Informal Caregivers Of People Research Articles

Informal Caregivers of People with Dementia in Germany: Psychosocial Characteristics and Unmet Needs.

Caregivers of people with dementia living at home (CPwDh) are likely to be affected by a range of health problems. However, CPwDh are often regarded as accompanying persons and receive less attention in research and care. Little is known about this population and their needs in Germany. However, better knowledge of CPwDH is needed to design effective interventions. The objective of this report is to describe the situation of CPwDh and highlight differences based on sex and living situation. This was a cross-sectional analysis of the psychosocial characteristics of participants in the GAIN trial, a cluster-randomized, controlled intervention trial investigating the effectiveness of a care management program. A total of n = 192 CPwDh were recruited in GP offices, memory clinics or through public campaigns in the German federal state of Mecklenburg-Western Pomerania. The inclusion criteria were an age of 18 years or above, being a CPwDh, written informed consent. In a comprehensive digital assessment, psychosocial variables, burden, and care needs were assessed. Partners, women, and people living in the same household represented the majority of caregivers, and their mean number of needs was 8.7. Overall, participants indicated a mild to moderate burden. There are differences in burden based on sex and living situation, with caregivers living with people with dementia showing less burden and different psychosocial demographics. There is a need for interventions to reduce caregivers' unmet needs in the CPwDh. Such interventions should consider differences in sex and living situation to better address individual caregiver needs.

Virtual reality-based dementia educational programmes for formal and informal caregivers of people with dementia: A scoping review.

To map evidence of the existing virtual reality-based dementia educational programmes and the effects of these educational programmes on dementia formal and informal caregivers. A scoping review. A comprehensive search of nine databases was conducted to find studies from the inception of the databases to October 2023. Two authors independently screened the titles and abstracts related to the eligibility criteria. Full texts of potentially relevant studies were read by one author and checked by a second. Data extraction and synthesis using NVivo 12 were undertaken by one author and checked by two other authors. Nineteen studies published between 2002 and 2022. The four randomised controlled studies and five qualitative studies were of moderate to good methodological quality. The 10 quasi-experimental studies were of weak to moderate quality. Fifteen virtual reality-based educational programmes had a positive influence on formal and informal caregivers, including improving caregivers' perceptions changing attitudes towards people with dementia, while the nursing competence of formal caregivers did not improve in short term. Educational programmes that covered dementia-related information and care strategies better improved the knowledge level of dementia formal and informal caregivers. The qualitative and quantitative studies of moderate to good quality included in this study support the idea that virtual reality-based dementia educational programmes may be a safe and effective way and have potential benefits for improving knowledge, perceptions, attitudes and nursing competence. This scoping review will provide an emerging teaching model for formal and informal caregivers of people with dementia and help them better understand the types and the influence of virtual reality-based dementia educational programmes. PRISMA-ScR. Not required as this review in accordance with the aim to map existing literature from the dementia formal and informal caregivers' perspective.

Experıences of loss and theır management by ınformal caregıvers ın the communıty. Perceıved Qualıty of Lıfe of people wıth chronıc dıseases

Background: Informal caregivers play a vital role in caring for patients with chronic illnesses, but this care can significantly affect their mental health and well-being, particularly after the loss of the patient. Due to the significance of the issue and limited research in the field, it is important to identify factors associated with the mental health of informal caregivers. Method and Material: This study aimed to investigate the experiences of loss and their management by informal caregivers of people with chronic diseases. Specifically, it evaluated the relationship between experiences of loss and (1) mental health and (2) socio-demographic characteristics of informal caregivers. A quantitative survey was conducted on a sample of 98 informal caregivers of patients with chronic diseases, using the Core Bereavement scales BEQ-24 and DASS-21. Results: The data analysis revealed that 25.5% of informal caregivers were prepared to experience loss, while only 12.2% sought psychological support to manage their experiences. Informal caregivers often experienced loss with sadness, loneliness, and nostalgia while recalling memories with the deceased patient. Fewer caregivers experienced guilt, self-blame, and anger or sought to fulfill their emotional and existential needs. The study also found that experiences of loss were associated with symptoms of depression, anxiety, and stress in informal caregivers of people with chronic diseases. Conclusions: The study underscores the impact of caring for patients with chronic illnesses on mental health and wellbeing of informal caregivers, particularly after the loss of the patient. The results highlight the need for interventions to support informal caregivers.

The effect of mindfulness-based interventions on mental health outcomes and wellbeing of informal caregivers of people with mental illness: A systematic review and meta-analysis.

The increasing prevalence of mental illness has resulted in a growing burden on informal caregivers. Mindfulness-based interventions, as a form of psychotherapy, have shown efficacy in alleviating psychological stress and enhancing emotional and physical well-being. However, the utilisation of mindfulness-based interventions for informal caregivers of individuals with mental illness remains limited. The aim of the meta-analysis is to evaluate the impact of mindfulness-based interventions on the mental health and well-being among informal caregivers of people with mental illness. A comprehensive literature search was conducted across seven electronic databases (PubMed, Scopus, Web of Science, Cochrane Library, Embase, APA PsycINFO and CINAHL Ultimate) from the inception of these databases until 20 July 2023. Two authors independently screened the studies and extracted the relevant data. The meta-analysis was performed by using Stata 12.0 software, and the effect sizes were calculated utilising standardised mean difference (SMD) along with their corresponding 95% confidence intervals (CI). The meta-analysis included 13 studies with 1007 participants, and the results demonstrated that mindfulness-based interventions were efficacious in reducing stress (SMD = -0.80, 95% CI [-1.33, -0.28], p = 0.003), depression (SMD = -0.43, 95% CI [-0.62, -0.24], p < 0.001) and caregiver burden (SMD = -0.21, 95% CI [-0.40, -0.01], p = 0.038), and enhancing the mindfulness level (SMD = 0.37, 95% CI [0.09, 0.65], P = 0.010) and quality of life (SMD = 0.22, 95% CI [0.04, 0.39], p = 0.015) among informal caregivers of people with mental illness, but not on anxiety reduction (SMD = -0.19, 95% CI [-0.49, 0.10], p = 0.198). Furthermore, future research should aim to employ more rigorous methodologies to confirm the effectiveness.

Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study.

The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. A methodological study was conducted at the Federal University of São Carlos. The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

A Systematic Review of Intervention Trials Utilizing Biomarkers Among Informal Caregivers of People with Alzheimer's Disease & Related Dementias.

Informal caregivers of people with Alzheimer's Disease and Related Dementias (ADRD) experience unique stressors, reduced quality of life, and report poorer health, compared to non-caregivers. Throughout the last thirty years, researchers have developed and tested various psychosocial interventions and their ability to improve caregiver health. Due to an exclusive focus on self-report methods, however, no existing systematic literature reviews specifically examine intervention studies employing biomarkers; this systematic review aims to address this gap in the literature. In each database (PubMed and Web of Science, respectively), a title search was conducted with the following keywords: "alzheimer*" OR "dementia" AND "caregiv*" AND "intervention", followed by a second search using identical keywords except "intervention" was replaced with "program." Study or intervention protocol articles, exclusively qualitative studies, cultural applicability papers, dissemination studies, descriptive articles or program reports, acceptability/feasibility studies, studies utilizing formal caregiving samples, commentaries, review papers, and meta-analyses, erratums/corrections, measure development articles, factor analyses, and case reports were excluded from the final pool of studies. In this systematic review, the findings of 14 studies are summarized, and are organized based on specific types of biomarkers: neuroendocrine, immune, and autonomic physiological. Overall, the review yielded mixed results, which may, in part, be due to differences in the types of interventions tested, as well as differing biomarker measurement, methodology, and analysis. More biobehavioral intervention trials are needed among ADRD caregivers. Including biological parameters as pre- and post-measures can shed insight into the extent to which interventions may help caregivers heal from the stress of caregiving.

Acceptance and Commitment Therapy Among Informal Caregivers of People With Chronic Health Conditions

Although there is substantial evidence to suggest the health benefits of acceptance and commitment therapy (ACT) among informal caregivers of people with chronic health conditions, the great variation in intervention designs among published studies limits its application. To identify intervention characteristics of ACT that are associated with improved psychological health and to assess the acceptability of ACT among informal caregivers. Seven English- and 3 Chinese-language databases without limits on publication dates, the reference lists of previous reviews, and gray literature were searched up to February 2023. Randomized clinical trials comparing the effect of ACT vs control groups on improving psychological health among informal caregivers. Two reviewers independently screened searched records and extracted data from eligible studies. Random-effects meta-analysis and mixed-effects metaregression were performed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was followed. Psychological health outcomes (eg, depressive symptoms) measured by valid measurements and the acceptability of ACT based on identified parameters. A total of 29 studies with 2010 participants, published between 2015 and 2023, were identified. ACT showed moderate to large effect sizes for improving psychological health at postintervention assessments (Hedges g range, -0.55 [95% CI, -0.98 to -0.12] to -1.14 [95% CI, -1.83 to -0.45]) and at 1-to-3-month and 4-to-6-month follow-ups (Hedges g range, -0.47 [95% CI, -0.69 to -0.25] to -1.29 [95% CI, -2.33 to -0.24]). Multivariable metaregression analysis regarding intervention characteristics found that ACT delivered in a mixed individual- and group-based format, face-to-face, or through more intervention sessions was associated with greater improvements for experiential avoidance (face-to-face: β = -1.170 [95% CI, -2.020 to -0.319]; number of sessions: β = -0.242 [95% CI, -0.353 to -0.130]), depressive symptoms (mixed delivery format: β = -2.583 [95% CI, -4.845 to -0.321]; face-to-face: β = -1.555 [95% CI, -3.002 to -0.108]), or anxiety symptoms (face-to-face: β = -1.241 [95% CI, -2.337 to -0.146]). In general, ACT had low attrition rates (11%), and participants' adherence (51%-80%) and satisfactory ratings (72%-95%) lend support to its acceptability. This systematic review and meta-analysis found that ACT was consistently associated with improvements in psychological health, supporting its application to improve informal care for chronic disease management. This review provides specific details on the design parameters of ACT for achieving greater efficacy.

P39: Predictors of loneliness in Chilean informal caregivers of people with dementia during the COVID-19 pandemic

Objective:The aim of this study was to determine the predictors of loneliness in informal caregivers of people with dementia in Chile during the Covid-19 pandemic.Methods:195 Chilean informal caregivers responded to an online or telephone survey. They were asked about sociodemographic aspects, clinical and caregiving changes experienced by them and the person with dementia during the pandemic, perceived psychosocial support and loneliness.Results:Less years of formal education, lower income, low level of support with care tasks, living with the person with dementia, low social support, high levels of burden and depressive and anxious symptomatology were significantly related to higher loneliness. In contrast, carrying out physical and mental activity was significantly associated with lower feelings of loneliness. Almost half of the variability of loneliness was explained by higher depressive and anxious symptomatology (β = 0.53), low psychosocial support (β = -0.29) and living with the person with dementia (β = 0.16) (adjusted R2 = 0.48).Conclusion:The risk of developing loneliness in informal caregivers of people with dementia is high. Special emphasis should be placed on developing interventions that improve the mental health of this group, as well as increasing their contact with formal and informal support networks. Thus, they would be able to cope with care tasks in a better way, reducing the likelihood of experiencing feelings of loneliness.

ISupport Swiss: a community based participatory approach to culturally adapt the WHO online intervention for family caregivers of people with dementia

Objective:Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.Methods:We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.Results:Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.Conclusion:Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.

The impacts of COVID-19 restrictions on care-givers of people with cognitive impairment and their support needs: a mixed-methods systematic review

Abstract The COVID-19 pandemic and ensuing restrictions/lockdowns have caused significant physical and psychological consequences for people with cognitive impairment who are heavily dependent on their care-givers. However, little is known about the impact on care-givers, the factors that exacerbate their situation and what supports they need. The aims of this paper are threefold: (a) to examine the impact of COVID-19 physical restrictions on both formal and informal care-givers of people with cognitive impairment; (b) to identify attributing factors influencing this impact; and (c) to recognise their support needs. Further, this paper informs future research, policy and practice. Guided by the Joanna Briggs Institute framework, a systematic review was conducted using a mixed-methods convergent integrated approach. Eight databases were searched using keywords related to COVID-19 restriction, dementia care-givers, impacts and care settings, followed by a manual search. The study was limited to primary research published in English between January 2020 and December 2021. Of the 840 records identified, 30 met the inclusion criteria. Service withdrawal and social distancing has effectively led to the reprivatisation of care to the family, particularly women. Care-givers experienced negative impacts including reduced psychological wellbeing and physical health, increased care burden and financial difficulties. A number of clinical attributes and socio-demographic factors influenced the COVID-19 impact on care-givers. Consequently, counselling services, assistance with care and financial support were identified as support needs. Implementation of new support and the strengthening of existing services are recommended to enhance resilience, build capacity to support care-givers in any given situation and mitigate the effects of future outbreaks.

Should Caregivers Also Be Included in Multicomponent Physical-Exercise-Based Interventions for People with a Neurocognitive Disorder? The Caregivers' Perspective.

Informal caregivers of people with neurocognitive disorders (NCDs) may play a decisive role in guaranteeing partners' participation in community-based physical exercise interventions. However, little is still known about their perspective on being involved in such programs that are specifically designed for their partners. This study aimed to explore the views of caregivers of people with NCDs about taking part in a multicomponent physical exercise intervention with their partners and to explore the perceived impact of this program on those caregivers who enrolled in it. An exploratory qualitative study was conducted with 20 caregivers (67.5 ± 13.94 years; seven female) from the "Body & Brain" project. Ten took part in the physical exercise sessions (active-participating caregivers), and the others did not (social-participating caregivers). Data retrieved from semi-structured interviews were analyzed following a thematic analysis approach. Regardless of their participation level, all caregivers reported their inclusion to be important in enhancing their partners' initiation and engagement in the sessions; also, they all identified personal gains. Active-participating caregivers reported exercise-related benefits on general health, enjoyment, and social connectedness. Social-participating caregivers considered this intervention an opportunity for respite and appreciated being involved only occasionally (i.e., occasional gatherings or telephone contacts). The findings support the inclusion of caregivers in physical exercise interventions designed for partners with NCDs, considering their decisive role in the partners' adherence and engagement and due to the perceived gains. Future community-based interventions designed for people with NCDs should consider giving caregivers the opportunity to choose whether they want or not to be actively involved in the exercise sessions. Further studies with larger samples are needed to verify these results, comparing caregivers' point of view at baseline and post-intervention.

Development and Initial Evaluation of Web-Based Cognitive Behavioral Therapy for Insomnia in Rural Family Caregivers of People With Dementia (NiteCAPP): Mixed Methods Study.

Informal caregivers of people with dementia frequently experience chronic insomnia, contributing to stress and poor health outcomes. Rural caregivers are particularly vulnerable but have limited access to cognitive behavioral therapy for insomnia (CBT-I), a recommended frontline treatment for chronic insomnia. Web-based delivery promises to improve insomnia, particularly for rural caregivers who have limited access to traditional in-person treatments. Our team translated an efficacious 4-session standard CBT-I content protocol into digital format to create NiteCAPP. This study aimed to (1) adapt NiteCAPP for dementia caregivers to create NiteCAPP CARES, a tailored digital format with standard CBT-I content plus caregiver-focused modifications; (2) conduct usability testing and evaluate acceptability of NiteCAPP CARES' content and features; and (3) pilot-test the adapted intervention to evaluate feasibility and preliminary effects on sleep and related health outcomes. We followed Medical Research Council recommendations for evaluating complex medical interventions to explore user needs and adapt and validate content using a stepwise approach: (1) a rural dementia caregiver (n=5) and primary care provider (n=5) advisory panel gave feedback that was used to adapt NiteCAPP; (2) caregiver (n=5) and primary care provider (n=7) focus groups reviewed the newly adapted NiteCAPP CARES and provided feedback that guided further adaptations; and (3) NiteCAPP CARES was pilot-tested in caregivers (n=5) for feasibility and to establish preliminary effects. Self-report usability measures were collected following intervention. Before and after treatment, 14 daily electronic sleep diaries and questionnaires were collected to evaluate arousal, health, mood, burden, subjective cognition, and interpersonal processes. The stepped approach provided user and expert feedback on satisfaction, usefulness, and content, resulting in a new digital CBT-I tailored for rural dementia caregivers: NiteCAPP CARES. The advisory panel recommended streamlining content, eliminating jargon, and including caregiver-focused content. Focus groups gave NiteCAPP CARES high usefulness ratings (mean score 4.4, SD 0.79, scored from 1=least to 5=most favorable; score range 4.2-4.8). Multiple features were evaluated positively, including the intervention's comprehensive and engaging information, caregiver focus, good layout, easy-to-access intervention material, and easy-to-understand sleep graphs. Suggestions for improvement included the provision of day and night viewing options, collapsible text, font size options, tabbed access to videos, and a glossary of terms. Pilot-test users rated usefulness (mean score 4.3, SD 0.83; range 4.1-4.5) and satisfaction (mean score 8.4, SD 1.41, scored from 1=least to 10=most satisfied; range 7.4-9.0) highly. Preliminary effects on caregiver sleep, arousal, health, mood, burden, cognition, and interpersonal processes (all P<.05) were promising. Adaptations made to standard digital CBT-I created a feasible, tailored digital intervention for rural dementia caregivers. Important next steps include further examination of feasibility and efficacy in a randomized controlled trial with an active control condition, a multisite effectiveness trial, and eventual broad dissemination. ClinicalTrials.gov NCT04632628; https://clinicaltrials.gov/ct2/show/NCT04632628.

Burden of care and coping strategies among informal caregivers of people with behavioral and psychological symptoms of dementia in rural south-western Uganda

BackgroundCaregiving is a draining role that inflicts a significant level of burden upon caregivers for older people with Behavioral and Psychological Symptoms of Dementia (BPSD). Caregiver burden is associated with poor health outcomes for both the people with BPSD and their caregivers. This study explored the burden of care and coping strategies used by informal caregivers of older people with BPSD in rural Southwestern Uganda.MethodsThis was a qualitative study among informal caregivers of older people with BPSD in Rubanda and Rukiga districts. We conducted in-depth interviews with a purposive sample of 27 caregivers using an interview guide. The interviews were conducted in the local language, audio recorded, transcribed, translated into English, and thematically analyzed.ResultsThere were two major themes: caregiver burden and coping strategies. Caregiver burden was described as financial, physical, psychological and social. Caregivers mainly used emotion-focused coping strategies (religious coping, acceptance and emotional support seeking). Problem-focused coping strategies (planning) and dysfunctional coping strategies (self-distraction) were used to a lesser extent.ConclusionInformal caregivers of people with BPSD adopted both emotional and problem-focused coping strategies to cope with the burden of care for people with BPSD. Such coping strategies seemed to lighten the burden of caring, in the long motivating the caregivers to continue with the caring role.

The effectiveness and health-economic evaluation of “Partner in Balance,” a blended self-management program for early-stage dementia caregivers: study protocol for a cluster-randomized controlled trial

BackgroundInformal caregivers of people with dementia are crucial in dementia care. However, they are insufficiently supported and report caregiver burdens, which urges the need for cost-effective interventions aimed at supporting caregivers. This paper presents the design of a study evaluating the effectiveness, cost-effectiveness, and cost-utility of a blended self-management program for early-stage dementia caregivers.Methods/designA pragmatic, cluster randomized controlled trial with a shared control group will be conducted. Participants will be informal caregivers of people with early-stage dementia and will be recruited by local care professionals. Randomization will be carried out at the level of the care professional level in a ratio of 35% to 65% (control arm vs. intervention arm). Participants in the control arm will receive care as usual and the intervention arm will receive the blended care self-management program “Partner in Balance” within a usual care setting in the Netherlands. Data will be collected at baseline and at 3-, 6-, 12-, and 24-month follow-ups. The primary outcome for effectiveness (part 1) is care management self-efficacy. For the health-economic evaluation (part 2) total care costs and the quality of life for individuals with dementia (cost-effectiveness) and quality-adjusted life years (cost-utility) will be the base case analysis. Secondary outcomes (parts 1 and 2) will include depression, anxiety, perceived informal caregiving stress, service-use self-efficacy, quality of life, caregivers’ gain, and perseverance time. A process evaluation (part 3) will investigate the internal and external validity of the intervention.DiscussionIn this trial, we plan to evaluate the effectiveness, cost-effectiveness, and cost-utility of “Partner in Balance” among informal caregivers of people with dementia. We expect to find a significant increase in care management self-efficacy, and the program to be cost-effective, and provide valuable insights to stakeholders of “Partner in Balance.”Trial registrationClinicalTrials.gov, NCT05450146. Registered on 4 November 2022.

Extent of caregiver burden among informal caregivers of persons with severe mental disorders in rural South Africa.

Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.

Dementia in metaphors: A qualitative study among informal caregivers of people with dementia from migrant and ethnic minority groups

IntroductionPeople with dementia from migrant and ethnic minority (MEM) groups often receive suboptimal care. Differences in perceptions, values and preferences, and linguistic barriers may complicate communication between persons with dementia, their families and healthcare professionals. Metaphor analysis can provide unique insight into the lifeworld of people with dementia and their informal caregivers. This study identified the metaphors with which informal caregivers of persons with dementia from diverse cultural-linguistic backgrounds understand and discuss dementia. MethodsWe conducted 7 focus groups (n ​= ​42) and 12 interviews (n ​= ​13) with informal caregivers of persons with dementia living in the Netherlands from six different cultural backgrounds: Dutch, Chinese, Turkish, Moroccan, Surinamese, and Dutch-Antillean. Interviews, in the native tongue of participants, were analyzed for the presence of direct and indirect metaphor. ResultsThe results indicate a conspicuous lack of metaphor to reflect on the nature and experience of having dementia. Two typical conceptual metaphors in health communication (journey/war) are virtually absent in all MEM groups. Furthermore, results suggest a one-sided and negative outlook on dementia, with an emphasis on persons with dementia as ‘childlike’ or ‘crazy’. ConclusionOur results suggest a lack of extensively available sophisticated (metaphorical) language to consider daily life with persons with dementia. There is a clear need to address the stigma and lack of medical knowledge surrounding dementia in these MEM groups and to carry out more cross-linguistic and cross-cultural research to explore which metaphors aid understanding and lead to the empowerment and restoration of self-worth of people with dementia.

Encontro de mulheres poderosas: estratégia de intervenção em terapia ocupacional social com cuidadoras informais de pessoas com deficiência intelectual

Abstract Objective This paper analyzes the experience of a group called “Meeting of Powerful Women” developed by occupational therapists in a Service for Coexistence and Strengthening of Bonds of Basic Social Protection of the Unified Social Assistance System, with women who are informal caregivers of people with intellectual disabilities. Method This is a retrospective, exploratory and descriptive study, based on document analysis of the group participants' reports, where consultations were carried out with diverse sources such as reports developed during the interventions, image bank and field diaries of the analysis. The data were interpreted through the theoretical and methodological assumptions of Social Occupational Therapy. Results The interventions, through conversation rounds, thematic activity workshops and a photo essay, promoted a space for reflection and exercise of female protagonism and the strengthening of the support network and social participation. Gender themes were addressed based on the participants' daily life and experiences, such as: overload, sexism, sociocultural beliefs, sexuality and objectification of the female body. Conclusions The group facilitated the strengthening of bonds and the creation of social support networks and the (re)construction of life projects that valued other occupational roles, favoring the deconstruction of the strict figure of woman-mother-caregiver.

Meeting of powerful women: social occupational therapy intervention strategy with informal caregivers of people with intellectual disabilities

Resumo Objetivo Este trabalho analisa a experiência de um grupo denominado “Encontro de Mulheres Poderosas” desenvolvido por terapeutas ocupacionais em um Serviço de Convivência e Fortalecimentos de Vínculos da Proteção Social Básica do Sistema Único de Assistência Social, com mulheres cuidadoras informais de pessoas com deficiência intelectual. Método Trata-se de estudo retrospectivo, de caráter exploratório e descritivo, com base em análise documental dos relatos das participantes do grupo, onde foram realizadas consultas a fontes diversificadas como relatórios desenvolvidos durante as intervenções, banco de imagens e diários de campo da análise. Os dados foram interpretados através dos pressupostos teóricos e metodológicos da Terapia Ocupacional Social. Resultados As intervenções, por meio de rodas de conversa, oficinas de atividades temáticas e um ensaio fotográfico, promoveram um espaço de reflexão e exercício do protagonismo feminino e o fortalecimento da rede de suporte e da participação social. Foram abordadas temáticas de gênero a partir do cotidiano e das experiências de vida das participantes como: sobrecarga, machismo, crenças socioculturais, sexualidade e objetificação do corpo feminino. Conclusões O grupo propiciou o fortalecimento de vínculos e a criação de redes de suporte social e a (re)construção de projetos de vida que valorizaram outros papéis ocupacionais, favorecendo a desconstrução da figura estrita de mulher-mãe-cuidadora.

Coping profiles of family caregivers of people with schizophrenia: differentiations between parent and sibling caregivers

Background Prior research on informal caregivers of people with schizophrenia (PWS) has primarily focused on parental caregivers. However, siblings also play an important role in the recovery process of PWS. Aims The aim of this study is to compare the coping profiles of family caregivers according to whether they are siblings or parents of the PWS. Method Parent and sibling caregivers (N = 181) completed the Family Coping Questionnaire (FCQ), which assessed their coping strategies. Results The results reveal that parents and siblings do not use the same coping strategies and styles. Three coping profiles were identified depending on the caregiver’s relationship with the PWS. Most parents displayed an undifferentiated profile (96.7%), while siblings were more heterogeneously distributed among the undifferentiated profile (58.3%), problem-focused profile (37.5%), and emotion and social support-focused profile (4.2%). Conclusions These findings suggest that the coping capacities of family caregivers to deal with the illness of their sibling or child with schizophrenia are diverse and that it is important to differentiate among them. This would enable these caregivers to benefit from support that could be tailored to their specific needs.

190 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): FACTORS ASSOCIATED WITH THE BURDEN EXPERIENCED BY CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract Background To date, little research has been carried out exploring the burden experienced by informal caregivers of People with Dementia (PwD). We explored factors that influence the burden experienced by caregivers of PwD over 12 months. Methods Fifty-two PwD and their informal caregivers were recruited by convenience sampling to the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed model analyses were used to investigate associations of caregiver burden (measured by the Zarit-Burden Interview; ZBI) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety, depression, and caregiver distress); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, transportation needs, education level, occupation and living situation of the PwD, and employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, and indices of dependence of PwD. Results Across all domains, caregiver burden significantly increased over time (p&amp;lt;0.001) and less burden was experienced by caregivers of older PwD (p&amp;lt;0.05). In PWB, higher caregiver depression levels predicted higher levels of caregiver burden (p=0.033). In the SCR domain, caregivers of PwD who were independent in their transport needs experienced lower levels of burden (p=0.002). No other factors within the PFH or MED domains reached significance in predicting caregiver burden. Conclusion This longitudinal analysis elucidates potential predictors of caregiver burden and highlights the need for future research to be carried out in this area. In particular, psychological well-being in caregivers was shown to significantly impact on the experience of burden. Interventions to alleviate caregiver burden should be tailored to include support for psychological well-being.