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

Authors

  • Manuel Gonçalves-Pereira Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. https://orcid.org/0000-0003-1419-1306
  • Maria J. Marques Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. https://orcid.org/0000-0001-9214-4180
  • Conceição Balsinha 1. Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Unidade de Saúde Familiar Marginal. Agrupamento dos Centros de Saúde de Cascais. Cascais. https://orcid.org/0000-0002-4654-5378
  • Alexandra Fernandes Unidade de Saúde Familiar Fernão Ferro Mais. Agrupamento dos Centros de Saúde de Almada-Seixal. Seixal.
  • Ana Sá Machado Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa.
  • Ana Verdelho Instituto de Saúde Ambiental. Faculdade de Medicina. Centro Hospitalar e Universitário de Lisboa. Lisboa. https://orcid.org/0000-0003-4945-4946
  • Bernardo Barahona-Corrêa Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Hospital de Egas Moniz. Centro Hospitalar de Lisboa Ocidental. Lisboa. https://orcid.org/0000-0001-8558-3126
  • Helena Bárrios Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa.
  • João Guimarães Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa.
  • Joana Grave Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. https://orcid.org/0000-0001-9241-5593
  • Luísa Alves Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Hospital de Egas Moniz. Centro Hospitalar de Lisboa Ocidental. Lisboa.
  • Manuel Caldas de Almeida Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa.
  • Teresa Alves Reis Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. https://orcid.org/0000-0002-6178-8095
  • Martin Orrell Nottingham Institute of Mental Health. Nothingham.
  • Bob Woods Bangor University. Bangor. https://orcid.org/0000-0002-6781-651X
  • Marjolein De Vugt Maastricht University. Maastricht.
  • Frans Verhey Maastricht University. Maastricht.
  • On behalf of Actifcare Consortium

DOI:

https://doi.org/10.20344/amp.11136

Keywords:

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

Abstract

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.

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Author Biographies

Manuel Gonçalves-Pereira, Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa.

CEDOC, NMS/FCM-UNL

Professor Auxiliar; Regente da UC Psicologia Médica e Medicina Comportamental

Martin Orrell, Nottingham Institute of Mental Health. Nothingham.

Director - Institute of Mental Health / Head, Division of Psychiatry and Applied Psychology, Faculty of Medicine & Health Sciences

Bob Woods, Bangor University. Bangor.

Emeritus Professor - Bangor University, United Kingdom

Marjolein De Vugt, Maastricht University. Maastricht.

Professor

Frans Verhey, Maastricht University. Maastricht.

Professor

Published

2019-05-31

How to Cite

1.
Gonçalves-Pereira M, Marques MJ, Balsinha C, Fernandes A, Machado AS, Verdelho A, Barahona-Corrêa B, Bárrios H, Guimarães J, Grave J, Alves L, Almeida MC de, Reis TA, Orrell M, Woods B, De Vugt M, Verhey F, Actifcare Consortium O behalf of. Needs for Care and Service Use in Dementia: Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study. Acta Med Port [Internet]. 2019 May 31 [cited 2022 Dec. 10];32(5):355-67. Available from: https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/11136

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Section

Original