Manuel Gonçalves-Pereira1, Maria J Marques1, Conceição Balsinha2, Alexandra Fernandes3, Ana Sá Machado1, Ana Verdelho4, Bernardo Barahona-Corrêa5, Helena Bárrios6, João Guimarães6, Joana Grave6, Luísa Alves7, Manuel Caldas Almeida6, Teresa Alves Reis1, Martin Orrell8, Bob Woods9, Marjolein De Vugt10, Frans Verhey10. 1. Centro de Estudos de Doenças Crónicas - CEDOC. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Portugal. 2. 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. Portugal. 3. Unidade de Saúde Familiar Fernão Ferro Mais. Agrupamento dos Centros de Saúde de Almada-Seixal. Seixal. Portugal. 4. Instituto de Saúde Ambiental. Faculdade de Medicina. Centro Hospitalar e Universitário de Lisboa. Lisboa. Portugal. 5. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Hospital de Egas Moniz. Centro Hospitalar de Lisboa Ocidental. Lisboa. Portugal. 6. Faculdade de Ciências Médicas / NOVA Medical School. Universidade NOVA de Lisboa. Lisboa. Portugal. 7. 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. Portugal. 8. Nottingham Institute of Mental Health. Nothingham. United Kingdom; Director - Institute of Mental Health / Head, Division of Psychiatry and Applied Psychology, Faculty of Medicine and Health Sciences, United Kingdom. 9. Bangor University. Bangor. United Kingdom; Emeritus Professor - Bangor University, United Kingdom. 10. Maastricht University. Maastricht. Netherlands.
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.
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.
Entities:
Keywords:
Caregivers; Dementia; Health Services Accessibility; Needs Assessment; Portugal
Authors: Conceição Balsinha; Steve Iliffe; Sónia Dias; Alexandre Freitas; Filipa F Barreiros; Manuel Gonçalves-Pereira Journal: Prim Health Care Res Dev Date: 2022-02-18 Impact factor: 1.458