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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. publishersversion published

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. publishersversion published

Copyright © Acta Médica Portuguesa, 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., 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.

This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG). Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. publishersversion published

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.

Tese de mestrado, Cuidados Paliativos, Faculdade de Medicina, Universidade de Lisboa, 2013 Submitted by Lucília Mateus (luciliamateus@fm.ul.pt) on 2013-05-06T13:13:46Z No. of bitstreams: 1 668056_Tese.pdf: 1180922 bytes, checksum: 058ac101564fca189a41a9ff7ba6a437 (MD5) Made available in DSpace on 2013-05-06T13:18:32Z (GMT). No. of bitstreams: 1 668056_Tese.pdf: 1180922 bytes, checksum: 058ac101564fca189a41a9ff7ba6a437 (MD5) Previous issue date: 2012