topic. This study of patients with amyotrophic lateral sclerosis (ALS) and their caregivers examined the associations of two components of patient suffering: patient physical symptoms, and mental distress, as well as the patient's support for the caregiver, with caregiver well-being. The sample consisted of 52 patients with ALS and their caregivers. Patients and caregivers each completed a structured survey assessing multiple domains including demographics, health, and well-being. Specifically, patients rated their own physical symptoms and mental distress. Caregivers rated their own daily affect, and the extent to which they perceived the patient as supportive. Caregivers also reported whether or not they had found any benefit in dealing with the patient's illness. Regression analyses yielded significant associations of patient distress with caregiver negative affect; patient support was associated with greater caregiver positive affect, and patient symptoms and support were associated with greater likelihood of caregiver benefit finding. There was a significant two-way interaction of patient symptoms by support, namely, benefit finding was not only more likely with greater physical suffering and patient support, but it was also the case that caregivers who perceived the care recipient as unsupportive could only find benefit when this person experienced intense physical suffering. Support interventions for ALS patients and their caregivers should devote particular attention to how caregivers may be affected by witnessing their loved one's sufferings, as well as identify and address challenges in support exchanges between caregivers and patients.     

The Children’s Attention-Deficit Hyperactivity Disorder Telemental Health Treatment Study: Caregiver Outcomes

The Children’s Attention-deficit Hyperactivity Disorder (ADHD) Telemental Health Treatment Study (CATTS) tested the hypotheses that children and caregivers who received guideline-based treatment delivered through a hybrid telehealth service delivery model would experience greater improvements in outcomes than children and caregivers receiving treatment via a comparison delivery model. Here, we present caregiver outcomes. 88 primary care providers (PCPs) in seven geographically underserved communities referred 223 children (ages 5.5 ? 12.9 years) to the randomized controlled trial. Over 22 weeks, children randomized to the CATTS service delivery model received six sessions of telepsychiatry and six sessions of caregiver behavior management training provided in person by community therapists who were trained and supervised remotely. Children randomized to the comparison Augmented Primary Care (APC) service model received management in primary care augmented by a single telepsychiatry consultation. Caregiver outcomes included changes in distress, as measured by the Patient Health Questionnaire (PHQ-9), Parenting Stress Index (PSI), Caregiver Strain Questionnaire (CSQ) and Family Empowerment Scale (FES). Caregivers completed five assessments. Multilevel mixed effects regression modeling tested for differences between the two service delivery models in caregiver outcomes from baseline to 25 weeks. Compared to caregivers of children in the APC model, caregivers of children in the CATTS service model showed statistically significantly greater improvements on the PHQ-9 (β?=?-1.41, 95 % CI?=?[?2.74, ?0.08], p?<?.05), PSI (β?=??4.59, 95 % CI?=?[?7.87, ? 1.31], p?<?.001), CSQ (β?=??5.41, 95 % CI?=?[? 8.58, ?2.24], p?<?.001) and FES (β?=?6.69, 95 % CI?=?[2.32, 11.06], p?<?.01). Improvement in child ADHD symptoms mediated improved caregiver scores on the PSI and CSQ. Improvement in child ODD behaviors mediated caregiver CSQ scores. The CATTS trial supports the effectiveness of a hybrid telehealth service delivery model for reducing distress in caregivers of children with ADHD and suggests a mechanism through which the service model affected caregiver distress.     

The You-I event: on the genesis of self-awareness

I present empirical evidence suggesting that an infant first becomes aware of herself as the focal center of a caregiver's attending. Yet that does not account for her awareness of herself as agent. To address this question, I bring in research on neonatal imitation, as well as studies demonstrating the existence of a neural system in which parts of the same brain areas are activated when observing another's action and when executing a similar one. Applying these findings, I consider gestural exchanges between infant and caregiver, such as reciprocal smiles and imitative vocalizations. Lacking self-awareness at first, the infant is unaware of her own agency. By returning her unwitting gesture, the caregiver singles out for her—thanks to neural matching—the gesture's kinesthesis. Moreover, the caregiver's smile, imitative vocalization, or other gesture is the form that focusing takes. The kinesthesis of the infant's gesture, in being singled out, is experienced by the infant as what the caregiver is focusing on. It is experienced as being within the focal center. In this way, the infant becomes aware of herself as a bodily entity acting toward the caregiver. Exchanges that involve matching are at first essential, I argue, in making the infant present to herself in action. Matching will cease to be necessary, but self-awareness continues to depend fundamentally on others until the acquisition of language, when the child becomes capable of talking to herself as if she were the caregiver.     

Dementia and Suffering in Nursing Homes

SUMMARY

This paper uses case studies of challenging behaviour associated with dementia to demonstrate, firstly, that disturbed behaviour is often a manifestation of suffering caused by multiple phenomena such as medical problems or the care environment. Addressing these causes instead of simplistically ‘treating the behaviour’ usually reduces the behaviour. Secondly, staff distress with a particular difficult resident is often caused by more general fundamental problems such as a lack of support or knowledge. Addressing these problems reduces staff distress. Finally, results from a Swedish intervention study are presented. They show that suffering for both staff and residents can be reduced, and quality of life improved, by providing increased autonomy for hands-on staff, systematic emotional support, and collaboratively developing care plans based on each resident's emotional and physical needs, rather than the problems they present.     

Caregiver Demand and Parent Distress in Juvenile Rheumatic Disease: The Mediating Effect of Parent Attitude Toward Illness

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7–18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.     

Increasing Family Members' Appreciation of Family Caregiving Stress

Participants read a message discussing the duties of a typical family caregiver (for example, a woman taking care of her elderly mother) and the associated psychological, physical, social, and financial stresses. The message was accompanied by an appeal that was either a control or was altruistic (other-oriented: focusing on the mother/caregiver's well-being) or egoistic (self-oriented: focusing on the child of the caregiver's needs and feelings). Participants who received an altruistic appeal were more appreciative of caregiving stresses than were those given an egoistic or a control appeal. Increasing family members' awareness of the stress involved in family caregiving is a first step in encouraging them to personally intervene on behalf of the caregiver.     

Relationships between Teachers' Occupational Stress and Their Burnout and Distress: Roles of Coping and Negative Mood Regulation Expectancies

Teaching school is a highly stressful occupation. Consequences of this stress are burnout, physical and emotional distress, and choosing to leave the profession. Research on teacher stress and burnout has largely focused on environmental and contextual factors while ignoring personality characteristics of teachers that may have an impact on relationships between job stress and its consequences. The current study has a cross-sectional self-report design, focusing on teachers' negative mood regulation (NMR) expectancies as predictors of their coping, burnout and distress, in response to occupational stress. NMR expectancies are people's beliefs that they can control the negative moods they experience. Participants were 86 primary and secondary school teachers, who filled out questionnaire measures of teacher stress, NMR expectancies, coping, burnout, and distress. Simultaneous regression analyses showed that higher stress on the job did indeed predict greater burnout and distress. Additionally, stronger NMR expectancies predicted more active coping. NMR expectancies also predicted less burnout and distress, independent of stress level and coping. Believing one could control one's negative moods was associated with more adaptive outcomes for teachers. Results argue for the value of examining individual difference variables in research on occupational stress, in particular negative mood regulation expectancies.     

Interpersonal loss in the context of family caregiving: Implications of communal relationships theory

Abstract

Much is known about the emotional costs of providing care to an ill or disabled family member. However, surprisingly little attention has been devoted to investigating how caregiver distress is related to interpersonal loss (i.e., reactions to changes in the typical day-to-day support behaviors that formerly characterized the caregiver–care recipient relationship). Drawing on the theory of communal relationships (e.g., Clark & Mills, 1979, 1993), this study proposes that the magnitude of interpersonal loss that caregivers experience, as well as its contributions to depressed affect, both directly and indirectly (through impact of interpersonal loss on perceived caregiving burden) are likely to depend on the type of relationship that existed between caregiver and care recipient prior to the onset of illness or disability. In this context, several hypotheses and directions for further research are proposed. It is hoped that future researchers will incorporate loss measures into their research and consider how aspects of preexisting relationships influence associations among interpersonal loss and variables (e.g., burden, social support) known to predict caregiver well-being.     

Here's looking at you,kid: attention to infant emotional faces in mothers and non‐mothers

Infant facial cues play a critical role in eliciting care and nurturance from an adult caregiver. Using an attentional capture paradigm we investigated attentional processing of adult and infant emotional facial expressions in a sample of mothers (n = 29) and non‐mothers (n = 37) to determine whether infant faces were associated with greater task interference. Responses to infant target stimuli were slower than adult target stimuli in both groups. This effect was modulated by parental status, such that mothers compared to non‐mothers showed longer response times to infant compared to adult faces. Both groups also responded more slowly to emotional faces, an effect that was more marked for infant emotional faces. Finally, it was found that greater levels of mothers' self‐reported parental distress was associated with less task interference when processing infant faces. These findings indicate that for adult women, infant faces in general and emotional infant faces in particular, preferentially engage attention compared to adult faces. However, for mothers, infant faces appear to be more salient in general. Therefore, infant faces may constitute a special class of social stimuli. We suggest that alterations in attentional processing in motherhood may constitute an adaptive behavioural change associated with becoming a parent.     

Dynandcs in cancer caregiver's health over time: Gender-specific patterns and determinants

Abstract

This study exandned patterns and determinants of three dimensions of caregiver's health of newly diagnosed colorectal cancer patients, i.e. physical, mental and social functioning (N= 148). Physical functioning declined within a 6-month period in female caregivers, while no change was observed in male caregivers. For mental and social functioning, an improvement was observed in male and female caregivers. Change in physical functioning was associated with gender, age, income and initial level. Change in mental functioning was predicted by initial status and positive as well as negative caregiver experiences. Change in social functioning was mainly predicted by initial level and change in patient's dependency. Physical and mental functioning showed the least favorable patterns in female caregivers. The study shows that caregiving may lead to positive health consequences, and underlines the importance of making a distinction between male and female caregivers and of studying caregiver outcomes by using multidimensional assessments.     

The indirect effect of contextual factors on the emotional distress of infertile couples

Few studies were dedicated to study the role of contextual factors, such as the socioeconomic status and urban or rural residence in emotional distress of infertile couples. This study aimed to explore the impact of contextual factors on emotional distress, either directly or by affecting the importance of parenthood in one's life, which in turn affects emotional distress. In this cross-sectional study, 70 couples recruited during hormonal stimulation phase prior to in vitro fertilisation completed clinical and sociodemographic forms and self-report questionnaires assessing representations about the importance of parenthood and emotional distress. Path analysis using structural equation modelling was used to examine direct and indirect effects among variables. Results indicated that socioeconomic status and place of residence had an impact in emotional distress by affecting the representations about the importance of parenthood in one's life. Gender differences were found regarding model paths, suggesting that the social context may have a stronger influence on women's emotional distress than on their partners’ distress. When delineating psychological interventions, health care providers should consider that cultural values about children and parenthood contribute to shape the infertility experience.     

The Caregivers' Attachment and Relationship Education Class: A New and Promising Group Therapy for Caregivers of Individuals with Parkinson's Disease

The authors examined whether a newly developed group therapy, based on principles of attachment theory and emotionally focused couples therapy, can potentially address the unique mental health and relationship difficulties in caregivers of individuals with Parkinson's disease. A comprehensive outreach effort, involving a review of 251 military veterans' medical records, yielded enrollment of seven spousal caregivers in the group therapy. At 1-month follow-up, caregivers who initially reported mild or greater levels of caregiver burden demonstrated statistically reliable declines in psychological distress, relationship distress, or both. Posttreatment surveys indicated positive perceptions in overall helpfulness of treatment goals, as well as positive changes in insight (e.g., greater understanding of the patient's attachment needs) and behaviors (e.g., greater social contact and self-care of the caregiver). Results are considered in the context of inadequate access to treatment for caregivers of spouses with Parkinson's disease or other major medical issues.     

Infant exposure to domestic violence predicts heightened sensitivity to adult verbal conflict

The current study examined whether one‐year‐old infants whose mothers had been victims of domestic violence during the infant's lifetime (exposed; n = 30), compared to those who had not (not exposed; n = 59), would be more likely to experience distress in response to a simulated verbal conflict and whether amount of distress expressed would be influenced by infant temperament. Infants were videotaped during and for five minutes after an experimenter pretended to have a telephone argument. Exposure to domestic violence was related to infant distress following the episode of simulated adult verbal conflict. Temperamental activity, adaptability, and negative mood predicted greater distress only among non‐exposed infants. Findings suggest that while only temperamentally more reactive infants would typically display distress in response to verbal conflict, infants exposed to domestic violence may be likely to display distress in response to verbal conflict regardless of temperament.     

Parental reflective functioning is associated with tolerance of infant distress but not general distress: Evidence for a specific relationship using a simulated baby paradigm

Parental reflective functioning represents the capacity of a parent to think about their own and their child's mental states and how these mental states may influence behavior. Here we examined whether this capacity as measured by the Parental Reflective Functioning Questionnaire relates to tolerance of infant distress by asking mothers (N = 21) to soothe a life-like baby simulator (BSIM) that was inconsolable, crying for a fixed time period unless the mother chose to stop the interaction. Increasing maternal interest and curiosity in their child's mental states, a key feature of parental reflective functioning, was associated with longer persistence times with the BSIM. Importantly, on a non-parent distress tolerance task, parental reflective functioning was not related to persistence times. These findings suggest that parental reflective functioning may be related to tolerance of infant distress, but not distress tolerance more generally, and thus may reflect specificity to persistence behaviors in parenting contexts.     

Psychological Distress in Caregivers of Liver and Lung Transplant Candidates

Although organ transplantation represents a stressful experience for the entire family, surprisingly little research has focused on the adjustment of caregivers. The purpose of this study was to examine what caregivers report to be the greatest benefits and stressors pretransplant, the prevalence of psychological distress and caregiver strain in pretransplant caregivers as compared to normative populations, and the physical, psychological, and demographic variables that predict distress. Fifty-two caregivers of transplant candidates (28 liver and 24 lung) completed a series of questionnaires, including the Psychosocial Adjustment to Illness Scale (PAIS-SR), SF-36 Health Survey, Caregiver Strain Index (CSI), and qualitative questions about benefits and stressors. The most commonly reported benefit of being a caregiver could be categorized as Helping the Patient, and the most common stressors were associated with Uncertainty/Waiting/Fears. Compared to normative samples of caregivers of patients with Alzheimer's disease, caregivers of liver transplant candidates reported more caregiver strain; there were no differences for lung transplant caregivers. Caregiver social functioning was found to be the only significant predictor of caregiver distress, with those caregivers who report greater distress also reporting extreme and frequent interference with normal social activities. Implications of these findings for psychological interventions are discussed.     

Delivering Parent Management Training in an Integrated Primary Care Setting: Description and Preliminary Outcome Data

This paper describes how behavioral health consultants (BHCs) in an integrated primary care setting use evidence-based principles that underlie parent management training (PMT) to assist caregivers of youth with externalizing behavior problems. Illustrated is the decision-making process that BHCs utilize from the moment they receive a patient referral from a primary care provider to how interventions are selected and delivered. When delivering PMT in integrated care, operant-based learning principles underlying PMT are often selected based on a combination of factors, including match with presenting problem, caregiver efficacy, caregiver beliefs about the causes and maintaining factors, and feasibility of implementation. We further present preliminary outcome data on the effectiveness of BHCs’ efforts to use PMT principles in a primary care setting. Participants were 21 caregivers and their children (M_age = 7.76 years, 38.1% female; 66.7% Hispanic) seen for an average of 2.38 visits. Pre-post data provided by caregivers (for youth 11 years or younger) and adolescents (self-report of patients 12–17 years of age) taken at the time of first and last sessions revealed significant reductions in global distress scores and high levels of satisfaction with services received. Findings support the viability of providing brief, focused PMT interventions for pediatric populations seen in primary care.