The Relationship Between Decision-making Capacity and the Domains of Awareness in Alzheimer Disease.

People with Alzheimer dementia (PwAD) who are aware of their overall cognitive function and diagnosis are more likely to be judged competent in decision-making capacity. Therefore, we aimed to investigate the relationship between decision-making capacity and the different domains of awareness and the relationship between decision-making capacity and the cognitive and clinical impairment of the PwAD. Using a cross-sectional design, we included 121 PwAD and their caregivers. Awareness was assessed across domains, including cognitive functioning and health condition, functional activity impairments, emotional state, social functioning, and interpersonal relationships. The MacArthur Competence Assessment Tool for Treatment was adopted to gather information about decision-making abilities. We found that decision-making capacity is related to the cognitive and functional domains of awareness and relatively independent of the emotional functioning and the relationship domains. Our finding highlighted that PwAD who are unaware of the disease or the cognitive and functional impairments might be unlikely to appreciate the personal benefits of a proposed health treatment or to understand and judge the personal consequences of a decision accurately.

Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers.

OBJECTIVE: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). METHODS: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers' quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. RESULTS: A significant difference was found in caregivers' burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers' quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers' perspective of quality of life of care recipient and caregivers' hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers' burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers' burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers' depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers' depressive symptoms in both the groups. CONCLUSION: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

Domains of awareness in Alzheimer's disease: The influence of executive function.

OBJECTIVE: Awareness is a developing area in dementia research and the evaluation of its domains has been increasingly included as part of care for people with Alzheimer's disease (PwAD). Our aim is to examine whether executive dysfunction is associated with awareness domains. METHODS: A consecutive series of 75 people with mild-to-moderate Alzheimer's disease completed assessments about global cognitive function, executive functioning, and their awareness of disease. Their primary caregivers' dyad provided information about demographics, awareness of disease, dementia severity, neuropsychiatric symptoms, and functional status. RESULTS: Different types of executive dysfunction were presented as a predictor for awareness of disease (cognitive flexibility, inhibitory control, and working memory), of emotional state (short-term memory and attention) and of social functioning and relationships (visuospatial organization, integrative functions, and abstract thinking). Awareness of cognitive functioning and health condition and of functional activity impairments exhibit only global cognitive function as a predictor. CONCLUSIONS: Findings confirm some degree of independence between awareness domains. The importance of identifying differences in domains of awareness relies in the understanding of awareness as a clinical phenomenon in order to guide the management and support of PwAD and their caregivers.

Patterns of discrepancies in different objects of awareness in mild and moderate Alzheimer's disease.

Objectives: Awareness is considered a heterogeneous and non-linear phenomenon in dementia. We aim to investigate patterns of change of different domains of awareness (awareness of cognitive functioning and health condition, activities of daily living, emotional state, social functioning, and relationships) in people with mild and moderate Alzheimer's disease (AD) and aspects related to each domain.Method: Cross-sectional assessment of dyads of people with AD (PwAD) and caregivers (n = 128; CDR1 = 74, CDR2 = 54). PwAD completed assessments about quality of life, cognition and their awareness of disease. Caregivers provided information about PwAD and received quality of life and burden of care assessments.Results: Mild AD group showed a mildly impaired awareness (n = 40; 54.05%), while moderate AD group, showed higher presence of moderately impaired awareness (n = 22; 40.74%). There was a significant difference between groups in awareness of cognitive functioning and health condition (p < 0.004), functional activity impairments (p < 0.001) and total score of awareness (p < 0.01). Conversely, awareness of emotional state (p = 0.22) and of social functioning and relationship (p = 0.44) presented no significant difference between groups. Unawareness of functional activity impairments showed higher discrepancy scores between PwAD and caregivers in both groups.Conclusions: Significant differences were found only in patterns of discrepancies in awareness of cognitive functioning and health condition, of ADL and socio-emotional functioning. Different factors are related to different domains in mild and moderate group, reinforcing the heterogeneity of awareness in dementia. ADL deficits have an important role in awareness phenomenon, independent of the severity of disease.

Awareness in Dementia: Development and Evaluation of a Short Version of the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD-s) in Brazil.

Awareness of disease is defined as the recognition of changes caused by the deficits related to the disease process. We aimed to examine the psychometric properties of the short versions of the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD-s), a multidimensional awareness scale. Using a cross-sectional design, we included 201 people with dementia and their family caregivers. The creation of the short versions was based on items with higher loadings on each factor, the correlations between the short versions and demographic or clinical variables and the relevance of the item to the respondent population. Three short versions were created: version 1 and 3, with 12 items and version 2, with 16 items. The short versions correlated very strongly with the full scale and with the 4 factors of the original scale, maintaining the multidimensional nature of the ASPIDD. Loss of awareness was associated with worse quality of life, decreased functionality and cognitive level, and higher caregiver burden across the short versions. Considering the appropriateness of the items and their clinical relevance, we recommend version 3 for use. With only 12 items, the time required for the completion of the scale is short, while maintaining robust psychometric properties.

Differences in Awareness of Disease Between Young-onset and Late-onset Dementia.

INTRODUCTION: Awareness of disease is the ability to acknowledge changes caused by deficits related to the disease process. We aimed to investigate whether there are differences in awareness of disease between young-onset dementia (YOD) and late-onset dementia (LOD) and examined how awareness interacts with cognitive and clinical variables. MATERIALS AND METHODS: Using a cross-sectional design, 49 people with YOD and 83 with LOD and their caregivers were included. We assessed awareness of disease, cognition, functionality, stage of dementia, mood, neuropsychiatric symptoms, and caregivers' quality of life (QoL) and burden. RESULTS: We found that people with YOD were more aware of the disease than people with LOD (P<0.005). Multivariate linear regression revealed that higher impairment in functional level was associated with unawareness in both groups (YOD=P<0.001; LOD=P<0.001). In the YOD group, preserved awareness was related to worse self-reported QoL (P<0.05), whereas, in LOD, deficits in awareness were related to caregivers' worst perceptions about people with dementia QoL (P<0.001). CONCLUSIONS: The findings highlight the distinct nature of awareness between YOD and LOD. The YOD group had higher levels of disease awareness compared with the LOD group, even though the first group had a greater impairment in functionality.

Resilience in Carers of People With Young-Onset Alzheimer Disease.

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.

Discrepancies Between Alzheimer's Disease Patients' and Caregivers' Ratings About Patients' Quality of Life: A 1-year Observation Study in Brazil.

OBJECTIVES: We investigated the factors associated with discrepancies between patients' and caregivers' ratings about patients' general quality of life (QoL) and about the domains of Quality of Life in Alzheimer's disease (QoL-AD) Scale at baseline and 12 months. METHODS: This was a longitudinal study that comprised 114 outpatients with AD and their caregivers. Patients were assessed with the QoL-AD, Mini-mental State Examination, Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, Cornell Scale for Depression, Functional Activities Questionnaire, and Neuropsychiatric Inventory, and Clinical Dementia Rating Scale. Caregivers answered the QoL-AD, Zarit Burden Interview and Sociodemographic Questionnaire. RESULTS: Linear regression analyses indicated that the factors associated with discrepancies of patients' and caregivers' ratings of patients' QoL-AD were impaired awareness and caregiver burden at baseline and impaired awareness at 12 months. Moreover, the factor associated with discrepancies in the domain memory was impaired awareness and in the domain ability to do chores, impaired awareness and functional deficit. CONCLUSIONS: The discrepancies between patients and caregivers were related to awareness and caregiver burden at baseline and to awareness at 12 months. These results raise questions regarding the subjective nature of QoL and the validity of patients' evaluation of their own QoL.

Caregivers' Perspectives of Quality of Life of People With Young- and Late-Onset Alzheimer Disease.

BACKGROUND: Quality of life (QoL) is a growing area of interest in dementia research. This study aims to investigate the caregivers' perspective about the QoL of people with young-onset Alzheimer disease (YOAD) and late-onset Alzheimer disease (LOAD). We also aim to investigate factors that might be associated to caregivers' perspective in YOAD and LOAD. METHODS: We included 110 people with Alzheimer disease (PwAD; 53 YOAD) and their primary caregivers. The PwAD completed assessments about their QoL and cognition. The caregivers provided information about the PwAD (demographics, QoL, ability to perform activities of daily living, mood, and dementia severity) and had burden of care assessed. RESULTS: We did not find a difference in caregivers' perspectives of PwAD QoL according to the age at onset. However, the linear regression analysis indicated that caregivers' burden ( P < .01) and PwAD depressive symptoms ( P < .05) were significantly related to the caregivers' perspective of YOAD QoL. Caregivers' burden ( P < .01), years of education ( P < .05), and self-reported QoL ( P < .01) were significantly related to the caregivers' perspective of LOAD QoL. CONCLUSIONS: The factors that drive the perceptions of caregivers of PwAD QoL may vary according to the age at onset. The study provides basic information on caregivers' perspectives of PwAD QoL to create more effective interventions according to the age at onset.

Factors Related to Different Objects of Awareness in Alzheimer Disease.

Awareness of deficits is a multidimensional phenomenon described as the ability to acknowledge difficulties and impairments. We investigated whether unawareness affects distinct domains to different degrees and identified the factors related to the awareness impairment in Alzheimer Disease (AD). Using a cross-sectional design, we assessed 89 people with AD (PwAD) and their caregivers. Awareness was evaluated by scoring discrepant responses between PwAD and their caregivers across domains including cognitive functioning and health condition, functional activity impairments, emotional state, social functioning, and interpersonal relationships. The awareness of functional activity impairments domain showed a greater discrepancy compared with the other domains. Multiple regression analysis revealed that lack of awareness of cognitive functioning and health condition was related to PwAD unawareness of functional activity impairments, age, and caregiver burden. The emotional state domain was related to PwAD unawareness of functional activity impairments and depressive symptoms. There was also a relationship between the social functioning and relationships domain and caregiver burden. The functional activity impairments domain was related to deficits in the following domains: cognitive functioning and health condition, emotional state, social and emotional functioning, and PwAD self-reported quality of life. Although we observed that 1 domain can influence another, our results suggest that the factors related to each of the different objects of awareness are varied.

Functional Status Predicts Awareness in Late-Onset but not in Early-Onset Alzheimer Disease.

This study aims to assess whether there are differences between the level of awareness in early-onset Alzheimer disease (EOAD) and late-onset Alzheimer disease (LOAD) and to test its association with quality of life (QOL). A consecutive series of 207 people with Alzheimer disease and their caregivers were selected from an outpatient unit. There were no significant differences in awareness. In LOAD, impairment on awareness was predicted by functional level (ß = .37, P < .001), self ( P = .006), and informant report of QOL ( P = .010). The predictors of unawareness in EOAD were self ( P = .002) and informant report of QOL ( P < .001). There is a specific profile of functional deficits underlying awareness in people with LOAD. Additionally, reports of EOAD QOL were more strongly related to awareness than in people with LOAD.

Factors associated with caregiver burden: comparative study between Brazilian and Spanish caregivers of patients with Alzheimer's disease (AD).

BACKGROUND: Transcultural studies regarding the comparison of levels of burden in caregivers of patients with Alzheimer's disease (AD) from Europe and Latin America are rare. We designed this study to investigate the differentiating factors associated with burden in Brazilian and Spanish caregivers of patients with AD. METHODS: This is a cross-sectional study composed by samples of outpatients with AD and their caregivers from Brazil (n = 128) and Spain (n = 146). Caregivers answered the Zarit Burden Interview (ZBI) and a Sociodemographic Questionnaire. Patients were assessed with the Mini-Mental State Examination (MMSE), Functional Activities Questionnaire (FAQ), Disability Assessment for Dementia (DAD), Neuropsychiatric Inventory (NPI), and Clinical Dementia Rating (CDR) Scale. RESULTS: In the multivariate regression analysis, high burden levels were reported in Brazil, when caregivers were female (p = 0.025) and when patients did not attend Day Care Center (p = 0.025). In Spain, high burden levels were associated with living with the patient (p = 0.014), younger caregivers (p = 0.003), and participation of patients at Day Care Center (p = 0.046). Also, different neuropsychiatric symptoms explained high burden levels: in Brazil, depression (p < 0.001) and anxiety (p = 0.024) and, in Spain, apathy/indifference (p < 0.001), agitation/aggression (p = 0.019) and irritability/lability (p = 0.027). CONCLUSIONS: Caregivers' gender, patients who attended Day Care Center and neuropsychiatric symptoms were differentiating factors in the burden of Brazilian and Spanish caregivers.

Self- and Other-Evaluation in Alzheimer's Disease.

BACKGROUND: Impaired awareness of ability is common in dementia and has important clinical implications. Evidence from different clinical groups has shown that awareness can vary according to whether evaluation refers to self or other performance. OBJECTIVE: The present study aimed to investigate awareness for self- and other-performance in Alzheimer's disease (AD) patients, exploring if results vary according to cognitive domain of the tasks. It was hypothesized that, particularly for memory tasks, AD patients would be inaccurate in relation to self-but not other-performance. METHODS: Twenty-two mild to moderate AD patients and twenty-two healthy older adults participated. Two tasks, with reaction time and working memory tasks, were carried out, and each had a success and a failure condition. Participants were asked to estimate their own performance, as well as the performance of another person they observed. Awareness of performance was measured comparing participant estimations of performance with actual performance. RESULTS: For both the reaction time and working memory tasks, results indicate that participants from both groups overestimated the performance in the failure condition and underestimated the performance in the success condition. They tended to overestimate more the performance of the other person compared to themselves. Additionally, for the working memory task, AD patients tended to overestimate more performances compared to controls. CONCLUSION: Findings suggest that the AD and control groups present the same pattern, with attribution of better performance to another person. For the AD group, the pattern of response was different for memory tasks, which may suggest domain-specific limited awareness.

Domains of quality of life in Alzheimer's disease vary according to caregiver kinship.

INTRODUCTION: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer's disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers' quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. METHODS: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6). The PwAD and their caregivers completed questionnaires about their QoL, awareness of disease, cognition, severity of dementia, depression, and burden of caring. RESULTS: The comparison between caregiver types showed that spouse-caregivers were older, with higher levels of burden and lower scores for cognition. Caregivers' total QoL scores were not significantly different according to type of kinship. However, there were significant differences in the domains physical health (p = 0.04, Cohen's d [d] = -0.42), marriage (p = 0.01, d = 1.31), and friends (p = 0.04, d = -0.41), and life as a whole showed a trend to difference (p = 0.08, d = -0.33). When QoL domains were analyzed within dyads, there were significant differences between members of spouse dyads in the domains energy (p = 0.01, d = -0.49), ability to do things for fun (p = 0.01, d = -0.48), and memory (p = 0.000, d = -1.07). For non-spouse dyads, there were significant differences between caregivers and PwAD for the QoL domains memory (p = 0.004, d = -0.63), marriage (p = 0.001, d = -0.72), friends (p = 0.001, d = -0.65), and ability to do chores (p = 0.000, d = -0.76). CONCLUSIONS: Differences were only detected between spouse/non-spouse-caregivers when QoL was analyzed by domains. We speculate that spouse and non-spouse caregivers have distinct assessments and perceptions of what is important to their QoL.

Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study.

PURPOSE: To examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time. METHOD: A longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry. RESULTS: Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia-live in the moment, ignore the dementia, and make the best of it-seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual's awareness of dementia. CONCLUSION: Unawareness of dementia may have an important adaptive function for preserving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivity.

The Relationship between Social Cognition and Executive Functions in Alzheimer's Disease: A Systematic Review.

INTRODUCTION: Social Cognition (SC) is a complex construct that reflects a wide variety of implicit and explicit cognitive processes. Many neurocognitive domains are associated with SC and the Executive Function (EF) is the most representative one. We conducted a systematic review aiming at clarifying whether SC impairments are associated with dysfunction on EF in people with Alzheimer Disease (AD). METHODS: The search, based on the Preferred Reporting Items for Systematic Reviews and Meta- Analyses (PRISMA), was undertaken between January 2007 and December 2019 using Pubmed, SciELO, BIREME and Thomson Reuters Web of Science electronic databases. The keywords were SC, AD, EF, Neuropsychological functioning and Executive Disorder. RESULTS: One hundred thirty-six articles were identified and fifteen were included. These studies are not in agreement about the extent of SC deficits in AD, mainly in the mild stage of the disease. EF deficits, specifically inhibition and the ability to manipulate verbal information, are associated with the impairment in SC in AD. SC decreases with the disease progression, a relationship explained by global cognition impairment and SC specific symptoms. CONCLUSION: SC impairment is associated with disease progression, mainly because of the decline in EF. Studies on SC components are unequal, contributing to a frequent generalization of Theory of Mind results, and often hampering the investigation of other components, mainly empathy. More precise knowledge about SC functioning in AD may contribute to a better understanding of the behavioral changes and interpersonal interactions.

Behavioral and Psychological Symptoms Impact Clinical Competence in Alzheimer's Disease.

Decision-making is considered a fundamental aspect of personal autonomy and can be affected in psychiatric and neurologic diseases. It has been shown that cognitive deficits in dementia impact negatively on decision-making. Moreover, studies highlighted impaired clinical competence in neuropsychiatric disorders, such as schizophrenia and bipolar disorder. In this context, the current study explored the relationship between behavioral and psychological symptoms of dementia (BPSD) and clinical competence, especially the capacity to consent to treatment, in Alzheimer's disease (AD). Seventy-one patients with mild to moderate AD participated, completing assessments for capacity to consent to treatment, general cognition and neuropsychiatric disturbances. For each neuropsychiatric symptom, patients with and without the particular disturbance were compared on the different subscales of the MacArthur Competence Tool for Treatment (MacCAT-T; Understanding, Appreciation, Reasoning and Expression). The results showed that patients presenting delusions, as well as apathetic patients, had a lower ability to express a clear treatment choice compared to patients without these symptoms. By contrast, patients with dysphoria/depression had higher scores on this variable. Additionally, AD patients with euphoria had more difficulties discussing consequences of treatment alternatives compared to patients without this disturbance. None of the differences were confounded by global cognition. There were no between-group differences in clinical decision-making for patients with hallucinations, agitation/aggression, anxiety, irritability, disinhibition and aberrant motor behavior. These findings highlight the importance of taking BPSD into account when assessing decision-making capacity, especially clinical competence, in AD. Furthermore, reducing BPSD may lead to better clinical competence in patients with AD, as well as to improvements in patients and caregivers' quality of life.

Mood-congruent recollection and anosognosia in Alzheimer's disease.

The aim of the study was to investigate experimentally the impact of current mood state on anosognosia or awareness of symptoms in AD patients, in which mood state was manipulated by giving tasks that were either easy (success condition) or very difficult (failure condition). Twenty-two patients with mild to moderate AD participated. Four success-failure manipulation (SFM) computerized tasks were used as mood induction procedures, two based on reaction time tasks and the other on memory tasks. Level of awareness and the current mood state were assessed before and after each task, using a modified version of the Anosognosia Questionnaire for Dementia and a self-reported questionnaire respectively. For both types of task, the results indicate that the emotional state of the participants was similar before performing the tasks and that only the failure conditions induced a negative mood state. Additionally, regarding the level of awareness, there were no significant differences after the reaction time tasks but for the memory tasks, there was greater awareness of symptoms after performing the task in the failure condition. To the best of our knowledge, this study is the first exploring experimentally the impact of mood on anosognosia in AD. The results showed an improvement of awareness of symptoms after negative mood induction, but only when the task used in the SFM was memory-based.

Psychosocial impact of early onset dementia among caregivers.

INTRODUCTION: There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. OBJECTIVE: To analyze the psychosocial impact of EOD in family caregivers. METHODS: The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. RESULTS: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. CONCLUSION: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.