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.

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.

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.

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.

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.

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.

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.

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.

Contributions of Caregiver Management Styles to the Discrepancy Between Reported and Observed Task Performance in People with Dementia.

BACKGROUND: The identification and understanding of the discrepancy between caregivers' reports of people with dementia's (PwD) performance of activities of daily living (ADLs) and observed performance, could clarify what kind of support a PwD effectively needs when completing tasks. Strategies used by caregivers have not been included in the investigation of this discrepancy. OBJECTIVE: To (1) investigate if caregivers' report of PwD's ADL performance are consistent with PwD's observed performance; (2) explore if caregiver management styles, depression, and anxiety, contribute to this discrepancy. METHODS: PwD (n = 64) were assessed with standardized performance-based (Assessment of Motor and Process Skills, AMPS) and informant-based (Disability Assessment for Dementia, DAD) ADL assessments. Caregivers completed depression (PHQ-9), anxiety (GAD-7), and dementia management style (DMSS: criticism, active-management, and encouragement) questionnaires. Cohen's kappa determined agreement/disagreement in ADL performance. To investigate the potential discrepancy between the DAD and AMPS, a continuous variable was generated: comparative ADL score. Multiple linear regression analysis explored whether caregivers' management styles, depression or anxiety could explain the ADL discrepancy. RESULTS: Poor level of agreement between observed and reported ADL performance [k = -0.025 (95% CI -0.123 -0.073)] was identified, with most caregivers underestimating ADL performance. The combined model explained 18% (R2 = 0.18, F (5,55) â€Š= 2.52, p≤0.05) of the variance of the comparative ADL score. Active-management (ß= -0.037, t (60) â€Š= -3.363, p = 0.001) and encouragement (ß= 0.025, t (60) â€Š= 2.018, p = 0.05) styles made the largest and statistically significant contribution to the model. CONCLUSION: Encouragement style could be advised for caregivers who underestimate ADL performance, while active management style for those who overestimate it. Findings have scope to increase caregivers' abilities to support PwD activity engagement in daily life.

Internet-delivered guided self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): a qualitative study of carer views and acceptability.

PURPOSE: 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). METHODS: 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. RESULTS: 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. CONCLUSION: Overall, the intervention was acceptable to the family carers. The proposed recommendations should be considered in a full-scale trial.

Effects of group Acceptance and Commitment Therapy (ACT) on anxiety and depressive symptoms in adults: A meta-analysis.

BACKGROUND: A comprehensive meta-analysis quantitatively examining the effects of group Acceptance and Commitment Therapy (ACT) on anxiety and depressive symptoms is required to advance our understanding of its efficacy and moderating factors. METHODS: Four electronic databases were searched in August 2018. An update search was conducted in November 2021. Forty-eight randomised controlled trials (RCTs) were included in this review (3292 participants: anxiety = 34 RCTs, depression = 40 RCTs). RESULTS: The overall effect size for anxiety symptoms was medium-to-large (g = 0.52, p < 0.001; 95% CI = 0.30-0.73), while the overall effect size was small-to-medium for depressive symptoms (g = 0.47, p < 0.001; 95% CI = 0.31-0.64). Subgroup analyses demonstrated that group ACT was significantly superior to non-active controls (e.g., waiting list) in reducing anxiety and depressive symptoms. Group ACT was only significantly superior to active controls (e.g., CBT) in reducing depressive symptoms. Subgroup analyses also demonstrated that the effect size can vary depending on the number of sessions provided and the primary condition of participants recruited. LIMITATIONS: The number of studies included in each category of subgroup analyses was small and the risk of bias varied across studies. There was high heterogeneity among the included studies, and this might have affected the results. CONCLUSION: The current evidence suggests that group ACT may be effective in treating anxiety and depressive symptoms, perhaps more so for depressive symptoms when compared to other well-established treatments. The intensity of treatment and the targeted population may need to be considered when delivering group ACT.

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.

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.

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.

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.

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.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom.

The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom / Desafios no cuidado a pessoas com demência: comparando questões-chave entre Brasil e Reino Unido

ABSTRACT. The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

RESUMO. O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.