Interventions For Caregivers Of Persons Research Articles

Feasibility and Preliminary Impact of a Web-Based Mind Body Intervention for Older Dementia Caregivers.

Mind-body interventions focused on intentional breathing and movement have been found to mitigate the negative effects of caregiving such as such as stress, psychosocial distress, and emotional distress associated for persons living with Alzheimer's disease and related dementias. The objective was to assess the feasibility and acceptability and preliminary impacts of our 12-week mind body intervention "Gentle Yoga and Yogic Breathing" for caregivers of persons living with dementia on health outcomes including mutuality, depression and anxiety, loneliness and social support, quality of life, and physical function. We conducted a single-group cohort study in which 20 caregivers were enrolled. Data were collected at baseline and at the 12-week post-intervention endpoint. The intervention was acceptable; 75% (n = 15/20) completed the study; 16 completed post-study questionnaires. Very few experienced technical issues; 31% (n = 3) most commonly reported as poor internet connectivity, 75% (n = 12/16) perceived a health benefit, 88% (n = 14/16) perceived improved day-to-day mood, and 100% (n = 16/16) would recommend the intervention to other caregivers. Although there was minimal change from baseline to 12 weeks, for health outcomes, there were very small improvements noted in anxiety and overall health. There were no reported adverse events. The intervention was well received and is feasible and acceptable for future studies of stress and health management interventions for caregivers of persons living with dementia.Registered with https://www.ClinicalTrials.gov (NCT03853148).

DEVELOPING A CONCEPTUAL MODEL TO ASSESS ACTIVE ENGAGEMENT WITHIN A DEMENTIA CAREGIVER INTERVENTION

Abstract Active engagement is identified as an effective component of psychoeducational interventions for caregivers of persons living with dementia. There are many approaches to active engagement; however, limited assessment of this component within interventions reduces optimization and standardization. To fill this gap and increase transparency, we aimed to strengthen active engagement by developing Enhancing Active Caregiver Training (EnACT), an arts-based intervention designed to help caregivers address the behavioral symptoms of dementia. The intervention uses multi-sensory activities, including interacting with caregiver-informed vignettes, to foster engagement and process caregiving experiences. We partnered with caregivers of persons living with dementia (n=9) to iteratively refine EnACT through six focus groups. The purpose of this presentation is to report the process we took to identify how intervention participants actively engaged with EnACT. Focus group data were analyzed using process coding to identify the patterns of participant engagement with 17 intervention activities. The process codes were mapped to create a diagram of participant engagement for each activity. These diagrams were used to develop the EnACT Cycle of Engagement, a conceptual model illustrating how participants engaged with the intervention. The three-step model illustrates that: 1) antecedents (personal and intervention) contribute to 2) interaction with EnACT through participation, contribution, and application, which leads to 3) EnACT’s hypothesized proximal outcomes (capacity to adapt and appraisal of caregiving demands) and distal outcomes (perceived stress and caregiver well-being). The EnACT engagement model will be tested in the forthcoming randomized control trial assessing feasibility and acceptability.

PPA TELE-SAVVY: RESULTS OF AN ONLINE PILOT INTERVENTION WITH CAREGIVERS OF PERSONS WITH PRIMARY PROGRESSIVE APHASIA

Abstract Primary Progressive Aphasia (PPA) results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions eventually progressing to widespread cognitive decline consistent with generalized dementia. Most interventions available to dementia caregivers do not match PPA caregiving families’ needs for tailored psychosocial support. This pilot study is an adaptation of Tele-Savvy, an evidence-based online psychoeducation caregiver program. Goals: (1) address communication and other cognitive and behavioral challenges facing informal caregivers of those living with PPA throughout disease progression, and (2) help caregivers achieve competence in their role. Nine spousal caregivers were recruited to a pilot mixed methods study, which included seven 90-minute weekly videoconference sessions, mindfulness exercises and homework assignments. Participants provided feedback throughout the intervention. Pre-post effects were assessed on PPA knowledge, mood, caregiver burden, perceived stress, competence, quality of life and dyadic relationship. A focus group was held 4 weeks post-intervention. Pre-post results revealed a post-intervention trend toward decreased depression and reported relationship strain. Thematic analysis of recorded videos and transcribed weekly sessions, in addition to an evaluation focus group revealed four themes: a) Increasing knowledge of PPA; b) Learning communication and connection strategies; c) Initiating care planning; d) Integrating intellectual and emotional aspects of PPA caregiving. Participants were provided findings for their feedback. This study demonstrated the feasibility of offering an adaptation of the Tele-Savvy intervention for caregivers of persons with PPA. An informed second pilot study will be held in Spring 2023.

Cultural adaptation of the WHO-iSupport intervention for caregivers of persons with ADRD in Uganda

Background:Family caregivers of persons with ADRD face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected global increase in the number of people with dementia (82 million by 2030 and 152 million by 2050), plus a current Dementia prevalence among persons 60 years and older in Uganda, ranging from 5.5% to 20%, there is paucity of information regarding the psychotherapeutic management of challenges that family caregivers of persons with ADRD go through in many settings in sub-Sahara Africa, including Uganda. This study will contribute to the cultural adaptation of the WHO-iSupport that is an appropriate intervention for caregivers of persons with ADRD in Uganda.Objective:To investigate the current approaches that caregivers use in the support of persons with ADRD, so as to inform the adaptation of the WHO iSupport intervention for Uganda.Methods:This is a cultural adaptation study involving adaptation and pre-test the WHO-iSupport for family caregivers of persons with ADRD in Wakiso, Uganda. We are using a group consensus method that includes a professional translator and independent groups of bilingual experts. Caregivers of patients with ADRD are being recruited into the study. Data will be collected by the researcher and trained research assistants.Outcomes:The primary outcome of this study is the adaptation of the WHO-iSupport psychotherapy.Analysis:Primary analyses will be based on Intention to treat (ITT) principle to avoid any biases that may occur by subjective choice of ineligible subjects. Summary statistics like age will be given as a mean (SD) while for categorical data will be given as a proportion and summarized in tables and graphs.Utility:The proposed study is instrumental as it will be the first known study in our setting that provides a step-by-step guide in the cultural adaptation of an intervention for care giving of persons with ADRD. The A-iSupport is a caregiver focused intervention, that promises better health and care outcomes for family caregivers of persons with ADRD, thus reducing the health care load on mental health workers.

P113: Psychosocial interventions for dementia grief- a systematic review

Objective:Dementia grief can be described as a caregiver’s anticipatory grief experience due to losses occurring before the care recipient’s physical death. Among other things, these losses can include loss of memory, intimacy, communication, relationship resolution, and family identity. Psychosocial interventions have been developed to address and reduce these pre-loss grief reactions. The objective of this systematic review was to synthesize the evidence on existing dementia grief interventions for caregivers of persons with dementia (PwD).Methods:Electronic databases Web of Science (SSCI), PsycArticles, Psychology and Behavioral Sciences Collection, PsycINFO, PSYNDEX Literature with PSYNDEX Tests and MEDLINE were searched from September 2016 to September 2021. The systematic review was carried out following PRISMA guidelines and it was registered to the PROSPERO database (CRD42021268998). All adult family or friend carers of older persons with dementia were included. All types and severity stages of dementia were included except studies about young onset dementia and dementia grief. Also, family carers could not be bereaved.Results:The 12 included studies contained multifaceted interventions with heterogenous formats. Eight studies had a quantitative, two a qualitative and two a mixed method design. Sample size ranged from two to 273 participants. Interventions included elements of psychoeducation, cognitive and emotional therapeutic strategies based on CBT, acceptance- based and mindfulness-based strategies. The interventions showed statistically significant small to moderate effects on dementia grief. In addition to the effects on dementia grief, the interventions also had a positive impact on mental health-related variables such as burden, depression, empowerment, and resilience.Conclusion:There has been an increase in dementia grief interventions suggesting that dementia grief has been acknowledged as a valid and important construct to describe the dementia caregiver experience. It remains unclear whether health care providers know about and implement elements of the grief interventions in every day clinical encounters with dementia caregivers. Thus, future research should determine the practicing health care providers’ knowledge about dementia grief and its available interventions. Furthermore, it should be examined whether the intervention effects are transferable to caregivers of patients with other terminal illnesses or degenerative disorders, or whether they must be modified.

A meta-analysis of mindfulness-based interventions for improving mental health and burden among caregivers of persons living with dementia.

Mindfulness-based interventions are becoming increasingly popular and are effective in lowering depressive symptoms and caregiver burden. However, the overall efficacy of therapies in stress and anxiety management is unreported, and no study to date has performed a subgroup analysis to investigate the intervention dose response of outcomes. To quantitatively identify the effectiveness of mindfulness-based interventions for caregivers of persons living with dementia. A comprehensive literature search of six databases was undertaken from the date of inception to June 18, 2023. The DerSimonian-Laird model with random effects was used to examine the overall effect and its heterogeneity in the studies. Version 2 of the risk of bias (RoB 2) tool was employed to analyze the publication bias of each randomized study. Funnel and forest plots were created to represent the findings. Thirteen randomized trials were included in the meta-analysis. Mindfulness-based interventions significantly reduced stress and anxiety of caregivers of persons living with dementia. In addition, interventions provided for ≥8 weeks were beneficial in reducing depression in caregivers. However, mindfulness-based interventions did not offer significant benefits in reducing depression or caregiver burden immediately after the intervention. Mindfulness-based interventions have the potential to help caregivers of people living with dementia. This study could be used as a model for future research into and implementation of mindfulness-based therapies for caregivers. Mindfulness-based therapies appear to alleviate stress and anxiety but are ineffective in reducing depression and burden in caregivers of persons living with dementia. Well-designed RCTs with more rigorous methodology and a larger sample size should be conducted to firm the conclusion of the effectiveness of mindfulness-based interventions for caregivers of persons living with dementia.

The development and refinement of the enhancing active caregiver training (EnACT) intervention for caregivers of persons living with dementia

AbstractBackgroundBehavioral symptoms affect up to 90% of persons living with dementia.1 While interventions have been developed to help caregivers manage symptoms,, these interventions show only weak to moderate effect size.2 The most successful psychoeducational interventions use active‐engagement techniques to facilitate the application of knowledge and skills.2‐5 Yet the optimization and systematic testing of active‐engagement techniques is lacking.2‐6 By optimizing active‐engagement techniques, we may strengthen caregiver preparation. Enhancing Active Caregiver Training (EnACT) is an arts‐based intervention aimed at engaging dementia caregivers by using techniques that allow them to better manage common behavioral symptoms associated with dementia. The purpose of this presentation is to describe the process of developing and refining EnACT in preparation for feasibility testing with dementia family caregivers.MethodAs part of a larger sequential qualitative‐to‐quantitative mixed‐method design to develop and test EnACT, we implemented an iterative three‐stage review process to prepare intervention materials for focus group feedback and future pilot testing. This included review from: 1) a caregiving expert/clinician, 2) two applied humanities researchers with expertise in arts‐based healthcare training, and 3) a three‐person research team completing a mock focus group.ResultIntervention materials were revised following each stage of review. In stage 1, we identified caregiving scenarios for inclusion, clarified confusing process components, and emphasized questions to ask as part of discussion and reflection activities. During Stage 2, we reorganized activities to follow a narrative structure and allow participants to explore one caregiving scenario at a time. In addition, we added application questions that ask participants to explore how scenarios relate to their own experiences. In stage 3, we expanded focus group activities to the online platform to promote access and safety. Through testing the process in advance, we refined procedural steps to facilitate caregiver engagement and identified potential barriers to participation.ConclusionWhen preparing to conduct a feasibility and acceptability trial for a behavioral intervention, seeking feedback enhances protocols to improve intervention processes. Iterative review may reduce extraneous problems, enabling focus groups to target participant feedback specific to dementia caregivers and their needs.

Effectiveness of a virtual health coach intervention for caregivers of persons with frontotemporal degeneration

AbstractBackgroundFrontotemporal degeneration (FTD) is a common cause of young‐onset dementia. A tremendous burden is placed on caregivers who often sacrifice their own self‐care needs in order to manage the cognitive decline and subsequent functional impairments of their loved one, contributing to extraordinarily high levels of stress and depression. Health coaching is a support intervention that is personalized and multidimensional, providing support for coping with stress while fostering self‐care. Here we report on the efficacy of a virtual health coach intervention (Virtual Caregiver Coach for You; ViCCY) aimed at increasing self‐care behaviors and reducing stress in FTD caregivers.MethodIn this pilot randomized control trial, 30 caregivers of persons with behavioral variant FTD (bvFTD) were randomly assigned to either the intervention group (ViCCY) which included 10 coaching sessions over 6 months plus targeted health information through the internet or the control group receiving standard care augmented with the targeted health information through the internet. Caregiver self‐report measures on self‐care (primary outcome), stress, depression and coping were collected at enrollment, 3 and 6 months. Using linear mixed‐effects models, we evaluated differences in change over time between the intervention and control groups.ResultsThere were no significant differences in baseline characteristics between the groups. There was a significant group‐by‐time interaction for self‐care monitoring (t58 = 2.37, p = 0.0210) and self‐care confidence (t58 = 2.32, p = 0.0239) on the Self‐Care Inventory, demonstrating that caregivers who received the ViCCY intervention improved in their self‐care over time. The intervention group also reported lower self‐neglect over time compared to the control group (Health Care Self Neglect Scale: t58 = ‐2.38, p = 0.0417). No differences were observed between the groups on the secondary outcome measures of stress, depression and coping.ConclusionsbvFTD caregivers are a unique population who defer their own self‐care in response to the stress of caregiving. This RCT shows promise for remotely delivered health coaching as an innovative way to increase support that is urgently needed to reduce poor outcomes in this distressed and underserved caregiver population.

Reducing Dementia Grief Through Psychosocial Interventions

Abstract: This review assessed the existing dementia grief interventions for caregivers of persons with dementia (PwD) prior to physical death from September 2016 to September 2021. Electronic databases Web of Science (SSCI), PsycArticles, Psychology and Behavioral Sciences Collection, PsycINFO, PSYNDEX Literature with PSYNDEX Tests, and MEDLINE were searched. Fifty-five publications meeting predetermined criteria were screened of which 12 were included in this review. Included interventions were multifaceted and the intervention format was heterogeneous. There has been a vast increase in dementia grief interventions in the last 5 years implying that the concept has been recognized as a valid and important construct to describe the caregiver experience. Implementation research should be undertaken to explore how well the concept of dementia grief is known and recognized and how elements of the interventions are used in everyday mental health care.

THEORETICAL IMPLICATIONS AND IMPACT OF SELF-COMPASSION IN CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA

Abstract Caregivers of people living with dementia often report greater symptoms of depression, anxiety, and burden. Guided by the Stress Process Model, the study examined the impact of self-compassion on these key psychosocial well-being outcomes in a sample of dementia caregivers (N=99). Participants were 66.7% female, 67.7% White, and 74% were children/in law or grandchildren/in law, with a mean age of 38.61. Findings indicated self-compassion was a significant and unique predictor of symptoms of depression (β = -.25, p = .03), anxiety (β = -.36, p = .01), and burden (β = -.25, p = .02). Additional analyses found support for dysfunctional coping meditating the relationship between self-compassion and caregiver burden ((B = -.20, SE = .06, 95%CI[-.3242, -.0924] dysfunctional coping mediating the relationship between self-compassion and anxiety (B = -.16, SE = .05, 95%CI[-.2257, -.0302] and emotion-focused coping meditating the relationship between self-compassion and depression (B = -.06, SE = .03, 95%CI[-.1388, -.0045]. Results demonstrate the important role of self-compassion along with the impact of coping style on psychosocial well-being outcomes. Discussion will highlight the theoretical implications of these findings along with how these results can be used to develop efficacious interventions for caregivers of persons with dementia. Specifically, tailoring an intervention for dementia caregivers grounded in self-compassion theory as well as Compassion Focused Therapy and Mindful Self-Compassion Therapy may assist caregivers in developing a self-compassionate mindset and skills to more effectively cope with caregiving challenges.

INTEGRATION OF DIGITAL TECHNOLOGY IN RESEARCH INVOLVING OLDER ADULTS: LESSONS FROM COMMUNITY-BASED TRIALS

Abstract Working with study participants in community-based clinical trials during COVID-19 pandemic has created diverse challenges to study teams. Globally, COVID-related restrictions were implemented including country-wide lockdowns and social distancing, and study teams had to quickly adjust their study protocols to work in a virtual environment. Meeting virtually for recruitment activities or intervention delivery may be particularly challenging when the target group is older adults—one of the vulnerable populations to experience the digital divide due to limited digital access and limited digital literacyThis symposium covers the lessons learned related to use of digital technology in participant recruitment and intervention delivery across a range of populations, including community-dwelling Korean American older adults to African American older women living with pain and low mood, caregivers of persons living with heart failure, and low-income cancer survivors with multiple chronic conditions. The discussion will include 1) findings from screening over 1,000 older Korean Americans to enroll them into a multi-site community-based trial, 2) lessons in diversifying intervention delivery methods to African American older women, 3) the integration of virtual modality into a self-care and social support intervention for caregivers of persons with heart failure, and 4) the deployment of mHealth to deliver a home-based exercise program to ethnically diverse low-income cancer survivors with co-morbid conditions in the setting of the COVID-19 pandemic. This symposium seeks to build the evidence related to recruitment and intervention delivery targeting diverse groups of older adults in community settings using technology by sharing common challenges, experiences, and opportunities.

Education and Skill-Building Interventions for Caregivers of Adults With Traumatic Brain Injury (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings from the systematic review on interventions for caregivers of persons with traumatic brain injury that facilitate participation in the caregiver role.

Relationship Building Interventions for Caregivers of Adults With Traumatic Brain Injury (2013–2020)

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings from the systematic review on interventions for caregivers of persons with traumatic brain injury (TBI) that facilitate participation in the caregiver role.

Health and Well-Being Interventions for Caregivers of Adults With Traumatic Brain Injury (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings from the systematic review on interventions for caregivers of persons with traumatic brain injury that facilitate participation in the caregiver role.

Virtual Intervention for Caregivers of Persons With Lewy Body Dementia: Pilot Quasi-Experimental Single-Arm Study.

BackgroundCompared to other types of dementia, family caregivers of people with Lewy body dementia (LBD) report higher stress levels and more severe depressive symptoms. Although several digital support interventions for caregivers of persons with dementia exist, few target LBD specifically or leverage a fully remote and asynchronous approach suitable for pandemic circumstances.ObjectiveWe performed a pilot evaluation of a digital intervention designed to help caregivers of people with LBD address challenges they have experienced, with the end goal of reducing psychological distress in this population.MethodsWe recruited 15 family caregivers of people with LBD to participate in the quasi-experimental, single-arm, mixed methods study titled Virtual Online Communities for Aging Life Experience–Lewy Body Dementia (VOCALE-LBD). The study offers an 8-week web-based intervention that uses a digital discussion platform and involves moderation, peer-to-peer support, didactic training, and problem-solving skill enactment.ResultsParticipants’ baseline characteristics were the following: mean age 66 (SD 8) years; 14 of 15 (93%) of them were female; all (15/15, 100%) were White; and 8 (53%) of them had at least a postgraduate degree. Throughout the intervention, participants engaged in weekly web-based discussions, generating a total of 434 posts (average 4 posts per week). Attrition was 20% (3/15). Upon study exit, participants showed the following average improvements: 3.0 (SD 6.0) in depression, 8.3 (SD 16.7) in burden, 2.9 (SD 6.8) in stress, and 0.3 (SD 0.8) in loneliness. When looking at the proportion of participants with clinically significant improvement versus those with a worsening of ≥0.5 SD for each outcome, we observed net improvements of 50% (6/12), 33% (4/12), 25% (3/12), and 25% (3/12) in depression, loneliness, burden, and stress, respectively. In terms of the benefits of participation, participants reported that participation helped them “a great deal” to (1) improve their understanding of LBD (9/12, 75%), (2) gain confidence in dealing with difficult behaviors of the care recipient (6/12, 50%), and (3) improve in one’s abilities to provide care to the care recipient (4/12, 33%).ConclusionsThe study generated promising feasibility and preliminary efficacy data for a low-cost, web-based intervention designed for caregivers of persons with LBD. Though the study was not powered for significance, we observed nominal average and net improvements in important psychological outcomes. Moreover, many caregivers reported that study participation helped them better understand the disease, feel more confident in dealing with difficult behaviors of the care recipient, and improve their ability to care for the care recipient. If validated in future studies, the intervention could be an accessible, on-demand resource for caregivers, enabling them to engage in moderated remote discussions with peers at their own convenience in terms of location, time of the day, and frequency.

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization.

Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.

Does early-stage intervention improve caregiver well-being or their ability to provide care to persons with mild dementia or mild cognitive impairment? A systematic review and meta-analysis.

Interventions for caregivers of persons with dementia are well supported, but it remains unclear whether caregivers benefit from early-stage intervention when caring for persons with mild dementia or mild cognitive impairment (MCI). This systematic review and meta-analysis examined whether early-stage interventions for this population positively affect their well-being and ability to provide care and whether effectiveness varies based on intervention or caregiver/recipient characteristics. Searches of four databases (MEDLINE, EMBASE, PSYCINFO, and CINAHL) yielded 20,722 titles and 1,305 full texts were independently screened. Twenty-two reports representing 18 randomized controlled trial (RCT)/controlled early-stage intervention studies were included for meta-analysis, measuring a variety of outcomes for which effect sizes were calculated using standardized mean differences. Findings suggest that early-stage intervention has a small positive effect on both caregiver well-being and ability to provide care, with the largest effects observed for caregiver anxiety and caring-related distress. Moderator analyses showed no statistically significant difference in effectiveness based on type of intervention (counseling/psychotherapy, psychoeducational, or multicomponent) or individual versus group-based interventions. However, interventions that were caregiver only (vs. dyadic) had larger positive effects on caregiver well-being and ability to provide care. None of the caregiver/recipient characteristics examined (sex, type of relationship, and type of dementia) were related to the effectiveness of early-stage interventions. Although published controlled/RCT trials were limited, findings support efforts to offer early-stage interventions to caregivers of persons with mild dementia or MCI. Further research to determine what intervention types or components are most efficacious would aid the provision of optimal support for caregivers early in their caregiving trajectory. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial.

BackgroundOf the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers.ObjectiveThis paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis.MethodsParticipants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later.ResultsThe protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled.ConclusionsOur findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving.Trial RegistrationClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008International Registered Report Identifier (IRRID)DERR1-10.2196/30617

Caring for the Caregivers: A Review

Background: Caregiving of a person with Alzheimer’s disease can be a stressful for the caregivers at many levels. Management of Alzheimer’s disease is mainly driven by the needs of the persons with the disorder which are carried out by the caregivers. Most often, the needs of caregivers become a secondary concern leading to significant burden on them. Hence, it is pertinent to incorporate their emotional wellbeing when designing psychosocial interventions in the management of persons with Alzheimer’s disease. Objectives: To review relevant literature: 1) to understand the impact of caregiving of a person with Alzheimer’s disease on their caregivers and, 2) to study the different psychosocial interventions for caregivers of persons with Alzheimer’s disease. Methods: The databases searched for the current review are PubMed and Google Scholar. Twenty-five articles were reviewed. Result: Caregivers face significant level of distress and burden during the process of caregiving. The level of anxiety and depression is found to be directly correlated with burden among the caregivers. Inability to cope with the situations affects caregiving. Psychosocial interventions like psychoeducation, coping strategies, supportive therapy, relaxation therapy are found to be beneficial. Home based, tailor made intervention is more effective than a clinical based intervention. Conclusion: Psychosocial interventions for the management of persons with Alzheimer’s disease should incorporate the psychosocial issues and needs of caregivers. Their stress should be addressed for effective management of persons with Alzheimer’s disease and better caregiving experience.

Evaluating the efficacy of TeleFAMILIES: a telehealth intervention for caregivers of community-dwelling people with dementia

Objectives Examine the efficacy of a telehealth-administered intervention for caregivers of persons with dementia. Method Two hundred sixteen caregivers engaged in the FAMILIES intervention over six months, either virtually (n = 59) or in-person (n = 157). The telehealth protocol (TeleFAMILIES) was conducted online. Caregivers engaged in six sessions, including individual and family/group counseling, ad hoc counseling, and had access to support groups. Sessions included person-centered assessments of caregivers’ physical, emotional, social needs, and current support networks. Primary outcome variables were change in total score between baseline and completion on the Zarit Burden Interview (ZBI), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and the Revised Memory and Behavior Problems Checklist (RMBPC). Results TeleFAMILIES caregivers reported significant reductions in ZBI (p = .002) and CESD-R scores (p < .001). RMBPC reaction scores significantly improved (p = .02) and improved more than in-person caregivers’ scores (F (3, 119) = 2.71, p = .048, partial eta2 = .06). For those classified as having a higher risk of depression at baseline, a significantly larger portion TeleFAMILIES caregivers converted to a classification of lower depression risk at completion (p = .02). Conclusion Compared to the in-person group, TeleFAMILIES caregivers experienced the same, if not greater improvements in perceived burden, depressive symptomatology, and their ability to manage their reactions to behavioral symptoms of dementia. The strengths of TeleFAMILIES are the convenience of telehealth services and its mitigation of barriers to care.