Does Avoiding Distressing Thoughts and Feelings Influence the Relationship between Carer Subjective Burden and Anxiety Symptoms in Family Carers of People with Dementia?

Anxiety remains understudied in family carers of people with dementia. Understanding factors that moderate the relationship between stressors and anxiety symptoms in this population is critical to inform interventions. This study examined whether generic experiential avoidance (AAQ-II) and experiential avoidance specific to caregiving-related thoughts and feelings (EACQ) moderate the relationship between subjective burden (ZBI-12) and anxiety symptoms (GAD-7) in carers of people with dementia. The first model (R2 = .66, ∆R2 = .03) exploring the moderating effect of AAQ-II demonstrated a significant interaction term between AAQ-II and subjective burden. The second model (R2 = .53, ∆R2 = .03), exploring the moderating effect of EACQ, demonstrated a significant interaction term between EACQ and subjective burden. These results provide evidence that carers with higher levels of experiential avoidance may be particularly prone to the negative effect of subjective burden on anxiety symptoms. Clinical implications for assessment of experiential avoidance and its treatment in carers of people with dementia are discussed.

Factors affecting the quality of life of family carers of people with dementia: the role of carer anxiety.

The role of anxiety on the quality of life of family carers of people with dementia is somewhat neglected in the carer literature. The current study aimed to investigate the impact of common risk factors (i.e., care recipient's neuropsychiatric symptoms, carer depression, and burden) and anxiety on QoL. This cross-sectional study recruited 89 family carers. Most of the participants were looking after a spouse with Alzheimer's or mixed dementia. A multiple regression analysis was conducted with carer QoL as a dependent variable. All risk factors (i.e., people with dementia's neuropsychiatric symptoms, carer depression, anxiety, and burden) were entered into the model simultaneously as independent variables. The model's R2 was 33%. The results demonstrated that anxiety was the only significant independent variable predicting carer QoL (ß = - 0.34, p = 0.03, 95% CI: - 0.64 to - 0.04). These results indicated that having more symptoms of anxiety was associated with worse QoL as measured by the ICEpop CAPability measure for Older people (ICECAP-O). These findings suggested that improving carer's anxiety may be particularly important in promoting QoL among family carers of people with dementia. Future interventions should target this variable to achieve the desired result of improving carer QoL.

Cross-cultural analysis of the role of ambivalent feelings for understanding caregivers' depressive symptoms.

OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are considered to cause ambivalent feelings in caregivers that may contribute to understanding their depressive symptoms. Transnational research is needed in order to increase our knowledge about the cross-cultural equivalence of theoretical models to understand caregivers' mental health. The aim of this study was to cross-culturally analyze the association between BPSD, ambivalent feelings and depressive symptoms in two samples of family caregivers of people with dementia from Spain and the UK. METHODS: Participants in this study were 432 caregivers who completed measures of BPSD, ambivalent feelings and depressive symptoms. The association between the assessed variables was tested through path-analysis, with differences between countries tested through multigroup analysis. RESULTS: The results suggest that the influence of BPSD on caregivers' depressive symptoms is indirect, through ambivalent feelings. The observed associations were equivalent between countries and explained a significant percentage of the variance of depressive symptoms. CONCLUSION: The findings of this study provide, for the first time, evidence of equivalent cross-cultural paths analyzing the role of ambivalent feelings for understanding caregivers' depressive symptoms. The practical implications of these results are discussed.

Family Carers of People with Dementia in Japan, Spain, and the UK: A Cross-Cultural Comparison of the Relationships between Experiential Avoidance, Cognitive Fusion, and Carer Depression.

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model (N = 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression (ß = .10) and its indirect effect on carer depression through cognitive fusion (ß = .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples.Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

Examining the Impact of Different Components of Sleep Quality on Anxiety Among Family Carers of People with Dementia.

Existing interventions for family carers of people with dementia tend to be less effective for anxiety than for depression. Therefore, identifying factors affecting carer anxiety is important to inform future interventions. This study conducted 2 multiple regression analyses using a sample of 91 family carers. The first regression model (∆R2 = .24), exploring the impact of demographic variables and carer stressors, demonstrated that hours of caring (ß = .33) and overall sleep quality (ß = .28) were significant predictors of anxiety. To further investigate the impact of sleep quality, the second model (∆R2 = .24) focussed on exploring the differential impact of various components of sleep quality on anxiety. Findings demonstrated that subjective sleep quality (ß = .33) and sleep disturbances (ß = .22) were significant predictors. Hours of caring per week, subjective sleep quality and sleep disturbances seem to be critical for treating anxiety in family carers. Future studies should investigate whether targeting these variables could improve carer anxiety.

Internet-delivered guided self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): a qualitative study of carer views and acceptability.

PURPOSE: To explore carers' views and acceptability of internet-delivered, therapist-guided, self-help Acceptance and Commitment Therapy (ACT) for family carers of people with dementia (iACT4CARERS). METHODS: A qualitative approach with semi-structured interviews was employed with family carers (N = 23) taking part in a feasibility study of iACT4CARERS. The interviews were audio-recorded, transcribed and analysed using thematic analysis. RESULTS: Four overarching themes were identified: 1) usefulness and relevance of the content of the sessions, 2) sense of connectedness, 3) the impact of the intervention on participants and 4) acceptability of the online delivery. Positive carer experiences and intervention acceptability were facilitated by learning helpful ACT skills, perceiving the content of the session as relatable to the carers' needs, feeling connected to other carers and the therapist during the intervention, noticing the benefits of the intervention and the user-friendliness of the online platform. Recommendations for a full-scale trial were identified, such as the inclusion of some "face-to-face" interactions (e.g., via video call) between carers and therapists to facilitate a bidirectional interaction and the provision of an additional aide-memoire to improve the learning experiences. CONCLUSION: Overall, the intervention was acceptable to the family carers. The proposed recommendations should be considered in a full-scale trial.

The Psychometric Properties of the Spanish Reinforcement Sensitivity Theory - Personality Questionnaire (RST-PQ) and its Relationship with Everyday Behaviors.

This study aimed to adapt and validate the Spanish version of the Reinforcement Sensitivity Theory-Personality Questionnaire (RST-PQ; Corr & Cooper, 2016) and to demonstrate how RST constructs are associated with a variety of everyday behaviors. To achieve this goal, three studies have been conducted. In Study 1, a direct translation of the items from English to Spanish was pilot-tested in a sample of 139 students and a descriptive analysis of items was conducted. Moreover, a reverse translation and comparison between the two English versions were carried out by the lead author of the original questionnaire and the items were refined accordingly. In Study 2, the questionnaire's internal structure was assessed using exploratory and confirmatory factor analyses and the predictive validity was assessed using the Criterion Set of Act Clusters in a sample of 1,281 participants. Finally, a study of convergent validity with other measures of personality was performed in Study 3 with 190 participants. The obtained results suggested that the RST-PQ has adequate psychometric properties and the convergent validity results with other personality measures replicate findings from previous research. Having a Spanish language version of the RST-PQ is important, not only to advance RST research but also to demonstrate that this theoretical approach contributes to the prediction and explanation of different behaviors whether they are healthy or pathological ones.

The Psychometric Properties of the Spanish Reinforcement Sensitivity Theory – Personality Questionnaire (RST-PQ) and its Relationship with Everyday Behaviors

This study aimed to adapt and validate the Spanish version of the Reinforcement Sensitivity Theory–Personality Questionnaire (RST-PQ; Corr & Cooper, 2016) and to demonstrate how RST constructs are associated with a variety of everyday behaviors. To achieve this goal, three studies have been conducted. In Study 1, a direct translation of the items from English to Spanish was pilot-tested in a sample of 139 students and a descriptive analysis of items was conducted. Moreover, a reverse translation and comparison between the two English versions were carried out by the lead author of the original questionnaire and the items were refined accordingly. In Study 2, the questionnaire’s internal structure was assessed using exploratory and confirmatory factor analyses and the predictive validity was assessed using the Criterion Set of Act Clusters in a sample of 1,281 participants. Finally, a study of convergent validity with other measures of personality was performed in Study 3 with 190 participants. The obtained results suggested that the RST-PQ has adequate psychometric properties and the convergent validity results with other personality measures replicate findings from previous research. Having a Spanish language version of the RST-PQ is important, not only to advance RST research but also to demonstrate that this theoretical approach contributes to the prediction and explanation of different behaviors whether they are healthy or pathological ones. (AU)

Internet-delivered guided self-help acceptance and commitment therapy for family carers of people with dementia (iACT4CARERS): a feasibility study.

OBJECTIVES: The feasibility of research into internet-delivered guided self-help Acceptance and Commitment Therapy (ACT) for family carers of people with dementia is not known. This study assessed this in an uncontrolled feasibility study. METHOD: Family carers of people with dementia with mild to moderate anxiety or depression were recruited from primary and secondary healthcare services in the UK. Participants were offered eight, guided, self-help online ACT sessions adapted for the needs of family carers of people with dementia with optional online peer support groups. Pre-defined primary indicators of success included recruitment of 30 eligible carers over 6 months and ≥70% completing at least two online sessions. RESULTS: Thirty-three participants (110% of the target sample) were recruited over 6 months and 30 participants (91%) completed two or more sessions, and thus both indicators of success were met. Further, 70% of participants completed seven or all eight sessions, and 27% of participants were lost to follow-up, but none of the reasons for early withdrawal were related to the intervention. CONCLUSION: This study supports the feasibility, including recruitment and treatment completion. A full-scale trial to assess the clinical- and cost-effectiveness of the intervention including its long-term effects is warranted.

What are the educational and support needs of family carers looking after someone in the early stages of Alzheimer's disease? A qualitative retrospective approach.

The current study aimed to identify the educational and support needs of family carers of people with dementia in the early stages of dementia by employing a qualitative approach with retrospective semi-structured interviews with family carers of people in the later stages of Alzheimer's disease (AD). Semi-structured individual interviews were conducted via telephone or Microsoft Teams video call. Purposive sampling was used to recruit twelve family carers of people with moderate or severe AD. An interview guide was used to explore the retrospective views of the carer's educational and support needs in the early stages of AD. The interviews were audio-recorded transcribed and analysed using thematic analysis. Three overarching themes were identified. Theme 1 highlighted that family carers experienced frequent and overwhelming need to fulfil a family obligation and feelings of guilt to seek help, which acted as barriers to seeking support, in the early stages. In theme 2, family carers rarely received support in the early stages and available resources were limited to self-help materials. Finally, in Theme 3, family carers wanted to receive interpersonal tailored support to seek practical advice and to learn psychological skills to build resilience in the early stages to overcome emotional challenges. The development of interventions that are specifically designed for family carers in the early stages is critical. The key components to be considered for future interventions are discussed.

Factors Related to the Quality of Life in Family Carers of People With Dementia: A Meta-Analysis.

OBJECTIVES: This meta-analysis aimed to (1) quantitatively synthesize evidence of factors related to the quality of life (QoL) of family carers of people with dementia and (2) explore moderating factors that may influence the strength of the relationship between such potential predictive factors and carer QoL. METHODS: Studies that investigated correlations between patient/carer factors and QoL in unpaid family carers of people with dementia and were published in English, Spanish, Portuguese, or Japanese were included. RESULTS: Thirty-three studies were identified. The pooled correlations with carer QoL (effect size) were significantly large for depression (-0.58), significantly moderate for subjective burden (-0.47), and significantly small for people with dementia's neuropsychiatric symptoms (-0.24). These results indicated to be robust in the context of publication bias. The results of subgroup analyses demonstrated the social and economic development status of the country where study participants resided did not moderate these effects. CONCLUSION: Carer depression, subjective burden, and people with dementia's neuropsychiatric symptoms may play a critical role in maintaining QoL of family carers regardless of the social and economic circumstances.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom.

The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom / Desafios no cuidado a pessoas com demência: comparando questões-chave entre Brasil e Reino Unido

ABSTRACT. The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

RESUMO. O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.

Escala de Apoyo Parental: Nuevos estudios de estructura interna y su relación con variables socioeconómicas / Parental Support Scale: New studies of internal structure and its relationship with socioeconomic variables

En la literatura se destacan numerosas variables que contribuyen a predecir el rendimiento académico. En tal sentido, el apoyo parentales considerado como una causa distal temprana del mismo. Sin embargo, existen resultados contradictorios en cuanto a su contribución, debido a los diferentes modos de operacionalizar dicho constructo. El objetivo del trabajo que se informa consistió en continuar los estudios de adaptación de la Escala de Apoyo Parental, iniciados por Aparicio y Cupani (2008). Específicamente se obtuvo evidencia de estructura interna y se exploró la contribución explicativa que realiza el apoyo parental en el rendimiento académico de los estudiantes, considerando el tipo de institución a la que asisten (pública o privada) y el nivel socioeconómico de sus padres. Los resultados indican que se logró replicar la estructura original de cuatro factores de la Escala de Apoyo Parental (Sehee & Hsiu-Zu, 2005). El estudio de consistencia interna indicó valores aceptables para tres de las cuatro escalas definidas teóricamente. Tanto en instituciones educativas públicas como privadas se observó que la percepción de apoyo parental se incrementa cuando el desempeño de los alumnos es bajo. Particularmente, la aspiración educacional de los padres y la supervisión que realizan sobre sus hijos contribuyeron a explicar el rendimiento académico de los estudiantes, en colegios públicos y privados, respectivamente. Con respecto al nivel socioeconómico, las familias de nivel medio-alto participan más activamente en la educación de sus hijos. Se discuten los resultados, se sugieren posibles estrategias de intervención y se destacan las limitaciones del estudio realizado.

One of the main purposes in literature related to the field of education has been to identify the variables that contribute to predict academic performance. Particularly, parental support is considered as a distal factor that operates early over time (Byrnes & Miller, 2007). Nevertheless, studies have not identified how parental support triggers the students' academic performance due to the different ways in which this construct has been operationalized. Since in our context it is available an adapted Scale of Parent Support (Aparicio & Cupani, 2008), the present work aims to continue the psychometric studies of the instrument. Specifically, a study of internal structure (confirmatory factor analysis) was developed and explanatory contributions to the academic performance of students were investigated, considering the socioeconomic status of parents and type of institution attended by the students. In this article, participants were 403 adolescents (male and female). They were attending to the third year of high school, in public and private schools of the city of Córdoba (Argentina), and they were between ages 13 to 17 (M = 14.27; SD = .93). The instruments were a questionnaire on socioeconomic status (Comisión de Enlace Institucional, 2006) and a Scale of Parental Support (Aparicio & Cupani, 2008). The students' academic performance was operationalized by the average achieved in the Mathematics during the two semesters of the school year. The results replicated the original four-factor structure of the Scale of Parental Support (Sehee & Hsiu-Zu, 2005). The analysis showed satisfactory internal consistency values for three of the four scales theoretically defined (Communication: .82; Supervision: .77; Parent Educational Aspiration: .77, and Involvement: .61). Both in public and in private schools, it was observed that the perception of parental support increases when student's performance is low. In particular, the educational aspirations of parents and the supervision of their children help to explain the academic performance of students in public and private schools, respectively. With regard to socioeconomic status, it was observed that the families of medium-high status participated more actively in the education of their children. Note that one of the limitations is the way in which the academic performance is measured in Argentina. Indeed, qualifications came from informal assessments designed by the teachers, so that they can be influenced by the particular guidelines of each institution and/or the educational framework of each teacher. Whereas the variables involved in student learning are numerous -among them, not only parental support perceived by students but other propensity factors (personality traits, skills, self-efficacy beliefs, for example) and even the characteristics of the institution-, the results of this study allow an approximation of how the support received by the parents, particularly the Monitoring and Aspiration, contribute to the academic performance of students. These observations have an impact on education because they might be useful to develop programs to maintain and enhance parental involvement in the education of their children. For example, it would be important to work with parents before the school year to encourage communication and participation in their children's educational process.