Marcia Cristina Nascimento Dourado

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.

Consciência da doença na demência: resultados preliminares em pacientes com doença de Alzheimer leve e moderada

OBJECTIVE: To evaluate the presence and the level of awareness of disease in mild and moderate Alzheimers disease (AD). METHOD: Cross-sectional evaluation of patients with mild/moderate AD (n=42) assessed by Assessment of Psychosocial Impact of the Dementia Diagnosis (APSID), Mini-mental State Examination (MMSE) and Clinical Dementia Rating Scale (CDR). RESULTS: Awareness of disease and its consequences were present in 66.7% patients with mild AD (n=18). In moderate AD (n=24), 20.8% presented total awareness, 45.8% presented only awareness of cognitive symptoms. Unawareness of disease was observed in 33.3%. CONCLUSIONS: The present data show association between awareness and level of severity of disease. CDR 1 patients show a better recognition of cognitive and daily life activity symptoms, whereas CDR 2 patients recognized their cognitive symptoms but failed to appraise their severity and consequences in daily life activities.

Awareness of disease in Alzheimer's dementia: description of a mild to moderate sample of patient and caregiver dyads in Brazil

BACKGROUND Impairment of deficit awareness is a clinically relevant feature of dementia affecting the maintenance of decision capacities, management and safety of patients with risk behaviors, and caregiver burden. This study assessed awareness of disease of patient/caregiver dyads and the relationship between unawareness on various domains and sociodemographic variables among elderly Brazilians with Alzheimers disease (AD). METHODS The dyads (n=52), stratified by clinical severity and age groups, responded to the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD). Statistical tests were used to compare clinical and sociodemographic variables and to calculate differences in rates of discrepant responses among mild and moderate dyads and between age groups, rates of discrepant responses among the ASPIDD domains, and association between awareness and age/age at onset. RESULTS Awareness of deficits did not differ significantly among mild patients, whereas moderate patients showed impaired recognition on all domains. Older moderate dyads showed more discrepant responses, as compared to younger dyads at both severity stages. Mild patients could associate the disease with the cognitive deficits and recognized impairments on other domains. There was no significant relation of awareness with age at onset. CONCLUSION Mild AD patients could associate the disease process with the presence of cognitive deficits, and also the changes in the emotional response with difficulties in social, family, and affective relations. Moderate AD patients were less aware of the symptoms and did not attribute them to the disease.

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.

Awareness of disease in dementia: Development of a multidimensional rating scale

Objective To describe the development of the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), a multidimensional scale to evaluate awareness of disease in dementia. Method The development of this scale was conducted in four steps. In step one, questions were drawn up after a review of the literature. The second step involved the suggestions offered by a neurologist regarding the skills considered important for the scale. The third step involved the re-writing and review of the domains and questions in the scale followed by a semantic evaluation performed by two independent psychiatrists. Step four consisted of the preliminary study aimed at evaluating the applicability of the ASPIDD. Results In the semantic evaluation only minor changes were proposed. The preliminary sample had 52 patients, comprising 23 CDR 1 (male=9; female=14) and 29 CDR2 (male=13; female=16).Mean age of patients was 69.7±5.51(CDR1) and 73.6±9.4 (CDR2), and age at onset was 66.4±5.7 years (CDR1) and 68.3±9.3 year (CDR2).Mean schooling was 9.0±4.3 years (CDR1) and 8.8±4.4 years (CDR2). Mean MMSE was 21.0±3.3(CDR1) and 17.6±3.5(CDR2).Mean Cornell was 4.8±2.3(CDR1) and 4.2±1.9 (CDR2). The patient and caregiver dyads were aware of problems, mainly of those related to social, family and affective relations. The higher rates of discrepant responses were found on the awareness of cognitive deficits and changes in ADL. Conclusion The ASPIDD is a multidimensional instrument to assess awareness of disease among AD patients.

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.

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 (β = .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.