A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.

The use of Acceptance and Commitment Therapy (ACT) in informal caregivers of people with dementia and other long-term or chronic conditions: A systematic review and conceptual integration.

Informal caregivers are the primary source of support for adults with chronic conditions and disabilities. Empirical research highlights chronic stress and other risks of adverse outcomes of caregiving. Acceptance and Commitment Therapy (ACT) is an emerging evidenced-based practice that shows promise in improving an array of outcomes, theoretically by increasing psychological flexibility as the primary process of change. Research has begun to evaluate ACT among informal caregivers of adult populations, and a systematic review is now needed to summarise this evidence base. Electronic searches from five databases, including PubMed, PsycInfo, Embase, CINAHL, and Cochrane Library, yielded an initial 7896 hits, which after screening for inclusion criteria, resulted in 21 clinical trials. Studies were coded to synthesise the feasibility, effectiveness, and quality of evidence. Findings show that ACT was reported to be largely feasible and acceptable. However, the efficacy of ACT was mixed, with a more consistent pattern for informal caregivers of people with dementia. Several methodological quality issues limited the findings. However, theoretical synthesis and preliminary evidence support the promising effect of ACT in subgroups of informal caregivers. Research on the process of change, as well as larger-scale, methodologically rigorous trials, are needed to consolidate these findings.

Intervention mechanisms of an experience sampling intervention for spousal carers of people with dementia: a secondary analysis using momentary data.

Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only.Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models.Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p < .05). Passive relaxation in this group was negatively associated with negative affect (r = -0.50, p = .01) and positively associated with activity-related stress (r = 0.52, p = .007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly.Conclusion: Carer's daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one's daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer's life and provide sustainable support.

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study.

BACKGROUND: Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time or contexts. OBJECTIVE: This study examines the feasibility and usability of applying the experience sampling method (ESM) in people with MCI to provide a detailed and dynamic picture of behavioral, emotional, and cognitive patterns in everyday life. METHODS: For 6 consecutive days, 21 people with MCI used an ESM app on their smartphones. At 8 semi-random timepoints per day, participants filled in momentary questionnaires on mood, activities, social context, and subjective cognitive complaints. Feasibility was determined through self-reports and observable human-technology interactions. Usability was demonstrated on an individual and group level. RESULTS: Of the 21 participants, 3 dropped out due to forgetting to carry their smartphones or forgetting the study instructions. In the remaining 18 individuals, the compliance rate was high, at 78.7%. Participants reported that momentary questions reflected their daily experiences well. Of the 18 participants, 13 (72%) experienced the increase in awareness of their own memory functions as pleasant or neutral. CONCLUSIONS: Support was found for the general feasibility of smartphone-based experience sampling in people with MCI. However, many older adults with MCI are currently not in possession of smartphones, and study adherence seems challenging for a minority of individuals. Momentary data can increase the insights into daily patterns and may guide the person-tailored development of self-management strategies in clinical settings.

The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia.

OBJECTIVES: Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. METHOD: The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). RESULTS: Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. CONCLUSION: The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

A narrative synthesis systematic review of digital self-monitoring interventions for middle-aged and older adults.

OBJECTIVE: Self-monitoring is crucial to raise awareness for own behaviors and emotions, and thus facilitate self-management. The composition of self-monitoring within interventions, however, varies and guidelines are currently unavailable. This review aimed to provide a comprehensive overview of technology-based self-monitoring interventions that intend to improve health in middle-aged and older adults (>45 years). METHODS: Five online databases were systematically searched and articles were independently screened. A narrative synthesis of 26 studies with 21 unique interventions was conducted. Primary focus lay on the composition of self-monitoring within interventions, including technology used, health-aspects monitored, and type of feedback provided. Secondly, the usability of/adherence to the self-monitoring treatment, intervention effects, and their sustainability were examined. FINDINGS: Studies concentrated on middle-aged adults (mean of 51 years). Mobile technologies seem necessary to ensure flexible self-monitoring in everyday life. Social health aspects were rarely monitored. Mechanisms and the sustainability of intervention effect are understudied. CONCLUSION: Digital self-monitoring technologies hold promise for future trials as they seem suitable to understand and support health-related self-management. Key elements including automatic and personal feedback following the blended care principle were highlighted and may guide study designs. Prospectively, research is especially needed to study sustained self-monitoring to support disease prevention and lasting lifestyle changes.

Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study.

INTRODUCTION: Caregivers differ in their emotional response when facing difficult situations during the caregiving process. Individual differences in vulnerabilities and resources could play an exacerbating or buffering role in caregivers' reactivity to daily life stress. This study examines which caregiver characteristics modify emotional stress reactivity in dementia caregivers. METHODS: Thirty caregivers collected momentary data, as based on the experience sampling methodology, to assess (1) appraised subjective stress related to events and minor disturbances in daily life, and (2) emotional reactivity to these daily life stressors, conceptualized as changes in negative affect. Caregiver characteristics (i.e. vulnerabilities and resources) were administered retrospectively. RESULTS: Caregivers who more frequently used the coping strategies 'seeking distraction', 'seeking social support', and 'fostering reassuring thoughts' experienced less emotional reactivity towards stressful daily events. A higher educational level and a higher sense of competence and mastery lowered emotional reactivity towards minor disturbances in daily life. No effects were found for age, gender, and hours of care and contact with the person with dementia. DISCUSSION: Caregiver resources can impact emotional reactivity to daily life stress. Interventions aimed at empowerment of caregiver resources, such as sense of competence, mastery, and coping, could help to reduce stress reactivity in dementia caregivers.

Dealing with daily challenges in dementia (deal-id study): process evaluation of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia.

OBJECTIVES: This study describes the process evaluation of the experience sampling method (ESM) intervention 'Partner in Sight' for spousal caregivers of people with dementia. The aim was to determine internal and external validity of the intervention and provide information for future implementation in clinical practice. METHOD: Qualitative and quantitative data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, adherence to protocol) were evaluated using descriptive statistics and conventional content analysis. RESULTS: The participation rate included 31.4%. Due to recruitment difficulties and time constraints the original goal to include 90 caregivers was not met. The intervention was largely performed according to protocol and well received by the participants. Overall, the ESM-derived feedback was considered supportive and increased participants' awareness of their feelings and behavior. A large variance was found in the extent to which caregivers applied the feedback into their daily lives. The importance of the personal coach to provide face-to-face feedback and stimulate caregivers to implement new insights into their daily lives was emphasized. Suggestions for improvement were to reduce the time intensity of the program, to better tailor the program content to one's personal situation, and to improve the ESM device. CONCLUSION: Although recruitment barriers were encountered, results indicate that future implementation of the ESM intervention 'Partner in Sight' is likely to be feasible in regular health care. If the intervention turns out to be (cost-) effective, a fine-tuned version of the program could be a valuable addition to the current health care system.

Dealing with Daily Challenges in Dementia (Deal-id Study): An Experience Sampling Study to Assess Caregivers' Sense of Competence and Experienced Positive Affect in Daily Life.

OBJECTIVE: Positive emotions and feelings of competence seem to play an important role in the well-being of caregivers of people with dementia. Both are likely to fluctuate constantly throughout the caretaking process. Unlike standard retrospective methods, momentary assessments in daily life can provide insight into these moment-to-moment fluctuations. Therefore, in this study both retrospective and momentary assessments were used to examine the relationship between caregivers' sense of competence and their experienced positive affect (PA) in daily life. METHODS: Thirty Dutch caregivers provided momentary data on PA and daily sense of competence ratings for 6 consecutive days using the experience sampling methodology. Additionally, they reported retrospectively on their sense of competence with a traditional questionnaire. RESULTS: A positive association was found between retrospective and daily measured sense of competence. Caregivers reported corresponding levels of sense of competence on both measures. Both daily and retrospective sense of competence were positively associated with the experienced levels of PA. However, daily sense of competence appeared to be the strongest predictor. Regarding the variability in PA, only daily sense of competence showed a significant association, with a higher daily sense of competence predicting a more stable PA pattern. CONCLUSION: This study provides support for redirecting caregiver support interventions toward enhancement of positive rather than negative experiences and focusing more on caregivers' momentary emotional experiences. Momentary assessments are a valuable addition to standard retrospective measures and provide a more comprehensive and dynamic view of caregiver functioning.

Dealing with daily challenges in dementia (deal-id study): effectiveness of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia: design of a randomized controlled trial.

BACKGROUND: There is an urgent need for psychosocial interventions that effectively support dementia caregivers in daily life. The Experience Sampling Methodology (ESM) offers the possibility to provide a more dynamic view of caregiver functioning. ESM-derived feedback may help to redirect caregivers' behavior towards situations that elicit positive emotions and to increase their feelings of competence in the caretaking process. This paper presents the design of a study that evaluates the process characteristics and effects of the ESM-based intervention 'Partner in Sight'. METHODS/DESIGN: A randomized controlled trial with 90 spousal caregivers of people with dementia will be conducted. Participants will be randomly assigned to the experimental (6-week ESM intervention including feedback), pseudo-experimental (6-week ESM intervention without feedback), or control group (care as usual). Assessments will be performed pre- and post-intervention and at 2-, and 6-month follow-up. Main outcomes will be sense of competence, perceived control, momentary positive affect, and psychological complaints (depressive symptoms, perceived stress, anxiety, momentary negative affect). In addition to the effect evaluation, a process and economic evaluation will be conducted to investigate the credibility and generalizability of the intervention, and its cost-effectiveness. DISCUSSION: The potential effects of the ESM intervention may help caregivers to endure their care responsibilities and prevent them from becoming overburdened. This is the first ESM intervention for caregivers of people with dementia. The results of this study, therefore, provide a valuable contribution to the growing knowledge on m-health interventions for dementia caregivers. TRIAL REGISTRATION: Dutch Trial Register NTR4847 ; date registered Oct 9, 2014.