Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare

Translated title of the contribution: Needs for Care and Service Use in Dementia Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study

Manuel Goncalves-Pereira*, Maria J. Marques, Conceicao Balsinha, Alexandra Fernandes, Ana Sa Machado, Ana Verdelho, Bernardo Barahona-Correa, Helena Barrios, Joao Guimaraes, Joana Grave, Luisa Alves, Manuel Caldas de Almeida, Teresa Reis, Martin Orrell, Bob Woods, Marjolein De Vugt, Frans Verhey, Claire Wolfs, Ron Handels, Liselot KerpershoekGabriele Meyer, Astrid Stephan, Anja Bieber, Anja Broda, Gabriele Bartoszek, Hannah Jelley, Anders Wimo, Anders Skoldunger, Britt-Marie Sjolund, Knut Engedal, Geir Selbaek, Mona Michalet, Janne Rosvik, Siren Eriksen, Kate Irving, Louise Hopper, Rachael Joyce, Orazio Zanetti, Elisa Portolani, ActifCare Consortium

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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.

Translated title of the contributionNeeds for Care and Service Use in Dementia Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study
Original languagePortuguese
Pages (from-to)355-367
Number of pages13
JournalActa Medica Portuguesa
Issue number5
Publication statusPublished - May 2019


  • Caregivers
  • Dementia
  • Health Services Accessibility
  • Needs Assessment
  • Portugal

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