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.

[Needs for Care and Service Use in Dementia: Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study]. / Necessidades de Cuidados e Recurso aos Serviços na Demência: 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.

Introdução: 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.

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

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.

Availability of information on young onset dementia for patients and carers in six European countries.

OBJECTIVES: To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps. METHODS: Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. RESULTS: 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden. CONCLUSION: Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. PRACTICAL IMPLICATIONS: Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.

Quality of life in patients with cognitive impairment: validation of the Quality of Life-Alzheimer's Disease scale in Portugal.

BACKGROUND: Quality of Life-Alzheimer's Disease (QOL-AD) is a widely used scale for the study of quality of life in patients with dementia. The aim of this study is the transcultural adaptation and validation of the QOL-AD scale in Portugal. METHODS: Translation and transcultural adaptation was performed according to state-of-the-art recommendations. For the validation study, 104 patient/caregiver pairs were enrolled. Patients had mild cognitive impairment or mild-to-moderate dementia (due to Alzheimer's disease or vascular dementia). Participants were recruited in a dementia outpatient clinic setting and a long-term care dementia ward. An additional comparison group of 22 patients without cognitive impairment, and their proxies, was recruited in a family practice outpatient clinic. Sociodemographic information on patients and caregivers was obtained. Acceptability, reliability, and construct validity were analyzed. RESULTS: Internal consistency of the Portuguese version of QOL-AD was good for both patient and caregiver report (Cronbach's α = 0.867 and 0.858, respectively). Construct validity was confirmed by the correlation of patient reported QOL-AD with patient geriatric depression scale scores (ρ = -0.702, p < 0.001) and satisfaction with life scale scores (ρ = 0.543, p < 0.001). Caregiver ratings were correlated with neuropsychiatric inventory (NPI) total score (ρ = -0.404, p < 0.001), NPI-distress (ρ = -0.346, p < 0.001), and patient Mini-Mental State Examination (ρ = 0.319, p < 0.01). QOL-AD patient ratings were higher than caregiver ratings (p < 0.001). Both patient- and caregiver-rated QOL-AD scores were lower in patients with cognitive impairment than in the comparison group without cognitive impairment (p < 0.01). CONCLUSIONS: A Portuguese version of QOL-AD with consistent psychometric properties was obtained and is proposed as a useful tool for research and clinical purposes.

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 (n = 50), MCI informants (n = 50), recruited from a memory clinic and a dementia outpatient clinic, and controls (n = 50) and controls informants (n = 50), 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.