ABSTRACT
Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development.Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up.Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor.Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.
Subject(s)
Caregivers/psychology , Dementia/psychology , Quality of Life , Aged , Aged, 80 and over , Europe , Female , Humans , Independent Living , Male , Middle Aged , Prospective Studies , Proxy , Surveys and QuestionnairesABSTRACT
BACKGROUND: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time. OBJECTIVES: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project. MATERIALS AND METHODS: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario. RESULTS: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system. CONCLUSION: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.
Subject(s)
Caregivers/psychology , Dementia/therapy , Health Services Accessibility , Adult , Aged , Aged, 80 and over , Europe , Female , Humans , Male , Middle Aged , Needs Assessment , Quality of LifeABSTRACT
BACKGROUND: Patient's relatives usually care for patients with schizophrenia, and as informal caregivers they experience negative consequences. The aim of the EDUCA-III trial is to test the efficacy of a psychoeducational intervention program (PIP) versus standard care to reduce the caregiver burden at post-intervention (4 months), and at follow-up (8 months). METHOD: A two-arm, evaluator blind, multicentre, randomized controlled trial. The PIP group had 12 weekly group sessions. The control intervention group had the usual support and standard care. Primary outcomes were change scores since baseline on the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ). RESULTS: One hundred and nine caregivers were randomized to PIP and 114 to control condition from 23 research sites. The decrease of ZBI scores was significantly higher on the PIP arm at 4 months (mean difference [MD]=-4.33; 95% CI -7.96, -0.71), and at 8 months (MD=-4.46; 95% CI -7.79, -1.13). There were no significant decreases in the IEQ scores (MD at 4 months=-2.80; 95% CI -6.27, 0.67; MD at 8 months=-2.85; 95% CI -6.51, 0.81). CONCLUSIONS: The PIP condition seems to reduce caregiver burden. TRIAL REGISTRATION: ISRCTN32545295.
Subject(s)
Caregivers , Health Education , Schizophrenia/therapy , Stress, Psychological/prevention & control , Adaptation, Psychological , Aged , Caregivers/education , Caregivers/psychology , Cost of Illness , Counseling , Educational Measurement/methods , Efficiency, Organizational , Female , Health Education/methods , Health Education/organization & administration , Humans , Male , Middle Aged , Social Support , Surveys and QuestionnairesABSTRACT
Psychotic symptoms in Parkinson's disease (PD) are frequent, disabling, and an important prognostic factor. Thus, screening instruments for detecting psychosis in PD are needed. For this purpose, we applied the Parkinson's Psychosis Questionnaire (PPQ), a short structured questionnaire, which requires no specific training, along with the Brief Psychiatric Rating Scale, expanded version (BPRS-E), for rating general psychopathology, including psychotic symptoms. We evaluated, in a cross-sectional study, a Portuguese sample of 36 early-stage PD patients (mean age of 73 years; mean duration of illness of 3.2 years). The PPQ total score correlated with the BPRS-E total score (0.359; P = 0.032) and with the BPRS-E-positive symptoms score (0.469; P = 0.004). The prevalence of psychosis (41.7%) was higher than expected. Sampling bias and detection of minor psychotic phenomena may have contributed to this result. These findings suggest that the PPQ should be further evaluated as a feasible assessment for psychotic symptoms in PD.
ABSTRACT
Con los distintos avances técnicos y estadísticos que se han ido incorporando a la investigación en Psiquiatría, y el mejor conocimiento de la alteración que subyace a la enfermedad psiquiátrica, los tratamientos para nuestros pacientes deberían ser más curativos. Sin embargo, el reto al que nos enfrentamos los que trabajamos en esta área de la ciencia es el de ser capaces de ensamblar las distintas piezas del rompecabezas que vamos conociendo para que los tratamientos que utilicemos, ya sean biológicos o psicológicos, se dirijan a las causas que originan la enfermedad además de a sus síntomas. En este sentido, son evidentes los progresos para el estudio del enfermo mental tanto en lo estructural como en lo funcional, y son numerosos, también, los trabajos que describen distintas alteraciones o que proponen modelos para explicar lo que sucede en las distintas situaciones de nuestros pacientes. también en el conocimiento de la enfermedad psiquiátrica que afecta al paciente de edad avanzada se ha avanzado en nuestros días, aunque solo sea impulsado por el creciente patrón demográfico que nos habla de que en solo unas décadas este grupo de la población constituirá un tercio del total. El verdadero reto al que nos enfrentamos en Medicina es la posibilidad de (..) (AU)
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