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

Manuel Gonçalves-Pereira, Maria J. Marques, Conceição Balsinha, Alexandra Fernandes, Ana Sá Machado, Ana Verdelho, Bernardo Barahona-Corrêa, Helena Bárrios, João Guimarães, Joana Grave, Luísa Alves, Manuel Caldas de Almeida, Teresa Alves Reis, Martin Orrell, Bob Woods, Marjolein De Vugt, Frans Verhey, On behalf of Actifcare Consortium

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.


Keywords


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

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