Negative Effects Of Caregiving Research Articles

Young Adult Caregivers for Older Family Members: Setting a New Research Agenda

Abstract Young adults (approximately aged 18 to 29) are frequently involved in caring for older relatives, potentially filling gaps and playing key roles in the network of caregivers. The time is ripe to synthesize the emerging literature on this topic and propose an agenda for future research. This paper identifies key questions for research that will propel the field forward, including: a) Why young adult caregiving warrants distinct consideration from caregiving in midlife or later life, b) Young adult caregivers’ position in the caregiving network and tasks they perform, c) Factors that help determine who becomes a caregiver at this stage of life and who does not, with attention to race/ethnicity, and beliefs about family interdependency. We then address appraisals of caregiving stress and rewards, and potential factors that may buffer the negative impact of caregiving at this stage of life. We extend this discussion to the detriments and benefits of caregiving for well-being. We consider longer-term enduring positive and negative consequences of caregiving at this potentially transformative stage of adulthood. Throughout this paper, we review many of the founding studies and scholars who have laid the groundwork in this emerging field and point out the components of existing models of caregiving that particularly apply to young adult caregivers. We conclude with suggestions for potential policies and programs to allow for young adults to engage in caregiving while also pursuing the roles and activities that align with their values and set them up for a successful adulthood.

Care Partner Burden and Support Services in Dementia.

Informal care partners are essential to the care of people living with dementia, but they often experience significant burden and receive minimal training, support, and resources. This article provides an overview of care partner experiences, factors contributing to burden, and methods for reducing burden of caregiving in dementia. The US Department of Health and Human Services National Plan to Address Alzheimer's Disease and the World Health Organization Global Action Plan for dementia have identified support for dementia care partners as a top priority for research and policy in recognition of care partners' instrumental but underresourced role in dementia care. The psychological, financial, social, and physical costs of caregiving, particularly without necessary knowledge, skills, and resources, can lead to care partner burden. Reassuringly, multicomponent interventions can mitigate burden and other negative consequences of caregiving, especially when they are theoretically grounded, inclusive, and culturally relevant. Health care providers play a vital role in the early identification of care partner burden through brief, regular assessments. With earlier identification and subsequent intervention (eg, education, skills-based training, local and national resources), the experience of burden and negative health outcomes can be mitigated and quality of life for people living with dementia and their care partners can be improved.

The Effect of Autism Spectrum Disorder on Family Mental Health: Challenges, Emotional Impact, and Coping Strategies.

Autism Spectrum Disorder (ASD) impacts not only diagnosed individuals, but also significantly affects the quality of life of both primary and secondary caregivers. These effects are particularly pronounced when compared to caregivers of individuals with other neurodevelopmental disorders. The emotional and physical demands of caring for someone with ASD can profoundly alter family dynamics and interpersonal relationships, creating challenges that require a comprehensive approach to be understood and addressed. The methodological design is a narrative review study, based on a search conducted during May, June, July, and August 2024 in the Scopus, Dialnet, and WoS databases concerning the object of study. As a result, a total of 197 articles were qualitatively analyzed. Of these, 36 articles were selected for a more detailed qualitative analysis, leading to a final sample of 14 documents. The selected studies were examined through qualitative content analysis. The inclusion criteria for this selection were as follows: empirical studies or research published in English or Spanish; open access via the Internet; categories limited to "education/educational research" relevant to the proposed objectives; and specific documents related to students with Autism Spectrum Disorder (ASD). The care of individuals with Autism Spectrum Disorder (ASD) has a significant and multifaceted impact on family life, deeply affecting the mental health of caregivers. These effects manifest in the form of chronic stress, anxiety, and interpersonal difficulties, altering family dynamics. The quality of life of caregivers varies depending on the coping strategies they employ, which are crucial for their emotional well-being. Understanding and optimizing these strategies is essential to mitigate the negative effects of caregiving and improving the overall well-being of families living with ASD.

Cognitive processing, resilience, and family functioning as contributors to posttraumatic growth in family caregivers of patients with Alzheimer’s disease

Objectives The present study examined the existence of posttraumatic growth (PTG) and its association with cognitive processing, resilience, and family functioning in family caregivers of patients with Alzheimer’s disease (AD). Method Family caregivers (N = 114) were surveyed using measures of cognitive processing, resilience, family functioning, and PTG. Data were analyzed using descriptive statistics, Pearson correlations, and multiple regression analyses. Results The average PTG score in the sample was 48.6 (SD = 18.7; range 14–105). Race, education level, severity of the patient’s AD, cognitive processing, resilience, and family functioning explained 25.8% of the variance in PTG (F [9, 95] = 5.025, p < 0.001). Race was significantly correlated with PTG; specifically, non-White caregivers reported higher PTG than White caregivers (p < 0.05). When controlling for race and education level, mild AD, intrusive rumination, and family satisfaction were significant predictors of PTG (p < 0.05). However, deliberate rumination, resilience, and family communication were not significant predictors PTG (p > 0.05). Conclusion These findings provide insight into factors that may influence the development of PTG in family caregivers of patients with AD. Results may inform intervention strategies to mitigate the negative consequences of caregiving and promote PTG in this caregiver population.

Development of Online Training Modules on Dementia Care at Home for Family Caregivers

Introduction To improve the quality of care and reduce the negative effects of caregiving, modules that address the needs of caregivers must be developed. There hasn't been much progress in Indonesia in creating online training programs for dementia care at home. Objective This study aims to develop online training modules on dementia care at home that are especially suited to the needs of family caregivers. Methods The modules were developed using the Sidek Module Development Model (SMDM), which consisted of two stages: [a] developing the module drafts and [b] testing and evaluating the modules. The study involved semi-structured in-depth interviews with fifteen family caregivers caring for older adults with dementia that focused on [i] existing problems and challenges that family caregivers face in caring for older adults with dementia, [ii] the needs of family caregivers in caring for older adults with dementia and self-care, and [iii] strategies to meet those needs. The interview results were analyzed using the collaizi method. Results Seven modules were developed based on the family needs in this study, including aging processes in older adults, dementia and its impact, communication adapted to the older adults’ condition, management of issues arising in older adults with dementia, becoming resilient family caregivers, addressing issues faced by family caregivers, and self-help groups. The module content validity scores ranged between 90.73% and 94.73% based on the respective aspects of the modules, with an overall content validity score of 92.79%. Conclusion The findings suggest that the online training modules on dementia care at home for family caregivers are appropriate and applicable for online training programs aimed to improve the knowledge and abilities of caregivers in providing self-care and care for older adults with dementia.

Perspectives of Minority Ethnic Caregivers of People with Dementia Interviewed as Part of the IDEAL Programme

Postwar migrants from the Caribbean and Indian subcontinent (Bangladesh, India, and Pakistan) to the UK are now experiencing the onset of age‐related diseases such as dementia. Our evidence base, both quantitative and qualitative, documenting the experiences of family caregivers of people with dementia is largely drawn from studies undertaken with white European, North American, and Australasian populations. Consequently, there is a need for research in the field of dementia caregiving to reflect the increasing diversity in ethnic identities of the older adult population of the UK. Using semistructured interviews, we investigated the experiences of 18 caregivers of people with dementia in Black Caribbean, Black African, and South Asian (Indian, Pakistani, and Bangladeshi) communities in England. Participants were recruited from the Join Dementia Research platform and were predominantly female intergenerational carers. We identified the following three themes: motivation to care (spending time with the care recipient and reciprocity), positive and negative consequences of caregiving (rewards and consequences), and the cultural context of caregiving (cultural norms and values supporting caregiving and negative attitudes towards dementia). Our findings develop existing literature by identifying (a) the importance of spending time with the person they care for, (b) the absence of faith as a caregiving driver, and (c) the challenge of watching the declining health of a parent. We highlight how the different motivations to care are intertwined and dynamic. This is illustrated by the linking of obligation and reciprocity in our dataset and positive and negative experiences of caregiving.

PREPARING “EXPERIENCED” CAREGIVERS FOR FUTURE CARE: PERSPECTIVES FROM FORMER CAREGIVERS OF PARENTS WITH DEMENTIA

Abstract Providing care for more than one care partner across adulthood is becoming increasingly common, resulting in a growing number of ‘experienced’ caregivers (those who have been caregivers before and are anticipating or engaging in caregiving roles again). Caregivers have opportunities to develop caregiving skills and experience positive and negative psychological consequences that persist after care roles have ended. Little is known about how these factors shape preparedness in the large and growing group of former adult-child caregivers of parents living with dementia (PLWD) who anticipate future caregiving roles. We conducted a qualitative study of 32 interviews with midlife former caregivers of now-deceased PLWD. Consensual Qualitative Research and grounded theory techniques guided study design and analysis. Analyses demonstrated that preparedness for future caregiving roles was shaped by personal narratives from former caregiving roles across two dimensions: insights and confidence. All caregivers described insights (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner) that contributed to their preparedness. Though some former caregivers also described a positive (i.e., boosted or sustained) sense of confidence, others described a diminished (i.e., restricted or impeded) sense of confidence. Findings suggest that for some former caregivers, past experiences offer cumulative advantages; for others, past experiences may contribute to apprehension towards, or rejection of, future caregiving roles. Entering new roles with diminished confidence may have negative consequences for caregivers’ and care partners’ wellbeing. This presentation will conclude with suggestions for resources that address both insight-based and confidence-based preparedness and are tailored to experienced caregivers.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

Understanding the effects of informal caregiving on health and well-being: Heterogeneity and mechanisms

This study examines the heterogenous effects of informal caregiving on caregivers' health and well-being and the mechanisms of the effects, which remain largely undiscussed in previous literature. We used a combined estimation of fixed effects and the instrumental variables to address unobserved time-invariant individual characteristics and the endogeneity problem between caregivers' health and caregiving status. Using data from the four waves of the Japanese Study of Aging and Retirement collected in 2007, 2009, 2011, and 2013, and covering individuals aged 50 to 75 at the baselines, we found robust evidence of the negative effects of informal caregiving on caregivers' mental health and life satisfaction, but not on their physical health. Regarding heterogenous effects, we found that informal caregiving adversely affected female but not male caregivers' mental health and life satisfaction. Our results also showed that informal caregiving had greater effects on individuals providing care for their mothers-in-law, with a higher socioeconomic status, living with their in-laws, and belonging to younger groups. Our results indicated that the loss of social networks and leisure and social activities were channels through which informal caregiving might negatively affect caregivers’ health and well-being. This study provides suggestions that policy makers may use to mitigate the negative effects of caregiving with targeted interventions, while formulating policies to support informal caregivers.

Association Between Mobile App Use and Caregivers' Support System, Time Spent on Caregiving, and Perceived Well-being: Survey Study From a Large Employer.

BackgroundMobile technology to address caregiver needs has been on the rise. There is limited evidence of effectiveness of such technologies on caregiver experiences.ObjectiveThis study evaluates the effectiveness of ianacare, a mobile app, among employees of a large employer. ianacare mobilizes personal social circles to help with everyday tasks. Through the use of ianacare, we evaluate the associations between coordinating caregiving tasks among a caregiver’s personal support network and outcomes related to the caregiver’s support system, time use, perceived productivity, and perceived health and well-being. Caregiver tasks include tasks such as meal preparation, respite care, pet care, and transportation. Time use is the measure of a caregiver’s time spent on caregiving tasks and how much time they had to take off from work to attend planned or unplanned caregiving tasks.MethodsWe conducted 2 surveys to assess within-participant changes in outcomes for the unpaid, employed, caregivers after 6 weeks of using the mobile app (n=176) between March 30, 2020, and May 11, 2020. The surveys contained questions in three domains: the caregiver’s support system, time use and perceived productivity, and perceived health and well-being. The results of the linear probability models are presented below.ResultsApp use was significantly associated with decreasing the probability of doing most caregiving tasks alone by 9.1% points (SE 0.04; P=.01) and increasing the probability of at least one person helping the primary caregiver by 8.0% points (SE 0.035; P=.02). App use was also associated with improving the time use of the primary caregiver who took significantly less time off work to attend to caregiving duties by 12.5% points (SE 0.04; P=.003) and decreased the probability of spending more than 30 hours weekly on caregiving by 9.1% points (SE 0.04; P=.02). Additional findings on the positive impact of the app included a decrease in the probability of reporting feeling overwhelmed by caregiving tasks by 12.5% points (SE 0.04; P=.003) and a decrease in the probability of reporting negative health effects by 6.8% points (SE 0.04; P=.07) because of caregiving. Although subjects reported that COVID-19 increased their stress attributed to caregiving and prevented them from requesting help for some caregiving tasks, using the app was still associated with improvements in receiving help and lessening of the negative effects of caregiving on the caregivers.ConclusionsApp use was associated with improvements in 7 of 11 caregiver outcomes across three main categories: their support system, time spent on caregiving, and perceived health and well-being. These findings provide encouraging evidence that the mobile app can significantly reduce caregiver burden by leveraging a caregiver’s support network despite the additional challenges brought by COVID-19 on caregivers.

Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study

BackgroundEvidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers’ use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers’ access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers.MethodsA qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs.ResultsA total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers’ access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation.ConclusionStroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.

Family caregivers of people with dementia in the context of the sociocultural stress and coping model: An examination of gender differences

The study assessed gender differences in the associations between familism dimensions, dysfunctional thoughts, and resource and outcome variables in 190 Spanish dementia family caregivers. A theoretical model was tested through path analysis, obtaining an excellent fit of the model to the data. Higher scores in the familial obligations dimension were associated with lower self-efficacy for self-care and obtaining respite and leisure frequency, and higher anxious and depressive feelings, in female caregivers only. Significant between-gender differences were obtained, suggesting that female caregivers holding strong familistic values are more vulnerable to the negative consequences of caregiving compared to male caregivers.

"The stress can be unbearable, but the good times are like finding gold": A phase one modelling survey to inform the development of a self-help positive reappraisal coping intervention for caregivers of those with autism spectrum disorder.

Caregivers of individuals with ASD can experience various practical, psychological, and social demands and need effective ways of coping to ameliorate the negative effects of caregiving. Numerous coping strategies are available, but the literature shows that caregivers can still struggle to cope, suggesting that interventions to support coping efforts could be beneficial. The MRC framework advocates the systematic development and evaluation of interventions, and this study was conducted to inform the future development of a self-help Positive Reappraisal Coping Intervention (PRCI) for these caregivers. The aim was to establish whether positive reappraisal coping strategies were used and associated with greater psychological wellbeing, prior to developing such an intervention. Method. Caregivers of individuals with ASD (N = 112) responded to items from an existing PRCI (Lancastle, 2006; Lancastle & Boivin, 2008), by writing about aspects of caregiving that reflected the meaning of each item. They also completed questionnaires assessing resilience, caregiving burden, and positive and negative emotions. Results. Participants provided significantly more positive responses than negative responses to PRCI items, demonstrating their use of positive reappraisal coping. Thematic analyses showed that positive responses focused on factors such as their loved one’s personality and achievements, the contributions caregivers had made to this person’s progress, the support received, and their own personal development. Positive reappraisal coping was associated with greater resilience, more positive and less negative emotions, and a lesser sense of caregiver burden. Conclusion. This modelling study suggests that positive reappraisal strategies were used by caregivers and associated with greater psychological wellbeing. The findings will inform the development of a self-help PRCI for the caregivers of those with ASD. Future studies will systematically evaluate that PRCI to determine the nature of intervention effects and mediators and moderators of effects.

Caregivers of patients with cancer: perceived stress, quality of life and immune function

ObjectivesTo examine the mediating effect of quality of life (QoL) on the relationship between perceived stress and immune function in Korean family caregivers of patients with cancer.MethodsIn this cross-sectional study,...

Attention control in a trial of an online psychoeducational intervention for caregivers.

In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research.

Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge

Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health-related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer-reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult.

Psychometric Testing of the BRI Unmet Need Instrument: A Comprehensive Measure of Dementia Caregivers' Needs

Compared to non-dementia caregivers, family/friend caregivers of individuals with dementia experience more negative caregiving consequences. One reason is the myriad of negatively impacted life domains including: managing symptoms; family communication; financial and legal matters; and finding and coordinating services. Few psychometrically tested measures exist for assessing the range of potential unmet needs of dementia caregivers. Such a measure would describe the frequency and correlates of unmet needs and provide a key outcome for intervention research. This study tested the psychometric properties of a comprehensive measure of unmet needs, the BRI Unmet Need Instrument. Data from 192 family/friend dementia caregivers was used to test reliability and four validity types. Results showed total unmet needs, as well as its nine subscales, had good reliability (Cronbach’s alpha .70 - .95). Discriminant validity was confirmed through factor analyses of the 45 unmet needs and items in measures of depression and care-related strain. Unmet need items loaded on separate factors that were deemed acceptable (.72-.38). Predictive validity was assessed by the association with depression, which was significant and an acceptable range (r = .22, p < .01). Convergent validity was confirmed by significant associations with three caregiver strain measures, mastery (r = .40, p <.01), emotional strain (r = .19, p < .01), and relationship strain (r = .15, p <.05). Good structural validity for nine predetermined unmet needs subscales was found using principal component analysis (loadings = .82-.39). Results suggest the BRI Unmet Needs Instrument is a ready-to-use, reliable and valid comprehensive measure.

Preliminary Efficacy of an mHealth Mindfulness Intervention With Caregivers of Older Adults With MCI or Dementia

Decades of research have documented the negative effects of caregiving on unpaid caregivers. Caregivers are more likely to suffer from high levels of stress and anxiety, and caregivers of older adults with dementia are at especially high risk. Mindfulness Therapy (MT) is a promising, non-pharmacological technique with proven efficacy and effectiveness in managing stress and anxiety in diverse populations. Mindfulness Coach is an m-health delivered mindfulness therapy intervention developed by the Veterans Affairs National Center for PTSD. The objective of this paper is to report the preliminary efficacy of an 8-week pilot trial of mHealth-delivered mindfulness therapy to alleviate anxiety and caregiver stress in caregivers of persons with dementia. Sixty caregivers of patients with mild cognitive impairment or dementia were recruited to participate in this single group pre-post design study. After receiving an orientation to using the app, participants were instructed to use the app daily to learn about and practice mindfulness skills. At the end of the 8 weeks, there was a significant reduction between baseline anxiety on the Hospital Anxiety and Depression Scale Anxiety subscale (mean = 14.45, SD = 3.36) 15.42, SD = 3.12) and 8 weeks (mean = (t(55)=2.6, p=.012) and perceived stress measured by the perceived stress scale at baseline (mean = 23.59, SD = 3.99) and 8 weeks (mean = 21.12, SD = 3.09), (t(56)=5.94, p<.001). This study offers preliminary evidence that mHealth Mindfulness Therapy strategies may help caregivers manage the stress and anxiety associated with caregiving.

Professionals' understanding of their responsibilities in the collaboration with family caregivers of older persons with mental health problems in Norway.

Research has highlighted the importance of health and social care professionals' collaboration with family caregivers. In the field of mental healthcare, involvement of family members is perceived as beneficial to the recovery process of the care recipient. Furthermore, family care-giving is an essential part of elderly care. It is well documented that family members need support to prevent negative consequences of care-giving. Nevertheless, involvement of and support for family caregivers have not developed into a common practice, and research has identified professional barriers to collaboration with family caregivers in several areas. The aim of this study was to explore professionals' experiences of collaboration with family caregivers of older persons with mental health problems, and how they understood their responsibility towards families. We conducted three focus group interviews with 18 health and social care professionals working in community-based services, in three rural municipalities in Western Norway. The thematic analysis by Braun and Clarke guided the analysis. The findings in relation to the professionals' role and responsibility towards family caregivers are presented in three themes: family caregivers - a resource that needs support; a responsibility with unclear boundaries; and balancing different needs. Professionals recognised family caregivers' need for support and acknowledged the importance of family relationships. However, they experienced dilemmas in performing their dual responsibility of caring for the older care recipient as well as the family member, which they described as having unclear guidelines. They also experienced that they had insufficient knowledge to take on this responsibility. We argue that the exercising of discretion is essential for the professionals' responsibility, and that clarification of their responsibility is needed. We recommend a stronger focus in education on developing competence in the family perspective. Furthermore, the apportionment of professionals' responsibility needs to be formalised, especially when several services are involved in providing care.

Assessing Policy Challenges and Strategies Supporting Informal Caregivers in the European Union

ABSTRACT Cost containment and the preferences of older adults are important stimuli for encouraging the provision of informal care worldwide. Nevertheless, informal caregiving can have negative effects on caregiver’s health, wellbeing, and employment opportunities. Moreover, it is questionable whether informal caregivers can substantially contribute to meeting the increasing demand for care or serve as a substitute for formally provided services. This commentary assesses strategies to remediate the negative effects of caregiving and ultimately to improve informal caregiving and to support their critical role in European long-term care systems. Cash benefits are a particularly common method of supporting informal caregivers; paid and unpaid leave, and flexible work arrangements are the most prevalent measures to support family caregivers within labor market policy, specifically. Providing training and counseling services to individuals engaged in informal care is a strategy used to support caregivers at home. Disparities in the level of support provided to informal caregivers across the European Union need to be addressed. A lack of supporting policies increases the likelihood that caregivers experience negative physical and psychosocial health problems, as well as unemployment and impoverishment.