Negative Effects Of Caregiving Research Articles

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.

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.

The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

BackgroundProvision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity.MethodsData of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity.ResultsFive point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected.ConclusionsOur study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.

Role of Occupational Therapy in Facilitating Participation Among Caregivers of People With Parkinson's Disease: A Systematic Review.

Caregivers play a critical role in facilitating the performance of people with Parkinson's disease (PD). Knowledge on how occupational therapy practitioners can mitigate the negative effects of caregiving is needed to enable caregiver participation. To explore the effectiveness of interventions within the scope of occupational therapy practice for caregivers of people with PD to facilitate or maintain their participation in the caregiver role. We conducted a systematic review of the literature published in CINAHL, MEDLINE, PsycINFO, and OTseeker between 2011 and 2019. Article reference lists were also hand searched for additional articles. Study Selection and Data Collection: Articles were screened and evaluated using the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines. The review was conducted in accordance with steps outlined by the American Occupational Therapy Association's Evidence-Based Practice Project. Six articles met the inclusion criteria. Interventions in each article were distinct, prohibiting theme development. Overall, the strength of evidence was low, and the risk of bias was high. None of the studies included in this review were obtained from the occupational therapy literature. Little evidence is available to support interventions within the scope of occupational therapy practice for caregivers of people with PD. Existing evidence suggests that interventions need to be flexible (e.g., in terms of time, cost, and delivery method) and tailored to the unique needs of this population. What This Article Adds: There is a continued need to develop occupational therapy interventions that support participation in the caregiving role for caregivers of people with PD.

To pay attention or not: The associations between attentional bias towards negative emotional information and anxiety, guilt feelings, and experiential avoidance in dementia family caregivers.

Caring for a relative with dementia has been linked to negative consequences for caregivers’ psychological health, such as anxiety or guilt. Cognitive theories of psychopathology propose that attentional bias towards negative stimuli contribute to the development and maintenance of emotional disorders and clinical symptomatology. However, attentional bias has scarcely been explored in dementia family caregivers. The aim of this study was to examine the relationship between attentional bias and anxiety symptomatology, guilt feelings, and experiential avoidance in a sample of dementia family caregivers. Participants were 226 dementia family caregivers. Attentional bias was measured using a novel priming adaptation of the dot-probe task. The sample was divided into high and low anxiety symptomatology, guilt feelings, and experiential avoidance groups. The results revealed two opposite patterns of emotional information processing in dementia family caregivers. While anxiety was found to be associated with an attentional preference for negative information, experiential avoidance was related to attentional avoidance of this information. Although guilt was also related to an attentional preference for negative information, this relationship was no longer significant when controlling for anxiety levels. These inflexible attentional patterns may have negative clinical consequences, given that in both cases relevant information necessary for adaptive coping with the stressful situation of caregiving may be unattended to or omitted.

Caregiving Together: The Relationship Between Paid and Family Caregivers in the Home

Family caregivers provide the lion’s share of care that allows older adults with functional impairment to remain living at home. Yet as care needs grow, many older adults and their families turn to paid caregivers (e.g. home health aides, personal care attendants, and other direct care workers) to provide additional support. While evidence suggests that paid and family caregivers work together to provide increasingly complex care at home, research that describes this important collaboration is limited. In this symposium, we present innovative and interdisciplinary research that highlights the overlap between family caregiving and long-term care workforce research. We begin by presenting two studies that focus on populations where paid caregivers may have outsized impact on family caregivers: Reckrey et al report that receipt of 20+ hours of paid caregiving per week was associated with less caregiver strain among family caregivers of those with advanced dementia and Falzarano et al report that home care hours mediated the association between caregiver stressors and negative effects of caregiving among long-distance family caregivers. Franzosa et al then describe home health aides’ perceptions of relationship dynamics as aides and family members negotiate care tasks in the home. Finally, Gallopyn et al explore scenarios where paid and family caregiver roles blur (e.g., family caregivers receiving payment for providing care, paid caregivers with extensive experience as family caregivers). Taken together, these studies describe critical ways paid and family caregiver experiences are intertwined and highlight the importance of ongoing research about this collaboration.

Feasibility and Acceptability of an mHealth Delivered Mindfulness Therapy for Caregivers

Decades of research have documented the profound, negative effects of caregiving on unpaid caregivers. Mindfulness Therapy (MT) is a promising, non-pharmacological technique with proven efficacy and effectiveness in managing stress, depression and anxiety in diverse populations. While the evidence-base for MT in caregiving is growing, traditional MT (8+ hours of face-to-face treatment with trained providers) is likely not a realistic treatment model for most caregivers due to lack of trained personnel, time constraints of the caregiver, and reimbursement issues. Therefore, in order to meet the unique needs of caregivers of older adults with cognitive impairment, an innovative delivery model is required. MHealth can be a useful tool to deliver behavioral interventions, as it overcomes barriers of traditional psychotherapy such as provider availability, scheduling conflicts, and cost. The objective of this paper is to report the feasibility, acceptability and preliminary efficacy of a pilot trial of mHealth delivered MT for stress and caregiver burden in caregivers of persons with dementia. The average age of participant was 63.2 years old. After two weeks, 93% of participants reported using the mindfulness app for an average of 48.38 minutes per week. At eight weeks, 88% of users reported using the mindfulness app for an average of 35 minutes per week. At 8 weeks, 100% of users reported practicing mindfulness without using the app for an average of 45.6 minutes per week. MHealth mindfulness therapy appears to be a feasible method of delivering mindfulness to caregivers of older adults with memory impairment.