Abstract
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. To explore the barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals. 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. 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. 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.
Highlights
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
This study describes the experiences of primary care teams and their users regarding barriers to dementia care, in a country without an operationalised Dementia Strategy but where teamwork in primary care should be normal practice
Our findings suggest that the teams lacked a defined role in dementia care, and the users had limited access to dementia services because of several system and individual barriers
Summary
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. 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. As the numbers of people with dementia increase, it is unlikely that the current specialist care model will be able to meet their needs This model is not affordable and does not facilitate continuing care, holistic management of or care coordination for complex multi-morbidities; these are core functions of primary healthcare (Prince et al, 2016). There is no cure for dementia, and the goals for clinical care depend on the stage of the disease On, they may focus on maximising function in daily activities and promoting social activities. A metasynthesis of qualitative research identified four relevant determinants (relationships, agency in everyday life, a wellness perspective and a sense of place); the experience of connectedness or disconnectedness within each factor influences the QoL of people with dementia (O’Rourke et al, 2015)
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