Dementia Caregiver Interventions Research Articles

Implementation and Evaluation of a Virtual Skills-Based Dementia Caregiver Group Intervention within a VA Setting: A Pilot Study.

This study sought to design, implement, and evaluate a 6-week skills-based telehealth group for dementia caregivers within a VA setting. The protocol was designed based on a CBT skill-building approach and was evaluated using the four levels of evaluation developed by Kirkpatrick (1998). Eight spousal caregivers of individuals with MCI or dementia participated in the pilot group within a VA geriatric clinic. Methods included comparison of pre- and post-intervention outcome measures (caregiver burden, depression, anxiety, flourishing) and inductive narrative analysis of qualitative feedback from participants. Qualitatively, the intervention was well received and participants identified several areas of subjective learning and skill implementation including increased behavioral and communication skills, knowledge, and connection with resources. However, paired-sample t-tests of group outcomes revealed no significant differences on measures of caregiver burden, depression, anxiety, and flourishing pre- and post-intervention. Based on Kirkpatrick's levels of evaluation, this study revealed positive reception of a group-based intervention for dementia caregivers within a VA setting, but further investigation of intervention effectiveness is needed given the lack of significant change found on outcome measures. A virtual skills-based group may be a feasible option for dementia caregiver intervention within VA settings that warrants further investigation.

Testing the Efficacy of a Culturally Adapted Family Dementia Caregiver Intervention (REACH VN): Results From a Cluster Randomized Controlled Trial in Northern Vietnam

ObjectivesVietnam faces an unprecedented increase in people living with dementia but lacks evidence-based family dementia caregiver interventions. We tested the efficacy of a culturally adapted family caregiver intervention (REACH VN) in Northern Vietnam. MethodsIn this randomized controlled trial, clusters (communes) were assigned to1 REACH VN (a multicomponent intervention consisting of 4-6 one-hour sessions delivered over 1-3 months) or2 enhanced control (one session of dementia education). Primary outcomes were caregiver perceived psychological distress (PHQ-4) and burden (ZBI-12). Secondary outcomes were caregiver perceived stress (PSS-10) and somatic symptoms (PHQ-15). Mixed effects analysis was performed with 3-month and 6-month assessments as the outcomes and baseline assessment as a covariate. ResultsOverall, 350 caregivers from 40 clusters (21 intervention, 19 enhanced control) enrolled and 330 (94.3%) completed 3-month assessments. At 3 months, the REACH VN intervention group had lower PHQ-4 (p <0.001) but not ZBI-12 (p = 0.05) scores compared to control. At 6 months, the intervention group had lower ZBI-12 (p = 0.002) but not PHQ-4 (p = 0.5) scores. PSS-10 and PHQ-15 scores were also improved at 3 months (p = 0.007, p <0.001 respectively) for the REACH VN intervention group compared with control but not at 6 months. ConclusionsREACH VN improved outcomes in family caregivers in Vietnam at 3 months although improvement was not sustained for most outcomes at 6 months.

A qualitative exploration of changes and mechanisms of changes in a psychoeducational intervention for family dementia caregivers

Background‘Learning to feel better… and help better’ is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention.MethodsA constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews).ResultsExperiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy ‘reframing’, employed in diverse ways by the caregivers to reduce daily stress, and the didactic method ‘active skills’ training’, which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia.ConclusionThe calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes.Trial registrationISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Using Natural Language Processing on Expert Panel Discussions to Gain Insights for Recruitment, Retention and Intervention Adherence for Online Social Support Interventions on a Stage II-III Clinical Trial Among Hispanic and African American Dementia Caregivers.

We applied natural language processing (NLP) to a corpus extracted from 4 hours of expert panel discussion transcripts to determine the sustainability of a Stage II-III clinical trial of online social support interventions for Hispanic and African American dementia caregivers. Prominent topics included Technology/hard to reach populations, Training younger populations, Building trust, Privacy and security issues, Simplification of screening questions and recruitment procedures, Understanding participants' needs, Planning strategies and logistics, Potential recruitment places, Adjusting intervention size downwards to engage elderly participants, Targeting different generations, Internet-based interventions by age range, and Providing step-by-step instructions and an overview of the entire research process during recruitment. The application of NLP to qualitative data on a dementia caregiving clinical trial provides useful insights for recruitment, retention, and adherence to guidelines for such interventions serving Hispanic and African American dementia caregivers.

Integrating programme theory into the development of a core outcome set for technology-assisted counselling interventions in dementia: study protocol of the ProCOS study

IntroductionDue to the increasing number of persons with dementia, the need for family and professional support is growing. Counselling services aim to support family dementia caregivers and the use of...

Family Caregivers' Progress Toward Values Moderates the Associations between Behavioral Symptoms of Dementia, Caregiver Burden, and Depressive Symptoms.

Increasingly, dementia caregiver interventions are informed by acceptance-based approaches such as Acceptance and Commitment Therapy. These interventions promote psychological skills like psychological flexibility and value-based living. Less is known how these constructs interact within well-established caregiver stress processes. We examined a moderated mediation model (N = 161 dementia caregivers; PROCESS Procedure; SPSS Release 4.1), with BPSD frequency (Revised Memory and Behavior Problems Checklist) predicting depressive symptoms (10-item CES-D), mediated via caregiver burden (short Burden inventory). The moderator was the Values Questionnaire, and we controlled for gender, caregiver duration, age, income, and education. Results: revealed that the indirect effect of BPSD on depressive symptoms through caregiver burden was weakened through higher progress toward values (moderated mediation significant at p < .05). Committed action toward values signify caregivers' success at balancing care-related stress with other priorities. Interventions that build skills in values-based living have promise for caregivers, offering healthier ways to adjust to being a caregiver.

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).

Relationship Between Acculturation and Mental Health in Korean American Family Caregivers of Community-Dwelling Persons Living with Dementia.

Despite the growing number of Korean American (KA) family caregivers for persons with dementia, little is known about how acculturation might affect caregiving stress in this population. Acculturation is a variable of considerable interest in caregiving research due to its significance in understanding the impact of cultural perceptions and expectations on the caregiving role and its relation to mental health outcomes. A cross-sectional descriptive study using baseline data from an ongoing randomized controlled trial of dementia caregiver intervention was performed to examine the association between acculturation and mental health outcomes among KA caregivers (n = 32) for persons with dementia. Self-report survey questionnaires including a bidirectional acculturation scale, Center for Epidemiologic Studies Depression Scale, the Perceived Stress Scale, and the Zarit Burden Interview were administered in person in English or Korean by trained bilingual community health workers. The primary independent variable, acculturation, was assessed using a 24-item inventory. It measured two sets of cultural orientation: Korean orientation and American orientation. The mean age was 67 years (SD = 11.8) and 87% were women. Half of the caregivers were spouses of persons with dementia, while the other half were offspring caregivers. In the multiple linear regression model, caregiver acculturation toward Korean cultural orientation had a significant and positive association with depressive symptoms (β = .62; SE = 0.25; p-value = .02) and perceived stress (β = .29; SE = 0.13; p-value = .03) after adjusting for age and self-efficacy. No significant effect of American cultural orientation was found for caregiver burden, perceived stress, or depressive symptoms. Our findings suggest that exploring the role of acculturation in caregiving and its relation to outcomes, particularly caregiver distress, may be valuable for future studies aiming to understand specific elements of cultural values and practices in the acculturation process related to mental health outcomes among immigrant Korean American caregivers.

EMBRACING CULTURE AND DESIGNING AN INTERGENERATIONAL TRAINING PROGRAM TO SUPPORT LATINE ELDERS

Abstract Although there have been efforts to promote health equity and increase representational diversity in research, there is a gap in our understanding on how to integrate cultural considerations into the intervention design process. Dementia caregiving interventions too frequently lack prioritization and integration of community-directed and culturally appropriate inputs during intervention planning. Consequently, intervention fit among racial and ethnic populations is sometimes culturally incongruent and intervention acceptability in community settings is weakened. We conducted a formative analysis drawing from research team member memos, document review, World Cafes with Latine community residents, and group interviews with Latine organizational staff to understand the intervention development process of an intergenerational dementia training program to support elders within the Latine community. The design process integrated iterative periods of listening through data gathering, informing by applying learned information to the developing program, and affirming through validation. Our analysis demonstrates the need for a broad range of skills and capacity to facilitate effective intervention design (language mastery among key research team members, program design skills, listening, relationship building).

Multiphase optimization of a multicomponent intervention for informal dementia caregivers: a study protocol

BackgroundFamily caregiver interventions are essential to support dementia caregiving. However, such interventions are typically complex and consist of multiple components. Existing evidence rarely delineates the effectiveness and interactions between individual components. To optimise intervention, we adopt the multiphase optimisation strategy (MOST) to test the implementation fidelity and determine the effect of each component and the interactions between each component and the corresponding outcome.MethodsA prospective, assessor-blinded, randomised clinical trial with fractional factorial design using the MOST principle. Two hundred fifty family dementia caregivers will be randomised to one of 16 experimental conditions in a fractional factorial design involving six intervention components: (1) dementia and caregiving education; (2) self-care skills; (3) behavioural symptom management; (4) behavioural activation; (5) modified mindfulness-based cognitive therapy; and (6) support group. The first one is the core component, and the five remaining will be examined. Physical health, caregiver burden, stress, psychological well-being, anxiety and depressive symptoms, and social support will be assessed over the 12-month study period. Following the intention-to-treat principle, linear mixed models and regression analyses will be used to examine the specific effect of the five components and their two-way interactions to propose the most effective combination.DiscussionThis is the first study adopting the multiphase optimisation strategy to identify the most active and engaging components of a psychological intervention for caregivers of patients with dementia. In view that dementia caregiver interventions are increasingly diversified and complex, such knowledge is important to maximise the intervention efficacy and allow the intervention to be implemented within an efficient timeframe and dosage. The optimisation of caregiver support interventions is critical to enhance the health outcomes of caregivers and care recipients, thereby, delaying possible institutionalisation and reducing the costs of long-term dementia care.Trial registrationThis study was retrospectively registered in the WHO Primary Registry – Chinese Clinical Trials Registry (ChiCTR2300071235). (Protocol date 30/10/2020; version identifier 2020–2021-0045). Registered on 9 May, 2023.Reporting methodSPIRIT guideline was followed.Patient or public contributionNo patient or public involvement.

Dementia Caregiving 101: The effect of a pilot virtual dementia caregiving course on caregiver role preparedness and self‐efficacy

AbstractBackgroundDementia affects approximately 6.5 million people over the age of 65 in the US, most of whom are cared for at home by family members. Dementia caregivers (CGs) have reported inadequate perceived role preparedness and self‐efficacy, in addition to burden, depression, and anxiety that is disproportionate to CGs of those without dementia. We created a virtual Dementia Caregiving 101 course offering psychoeducation and skills training through an immersive structured program. The virtual platform was designed to improve access to dementia caregiving education for the rural CGs we serve. Goals of this course were to increase CG role preparedness and self‐efficacy by providing information about dementia and an overview of the caregiving experience.MethodPrior to the first class, CGs were administered questionnaires to assess role preparedness and self‐efficacy. Two intervention groups were then conducted simultaneously for ten weeks. Post‐intervention data regarding role preparedness, self‐efficacy, and course feedback were collected.ResultFifteen CGs enrolled in the course. Four CGs were lost to follow up by the time of post‐group data collection, and one CG’s data was excluded whose scores were significantly discrepant from the overall pattern (this person joined by phone instead of by video). CGs included spouses/significant others (n = 5), former spouses (n = 1), siblings (n = 2), and adult children (n = 2). CGs ranged in age from 58‐76 (age M = 69.2; SD = 6.4). Diagnoses of CG’s loved ones included vascular dementia (n = 4), Alzheimer’s disease (n = 2), and unspecified dementia/no diagnosis given (n = 4). Total session attendance was high (M = 7.8; SD = 1.9; range = 5‐10). Following course completion, CGs reported an overall increase in role preparedness (Pre‐course score = 175; Post‐course score = 198) and self‐efficacy (Pre‐course score = 417; Post‐course score = 482). Qualitative analysis of CG feedback revealed high satisfaction with the course overall, with particular emphasis on usefulness of the manual, convenience of the virtual platform, and the opportunity to learn from other CGs.ConclusionThe Dementia Caregiving 101 virtual course appears to be an accessible and effective program for improving CG role preparedness and self‐efficacy, which are important factors in reducing negative CG outcomes. Our preliminary results are encouraging and underscore the benefits of virtual skills‐based interventions for dementia CGs.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

Applying community-based participatory research and user-centered design to optimize a novel lewy body dementia caregiver intervention (PERSEVERE)

Applying community-based participatory research and user-centered design to optimize a novel lewy body dementia caregiver intervention (PERSEVERE)

96 Feasibility Trial of a Mobile Health Intervention for Dementia Caregivers

Objective:There are numerous adverse health outcomes associated with dementia caregiving, including increased stress and depression. Caregivers often face time-related, socioeconomic, geographic, and pandemic-related barriers to treatment. Thus, implementing mobile health (mHealth) interventions is one way of increasing caregivers’ access to supportive care. The objective of the current study was to collect data from a 3-month feasibility trial of a multicomponent mHealth intervention for dementia caregivers.Participants and Methods:40 community-dwelling dementia caregivers were randomized to receive the CARE-Well (Caregiver Assessment, Resources, and Education) App or internet links connected to caregiver education, support, and resources. Caregivers were encouraged to use the App or links at least 4 times per week for 3 months. The App consisted of self-assessments, caregiver and stress reduction education, behavior problem management, calendar reminders, and online social support. Caregivers completed measures of burden, depression, and desire to institutionalize at baseline and post-intervention. Feasibility data included App usage, retention and adherence rates, and treatment satisfaction. Data were analyzed via descriptive statistics.Results:Caregivers were mostly white (95%), female (68%), in their mid-60s, (M= 66.38, SD= 10.64), and well-educated (M= 15.52 years, SD= 2.26). Caregivers were mainly spouses (68%) or adult children (30%). Care recipients were diagnosed with mild (60%) or moderate (40%) dementia, with 80% diagnosed as having Alzheimer’s disease. Overall, the study had an 85% retention rate (80% for App group; 90% for links group). 58% of caregivers in the App group were considered high users, using the App &gt;120 minutes over the course of 3 months (M= 362.42, SD= 432.68), and an average of 16.44 days (SD= 15.51). 15% of the sample was non-adherent due to time constraints, disinterest, and/or technology issues. Most participants (75%) using the App were mostly or very satisfied, about 87% would be likely or very likely to seek similar programs in the future, and 93% found the App mostly or very understandable. Groups did not significantly differ on clinical outcomes, although the study was not powered for an efficacy analysis. Within groups analysis revealed significant increases in depressive symptoms at post-treatment for caregivers in both groups.Conclusions:This study demonstrated initial feasibility of the CARE-Well App for dementia caregivers. App use was lower than expected, however, high satisfaction, ease of use, and willingness to use similar programs in the future were endorsed. Some caregivers did not complete the intervention due to caregiving responsibilities, general disinterest, and/or technology issues. Although the study was not designed to assess clinical outcomes, we found that both groups reported higher depressive symptoms at post-treatment. This finding was unexpected and might reflect pandemic-related stress, which has been shown to particularly impact dementia caregivers. Future studies should address the efficacy of multicomponent mHealth interventions for dementia caregivers and the effects of increased dose on clinical outcomes. mHealth interventions should be refined to cater to varying levels of technology literacy among caregivers, and further research should aim to better integrate interventions into caregivers’ routines to enhance treatment engagement.

Connecting, learning, supporting: Caregivers' experiences of a stress and distress biopsychosocial group intervention.

Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited. An Interpretative Phenomenological Analysis explored caregiver experiences and influence on caregiving of participating in a "Responding to Distress in Dementia" group. Five family caregivers were interviewed with discussions covering the period from first noticing symptoms to the interview session. Within the group experience, four superordinate themes were identified: 'connecting to other caregivers', 'learning about caregiving', 'group factors' and 'reduced caregiver distress'. During the post-group period, three superordinate themes were recognised: 'maintaining support', 'applying learning', and 'normalising caregiving'. The study highlighted several interrelated themes involving creating connections amongst caregivers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes reflected those found in existing dementia caregiver intervention research. Recommendations included facilitating peer support groups and exploring whole-family approaches.

A - 57 Virtual Group Dementia Caregiver Intervention for the Management of Neuropsychiatric Symptoms (NPS): 3-Month Follow-Up of a Pilot Study.

Pilot test the feasibility and preliminary efficacy of a virtual group dementia caregiver intervention (TeleCARE) in improving depression, anxiety, and distress related to NPS. Twenty predominately female (80%), spouses (80%), ages 35-88 (M = 70.8), participated in TeleCARE. The CDR-Sum of Boxes for patient dementia severity reflected moderate dementia (M = 11.1, SD = 3.18). Caregiver data was collected at baseline, immediately following the intervention, and 3months after completion. Following the intervention, 85% of caregivers understood NPS better, and 90% felt better able to care for the person with dementia (PWD) and manage caregiving. Immediately following the intervention, caregivers reported reductions in depression (BDI: M = 9.55, SD = 7.88 vs. M = 7.75, SD = 7.11), anxiety (BAI: M = 8.65, SD = 7.46 vs. M = 6.75, SD = 7.24), and distress related to NPS (M = 26.60, SD = 11.97 vs. M = 25.10, SD = 11.60). Decreases in depression and anxiety were not maintained at the 3-month follow-up (BDI: M = 8.60, SD = 7.82; BAI M = 8.95, SD = 10.90), but distress related to NPS declined further (M = 24.40, SD = 10.68). TeleCARE improved the understanding of NPS and the ability to care for the PWD and manage caregiving demands. Reductions were seen in depression, anxiety, and distress related to NPS immediately following the intervention. Reductions in depression and anxiety were not maintained at 3-months, but caregivers showed further reductions in distress related to NPS, suggesting that the targeted NPS intervention had sustained targeted outcomes (distress related specifically to NPS), perhaps resulting from improved understanding of NPS and continued application of taught skills. Adding booster sessions may help sustain reductions in depression and anxiety.

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

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

Caregiver Preparedness: A Therapeutic Mechanism and Moderating Factor on Outcomes for the Savvy Caregiver Program

ABSTRACT Objectives Evidence-based interventions for dementia caregivers, such as the Savvy Caregiver Program (SC), seek to address skills and knowledge deficits, caregiver burden, depressive symptoms, and grief. Little research has examined mechanisms by which these interventions accomplish their goals. Caregiver preparedness may be a possible mechanism by which caregiver interventions may confer benefits. Methods The sample included 76 dementia caregivers who completed the 6-session SC. Participants completed the Anticipatory Grief Scale, Center for Epidemiological Studies-Depression Scale, the Preparedness for Caregiving Scale, and the Zarit Burden Interview-Short Form. Results A repeated measures ANOVA was utilized to determine the interaction between baseline scores and pre-post change in caregiver preparedness. Analysis significantly predicted caregiver burden, (F (1) = 6.68, p=.012, partial η 2 =.10), depressive symptom endorsement, (F (1) = 6.41, p=.014, partial η 2 =.09, and anticipatory grief, (F (1) = 6.22, p=.02, partial η 2 =.1), post-treatment. Conclusions Pre-post change in caregiver preparedness significantly predicted pre-post change across measures of caregiver burden, depressive symptom endorsement, and anticipatory grief. Findings suggest that caregiver preparedness may be one mechanism by which the SC confers positive outcomes. These findings provide an empirical and theoretical basis for tailoring future dementia caregiver interventions. Clinical Implications Clinical Interventions may seek to improve caregiver preparedness and subsequent outcomes through utilization of programs like SC.

Caregiving burden and healthcare utilization in family caregivers of people with dementia: Long term impact of the public family caregiver intervention

Despite community-based interventions to decrease the caregiving burden on family caregivers of people with dementia (PwD), long-term assessment of community-based public programs is lacking. Therefore, the study aims to identify the long-term effects of community-based dementia caregiver intervention on the caregiving burden and healthcare utilization among family caregivers for PwD. Additionally, we investigated the predictors of caregiving burden and healthcare utilization. Of the participants, 32 (76%) intervention and 15 (38%) control groups responded to the one-year follow-up. We assessed caregiver burden using the short-form Zarit Burden Interview (sZBI) and collected healthcare utilization data using questionnaire at baseline and 12 months. Compared with the control group, the intervention group did not experience a reduction in caregiving burden and healthcare utilization. Predictors of caregivers' perceived burden were spouses as the primary caregiver and having multiple comorbidities. The predictors identified in this study should be considered when implementing public family support programs.