Raquel Luiza Santos

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.

Consciência da doença na doença de Alzheimer: resultados preliminares de um estudo longitudinal

CONTEXTO: A presenca de deficits cognitivos e dos sintomas psicologicos e do comportamento nas demencias torna o fenomeno da consciencia da doenca um objeto de estudo bastante complexo. Esse fenomeno tem sido mais investigado em estudos de corte transversal do que em estudos de corte longitudinal. OBJETIVO: Comparar o comprometimento da consciencia da doenca na doenca de Alzheimer (DA) ao longo de seis meses. METODO: Ao longo de seis meses, 18 pacientes com DA leve foram avaliados por meio da Escala de Avaliacao do Impacto Psicossocial da Demencia (AIPD), do Miniexame do Estado Mental (MEEM), do Estadiamento Clinico da Demencia (CDR), da Escala Cornell para Depressao na Demencia (Cornell), da Escala Qualidade de Vida na Doenca de Alzheimer (QdV-DA) - versao paciente e do Questionario de Atividades Funcionais (Pfeffer). Os cuidadores foram avaliados com a Escala Zarit Burden Interview (Zarit) e a QdV-DA - versao cuidador. RESULTADOS: Ao final de seis meses, houve declinio no grau de consciencia da doenca (p = 0,02), no estado cognitivo (p < 0,01), nas atividades funcionais (p < 0,01) e no estadiamento clinico da doenca (p < 0,01) e aumento dos sintomas depressivos (p < 0,01). CONCLUSAO: Ha comprometimento da consciencia da doenca e deficits cognitivos e funcionais a medida que a gravidade da demencia aumenta.

Quality of life in young onset dementia: an updated systematic review

INTRODUCTION Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. METHOD This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. RESULTS People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregivers own future perspective. CONCLUSION Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

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.

The Relationship Between Social Cognition and Awareness in Alzheimer Disease

A large body of evidence highlights the social cognitive impairment in neurodegenerative diseases such Alzheimer disease (AD). This study investigated the relationship among social and emotional functioning (SEF), awareness of disease, and other clinical aspects in people with AD (PwAD). A consecutive series of 50 people with mild to moderate AD and their 50 family caregivers were assessed. There was a significant difference between self-rated SEF and informant-rated SEF. In 56% of PwAD, self-rated SEF is lower than informant-rated SEF. People with AD mostly presented with mildly impaired awareness of the disease (56%), 20% had moderately impaired awareness of the disease, and 6% were unaware of the disease. The multivariate linear regression showed that informant-rated SEF was related to the social functioning, and relationships, domains of awareness of disease, and the PwAD informant-rated quality of life. The relationship between SEF and awareness of social functioning and relationship domain shows that they are comprised of judgments related to perceptions about oneself, values, and beliefs qualitatively different from awareness of memory or functionality, which can be directly observed.

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.

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.