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