Positive and negative experiences of caregiving in dementia: The role of sense of coherence.

OBJECTIVES: Sense of coherence (SOC) is increasingly recognized as an important health determinant, particularly for mental health. Part of the evidence comes from informal caregivers in diverse clinical conditions. The extent to which SOC influences caregiving outcomes, however, is relatively under-researched in dementia, particularly regarding positive experiences. We analysed the association of SOC with dementia caregivers' subjective burden, psychological distress and positive aspects of care. METHODS/DESIGN: This is a secondary analysis of cross-sectional data from the Lisbon study of Families of Persons with Dementia, involving a convenience sample of 99 primary caregivers of community-dwelling patients of neurology and psychiatry services. SOC was assessed with the Orientation for Life Scale. Measures of caregivers' outcomes were: the Zarit Burden Interview, the General Health Questionnaire for psychological distress and the Positive Aspects of Caregiving scale. Analyses controlled for demographics, caregiving arrangements, objective burden, social support, patients' neuropsychiatric symptoms and dementia stage. RESULTS: Lower SOC was associated with higher psychological distress (p = 0.001). No significant associations were found for subjective burden (p = 0.081) or positive aspects of caregiving (p = 0.688). Additional analyses showed that lower SOC was associated with less emotional support (p < 0.001) and past psychiatric illness (p = 0.044). CONCLUSIONS: These findings support previous research suggesting that SOC is protective for psychological distress, and extend evidence to the positive aspects of care in dementia. The cross-sectional design and small-scale convenience sampling preclude both causality presumptions and generalizability. SOC assessments may be useful to define subgroups of dementia caregivers at risk for anxiety and depression.

Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers.

BACKGROUND AND OBJECTIVES: This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia. RESEARCH DESIGN AND METHODS: Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain. RESULTS: Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed. DISCUSSION AND IMPLICATIONS: Caregivers' perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers' employment status may have complex associations with their feelings of stress over time.

Measuring the Needs of Family Caregivers of People With Dementia: An Assessment of Current Methodological Strategies and Key Recommendations.

While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers' needs should be conceptualized and measured. This article describes how dementia caregivers' needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers' needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers' needs.

Relationship Quality Between Older Fathers and Middle-Aged Children: Associations With Both Parties' Subjective Well-Being.

Objectives: Relationships between fathers and their children are salient to both parties throughout the life course. Yet little is known about how these ties may affect well-being in later life. This study examined the implications of aging fathers' and middle-aged children's perceptions of father-child relationship quality for their own and the other party's well-being. Method: Using a sample of 103 fathers (M = 77.88 years) and their children (M = 49.92 years) drawn from Wave 1 of the Family Exchanges Study, we estimated actor-partner interdependence models to evaluate associations between each party's perceptions of father-child relationship quality and their well-being. Results: Fathers had elevated depressive symptoms when they reported more negative relationships with children. This association was exacerbated for fathers of daughters when daughters reported a highly negative relationship. Fathers had better self-rated health, however, when they reported more positive relationships with daughters. Children had elevated depressive symptoms and lower life satisfaction when they reported more negative ties with fathers. Finally, sons had lower depressive symptoms when they reported more positive ties with fathers. Discussion: Findings suggest that father-child relationship quality has significant implications for the well-being of both aging fathers and middle-aged daughters or sons.

Cross-cultural adaptation of the Schizophrenia Caregiver Questionnaire (SCQ) and the Caregiver Global Impression (CaGI) Scales in 11 languages.

BACKGROUND: The Schizophrenia Caregiver Questionnaire (SCQ) was developed to provide a comprehensive view of caregivers' subjective experiences of the impacts of caring for someone with schizophrenia. The Caregiver Global Impression (CaGI) scales were designed to assess their perception of the severity of the schizophrenia symptoms, of change in schizophrenia symptoms and in the experience of caring since the beginning of the study. The objectives of the study were to translate the SCQ and CaGI scales in 11 languages [French (Canada, France), English (Canada, UK, Australia), German (Germany), Italian (Italy), Spanish (Spain), Dutch (the Netherlands), Finnish (Finland), and Swedish (Sweden)], to present evidence that the translations capture the concepts of the original questionnaires and are well understood by caregivers of patients with schizophrenia in each target country. METHODS: The different language versions were developed using a standard or adjusted linguistic validation process fully complying with the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) recommended procedures. RESULTS: Interviews were conducted with 55 caregivers of patients with schizophrenia from 10 countries representing the 11 different languages. Participants ranged in age from 28 to 84 years and had 5 to 16 years of education. Women represented 69.1 % (38/55) of the sample. Fourteen out of the 32 items of the SCQ generated difficulties which were mostly of semantic origin (13 items). The translation of the CaGI scales did not raise any major difficulty. Only five out of the 55 caregivers had difficulty understanding the meaning of the translations of "degree" in the expressions "degree of change in experience of caring" and "degree of change in symptoms". CONCLUSIONS: Translations of the SCQ and CaGI scales into 11 languages adequately captured the concepts in the original English versions of the questionnaires, thereby demonstrating the conceptual, semantic, and cultural equivalence of each translation.

Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire.

BACKGROUND: The responsibilities of caring for a person with schizophrenia may significantly impact informal caregivers' lives. The Zarit Burden Interview (ZBI) was originally developed to assess burden among caregivers of people with Alzheimer's disease. OBJECTIVE: This research was conducted to inform the development of a revised version of the ZBI, relevant to caregivers of people with schizophrenia. METHODS: Based on published qualitative research, the questionnaire was reviewed and modified in accordance with industry-standard guidelines. The resulting questionnaire [the Schizophrenia Caregiver Questionnaire (SCQ)] was then completed by 19 caregivers during cognitive debriefing interviews to assess understanding, relevance and comprehensiveness. RESULTS: Review of the ZBI resulted in a number of operational changes to improve face validity and potential sensitivity. Further questions were added based on key concepts identified in existing literature and minor phrasing alterations were made to improve content validity. Findings from caregiver interviews supported the content validity of the SCQ. CONCLUSION: The SCQ provides a comprehensive view of caregivers' subjective experiences of caregiving and demonstrated strong face and content validity. The questionnaire will be important in both clinical assessment and evaluating the efficacy of interventions designed to reduce or alleviate caregiver burden. Future research will seek to establish the psychometric validity of the questionnaire.

The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings.

O impacto da demência em cuidadores informais ou familiares tornou-se uma questão de saúde pública. A escala de sobrecarga "Zarit Burden Interview" constitui um instrumento bem reconhecido de avaliação do impacto emocional, físico e social sobre os cuidadores. Tem vindo a ser utilizada em todo o mundo em estudos epidemiológicos, ensaios clínicos (farmacológicos ou psico-sociais), bem como na investigação de serviços de saúde. O enquadramento inicial na demência estendeu-se a outros contextos clínicos, principalmente em Geriatria e em Cuidados Paliativos. Dadas esta diversidade de aplicações, os aspectos envolvendo a validade e fiabilidade das traduções nacionais são cruciais para assegurar que toda a evidência obtida seja de elevada qualidade. Para além disso, é necessário cuidado na utilização de cut-offs para definir níveis de sobrecarga sobre o cuidador ou de subescalas resultantes de análises factoriaisexploratórias em estudos locais de pequena escala. Tal como sucede com outras traduções de instrumentos de avaliação aplicados no âmbito dos cuidados de saúde, os investigadores e clínicos portugueses devem conhecer o modo de abordar os eventuais enviesamentos quer na utilização da "Zarit Burden Interview" quer na interpretação dos resultados obtidos.

Discrepancy in reports of support exchanges between parents and adult offspring: within- and between-family differences.

Using data from 929 parent-child dyads nested in 458 three-generation families (aged 76 for the oldest generation, 50 for the middle generation, and 24 for the youngest generation), this study investigated how discrepancies in reports of support that parents and their adult offspring exchanged with one another vary both within and between families, and what factors explain variations in dyadic discrepancies. We found substantial within- and between-family differences in dyadic discrepancies in reports of support exchanges. For downward exchanges (from parents to offspring), both dyad-specific characteristics within a family (e.g., gender composition, relative levels of relationship quality, and family obligation) and shared family characteristics (e.g., average levels of relationship quality) showed significant effects on dyadic discrepancies. For upward exchanges (from offspring to parents), however, only dyad-specific characteristics (e.g., gender composition, coresidence, relative levels of positive relationship quality, and family obligation) were significantly associated with discrepancies. Discrepancies in support exchanges were mainly associated with dyad-specific characteristics, but they also appeared to be influenced by family emotional environments. The use of multiple informants revealed that families differ in discrepancies in reports of exchanges, which has implications for quality of family life as well as future exchanges.

Future directions in family and professional caregiving for the elderly.

As the population ages and the expected wave of baby boomers settles into old age, there is a pressing need to examine the people and institutions that care for elders and the ways in which the system will need to adapt during the next 5-10 years to accommodate the needs of the elderly and of their caregivers. This paper examines future directions in this field, identifying the major issues from two perspectives: family caregiving and professional caregiving. Despite extensive research on caregiving, more attention to a series of methodological issues is needed, as is more extensive evaluation of promising intervention models in community and institutional settings. Effective strategies to lower caregiver distress and improve the quality of care can be implemented in efficient ways that manage costs, but the argument for innovations must be made based on efficacy.

Agreement between aging parent's bequest intention and middle-aged child's inheritance expectation.

PURPOSE: This study investigated discrepancies in expectations of aging parents and their middle-aged offspring regarding future inheritances. METHODS: Data from 327 older parent-adult child dyads were analyzed. Using multilevel models, we examined factors (e.g., economic resources, family characteristics, current support exchanges, and beliefs about family obligation) associated with expectations of inheritance. We also explored patterns of correspondence in expectations over inheritance within dyads and what factors are associated with these patterns. RESULTS: We found a significant generational difference in expectations of inheritance, with children less likely to expect inheritances than parents expected to give. Parent's income, number of siblings, and support currently given to children were significantly associated with both parents' and children's positive expectations of inheritance. The effects of child's income, support given to parent, and parent's gender on inheritance expectations differed between parents and children. Compared with discordant dyads (parents intended to leave a bequest, but their child did not expect an inheritance), correspondent dyads (both parents and children expected a bequest) showed higher income of parents and children, more support given to the child, and lower levels of child's filial obligation. IMPLICATIONS: Although bequest decisions are circumscribed by parent's financial resources, our findings suggest that they are also a continuation of established patterns of exchanges. Parents and children form their intention or expectation about inheritance based on different factors, leaving open the possibility of misunderstandings between the generations.

The influence of social factors and health on depressive symptoms and worry: a study of older Vietnamese adults.

OBJECTIVES: Vietnam has a growing older population, many of whom experienced war and social upheavals in their lives. Prior research has described the health of the older population, but little work has explored mental health. The current study examines the frequency and correlates of two mental health indicators: depressive symptoms and worry. METHOD: A representative sample of 600 adults 55 and older stratified by gender (50% women), age (mean=70.33), and rural/urban (50% rural) was recruited in Da Nang, Vietnam and surrounding rural districts. Participants were interviewed in their homes by trained interviewers. Dependent variables were a Vietnamese version of the CES-D and a culturally specific worry scale. RESULTS: Forty-seven percent of the sample had scores above the cut-off for clinical depression and scores on the worry scale were high. Using multiple linear regressions we found that women, the less educated and individuals with more material hardship had higher depressive symptoms whereas rural residents, women, married, and young-old individuals were more worried. Pain, ADL assistance and emotional support were significant predictors of both depressive symptoms and worry, though the direction of the association for emotional support differed. Illnesses were only a predictor of depressive symptoms. CONCLUSION: The high reports of depressive symptoms and worry suggests the need for incorporating mental health screening as part of health programs for older adults in Vietnam. Attention to factors associated with depressive symptoms and worry, such as economic hardship, health problems and lack of emotional support, may contribute to alleviation of symptoms.

Exploring strategies to alleviate caregiver burden: effects of the National Long-Term Care insurance scheme in Japan.

The ever-increasing population of older people with disabilities, including dementia, has been accompanied by a corresponding growth in the number of family caregivers, who are themselves at risk of developing mental and physical health problems. As a result, the need for practical and effective approaches for alleviating caregiver burden has become a major public health concern. One approach involves the development of public policy initiatives to allow the caregiver burden to be borne partly by society as a whole, rather than falling solely on individuals. In 2000, Japan introduced a National Long-Term Care (LTC) insurance scheme that requires adults over the age of 40 years to pay compulsory monthly premiums, with one aim of the program being to reduce caregiver burden. The present paper reviews the effects of this scheme on caregivers' and the general public's perception of caregiver burden and assesses what other measures are needed to further reduce and/or prevent burden. Drawing on recent studies, four questions are addressed: (i) have caregivers' attitudes towards caregiving changed since the implementation of the scheme; (ii) do services provided under the scheme alleviate caregiver burden; (iii) what are the general public's attitudes to and understanding of family caregiving; and (iv) what is the general public's level of understanding of dementia? Results from recent studies suggest that the LTC insurance scheme in Japan appears to be an effective measure for alleviating the burden of caregiving among current family caregivers, but larger studies are needed to determine overall effectiveness.

Discrepancies in reports of support exchanges between aging parents and their middle-aged children.

OBJECTIVES: This study investigated predictors of discrepancies in reports of 5 types of support that aging parents and their middle-aged children exchanged with one another. Predictors included structural factors, including needs and resources and dyadic characteristics, and psychological factors, including family obligation and investment in the relationship. METHODS: Participants included 337 dyads of parents (aged 59-96 years) and their children (aged 40-60 years). Multilevel models assessed the level of discrepancies between dyadic members and examined predictors accounting for the discrepancies. We considered downward (from parent to child) and upward (from child to parent) directions in support exchanges. RESULTS: For upward support from adult children to their parents, children reported that they gave more than their aging parents reported receiving. For downward support from parents to children, the results differed depending on the type of support. Discrepancies between parents' and children's reports were associated with parents' feelings of obligation toward children and children's ratings of the importance of parent-child relationship. DISCUSSION: These results suggest the importance of considering multiple perspectives and the direction of exchanges between generations. Discrepancies in reports of support reflect both self-enhancement and family context and may be an important source of misunderstanding and conflict between generations.

Support to aging parents and grown children in Black and White families.

PURPOSE: Black and White middle-aged adults typically are in a pivot position of providing support to generations above and below. Racial differences in support to each generation in the family remain unclear, however. Different factors may account for racial differences in support of grown children versus aging parents. DESIGN AND METHODS: Middle-aged adults (aged 40-60 years; 35%, n = 216 Black and 65%, n = 397 White) rated social support they provided each aging parent and grown child. Participants reported background characteristics representing their resources and measures of needs for each family member. Interviews also assessed beliefs about obligation to support parents and grown children and rewards from helping. RESULTS: Multilevel models revealed White middle-aged adults provided more support to grown children than Black middle-aged adults. Demands from offspring, beliefs about support, and rewards from helping explained these racial differences. Black middle-aged adults provided more support to parents than White middle-aged adults. Beliefs about support and feelings of personal reward from providing support explained this difference but resources and demands did not. IMPLICATIONS: Racial differences varied by generation (parent or offspring). The prolonged transitions common for White young adults explained racial differences in support of offspring. Middle-aged adults may treat support of parents as more discretionary, with cultural ideas about obligation and personal rewards guiding behaviors.

The nature and cross-domain correlates of subjective age in the oldest old: Evidence from the OCTO Study.

Self-reflections of age and aging are predictors for key outcomes such as mortality, but little is known about the nature and potential antecedents of subjective age in very old age. We used cross-sectional data from the Swedish OCTO study (N = 267; B. Johansson & S. H. Zarit, 1995) and found that almost two thirds of the 84- to 90-year-olds reported not feeling old. Multinomial logistic regression analyses indicated that younger age and better physical functioning as well as higher well-being and mastery beliefs were all related to not feeling old. In multivariate analyses, however, mastery beliefs emerged as the most consistent and robust predictor of subjective age. Our findings suggest that adaptive capacities may be preserved into advanced age and highlight the pivotal role of perceived control for successful aging.

Lewy body dementia: caregiver burden and unmet needs.

Lewy body dementia (LBD) is a common cause of dementia but to date, little is known about caregiver burden. The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers (mean age 56 y; 88% women). The most common initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns about fear of future (77%), feeling stressed (54%), loss of social life (52%), and uncertainty about what to do next (50%). Caregivers reported moderate-to-severe burden; 80% felt the people around them did not understand their burden and 54% reported feelings of isolation with spousal caregivers reporting more burden than nonspousal caregivers. Only 29% hired in-home assistance, whereas less than 40% used respite or adult day care, geriatric case managers, or attended a support group meeting. Lack of service utilization occurred despite two-thirds of caregivers reporting medical crises requiring emergency services, psychiatric care, or law enforcement. Caregivers reported preferences for web-based information, directories of LBD expert providers, information on LBD research, and location of local support groups. These findings highlight significant unmet needs for LBD caregivers and provide targets for intervention to reduce caregiver burden. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers.

The structure of risk factors and outcomes for family caregivers: implications for assessment and treatment.

PURPOSE: We examined the associations among risk factors (e.g., behavioral problems, family conflict) and outcomes (e.g., overload, depression) commonly used in the research literature in order to inform the design of caregiver assessment and interventions. METHODS: A sample of 67 caregivers caring for a family member in the middle stages of dementia were assessed on 15 risk factors and six outcome measures. RESULTS: Risk factors were at best only moderately correlated with one another, suggesting their relative independence. Outcome measures showed somewhat higher correlations with one another, but participants varied in terms of the number and type of outcomes that were elevated. Multivariate results showed that risk factors differed in their contribution to models, predicting various outcomes. IMPLICATIONS: Caregivers possess unique combinations of risk factors and outcomes that suggest the need for individualized or tailored interventions. Designing an effective caregiver assessment and corresponding targeted intervention requires careful planning and selection of appropriate risk factors and outcomes.

Caregiving experiences and knowledge about dementia in Portuguese clinical outpatient settings.

BACKGROUND: Important public health and clinical issues remain unanswered concerning disease-related knowledge and caregiving experiences in dementia. The aim of this study is to describe these dimensions in Portuguese clinical settings and analyze the link between knowledge and burden, and also between knowledge and positive caregiving experiences. METHODS: We studied a non-randomized sample of 116 caregivers of outpatients with ICD10-DCR diagnosis of dementia. Comprehensive assessments included Dementia Knowledge Questionnaire (DKQ), Zarit Burden Interview (ZBI), Caregiving Activity Survey (CAS), Positive Aspects of Caregiving (PAC) and General Health Questionnaire-12 (GHQ). Portuguese translations for DKQ, ZBI and PAC scales had been developed; validity aspects were documented, as well as test-retest reliability coefficients for ZBI (ICC = 0.93) and PAC (ICC = 0.85). RESULTS: Most caregivers were close relatives, female and living with the patient. Although positive aspects of care were reported, burden and distress levels were moderate to high. Knowledge needs were not striking. Distress was moderately correlated to burden, but no associations were found between caregivers' knowledge and ZBI, PAC or GHQ. DKQ scores did not predict PAC nor ZBI scores. A relationship was found between ZBI, as dependent variable, and PAC, GHQ and CAS. CONCLUSIONS: A large proportion of caregivers in this sample, albeit informed about dementia, were at risk of high burden and distress. Knowledge about dementia may not be protective of burden per se, nor did it influence positive aspects of caregiving.