Quality of life in patients with mild cognitive impairment

Background: Quality of life (QoL) is affected in patients with dementia, but it is not clear whether it is already disturbed in more initial phases of cognitive decline, like Mild Cognitive Impairment (MCI). Aim: Compare the QoL in MCI patients with controls without cognitive impairment, and ascertain whether there are differences in the reports of QoL made by the subjects and by their informants. Methods: Two hundred participants were enrolled, divided into MCI patients (n¼50), MCI informants (n¼50), recruited from a memory clinic and a dementia outpatient clinic, and controls (n¼50) and controls informants (n¼50), recruited in a family practice clinic. QoL was assessed with the QoL in Alzheimer disease (QOL-AD) scale. Results: The total scores of the QOL-AD questionnaire were 32.1 6.9 for MCI patients self-report, 27.2 6.7 for MCI patients in the opinion of their informants, 35.3 4.9 for controls self-report and 35.6 4.9 for controls in the opinion of their informants. MCI patients had lower QOL-AD scores than controls. The QoL reported by patients with MCI was more favorable than the opinion of their informants. Conclusion: The QoL is affected at early stages of cognitive decline. The QoL reported by patients with MCI is better than the opinion of their informants, similarly to what is known in Alzheimer’s disease patients. QoL appears to be an important domain to be evaluated in aging studies

Needs for care and service use in dementia : baseline assessment of Portuguese participants in the Actifcare cohort study

Copyright © Acta Médica PortuguesaIntroduction: People with dementia and their relatives should have timely access to formal care in the community. The EU-Actifcare project analysed access to and use of formal services, as related to unmet needs for care. We describe the cohort study implementation and baseline results in Portugal, with a focus on needs for care and service use assessments. Material and Methods: Our convenience sample consisted of 66 dyads of community-dwelling people with mild to moderate dementia and no significant use of formal services, and their informal carers. Measures included the Camberwell Assessment of Need for the Elderly and Resources Utilization in Dementia. Results: People with dementia had unmet needs (mean 1.1; SD 1.7), mainly regarding company (23%), psychological distress (20%), and daily activities (14%). Family caregivers spent 150 minutes/day (median) providing support, and 44% had psychological distress unmet needs. Problems with access to or use of formal services, when present, were frequently due to attitudes or lack of knowledge of any or both members of the dyad. Discussion: The recruitment process was challenging, since the inclusion criteria were restrictive. Not claiming generalizability, we recruited a typical sample of Portuguese people with mild to moderate dementia and no significant formal community support. Levels and type of unmet needs found in some participants would call for formal support, were it not for problems regarding access or use. Conclusion: There are difficulties regarding timely access and effective use of formal care in dementia, along with relevant unmet needsIntrodução: As pessoas com demência e os seus familiares deveriam ter acesso atempado a cuidados formais na comunidade (centros de dia, apoio domiciliário). O projecto EU-Actifcare investigou o acesso/utilização destes serviços em países europeus. Descrevemos a implementação do estudo de coorte e a avaliação inicial em Portugal, com foco nas necessidades de cuidados e recurso aos serviços. Material e Métodos: Selecionámos uma amostra de conveniência de 66 pessoas com diagnóstico de demência ligeira a moderada (residindo na comunidade sem cuidados formais relevantes) e respetivos familiares-cuidadores. A avaliação (clínico-funcional e social) incluiu os instrumentos Camberwell Assessment of Need for the Elderly e Resource Utilization in Dementia. Resultados: Identificámos necessidades não-cobertas dos doentes (média 1,1; DP = 1,7), principalmente de companhia (23% dos casos), sofrimento psicológico (20%) e atividades diárias (14%). Os familiares-cuidadores dedicavam 150 minutos/dia (mediana) à prestação de cuidados e 44% apresentavam necessidades não-cobertas de sofrimento psicológico. Quando havia problemas de acesso/utilização dos serviços de saúde e sociais na comunidade, estes estavam frequentemente relacionados com recusa ou desconhecimento de utentes/familiares. Discussão: A seleção dos participantes não foi fácil, pela especificidade dos critérios adotados. Não almejando representatividade nacional, recrutámos uma amostra típica de pessoas em estádios ligeiros a moderados de demência, em serviços e regiões diferentes. Nalguns casos, encontrámos necessidades não-cobertas e repercussões familiares que já justificariam respostas de serviços na comunidade, não fossem os problemas de acesso/utilização. Conclusão: Na área das demências, existem dificuldades no acesso atempado e utilização efectiva de cuidados formais, coexistindo com uma cobertura menor de necessidades específicas.O projeto Actifcare em Portugal foi financiado pela Fundação para a Ciência e a Tecnologia (FCT-JPND- -HC-0001/2012), com o apoio da iniciativa de Programação Conjunta da União Europeia – Investigação em Doenças Neurodegenerativas, JPND (EU Joint Programme – Neurodegenerative Disease Research), JPND/2013/2. Maria J. Marques foi apoiada pela FCT (PD/ BD/128011/2016) e pelo Fundo Social Europeu através do Programa Operacional Potencial Humano.info:eu-repo/semantics/publishedVersio

Nursing Home Residents Hospitalization at the End of Life: Experience and Predictors in Portuguese Nursing Homes

(1) Background: Nursing Home (NH) residents are a population with health and social vulnerabilities, for whom emergency department visits or hospitalization near the end of life can be considered a marker of healthcare aggressiveness. With the present study, we intend to identify and characterize acute care transitions in the last year of life in Portuguese NH residents, to characterize care integration between the different care levels, and identify predictors of death at hospital and potentially burdensome transitions; (2) Methods: a retrospective after-death study was performed, covering 18 months prior to the emergence of the COVID-19 pandemic, in a nationwide sample of Portuguese NH with 614 residents; (3) Results: 176 deceased patients were included. More than half of NH residents died at hospital. One-third experienced a potentially burdensome care transition in the last 3 days of life, and 48.3% in the last 90 days. Younger age and higher technical staff support were associated with death at hospital and a higher likelihood of burdensome transitions in the last year of life, and Palliative Care team support with less. Advanced Care planning was almost absent; (4) Conclusions: The studied population was frail and old without advance directives in place, and subject to frequent hospitalization and potentially burdensome transitions near the end of life. Unlike other studies, staff provisioning did not improve the outcomes. The results may be related to a low social and professional awareness of Palliative Care and warrant further study

Adaptação cultural e linguística e validação do instrumento QOL-AD para Portugal

Tese de mestrado, Cuidados Paliativos, Faculdade de Medicina, Universidade de Lisboa, 2013Objectivos: Tradução, adaptação transcultural e validação da escala QOL-AD para Portugal. Métodos: Após um processo de tradução e adaptação transcultural de acordo com as recomendações internacionais, a escala foi aplicada a uma amostra de 104 díades doente/cuidador. Os doentes foram recrutados em contexto ambulatório (n=55) e de internamento em Unidade de Demência/Cuidados Continuados (n=49). Foram incluídos doentes com Défice Cognitivo Ligeiro (DCL) (n=35) e demência ligeira a moderada (MMSE≥10) (n=69), por doença de Alzheimer ou demência vascular. Foram estudadas a aceitabilidade, fiabilidade, validade de critério concorrente e discriminativa das escalas. Resultados: A versão portuguesa da QOL-AD revelou boa consistência interna (α- Cronbach para a versão do doente (QOL-ADd) e cuidador (QOL-ADc) de 0,867 e 0,858 respectivamente), e estabilidade teste-reteste com duas semanas de intervalo (Coeficiente de Correlação Intraclasse (CCI): QOL-ADd=0,916, p<0,001; QOLADc= 0,923, p<0,001). Foram observadas correlações da QOL-ADd com depressão do doente, satisfação com a vida, funcionalidade e co-morbilidades. A escala do cuidador apresentou correlação significativa com sobrecarga do cuidador, sintomas neuropsiquiátricos, depressão do cuidador, estado cognitivo, funcionalidade para actividades instrumentais de vida diária e depressão do doente. Verificou-se a existência de baixa correlação entre a classificação do doente e do cuidador (CCI=0,228 concordância total; 0,257 consistência), apresentando o doente uma classificação de QOL-AD superior à do cuidador. A versão portuguesa da QOL-AD revelou capacidade discriminativa entre uma amostra com e sem défice cognitivo. A classificação do cuidador discrimina os grupos de controlo, com DCL e demência. Conclusões: A versão portuguesa da escala QOL-AD obtida revela-se simples, de fácil utilização, com propriedades psicométricas robustas, e fica disponível para utilização em contexto clínico ou de investigação em doentes com DCL e demência ligeira a moderada.Objectives: Translation and transcultural adaptation of the QOL-AD to European Portuguese language and culture, and assessment of the psychometric properties of the instrument. Methods: After a process of translation and transcultural adaptation of the QOL-AD scale, according to the international recommendations, 104 patient-caregiver pairs were recruited for the validation process, in both in-patient (n=49) and out-patient (n=55) settings. The patients had Mild Cognitive Impairment (MCI) (n=35) or mild to moderate dementia (MMSE≥10) (n=69), due to Alzheimer´s disease or vascular dementia. Feasability, reliability, criterion validity and discriminant validity were studied. Results: The Portuguese version of QOL-AD showed good internal consistency (Cronbach´s-α for patient (QOL-ADp) and caregiver (QOL-ADc) versions were 0,867 and 0,858, respectively), and stability in test-retest at two week interval (Intra Class Correlation (ICC): QOL-ADp=0,916, p<0,001; QOL-ADc=0,923, p<0,001). Correlation of the QOL-ADp was observed with patient depression, satisfaction with life, functional status and co-morbidities. Caregiver ratings were correlated significantly with caregiver burden, neuropsychiatric symptoms, caregiver depression, cognitive status, functional status (instrumental activities of daily living) and patient depression. Low correlation was found between patient and caregiver ratings (ICC=0,228 absolute agreement; 0,257 consistency), with QOL-AD patient ratings being higher than caregiver ratings. QOL-AD showed discriminant validity cognitive deficit and the control group. Caregiver ratings allowed discrimination among controls, MCI and dementia groups. Conclusions: A Portuguese version of QOL-AD with robust psychometric properties was obtained, and is now available for clinical and investigation purposes, in patients with Mild Cognitive Impairment and mild to moderate dementia

Systematic literature review: assessment of pain

Background: Pain control is a priority in palliative care.Intensity is one of the major elements in pain assessment,and should be evaluated through scales, which enhance itsobjectivity. The knowledge and adequate use of the existinginstruments for pain evaluation is essential.Aim: Identification of valid and reliable pain assessmentinstruments.Methods: A systematic literature review was undertaken, onPubmed® database. Papers published on the period between2000 and 2015, written in English, French, Spanish andPortuguese were included. Results: 3217 articles were identified, after exclusion andinclusion criteria and abstract review, 103 papers wereselected for full text analysis. 16 different pain assessmentinstruments were identified and characterized. Heterogeneityin pain assessment scales was found, and these could bebroadly divided in: one-dimensional instruments, multi-dimensional and quality of life scales.Discussion: An absence of consensus regarding painevaluation scales was identified. The lack of standardizationof assessment tools renders the comparison of efficacy andeffectiveness of pain controlling interventions particularlydifficult. However, it was possible to make an extensive surveyof pain assessment scales, identifying the psychometriccharacteristics of each of the identified scales, country, andtype of study, context, target population and number ofcitations.This study confirms the need for standardization of painassessment scales, by the health services, in compliance withthe World Health Organization recommendations for PalliativeCare.info:eu-repo/semantics/publishedVersio

Nursing Home Residents Hospitalization at the End of Life: Experience and Predictors in Portuguese Nursing Homes

(1) Background: Nursing Home (NH) residents are a population with health and social vulnerabilities, for whom emergency department visits or hospitalization near the end of life can be considered a marker of healthcare aggressiveness. With the present study, we intend to identify and characterize acute care transitions in the last year of life in Portuguese NH residents, to characterize care integration between the different care levels, and identify predictors of death at hospital and potentially burdensome transitions; (2) Methods: a retrospective after-death study was performed, covering 18 months prior to the emergence of the COVID-19 pandemic, in a nationwide sample of Portuguese NH with 614 residents; (3) Results: 176 deceased patients were included. More than half of NH residents died at hospital. One-third experienced a potentially burdensome care transition in the last 3 days of life, and 48.3% in the last 90 days. Younger age and higher technical staff support were associated with death at hospital and a higher likelihood of burdensome transitions in the last year of life, and Palliative Care team support with less. Advanced Care planning was almost absent; (4) Conclusions: The studied population was frail and old without advance directives in place, and subject to frequent hospitalization and potentially burdensome transitions near the end of life. Unlike other studies, staff provisioning did not improve the outcomes. The results may be related to a low social and professional awareness of Palliative Care and warrant further study

Impact of physical activity in vascular cognitive impairment (AFIVASC): study protocol for a randomised controlled trial

Abstract Background Cognitive impairment and cerebrovascular pathology are both frequent with ageing. Cognitive impairment due to vascular pathology of the brain, termed vascular cognitive impairment (VCI), is one of the most frequent causes of cognitive impairment in elderly subjects. Thus far, VCI has no specific pharmacological treatment. Recent observational studies have suggested a protective effect of physical activity in cognition, but adequate randomised controlled trials (RCT) are lacking. Methods AFIVASC is a multi-centre randomised controlled trial, with a 6-month intervention treatment and an additional follow-up of 6 months, that aims to estimate the impact of 6 months of moderate intensity physical activity on cognition (the primary outcome) at 6 and 12 months in subjects with VCI. Participants are community dwellers with criteria for VCI without dementia or who have had previous stroke or transient ischaemic attack (TIA). Patients may be self-referred or referred from a medical appointment. After confirming the inclusion criteria, a run-in period of 1 month is conducted to access adherence; only after that are subjects randomly assigned (using a computerised program blinded to clinical details) to two groups (intervention group and best practice usual care group). The intervention consists of three physical activity sessions of 60 min each (two supervised and one unsupervised) per week. The primary outcome is measured by the presence or absence of decline in cognitive status. Secondary outcomes include changes in neuro-cognitive measures, quality of life, and functional and motor status. Primary and secondary outcomes are evaluated at 6 and 12 months by investigators blinded to both intervention and randomisation. A required sample size of 280 subjects was estimated. Statistical analyses will include regression analysis with repeated measures. The study was approved by the Ethics Committee for Health of Centro Hospitalar de Lisboa Norte (ref. no. 1063/13) and by the Ethics Committee for Health of Centro Hospitalar do Porto CHP (ref. no. 2016.055(049-DEFI/048-CES)). Discussion We aim to show whether or not moderate physical activity has a beneficial impact on cognition, quality of life, motor, and functional status in people with vascular cognitive impairment, and to generate new insights on the applicability of implementing physical activity in this specific population. Trial Registration ClinicalTrials.gov, NCT03578614 July 6, 2018

Avaliação inicial da coorte portuguesa no estudo Actifcare

INTRODUCTION: People with dementia and their relatives should have timely access to formal care in the community. The EU-Actifcare project analysed access to and use of formal services, as related to unmet needs for care. We describe the cohort study implementation and baseline results in Portugal, with a focus on needs for care and service use assessments. MATERIAL AND METHODS: Our convenience sample consisted of 66 dyads of community-dwelling people with mild to moderate dementia and no significant use of formal services, and their informal carers. Measures included the Camberwell Assessment of Need for the Elderly and Resources Utilization in Dementia. RESULTS: People with dementia had unmet needs (mean 1.1; SD 1.7), mainly regarding company (23%), psychological distress (20%), and daily activities (14%). Family caregivers spent 150 minutes/day (median) providing support, and 44% had psychological distress unmet needs. Problems with access to or use of formal services, when present, were frequently due to attitudes or lack of knowledge of any or both members of the dyad. DISCUSSION: The recruitment process was challenging, since the inclusion criteria were restrictive. Not claiming generalizability, we recruited a typical sample of Portuguese people with mild to moderate dementia and no significant formal community support. Levels and type of unmet needs found in some participants would call for formal support, were it not for problems regarding access or use. CONCLUSION: There are difficulties regarding timely access and effective use of formal care in dementia, along with relevant unmet needs.publishersversionpublishe