Post-diagnostic support for persons with young-onset dementia - a retrospective analysis based on data from the Swedish dementia registry SveDem.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

Empathy and support exchanges in couples coping with early-stage Alzheimer's disease.

OBJECTIVES: Research has extensively examined spousal caregiving in Alzheimer's disease (AD), but it remains unclear how people with AD help spousal caregivers. We aimed to describe emotional and practical support that people with AD and their spouses provide to each other and test the role their empathy plays in these support experiences. METHODS: Seventy-two people with early-stage AD and their spousal caregivers independently reported empathy (personal distress, empathic concern, perspective taking) and the frequency and appraisal of support provision. Caregivers reported both partners' sociodemographic characteristics. RESULTS: People with early-stage AD and their spousal caregivers provided support to each other often. Caregivers provided more support but people with AD appraised support provision as more pleasant and less stressful. Lower personal distress in both partners and greater caregiver empathic concern were associated with more frequent caregiver support to people with AD. Greater empathic concern and perspective taking were associated with more pleasant appraisals of helping. Personal distress was positively associated with stress of helping. CONCLUSION: Findings describe support reciprocity in early-stage AD and debunk the myth of people with AD being only recipients of care. We identify risk and resilience in couples per empathy and inform the design of dyadic interventions to promote mutually beneficial relationships in AD.

Predictive Factors of Negative Spillover From Caregiving to Employment Among Japanese Family Caregivers With Older Relatives in a Care Facility.

This cross-sectional study included 211 employed family caregivers with older relatives living in care facilities in Japan. Using multiple linear regression analysis, we examined the caregiving context after institutionalization of an older family member. Specifically, we examined predictors of negative spillover from caregiving to employment among family caregivers. The outcome was the extent of negative spillover. Primary predictors included caregiver characteristics and postinstitutionalization caregiving contexts such as caregiving tasks and dissatisfaction with institutional care services. Among all caregivers, 134 (63.5%) were female, and approximately half of all caregivers reported satisfaction with institutional care services. We found that dissatisfaction with institutional care services and being a female each had a main effect on greater negative spillover. However, they did not have any interacting effect on negative spillover after the institutionalization. Negative spillover did not terminate when older family members were institutionalized. Higher satisfaction with institutional care may reduce negative spillover.

Daily sleep, well-being, and adult day services use among dementia care dyads.

OBJECTIVES: The study aimed to describe daily sleep characteristics for dementia care dyads in the context of adult day services (ADS) use and examine the associations with sleep quality and daytime functioning (fatigue, affect, and behavior problems). METHODS: Caregivers (CG; N = 173) reported daily bedtime, wake time, and sleep quality for themselves and the persons living with dementia (PLWD) across 8 consecutive days (N = 1359), where PLWD attended ADS at least 2 days of the week. On each day, caregivers also reported their own fatigue and affect and PLWD's daytime behavior problems and nighttime sleep problems. Considering the context of ADS use, we compared mean differences in bedtime, wake time, and total time in bed on nights before versus after ADS use. We estimated multilevel models to examine daily sleep-well-being associations. RESULTS: On nights before an upcoming ADS day, care dyads went to bed and woke up earlier, and spent less time in bed. Further, PLWD had better sleep quality the night before an upcoming ADS day. Using ADS during the day buffered the negative impact of PLWD's sleep problems in the previous night, reducing daytime negative affect for caregivers. For caregivers, using ADS yesterday attenuated the association between shorter than typical time in bed and daytime fatigue; it also attenuated the association between PLWD's nighttime sleep problems and lowered daytime positive affect. CONCLUSIONS: Regular ADS use may promote earlier sleep timing and protect against the adverse impact of sleep disturbances on daytime functioning for dementia care dyads.

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.

Family caregivers' distress responses to daily behavioral and psychological symptoms of dementia: The moderating role of relationship quality.

OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are associated with distress among caregivers of persons with dementia (PWD), but less is known about how relationship quality may buffer this association. This study examines the association between daily BPSD and daily perceived distress among family caregivers and the moderating role of relationship quality. METHODS: Data were from 173 family caregivers of PWD from the Daily Stress and Health study. Relationship quality was assessed at the baseline interview; then on each of the 8 following consecutive days, caregivers reported frequency of daily BPSD (six domains) and their respective distress (calculated as daily distress sum and daily distress mean scores) through daily evening phone interviews at home. A 2-level multilevel model approach was employed to differentiate within-person (WP) and between-person (BP) effects. RESULTS: Greater daily BPSD occurrence was associated with higher daily distress (sum and mean scores) at WP and BP levels. However, relationship quality moderated the association between daily BPSD occurrence and daily distress sum scores at both WP and BP levels. Caregivers who reported better relationship quality with the PWD had lower levels of daily distress sum scores in response to daily BPSD occurrence, compared to their counterparts with poorer relationship quality. CONCLUSIONS: This study revealed that relationship quality attenuated the effect of daily BPSD occurrence on caregivers' distress. Future dementia caregiver education and support programs should consider building relationship quality into the personalized program design to improve caregiver mental health and well-being.

Adult day services and dementia caregivers' daily affect: the role of distress response to behavioral and psychological symptoms of dementia.

Adult day services (ADS) provide respite for dementia caregivers and directly reduce exposure to behavioral and psychological symptoms of dementia (BPSD). This study examines the psycho-behavioral mechanism on how daily ADS use may benefit caregivers' daily affect through its impact on the distress associated with BPSD stressor exposure. The sample consists of dementia caregivers (N = 173) who participated in an ADS intervention across 8 days. Multilevel structural equation modeling was conducted to examine the within- and between-person mediating effects of BPSD distress on the direct associations between daily ADS use and daily negative and positive affect. ADS days were associated with lower daily negative affect and higher daily positive affect; the significant within-person effect of ADS use on daily affect was mediated by daily BPSD distress. Findings highlight the association between daily ADS use and caregiver affective well-being. This understanding is important for designing respite and other interventions to help dementia caregivers manage the daily stress of caregiving.

Rehabilitation of persons with dementia: using technology to improve participation.

OBJECTIVES: The current study examined how a technology system, "It's Never 2 Late" (iN2L), may help augment traditional rehabilitation strategies for older adults with dementia by improving engagement in therapy sessions and achieving better functional outcomes. METHOD: The study used a two group quasi-experimental design. Older adults with dementia (N = 96) were recruited from two rehabilitation departments housed within residential care communities. Participants received daily occupational and physical therapy sessions using treatment as usual (TAU) at one site (n = 49) or treatment with iN2L (n = 47) at the other site. A goal attainment approach was used to assess functional outcomes. It was hypothesized that patients whose therapists used iN2L in treatment will show greater attainment of therapy goals and greater engagement during OT and PT sessions than patients receiving TAU. It was also hypothesized that levels and improvement in engagement will mediate the association of treatment type (iN2L or TAU) with greater goal attainment. RESULTS: Participants in the iN2L treatment had significantly higher goal attainment than TAU, significantly higher levels of engagement at baseline, and significantly steeper increases in engagement over the course of therapy. The effects of treatment on goal attainment was significantly mediated by increases in engagement. CONCLUSION: Findings suggest that iN2L technology has the potential to increase treatment engagement and enhance rehabilitation outcomes among older adults with dementia.

Middle-Aged Children's Coping Strategies With Tensions in the Aging Parent-Child Tie.

Middle-aged children may cope in different ways with interpersonal tensions with their aging parents. This study examined coping strategies as a function of parent's age and disability and children's emotions (i.e., guilty feelings and worry). Middle-aged children (N = 378) reported coping strategies when encountering interpersonal tensions with each of parents (N = 482): engagement, acceptance, avoidance, and confrontation. Middle-aged children also indicated how guilty and worried they felt about each parent. Multilevel models indicated that middle-aged children were most likely to use engagement and acceptance strategies, followed by avoidance, and least likely to use confrontation. Results also revealed that middle-aged offspring were more likely to use engagement toward their parents who were older and acceptance toward parents with more disabilities. Furthermore, when middle-aged children had stronger feelings of guilt toward parents, they were more likely to be avoidant and less likely to engage with parents. Worries about parents were positively associated with the use of engagement strategies.

Longitudinal trajectories of subjective care stressors: the role of personal, dyadic, and family resources.

OBJECTIVES: Stressors are critical to the caregiver stress process, yet little work has examined resources that contribute to longitudinal changes in subjective stressors. The present study examines a variety of factors that contribute to changes in subjective stressors across time. METHOD: Dementia caregivers (N = 153) completed an in-person interview and eight daily telephone interviews at baseline, and follow up interviews at 6 and 12 months. Growth curve analyses examine how care- and non-care stressors, respite, dyadic relationship quality, family support/conflict and care transitions (e.g. nursing home placement) are associated with changes in role overload and role captivity across 12 months. RESULTS: Caregivers who transitioned out of their role had higher overload and captivity at baseline. Among caregivers who transitioned out of caregiving, higher captivity at baseline was associated with declines in captivity and overload; more non-care stressors at baseline was linked to increased captivity and greater overload across time. Adult day service use and family support were associated with lesser captivity over time; taking more breaks from caregiving was linked to lower overload. Higher dyadic relationship quality was associated with lower captivity and overload. CONCLUSION: Findings contribute to caregiver intervention efforts by highlighting important resources associated with subjective stressors across time.

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.

Relationship Quality with Parents: Implications for Own and Partner Well-Being in Middle-Aged Couples.

Relationships with parents have significant implications for well-being throughout the lifespan. At midlife, these ties are situated within both developmental and family contexts that often involve the adult offspring's spouse. Yet, it is not known how ties with aging parents are related to psychological well-being within middle-aged couples. This study examined how middle-aged wives' and husbands' views of the current quality of relationships with their own parents (positive and negative) are linked to their own and their partner's psychological well-being. Using a sample of 132 middle-aged couples from Wave 1 of the Family Exchanges Study, we estimated actor-partner interdependence models to evaluate these dyadic associations while controlling for each spouse's marital satisfaction. Both actor and partner effects were observed. With respect to actor effects, wives who reported more negative relationship quality with their own parents had elevated depressive symptoms and lower life satisfaction. Husbands who reported more negative relationship quality with their own parents had lower life satisfaction. In terms of partner effects, husbands had lower depressive symptoms and greater life satisfaction when wives reported more positive relationship quality with their own parents. Finally, the link between wives' positive ties with parents and husbands' lower depressive symptoms was intensified when husbands had less positive relationships with their own parents. Findings suggest that relationship quality with wives' aging parents has implications for both spouses' well-being and may serve as a critical social resource for husbands.

Life Problems and Perceptions of Giving Support: Implications for Aging Mothers and Middle-Aged Children.

Giving support may be a stressful or rewarding experience, little is known about how family members perceive giving support amidst problems or crises. Using a sample of 226 mother-child dyads (mother mean age = 75.04; child mean age = 49.57), we examine how mothers and their middle-aged children perceive giving support in the context of life problems. Actor-partner interdependence models tested whether associations between problems and perceptions of support are moderated by frequency of support given and if associations were stronger for daughters or sons. Children perceived giving support to their mother as more stressful when they had more of their own problems and gave high levels of support. Daughters, but not sons, considered helping their mother more stressful when their mother had more problems and they gave high levels of support. Distinctions between mother-son and mother-daughter dyads demonstrate the merit of a dyadic approach to understanding mother-child relationships.

Care Transitions and Adult Day Services Moderate the Longitudinal Links between Stress Biomarkers and Family Caregivers' Functional Health.

BACKGROUND: Stress biomarkers have been linked to health and well-being. There are, however, few studies on how dysregulation in the hypothalamic-pituitary-adrenal axis and sympathetic nervous system actually affects functional health of family caregivers of persons with dementia. Further, it is not clear whether and how factors affecting caregiving stressor exposures such as care transitions and adult day services (ADS) use may affect such association. OBJECTIVE: First, to examine the association of daily stress biomarkers and functional health over time among family caregivers of persons with dementia. Second, to examine effects of care transitions and ADS use on the association between baseline stress biomarkers and functional health over time. METHODS: At baseline, caregivers provided 5 saliva samples each day during an 8-day diary study, where all caregivers were having a varying number of ADS days per week. There were 2 longitudinal follow-ups at 6 and 12 months on ADS use, care transitions, and caregivers' functional health. The average daily total output across days was computed at baseline for salivary cortisol, the sulfated form of dehydroepiandrosterone (DHEA-s), and salivary alpha amylase (sAA), which were used as predictors of caregivers' longitudinal functional limitation trajectories. Care transitions and total number of ADS days per week at baseline were considered as moderators of the associations between stress biomarkers and health over time. RESULTS: The associations between functional limitation trajectories and daily total outputs of cortisol and sAA were modified by ADS use and care transitions. Among caregivers who experienced a transition, and who used less than average ADS days per week, lower daily cortisol total output and lower daily sAA total output were associated with increasing functional limitations. Caregivers who experienced a transition but used greater than average ADS days per week did not show such patterns of association. No significant effect was found for DHEA-s. CONCLUSION: The study contributes to an important but largely unanswered question regarding implications of stress biomarkers on functional health. Assessments of the association between stress biomarkers and health among family caregivers of persons with dementia need to consider changes in stressor exposures over time, such as care transitions and ADS use.

Exploring the benefits of respite services to family caregivers: methodological issues and current findings.

OBJECTIVES: There is growing emphasis on empirical validation of the efficacy of community-based services for older people and their families, but research on services such as respite care faces methodological challenges that have limited the growth of outcome studies. We identify problems associated with the usual research approaches for studying respite care, with the goal of stimulating use of novel and more appropriate research designs that can lead to improved studies of community-based services. METHOD: Using the concept of research validity, we evaluate the methodological approaches in the current literature on respite services, including adult day services, in-home respite and overnight respite. RESULTS: Although randomized control trials (RCTs) are possible in community settings, validity is compromised by practical limitations of randomization and other problems. Quasi-experimental and interrupted time series designs offer comparable validity to RCTs and can be implemented effectively in community settings. CONCLUSION: An emphasis on RCTs by funders and researchers is not supported by scientific evidence. Alternative designs can lead to development of a valid body of research on community services such as respite.

Assessing the impact on caregivers of patients with schizophrenia: psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ).

BACKGROUND: The Schizophrenia Caregiver Questionnaire (SCQ) was developed to assess the impact on caregivers of caring for patients with schizophrenia. The objective of this study was to develop a scoring algorithm for the SCQ, and evaluate its measurement properties. METHODS: The SCQ was administered to 358 caregivers of patients with schizophrenia included in the observational PATTERN study of stabilized patients with persistent symptoms of schizophrenia receiving outpatient care. SCQ item selection and creation of scores were based on exploration of item response distribution, factor analyses, and Rasch model. Construct validity, reliability, and ability to detect change of the SCQ scores were investigated. RESULTS: The final questionnaire comprised a 'Humanistic impact' supra-domain composed of a global score and four subdomain scores ('Physical'; 'Emotional'; 'Social'; 'Daily life'), and eight other domain scores related to the caregiving role ('Exhaustion with caregiving'; 'Feeling alone'; 'Patient Dependence'; 'Worries for the patient'; 'Perception of caregiving'; 'Financial dependence of the patient'; 'Financial impact of caregiving'; 'Overall difficulty of caregiving'). Two items from the SCQ were deleted. SCQ scores showed very good construct validity: Item convergent/discriminant validity were satisfactory; SCQ scores of caregivers of patients with more severe symptoms were higher indicating more impact (p < 0.05 for all scores); SCQ scores were meaningfully associated with measures of schizophrenia severity (PANSS and PSP) and caregivers' Health-Related Quality of Life (Medical Outcome Survey Short Form 36 items). The SCQ Humanistic impact supra-domain scores demonstrated very good internal consistency reliability (Cronbach's alphas between 0.80 and 0.96) and test-retest reliability (Intraclass Coefficient correlations ranging from 0.75 and 0.87); Other SCQ domain scores showed lower but still acceptable reliability coefficients. SCQ scores clearly increased for caregivers of patients whose schizophrenia worsened. CONCLUSIONS: Overall, the 30-item SCQ demonstrated very good measurement properties supporting its relevance to comprehensively measure the experience of caregivers of patients with schizophrenia.

Older adults' influence in family care: how do daughters and aging parents navigate differences in care goals?

OBJECTIVE: This study seeks to address how older adults influence their daily care when their preferences conflict with those of their adult daughter caregivers. METHOD: Using a sample of 10 dyads (N = 20) of an older adult and adult daughter, we utilize content analysis strategies to analyze in-depth, semi-structured interview data with QSR NVIVO to investigate how older adults influence their care, how daughters respond to such efforts of influence, and how dyads navigate differences in care goals. RESULTS: When there is agreement in goals, dyads report tasks going well and both individuals' requests are honored. When there are differences in care goals, daughters most frequently reason with their older parents, while parents walk away or 'let go' of their requests. Daughters report making decisions for their parents for health or safety-related needs. However, all dyads discuss differences in care goals, whereby parents are perceived as insisting, resisting, or persisting in care. CONCLUSION: Findings illustrate complex patterns of responses by families when navigating differences in daily care goals that carry important implications for research and the development of dyadic-based family interventions.

Resistiveness to care during assistance with activities of daily living in non-institutionalized persons with dementia: associations with informal caregivers' stress and well-being.

OBJECTIVES: Resistiveness to care (RTC) refers to behavior problems that co-occur during assistance with activities of daily living (ADL). RTC are considered challenging, but are mostly studied in institutions with implications for patients and formal caregivers. RTC is associated with agitation, but agitation is considered a separate construct. Detection of RTC may be left out of common assessments of persons with dementia in studies of informal caregiving (e.g. global assessments of dementia behavioral symptoms, standard assessments of ADL function). This study examines how RTC (frequency and caregivers' stress appraisals of RTC) is related to caregivers' well-being. METHOD: 234 caregivers of people with dementia reported care receivers' ADL impairment (eating, bathing, dressing), RTC frequency (of eating, bathing dressing), and their stress appraisals of these behaviors (RTC appraisals). Caregivers also self-reported their role overload, role captivity, and depressive symptoms. Hierarchical linear regression models included independent variables (demographics, ADL impairment, RTC frequency, RTC appraisals) with three separate dependent variables (overload, captivity, depressive symptoms). RESULTS: Two-thirds of informal caregivers reported RTC. Care recipients' ADL impairment was associated with caregiver outcomes, but only before RTC was entered into the models. RTC frequency significantly predicted caregivers' overload, captivity, and depression. RTC appraisals predicted overload and captivity. CONCLUSION: RTC is common in persons with dementia residing at home, and RTC has more negative association with informal caregivers' well-being than assistance with ADL. Adding RTC frequency and appraisal items to standard ADL measures may better estimate caregivers' needs and risk, and identify modifiable environmental features by assessing behavioral symptoms in context.

How can family policies reconcile fertility and women's employment? Comparisons between South Korea and Sweden.

South Korea has extremely low rates of fertility and labor force participation by women during their childbearing years, whereas Sweden has high rates for both. Variations in family policy models may explain differences in fertility and women's employment between the two countries. Drawing upon literature that examines the effects of family policies on fertility and women's employment, this paper compares childcare support for very young children and parental leave policies in South Korea and Sweden. Thereafter, we discuss the importance of providing stronger support for dual-earner rather than single-earner families to reconcile the two objectives of increasing fertility and women's workforce participation. Specifically, it is critical to: (a) enhance the quantity and quality of childcare services for very young children, (b) achieve gender equality in parental leave policies, and

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.