Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review.

The purpose of this mixed methods systematic review was to identify factors associated with anticipatory grief, post-death grief, and prolonged grief in informal carers of people living with Motor Neuron Disease (MND) to inform future research and practice. Six electronic databases were searched and two quantitative and eight qualitative studies were identified. Five overarching themes were generated through thematic synthesis. The findings suggest that there are factors that may affect different grieving processes. It might be particularly important to target some factors prior and after the death of the person living with MND such as the knowledge about the progression of the disease, changes in relationships, anxiety and depressive symptoms of carers, and planning for death of the care recipient. Factors that may affect all three grieving processes were also identified such as negative experiences of caregiving, experiences of losses, end of life and psychological support, and emotional avoidance coping.

Examining the Impact of Different Components of Sleep Quality on Anxiety Among Family Carers of People with Dementia.

Existing interventions for family carers of people with dementia tend to be less effective for anxiety than for depression. Therefore, identifying factors affecting carer anxiety is important to inform future interventions. This study conducted 2 multiple regression analyses using a sample of 91 family carers. The first regression model (∆R2 = .24), exploring the impact of demographic variables and carer stressors, demonstrated that hours of caring (ß = .33) and overall sleep quality (ß = .28) were significant predictors of anxiety. To further investigate the impact of sleep quality, the second model (∆R2 = .24) focussed on exploring the differential impact of various components of sleep quality on anxiety. Findings demonstrated that subjective sleep quality (ß = .33) and sleep disturbances (ß = .22) were significant predictors. Hours of caring per week, subjective sleep quality and sleep disturbances seem to be critical for treating anxiety in family carers. Future studies should investigate whether targeting these variables could improve carer anxiety.

Family Carers of People with Dementia in Japan, Spain, and the UK: A Cross-Cultural Comparison of the Relationships between Experiential Avoidance, Cognitive Fusion, and Carer Depression.

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model (N = 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression (ß = .10) and its indirect effect on carer depression through cognitive fusion (ß = .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples.Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

Cross-cultural analysis of the role of ambivalent feelings for understanding caregivers' depressive symptoms.

OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are considered to cause ambivalent feelings in caregivers that may contribute to understanding their depressive symptoms. Transnational research is needed in order to increase our knowledge about the cross-cultural equivalence of theoretical models to understand caregivers' mental health. The aim of this study was to cross-culturally analyze the association between BPSD, ambivalent feelings and depressive symptoms in two samples of family caregivers of people with dementia from Spain and the UK. METHODS: Participants in this study were 432 caregivers who completed measures of BPSD, ambivalent feelings and depressive symptoms. The association between the assessed variables was tested through path-analysis, with differences between countries tested through multigroup analysis. RESULTS: The results suggest that the influence of BPSD on caregivers' depressive symptoms is indirect, through ambivalent feelings. The observed associations were equivalent between countries and explained a significant percentage of the variance of depressive symptoms. CONCLUSION: The findings of this study provide, for the first time, evidence of equivalent cross-cultural paths analyzing the role of ambivalent feelings for understanding caregivers' depressive symptoms. The practical implications of these results are discussed.

Factors affecting the quality of life of family carers of people with dementia: the role of carer anxiety.

The role of anxiety on the quality of life of family carers of people with dementia is somewhat neglected in the carer literature. The current study aimed to investigate the impact of common risk factors (i.e., care recipient's neuropsychiatric symptoms, carer depression, and burden) and anxiety on QoL. This cross-sectional study recruited 89 family carers. Most of the participants were looking after a spouse with Alzheimer's or mixed dementia. A multiple regression analysis was conducted with carer QoL as a dependent variable. All risk factors (i.e., people with dementia's neuropsychiatric symptoms, carer depression, anxiety, and burden) were entered into the model simultaneously as independent variables. The model's R2 was 33%. The results demonstrated that anxiety was the only significant independent variable predicting carer QoL (ß = - 0.34, p = 0.03, 95% CI: - 0.64 to - 0.04). These results indicated that having more symptoms of anxiety was associated with worse QoL as measured by the ICEpop CAPability measure for Older people (ICECAP-O). These findings suggested that improving carer's anxiety may be particularly important in promoting QoL among family carers of people with dementia. Future interventions should target this variable to achieve the desired result of improving carer QoL.

Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease.

BACKGROUND: 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. OBJECTIVE: To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. METHODS: 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. RESULTS: Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies 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. Maintaining emotional coping 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. SIGNIFICANCE OF RESULTS: 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.

Reliability and validity of the Japanese version of the Valued Living Questionnaire Adapted to Caregiving.

OBJECTIVES: This study developed the Japanese version of the Valued Living Questionnaire Adapted to dementia Caregiving (J-VLQAC) and assessed its reliability and validity. METHODS: A 2-wave longitudinal survey with an interval of two weeks was conducted with Japanese dementia family caregivers (n = 521 at T1; n = 424 at T2). RESULTS: Confirmatory factor analysis demonstrated a poor fit to our data for the original 2-factor model. Exploratory factor analysis resulted in a new 3-factor model (i.e., Own Values, Family Values, and Health Values). Both models showed similar good internal consistency (Cronbach's alpha) and test-retest reliability. Significant correlations between the J-VLQAC and the Valuing Questionnaire (VQ) and measures assessing related constructs (e.g., cognitive fusion) supported good criterion validity and acceptable level of construct validity for both models. Compared to the original 2-factor model, the new 3-factor model showed higher incremental validity, which was assessed through the hierarchical regression analysis examining whether the J-VLQAC predicts depression, anxiety, and life satisfaction over and above the VQ. CONCLUSIONS: The J-VLQAC has good reliability and acceptable validity. CLINICAL IMPLICATIONS: The information gathered from the J-VLQAC can be used to tailor psychological support and help caregivers engage in activities that reflect their personal values.

Internet-delivered guided self-help acceptance and commitment therapy for family carers of people with dementia (iACT4CARERS): a feasibility study.

OBJECTIVES: The feasibility of research into internet-delivered guided self-help Acceptance and Commitment Therapy (ACT) for family carers of people with dementia is not known. This study assessed this in an uncontrolled feasibility study. METHOD: Family carers of people with dementia with mild to moderate anxiety or depression were recruited from primary and secondary healthcare services in the UK. Participants were offered eight, guided, self-help online ACT sessions adapted for the needs of family carers of people with dementia with optional online peer support groups. Pre-defined primary indicators of success included recruitment of 30 eligible carers over 6 months and ≥70% completing at least two online sessions. RESULTS: Thirty-three participants (110% of the target sample) were recruited over 6 months and 30 participants (91%) completed two or more sessions, and thus both indicators of success were met. Further, 70% of participants completed seven or all eight sessions, and 27% of participants were lost to follow-up, but none of the reasons for early withdrawal were related to the intervention. CONCLUSION: This study supports the feasibility, including recruitment and treatment completion. A full-scale trial to assess the clinical- and cost-effectiveness of the intervention including its long-term effects is warranted.

A New and Tidier Setting: How Does Environmental Clutter Affect People With Dementia's Ability to Perform Activities of Daily Living?

BACKGROUND: The relationship between the physical environment and the person with dementia's (PwD) activities of daily living (ADLs) task performance is controversial. Although the general assumption is that this population benefits from their home environment when performing ADLs, very few experimental studies have been conducted to date. OBJECTIVES: The aim was to investigate the influence of the environment (home vs. Research-lab) and the role of clutter on ADL performance. METHODS: Sixty-five PwD were evaluated with a performance-based ADL assessment (at home and clutter-free Research-lab). Paired t tests compared ADL performance and level of clutter in both environments. Multiple regression analysis investigated factors associated with better ADL performance. RESULTS: Overall, PwD performed better at home even though clutter was significantly lower in the Research-lab. When stratified by dementia stage, PwD in the moderate stage of the disease performed better at home. CONCLUSION: Absence of clutter in the Research-Lab did not appear to play a beneficial role in ADLs. When stratified by dementia stage, only PwD in the moderate stage appeared to benefit from their home environment when performing ADL tasks. Future studies are required to elucidate the wider role of the environment in supporting engagement in daily activities in different dementia stages.

Factors Related to the Quality of Life in Family Carers of People With Dementia: A Meta-Analysis.

OBJECTIVES: This meta-analysis aimed to (1) quantitatively synthesize evidence of factors related to the quality of life (QoL) of family carers of people with dementia and (2) explore moderating factors that may influence the strength of the relationship between such potential predictive factors and carer QoL. METHODS: Studies that investigated correlations between patient/carer factors and QoL in unpaid family carers of people with dementia and were published in English, Spanish, Portuguese, or Japanese were included. RESULTS: Thirty-three studies were identified. The pooled correlations with carer QoL (effect size) were significantly large for depression (-0.58), significantly moderate for subjective burden (-0.47), and significantly small for people with dementia's neuropsychiatric symptoms (-0.24). These results indicated to be robust in the context of publication bias. The results of subgroup analyses demonstrated the social and economic development status of the country where study participants resided did not moderate these effects. CONCLUSION: Carer depression, subjective burden, and people with dementia's neuropsychiatric symptoms may play a critical role in maintaining QoL of family carers regardless of the social and economic circumstances.

How does carer management style influence the performance of activities of daily living in people with dementia?

INTRODUCTION: People with Dementia (PwD)'s performance of activities of daily living (ADLs) has been associated with apathy, cognitive deficits, carers' depression and burden. However, it is not known if the carers' management style affects ADL performance, particularly alongside PwD's cognitive deficits and apathy. Thus, the aim of this study was to explore the contribution of intrinsic (cognition, apathy) and extrinsic (carer management styles) dementia factors to ADL performance. METHODS: PwD (n = 143) were assessed on global cognition (ACE-III); apathy (CBI-R); ADLs (Disability Assessment for Dementia-DAD). Carers' (n = 143) criticism, encouragement and active-management styles were assessed with the Dementia Management Strategy Scale (DMSS). Multiple linear regression analysis investigated contributions of carer styles, cognition, apathy (independent variables) on ADLs (dependent variable). RESULTS: The best model explaining the variance of the DAD scores included cognition (ß = 0.413, t(142)  = 4.463, p = 0.001), apathy (ß = -0.365, t(142)  = -5.556, p = 0.001), carer criticism (ß = -0.326, t(142)  = -2.479, p = 0.014) and carer encouragement styles (ß = 0.402, t(142)  = 2.941, p = 0.004) accounting for 40% of the variance of the DAD scores. CONCLUSIONS: This novel study demonstrated that PwD's level of apathy and the carer's use of criticism negatively affected ADL performance while PwD's cognitive abilities and carer encouragement style improved ADL performance. These findings have critical implications for the development of novel multi-component non-pharmacological interventions to maintain function and delay disease progression in dementia, as well as direct relevance to current carers and families.

Anxiety in Informal Dementia Carers: A Meta-Analysis of Prevalence.

Much of the carer literature has focused on depression and burden as primary outcomes and anxiety appear somewhat neglected. Providing evidence on the prevalence of carer anxiety is critical as it can enhance awareness among professionals, which in turn can lead to improved access to efficacious treatments. This meta-analysis updated the previous review conducted in 2007 to estimate the up-to-date prevalence of anxiety in informal carers for people with dementia. Literature searches were conducted in databases of published and unpublished literature. Events and sample size data were pooled using a random effects model to obtain an overall prevalence percentage. A total of 10 studies were included, resulting in a pooled estimate of anxiety prevalence at 32.1% (95% confidence interval: 20.6%-46.2%, P = .01). Significant heterogeneity was found, which was not reduced following sensitivity analysis. This study suggests anxiety is a prevalent difficulty experienced by dementia carers. Additional research recommendations and clinical implications are discussed.

Nonpharmacological Interventions to Improve Depression, Anxiety, and Quality of Life (QoL) in People With Dementia: An Overview of Systematic Reviews.

This overview aimed to systematically synthesize evidence from existing systematic reviews to signpost practitioners to the current evidence base on nonpharmacological interventions to improve depression, anxiety, and quality of life (QoL) in people with dementia and to discuss priorities for future research. The databases MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials were searched in August 2017 with an updated search in January 2019. Fourteen systematic reviews of randomized controlled trials of nonpharmacological interventions were identified. Dementia stage was rated moderate or severe in the majority of the reviews and type of dementia varied. Interventions reported to be effective were cognitive stimulation (QoL: standardized mean difference [SMD] = 0.38), music-based therapeutic interventions (depression: SMD = -0.27, anxiety: SMD = -0.43, QoL: SMD = 0.32), and psychological treatments (mainly cognitive behavior therapy; depression: SMD = -0.22, anxiety: MD = -4.57). Although health-care professionals are recommended to continue using these approaches, future research needs to focus on the type and form of interventions that are most effective for different stages and types of dementia.

A meta-analysis of low-intensity cognitive behavioral therapy-based interventions for dementia caregivers.

OBJECTIVES: This 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. DESIGN: Literature 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 STUDIES: Studies 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. MEASUREMENTS: Outcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). RESULTS: A 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). CONCLUSIONS: The 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.

Development of a short form of the Attitudes to Ageing Questionnaire (AAQ).

OBJECTIVES: The original 24-item Attitudes to Aging Questionnaire (AAQ) is well established as a measure of attitudes to aging, comprising domains of psychosocial loss (PL), physical change (PC), and psychological growth (PG). This paper presents a new 12-item short form Attitudes to Aging Questionnaire (AAQ-SF). METHODS: The original field trial data used to develop the 24-item AAQ (AAQ-24) were used to compare 6-item, 9-item, and 12-item versions of AAQ-SF (sample 1, n = 2487) and to test the discriminative validity of the selected 12-item AAQ-SF (sample 2, n = 2488). Data from a separate study reporting on the AAQ-24 (sample 3, n = 792) verified the analyses. RESULTS: The 12-item AAQ-SF reported adequate internal consistency in both sample 1 (PL α = .72, PC α = .72, and PG α = .62) and sample 3 (PL α = .68, PC α = .73, and PG α = .61). The AAQ-SF functioned consistently with the profile of the AAQ-24 in that subscales in both formats of this measure discriminate between respondents on key parameters such as depression, subjective health status, and overall quality of life in sample 2. Sample 3 also demonstrated the AAQ-SF can detect the differences in attitudes toward aging between individuals experiencing anxiety and depression and those without psychological symptoms. Confirmatory factor analysis confirmed that the structure of the AAQ-SF mirrors that of the original 24-item AAQ. CONCLUSIONS: The AAQ-SF is a robust measure of attitudes toward aging, which can reduce respondent burden when used within longer questionnaire batteries or longitudinal research. Copyright © 2017 John Wiley & Sons, Ltd.

Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions.

ABSTRACTObjective: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). METHODS: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. RESULTS: 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. CONCLUSIONS: 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.

A meta-analysis of third wave mindfulness-based cognitive behavioral therapies for older people.

OBJECTIVES: The aim of this study is to review the effectiveness of third wave mindfulness-based cognitive behavioral therapies (CBTs) for depressive or anxiety symptomatology in older adults across a wide range of physical and psychological conditions. METHODS: Electronic literature databases were searched for articles, and random-effects meta-analysis was conducted. RESULTS: Ten studies met the inclusion criteria, of which nine reported the efficacy of interventions on depressive symptoms and seven on anxiety symptoms. Effect-size estimates suggested that mindfulness-based CBT is moderately effective on depressive symptoms in older adults (g = 0.55). The results demonstrated a similar level of overall effect size for anxiety symptoms (g = 0.58). However, there was a large heterogeneity, and publication bias was evident in studies reporting outcomes on anxiety symptoms, and thus, this observed efficacy for late-life anxiety may not be robust. The quality of the included studies varied. Only one study used an active psychological control condition. There were a limited number of studies that used an intent-to-treat (last observation carried forward method) analysis and reported appropriate methods for clinical trials (e.g., treatment-integrity reporting). CONCLUSIONS: Third wave mindfulness-based CBT may be robust in particular for depressive symptoms in older adults. We recommend that future studies (i) conduct randomized controlled trials with intent-to-treat to compare mindfulness-based CBT with other types of psychotherapy in older people and (ii) improve study quality by using appropriate methods for checking treatment adherence, randomization, and blinding of assessors. Copyright © 2016 John Wiley & Sons, Ltd.

Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.

OBJECTIVE: To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease. METHODS: Seventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (Relationship Closeness Scale), familism levels (Familism Scale), and reported hours of care provided. Multiple linear regression analyses were conducted to explore factors impacting carer AG. RESULTS: AG total scores showed that 50.7% of carers were experiencing common grieving reactions, 22.6% presented intense grieving emotions, and 26.7% presented low grieving responses.Disease severity (regression coefficient, ß = -0.31, p = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (ß = -0.34, p = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, R2=0.38, p < 0.001).Regarding AG subscales, Personal Sacrifice Burden (R2=0.43, p < 0.001) was predicted by disease severity (ß = -0.39, p < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (ß = -0.27, p = 0.03, 95%CI -0.49 to -0.03; R2 = 0.21, p = 0.01) and Worry and Felt Isolation (ß = -0.42, p < 0.001, 95%CI -0.63 to -0.20; R2=0.33, p < 0.001). CONCLUSION: This study suggests that disease-related factors may be the strongest predictors of carer AG. Interventions addressing carers' understanding and management of MND symptoms seem crucial to support their experiences of loss and their acceptance of MND. Evidence-based support for carers in MND services is required.

Does Avoiding Distressing Thoughts and Feelings Influence the Relationship between Carer Subjective Burden and Anxiety Symptoms in Family Carers of People with Dementia?

Anxiety remains understudied in family carers of people with dementia. Understanding factors that moderate the relationship between stressors and anxiety symptoms in this population is critical to inform interventions. This study examined whether generic experiential avoidance (AAQ-II) and experiential avoidance specific to caregiving-related thoughts and feelings (EACQ) moderate the relationship between subjective burden (ZBI-12) and anxiety symptoms (GAD-7) in carers of people with dementia. The first model (R2 = .66, ∆R2 = .03) exploring the moderating effect of AAQ-II demonstrated a significant interaction term between AAQ-II and subjective burden. The second model (R2 = .53, ∆R2 = .03), exploring the moderating effect of EACQ, demonstrated a significant interaction term between EACQ and subjective burden. These results provide evidence that carers with higher levels of experiential avoidance may be particularly prone to the negative effect of subjective burden on anxiety symptoms. Clinical implications for assessment of experiential avoidance and its treatment in carers of people with dementia are discussed.

What are the educational and support needs of family carers looking after someone in the early stages of Alzheimer's disease? A qualitative retrospective approach.

The current study aimed to identify the educational and support needs of family carers of people with dementia in the early stages of dementia by employing a qualitative approach with retrospective semi-structured interviews with family carers of people in the later stages of Alzheimer's disease (AD). Semi-structured individual interviews were conducted via telephone or Microsoft Teams video call. Purposive sampling was used to recruit twelve family carers of people with moderate or severe AD. An interview guide was used to explore the retrospective views of the carer's educational and support needs in the early stages of AD. The interviews were audio-recorded transcribed and analysed using thematic analysis. Three overarching themes were identified. Theme 1 highlighted that family carers experienced frequent and overwhelming need to fulfil a family obligation and feelings of guilt to seek help, which acted as barriers to seeking support, in the early stages. In theme 2, family carers rarely received support in the early stages and available resources were limited to self-help materials. Finally, in Theme 3, family carers wanted to receive interpersonal tailored support to seek practical advice and to learn psychological skills to build resilience in the early stages to overcome emotional challenges. The development of interventions that are specifically designed for family carers in the early stages is critical. The key components to be considered for future interventions are discussed.