Comment on: Family caregiver assessment in primary care: How to strengthen the healthcare triad?

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What is the present role for general practitioners in dementia care? Experiences of general practitioners, patients and family carers in Portugal

Background: Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs’ contribution to dementia care. Methods: A qualitative interview study of participants recruited from six practices in different social contexts within the Lisbon metropolitan area was carried out. Purposive sampling was used to recruit GPs, persons with dementia and carers. Interviews with GPs explored dementia care comprehensiveness, including satisfactory and challenging aspects. Interviews with patients and carers explored the experience of talking to GPs about cognitive impairments and related difficulties and the type of help received. Thematic analysis of interview transcripts was carried out using the framework approach. Results: Five major themes were identified: GPs have a limited contribution to dementia care, the case of advanced dementia, doctor–patient relationships, doctor–carer relationships and management of chronic conditions other than dementia. Conclusion: General practitioners seemed to contribute little to dementia care overall, particularly regarding symptom management. The exception was patients with advanced stages of dementia, given that specialists no longer followed them up. Remarkably, GPs seemed to be alone within primary care teams in providing dementia care. These findings strongly suggest that Portuguese primary care is not yet prepared to comply with policy expectations regarding the management of dementia.publishersversionpublishe

obstacles to the implementation of Portugal's Dementia Strategy

Financial support. The present publication was funded by Fundação Ciência e Tecnologia, IP national support through CHRC (UIDP/04923/2020).BACKGROUND: Portugal has a Dementia Strategy that endorses care coordination in the community, but the strategy is not implemented despite there being a network of multidisciplinary primary care clinics that could support it. Recent research into barriers to dementia management in primary care has focused essentially on general practitioners' (GPs) factors and perspectives. A comprehensive triangulated view on the barriers to dementia management emphasising teamwork is missing. AIM: To explore the barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals. METHODS: Purposive sampling was used to recruit 10 GPs, 8 practice nurses, 4 social workers, 8 people with dementia and 10 family carers from 6 practices in different social contexts within the Lisbon metropolitan area. The analytical framework combined codes derived from the transcripts with codes from the available literature. Themes focused on the access to professionals/community services, care coordination within healthcare teams, and between health and community services. FINDINGS: Several system barriers were identified (undefined roles/coordination within teams, time constraints, insufficient signposting to community services) along with individual barriers (limited competence in dementia, unrecognised autonomy, limited views on social health and quality of life (QoL)), hindering users access to dementia services. CONCLUSION: Enhanced competence in dementia, and nurse-led systematic care of people with dementia and their carers, are necessary. They can be effective in improving the QoL in dementia, but only if associated with better community support.publishersversionpublishe

Importância do Conceito 'Saúde Social' e dos Cuidados de Saúde Primários

Funding: Fundação para a Ciência e Tecnologia - JPND- -HC/0001/2012/EU Joint Programme–Neurodegenerative Disease Research, JPND/2013/2. A autora Maria J. Marques foi apoiada pela FCT (PD/ BD/128011/2016) e pelo Fundo Social Europeu através do Programa Operacional Potencial Humano.publishersversionpublishe

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

Avaliação de necessidades das pessoas idosas em Medicina Geral e Familiar: um estudo de exequibilidade

RESUMO: Os médicos de família devem participar na detecção precoce dos factores de risco que favorecem o declínio funcional nas pessoas idosas. A avaliação estruturada das suas necessidades poderá contribuir para identificar os problemas de saúde que traduzam deterioração funcional. O objectivo deste trabalho foi avaliar a exequibilidade da implementação de um processo de avaliação de necessidades de cuidados em saúde das pessoas idosas na consulta de MGF.Seleccionou-se uma amostra não aleatória de pacientes com 65 ou mais anos de idade, na consulta médica de uma Unidade de Saúde Familiar da região de Lisboa. A avaliação de necessidades foi realizada, pelos médicos, com cinco itens da entrevista Camberwell Assessment of Need for the Elderly (CANE-5). Avaliou-se a percepção dos médicos e dos pacientes sobre este processo de avaliação de necessidades mediante um questionário escrito e entrevistas individuais, respectivamente. Identificaram-se necessidades em 38 (75%) dos 51 pacientes avaliados. Do total das 83 necessidades identificadas, 17 não estavam cobertas. O sofrimento psicológico foi a necessidade não coberta mais frequente. A comparação das avaliações do médico com as do paciente mostrou concordância razoável ou boa nas cinco áreas avaliadas. Esta avaliação foi bem aceite e considerada útil na perspectiva dos médicos e dos pacientes. A principal dificuldade identificada pelos médicos foi o tempo despendido na avaliação face à duração da consulta. Este estudo aponta para a exequibilidade da utilização da entrevista CANE-5 na prática clínica de MGF. No entanto, será importante alargar este estudo a amostras de maior dimensão e avaliar a utilidade da entrevista em intervenções sobre a funcionalidade dos pacientes idosos.----------ABSTRACT: General practitioners (GP) should participate in the early detection of risk factors for fuctional disability in elderly people. Structured needs assessments may contribute to a better identification of health problems that are linked to functional decline. The aim of this study was to assess the feasibility of a structured assessment of needs in the elderly, in the context of opportunistic screening in primary care. A convenience sample was selected of patients aged 65 years and over with scheduled appointments in one general practice in the Lisbon region. The assessment of needs was done by their GPs, using five items of the Camberwell Assessment of Need for the Elderly (CANE-5). Perceptions of GPs and patients about this process of needs assessment were ev+aluated by means of a written questionnaire and individual interviews, respectively. Needs were identified in 38 (75%) of 51 patients. Seventeen unmet needs were identified, out of a total number of 83 needs. Psychological distress was the most frequent unmet need. GP’s and patients’ assessments showed moderate or good agreement in all five areas. This needs’ assessment process was well accepted and considered useful by both GPs and patients. The main difficulty, according to the views of GPs, was the time consumed in this process, given the length of consultation. This study suggests the feasibility of using the CANE-5 interview in clinical practice in primary care settings. However it is important to replicate this study in larger samples and to evaluate the usefulness of the interview regarding interventions related to functionality in elderly patients

Users and health professionals' perspectives regarding Portuguese primary care services: a focus on dementia

Dementia is one of the major causes of disability amongst older age people worldwide, challenging governments to integrate a part of dementia care into primary care. However, research suggests that dementia is under-managed in primary care. Multifactorial barriers to dementia management have been identified, and the role of GPs in dementia care is still somewhat controversial. The goals for clinical care change over the course of dementia and the typical physician-patient dyad often expands to a triadic relationship (the person with dementia, the family carer and the GP) as cognition declines. Evidence about triadic interactions suggests that the quality of interactions in consultations about dementia is unsatisfactory from the perspectives of both carers and physicians. In the Portuguese National Health Service, family doctors and practice nurses are the first contact point for the majority of persons with dementia and their family carers, but most of these professionals do not have specific training in the area. The Portuguese Dementia Strategy has not yet been implemented, there are no dementia care pathways in place in primary care, and social support for persons with dementia remains limited. To our knowledge, only a few studies addressed the barriers to dementia care from different perspectives (i.e., patients, carers, GPs and other primary care professionals), and no studies were conducted involving primary care teams and the users of their services. Additionally, since consultation analysis has been used in primary care for a variety of purposes, but to our knowledge, not yet considering dementia triads. The general aim of this thesis is to contribute to the understanding of how dementia care is delivered in primary care. Specific objectives are: 1) to describe the experiences and perspectives of GPs, persons with dementia and their family carers about the current role of GPs in providing dementia care and the issues that impact on this role; 2) to explore dementia care in the context of triadic consultations; and 3) to explore the obstacles and barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals. Using a qualitative approach, this work includes three studies involving primary care centres within the Lisbon metropolitan area, in which purposive sampling was used to recruit the participants. An ad-hoc quality framework for dementia care delivery in primary care guided the three studies. In two of them, semi-structured face-to-face interviews were conducted with 10 GPs, 8 practice nurses, 4 social workers, 8 persons with dementia and 10 family carers. In the third study, triadic consultations involving the same GPs, persons with dementia and their family carers were recorded and analysed. The framework approach, the thematic analysis and data triangulation were components of the data analysis. Our findings suggest that GPs were alone within primary care teams in providing dementia care. Moreover, liaison with dementia specialists (neurologists, psychiatrists) was poor. General practitioners’ contribution to dementia management was very limited, mostly relying on specialists to manage clinical symptoms and specific medication. The GPs assessed the impact of dementia on daily life to some extent, but failed to notice the comorbidities related to dementia. The exception were patients with advanced stages of dementia, given that specialists no longer followed them up. Importantly, the GPs had to address different subjects in consultations, which may have conditioned their more specific engagement in dementia care, strictly speaking. The patients seemed to also have a limited access to dementia services because of undefined roles and poor coordination of health professionals, the lack of social workers and the inadequacy of community services for persons with dementia. Their psychosocial needs seemed to be overlooked, since most professionals and carers had limited views on those needs. The patients may have had additional difficulties in expressing themselves, given the lack of person-centredness of GPs’ enquiries and patterns of disabling communication within the triad. Finally, carers tended to assume the role of informants in most consultations, and their needs were poorly assessed. Therefore, strategies for improving family carers’ assessments are needed. Overall, we need enhanced competence in dementia, nurse-led systematic care of persons with dementia and their carers, and more extensive community support. The analysis of triadic consultations may provide potential process measures for assessing the quality of clinical practice and consultation training in general practice, but this requires further study. Our findings strongly suggest that Portuguese primary care teams are not yet prepared to comply with policy expectations regarding the management of dementia

Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal

Introduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables. Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used. Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers’ ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers’ depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers’ psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable. Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants’ needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes