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- Goncalves-Pereira, M, et al.
(författare)
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[Needs for Care and Service Use in Dementia: Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study]
- 2019
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Ingår i: Acta medica portuguesa. - : Ordem dos Medicos. - 1646-0758 .- 0870-399X. ; 32:5, s. 355-367
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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- Stephan, Astrid, et al.
(författare)
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Barriers and facilitators to the access to and use of formal dementia care : findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
- 2018
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318 .- 1471-2318. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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- Bieber, A., et al.
(författare)
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Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formalcare [Zugang zu professioneller Unterstützung für Menschen mit Demenz und ihre Angehörigen: Fallvignetten für den europäischen Vergleich von Strukturen und Zugangswegen zu professioneller Pflege]
- 2018
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Ingår i: Zeitschrift für Gerontologie und Geriatrie (Print). - : Springer Science and Business Media LLC. - 0948-6704 .- 1435-1269. ; 51:5, s. 530-536
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPeople with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.ObjectivesDescription and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.Materials and methodsThe 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.ResultsA 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.ConclusionEnhanced 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.
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- Goncalves-Pereira, M, et al.
(författare)
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The Portuguese participation in the Actifcare (access to timely formal care in dementia) European study: Preliminary results of systematic reviews, qualitative and quantitative data
- 2017
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Ingår i: EUROPEAN PSYCHIATRY. - : Cambridge University Press (CUP). - 0924-9338 .- 1778-3585. ; 41, s. S652-S652
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- In the context of untimely access to community formal services, unmet needs of persons with dementia (PwD) and their carers may compromise their quality of life.Objectives/aimsThe Actifcare EU-JPND project (www.actifcare.eu) focuses on access to and (non) utilization of dementia formal care in eight countries (The Netherlands, Germany, United Kingdom, Sweden, Norway, Ireland, Italy, Portugal), as related to unmet needs and quality of life. Evaluations included systematic reviews, qualitative explorations, and a European cohort study (PwD in early/intermediate phases and their primary carers; n = 453 days; 1 year follow-up). Preliminary Portuguese results are presented here (FCT-JPND-HC/0001/2012).Methods(1) extensive systematic searches on access to/utilization of services; (2) focus groups of PwD, carers and health/social professionals; (3) prospective study (n = 66 days from e.g., primary care, hospital outpatient services, Alzheimer Portugal).ResultsIn Portugal, nationally representative data is scarce regarding health/social services utilization in dementia. There are important barriers to access to community services, according to users, carers and professionals, whose views not always coincide. The Portuguese cohort participants were 66 PwD (62.1% female, 77.3 ± 6.2 years, 55.5% Alzheimer's/mixed subtypes, MMSE 17.8 ± 4.8, CDR1 89.4%) and 66 carers (66.7% female, 64.9 ± 15.0 years, 56.1% spouses), with considerable unmet needs in some domains.ConclusionsAll Actifcare milestones are being reached. The consortium is now analyzing international differences in (un) timely access to services and its impact on quality of life and needs for care (e.g., formal community support is weaker in Portugal than in many European countries). National best-practice recommendations in dementia are also in preparation.Abstract submitted on behalf of the Actifcare Eu-JPND consortium.Disclosure of interestThe authors have not supplied their declaration of competing interest.
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