Marcela Moreira Lima Nogueira

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants

INTRODUCTION Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. OBJECTIVE This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. METHODS Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. RESULTS AND CONCLUSIONS Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

Facial expression recognition in Alzheimer’s disease: a longitudinal study

Facial recognition is one of the most important aspects of social cognition. In this study, we investigate the patterns of change and the factors involved in the ability to recognize emotion in mild Alzheimers disease (AD). Through a longitudinal design, we assessed 30 people with AD. We used an experimental task that includes matching expressions with picture stimuli, labelling emotions and emotionally recognizing a stimulus situation. We observed a significant difference in the situational recognition task (p ≤ 0.05) between baseline and the second evaluation. The linear regression showed that cognition is a predictor of emotion recognition impairment (p ≤ 0.05). The ability to perceive emotions from facial expressions was impaired, particularly when the emotions presented were relatively subtle. Cognition is recruited to comprehend emotional situations in cases of mild dementia.

Awareness of Disease in Dementia: Factor Structure of the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia

Despite the growing understanding of the conceptual complexity of awareness, there currently exists no instrument for assessing different domains of awareness in dementia. In the current study, the psychometric properties of a multidimensional awareness scale, the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), are explored in a sample of 201 people with dementia and their family caregivers. Cronbachs alpha was high (α = 0.87), indicating excellent internal consistency. The mean of corrected item-total correlation coefficients was moderate. ASPIDD presented a four-factor solution with a well-defined structure: awareness of activities of daily living, cognitive functioning and health condition, emotional state, and social functioning and relationships. Functional disability was positively correlated with total ASPIDD, unawareness of activities of daily living, cognitive functioning, and with emotional state. Caregiver burden was correlated with total ASPIDD scores and unawareness of cognitive functioning. The results suggest that ASPIDD is indeed a multidimensional scale, providing a reliable measure of awareness of disease in dementia. Further studies should explore the risk factors associated with different dimensions of awareness in dementia.

Quality of life in mild dementia: patterns of change in self and caregiver ratings over time.

Objectives: To determine changes over time in self and caregiver ratings of quality of life (QoL) in people with dementia (PwD) and to identify factors associated with changes in QoL ratings. Methods: In this longitudinal study, 69 people with mild Alzheimer’s disease and their caregivers were assessed at baseline and after 1 year. We examined the association of QoL ratings with the following variables at the two time points: awareness of disease, cognitive status, mood, functionality, neuropsychiatric symptoms, and caregiver burden. Multivariate regression analyses were conducted to examine the contribution of co-factors. Results: At baseline, PwD self-ratings of QoL were associated with caregiver ratings of PwD QoL (p = 0.001). Caregiver ratings were associated with PwD mood (p = 0.001) and self-rated QoL (p = 0.001). After 1 year, caregiver ratings of PwD QoL changed significantly (p = 0.049, d = -0.27), whereas PwD self-ratings did not (p = 0.89, d = 0.09). PwD awareness of disease changed significantly (p = 0.001) at 1 year, having declined in 25.4% and improved in 12.3% of participants. PwD QoL self-ratings were associated with caregiver ratings (p = 0.001). Caregiver ratings of PwD QoL after 1 year were associated with PwD mood (p = 0.029), self-reported QoL (p = 0.001), and awareness of disease (p = 0.033). Conclusions: The association between self and caregiver ratings of PwD QoL was maintained over 1 year. The primary factors accounting for the change in caregiver ratings were PwD mood and awareness of disease. QoL and cognitive impairment seem to be relatively independent in mild dementia.

Concepts and objects of awareness in Alzheimer’s disease: an updated systematic review

Objectives To compare and discuss the objects of awareness in Alzheimer’s disease (AD): awareness of cognitive deficits, of functional activities, of social-emotional functioning and behavioral impairment. Methods A search in the PsycINFo, Pilots, PubMed/Medline and ISI electronic databases according to Prisma methodology was performed. We included studies about awareness in people with AD published between 2010 and 2015, with the combination of keywords: “Alzheimer AND awareness of deficits”, “Alzheimer AND anosognosia”, “Alzheimer AND insight”, “dementia AND awareness of deficits”, “dementia AND anosognosia”, “dementia AND insight”. The articles were categorized according to the specific object of awareness. Results Seven hundred and ten records were identified and, after application of the exclusion criteria, 191 studies were retrieved for potential use. After excluding the duplicates, 46 studies were included. Most studies assessed the cognitive domain of awareness, followed by the functional, social-emotional, and behavioral impairment domains. Memory deficits were not sufficient to explain impaired awareness in AD. Longitudinal studies did not find discrepancies between patients and caregivers’ reports, indicating that awareness is not related to cognition. Conflicting findings were observed, including the relation between awareness, mood, severity of disease, and personal characteristics. Conclusions The studies show lack of conceptual consensus and significant methodological differences. The inclusion of samples without differentiation of dementia etiology is associated to symptomatic differences, which affect awareness domains. Awareness in AD is a complex and multidimensional construct. Different objects elicit different levels of awareness.

Cross-cultural adaptation of the Social and Emotional Questionnaire on Dementia for the Brazilian population

CONTEXT AND OBJECTIVE Impairments in social and emotional functioning may affect the communication skills and interpersonal relationships of people with dementia and their caregivers. This study had the aim of presenting the steps involved in the cross-cultural adaptation of the Social and Emotional Questionnaire (SEQ) for the Brazilian population. DESIGN AND SETTING Cross-cultural adaptation study, conducted at the Center for Alzheimers Disease and Related Disorders in a public university. METHODS The process adopted in this study required six consecutive steps: initial translation, translation synthesis, back translation, committee of judges, pretesting of final version and submission to the original author. RESULTS In general, the items had semantic, idiomatic, conceptual and experiential equivalence. During the first pretest, people with dementia and their caregivers had difficulties in understanding some items relating to social skills, which were interpreted ambiguously. New changes were made to allow better adjustment to the target population and, following this, a new pretest was performed. This pre-test showed that the changes were relevant and gave rise to the final version of the instrument. There was no correlation between education level and performance in the questionnaire, among people with dementia (P = 0.951). CONCLUSION The Brazilian Portuguese version of the Social and Emotional Questionnaire was well understood and, despite the cultural and linguistic differences, the constructs of the original version were maintained.

The Independence Between Awareness and Cognitive Decline in Alzheimer's Disease

Objectives This study investigates the factors associated with the impairment of awareness in mild dementia. Methods Using a longitudinal design, 69 people with mild Alzheimers disease (AD), and their family caregivers were interviewed and reassessed after one year. The dyads completed the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Quality of Life in Alzheimers Disease Scale (QoL-AD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (PFAQ), the Neuropsychiatric Inventory (NPI), and the Zarit Burden Interview (ZBI). Univariate and ordinal regression analyses were conducted to examine the contribution of the various factors. Results The level of awareness of disease presented a significant difference (p Conclusions At least in the earlier stages of dementia, it should not be assumed that awareness will inevitably decrease as dementia progresses. The results confirmed that awareness and cognition are relatively independent, and showed that in mild PwD awareness is mainly manifested by poor recognition of changes in ADLs.

The Role of Non-cognitive Factors in the Ratings of People with Dementia and Caregivers’ Quality of Life

Objectives This study aimed to 1) determine changes over time in PwD and caregiver ratings of PwD QoL 2) to identify the factors associated with any changes in QoLratings and 3) to identify any discrepancies between PwD and caregiver ratings of PwD QoL. Methods Using a longitudinal design, we investigated QoL of 69 people with mild Alzheimer’s disease and their caregivers. We examined the influence of awareness of disease, cognitive status, mood, functionality, neuropsychiatric symptoms and burden. Univariate and multivariate regression analyses were conducted to examine the contribution of the various co-factors. Results At baseline, we observed that caregivers’s QoL was associated to PwD QoL (t= 3.557, p Conclusions In mild dementia, the cognitive impairment and functionality were not the primary factors that accounted in PwD and family caregivers’ ratings of QoL. Our findings suggested that there was an association between PwD and caregivers’ QoL over time. In addition, non-cognitive factors, such as awareness of disease and mood played an important role in PwD and caregivers’ QoL ratings.