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The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

Background:Consistency between carers’ report of the people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance has been an important topic in the literature, but most studies have investigated whether carer’s burden and depression affect this report.Objectives:To (1) investigate if carer’s report of PwD’s performance of ADLs is consistent with PwD’s observed performance; and to (2) evaluate if carer management style has an effect on this discrepancy.Methods:Sixty-four PwD completed a performance-based ADL assessment (Assessment of Motor and Process Skills-AMPS) which entails the observation of ADL performance; their carers were interviewed using an informant-based ADL assessment (DAD), which records ADL performance as reported by the carer. Carers completed a dementia management-style scale (DMSS) that categorises the carer’s style in: criticism, active-management and encouragement. To investigate whether there was consistency between the DAD and the AMPS, a new continuous variable was created: the comparative ADL score. Cohen’s kappa was used to compare agreement/disagreement between the DAD and the AMPS. Multiple regression analysis explored whether carer styles could explain the discrepancy between the reported and observed performance of ADLs.Results:The majority of carers underestimated (71.9%) or overestimated (17.2%) (disagreement) the PwD’s ADL performance; only 10.9% of carers reached an agreement between reported and observed performance. Cohen’s kappa [k= -0.025 (95%CI -0.123 – 0.073)] indicated poor level of agreement between the DAD and the AMPS. Criticism, active-management and encouragement styles were included in the regression model: the comparative ADL score was used as the dependent variable. This combined model explained 18% (R2=0.178,F(3, 59)=4.26,p=<0.01) of the variance of the dependent variable. Active-management (β =0.037, t(62)=3.554, p=0.001) and encouragement (β =-0.024, t(62)=- 2.086, p=0.05) styles were the two factors that made the largest and statistically significant contribution to the model.Conclusions:the disagreement between the reported and the observed performance proved to be high in this group. The styles that carers use when dealing with dementia-related problems affected their report of ADL performance, which means that the strategies applied by carers to support ADL performance can be targeted to reduce the gap between reported and observed performance.

Caregivers of people with dementia who endorse dysfunctional beliefs about caregiving are at high risk of experiencing higher levels of distress. These dysfunctional beliefs are presented in the form of rules, verbal statements that specify what responsibilities one should expect in order to be a “good caregiver,” and are characterized as rigid, unrealistic, or highly demanding. Previous studies relied exclusively on self-report measures when assessing such dysfunctional beliefs about caregiving. The objectives of this study were: 1) to develop and validate an Implicit Relational Assessment Procedure (IRAP) to measure implicit dysfunctional beliefs about caregiving (CARE-IRAP), and 2) considering the relatively high age of the sample, to analyze the adaptation of the IRAP for older adults, comparing the IRAP performance between older adult caregivers and middle-aged caregivers. Participants were 123 dementia family caregivers with a mean age of 62.24 ± 12.89. Adaptations were made to the IRAP by adjusting the accuracy and response time criteria. The sample was split into middle-aged caregivers (below 60 years) and older adult caregivers (60 or older). The CARE-IRAP scores presented significant positive correlations with explicit measures of dysfunctional beliefs about caregiving and experiential avoidance in caregiving. A similar pattern of results was observed across the two age groups. The results revealed that caregivers endorse implicit dysfunctional beliefs about caregiving and offer preliminary support for the use of the IRAP as a valid measure of implicit caregiving beliefs. This exploratory study is the first to adapt the IRAP criteria to older adults, and future studies should further explore criteria suitable for this population.

To explore carers' views and acceptability of internet-delivered, therapist-guided, self-help Acceptance and Commitment Therapy (ACT) for family carers of people with dementia (iACT4CARERS). A qualitative approach with semi-structured interviews was employed with family carers (N = 23) taking part in a feasibility study of iACT4CARERS. The interviews were audio-recorded, transcribed and analysed using thematic analysis. Four overarching themes were identified: 1) usefulness and relevance of the content of the sessions, 2) sense of connectedness, 3) the impact of the intervention on participants and 4) acceptability of the online delivery. Positive carer experiences and intervention acceptability were facilitated by learning helpful ACT skills, perceiving the content of the session as relatable to the carers' needs, feeling connected to other carers and the therapist during the intervention, noticing the benefits of the intervention and the user-friendliness of the online platform. Recommendations for a full-scale trial were identified, such as the inclusion of some \"face-to-face\" interactions (e.g., via video call) between carers and therapists to facilitate a bidirectional interaction and the provision of an additional aide-memoire to improve the learning experiences. Overall, the intervention was acceptable to the family carers. The proposed recommendations should be considered in a full-scale trial.

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so.

ABSTRACTObjectivesThis study aimed to review the effectiveness of low-intensity cognitive behavioral therapy (CBT)–based interventions for informal dementia caregivers when compared to non-active control conditions. DesignLiterature searches were conducted in databases of published (PsycINFO, MEDLINE, CINAHL, Scopus) and unpublished (Open Grey, ISRCTN registry, ClinicalTrials.gov, ProQuest) literature. Individual meta-analyses were conducted for each outcome variable. Pooled intervention effect estimates were calculated as Hedge’s g using a random-effects model. Included studiesStudies examining the effect of low-intensity CBT-based interventions for informal caregivers for people with any progressive dementia were included. Randomized controlled trials and controlled clinical trials were included. MeasurementsOutcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). ResultsA total of five studies reported anxiety outcomes, 12 reported on depression, three reported on burden, and six reported distress outcomes. Results demonstrated a significant effect of low-intensity CBT-based interventions in reducing all examined psychological difficulties. Small effect sizes were found for anxiety ( g = 0.35), depression ( g = 0.27), and distress ( g = 0.33). A medium effect was found for burden ( g = 0.53). ConclusionsThe results provide initial support for low-intensity CBT-based interventions for dementia caregivers. Clinical implications and research recommendations are explored. Strengths and limitations of the study are discussed.

Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers' emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. Three key themes were generated from the analysis. reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

This study aimed to explore the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy for family carers (iACT4CARERS), enhanced with additional therapist guidance. To achieve this, a qualitative approach with semi-structured interviews was employed with ethnic minority carers who completed Enhanced iACT4CARERS (n=9) and therapists who supported them throughout the programme (n=5). The interviews were audio-recorded, transcribed and analysed using framework analysis. Four over-arching themes were identified: (1) Value of the programme to ethnic minority carers, (2) Barriers for ethnic minority carers, (3) Sense of connectedness through written feedback, and (4) Sense of connectedness through one-to-one sessions. Theme 1 reflected that ethnic minority carers valued ACT techniques, highlighting their usefulness and simplicity, leading to perceived benefits. Theme 2 revealed the irrelevance of examples provided of carer experiences throughout the programme due to differences in family carers’ experiences of providing care within ethnic minority communities. Theme 3 highlighted that carers’ engagement with the programme was facilitated by feelings of validation and encouragement received from their therapist via weekly written feedback. Finally, Theme 4 highlighted that additional one-to-one support sessions allowed both carers and therapists to develop strong therapeutic relationships. This enhanced subsequent text-based online interactions, allowing carers to be more open and engaged. Also, therapists reported that a strong sense of connectedness helped them to tailor their feedback. Enhanced iACT4CARERS that uses carers’ experiences more relevant to ethnic minority communities may be more acceptable.Key learning aims(1) To understand the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy (ACT), which has been found to be feasible and acceptable with White British carers.(2) To understand whether additional one-to-one support can help develop effective therapeutic relationships and thus improve the experiences of carers in completing the programme.(3) To learn whether any cultural adaptations are needed to improve the acceptability of internet-delivered self-help ACT among this population.