Needs for care and service use in dementia: Baseline assessment of Portuguese participants in the Actifcare cohort study

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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.
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
Volume32
Issue number5
DOIs
Publication statusPublished - 31 May 2019

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Dementia
Cohort Studies
Caregivers
Psychology
Independent Living
Portugal
Needs Assessment

Keywords

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

Cite this

@article{ebcb6748000140af96ebc8de8b68afc4,
title = "Necessidades de cuidados e recurso aos servi{\cc}os na dem{\^e}ncia: Avalia{\cc}{\~a}o inicial da coorte portuguesa no estudo Actifcare",
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",
author = "Manuel Gon{\cc}alves-Pereira and Marques, {Maria J.} and Concei{\cc}{\~a}o Balsinha and Alexandra Fernandes and Machado, {Ana S{\'a}} and Ana Verdelho and Bernardo Barahona-Corr{\^e}a and Helena B{\'a}rrios and Jo{\~a}o Guimar{\~a}es and Joana Grave and Lu{\'i}sa Alves and {Caldas de Almeida}, Manuel and Reis, {Teresa Alves} and Martin Orrell and Bob Woods and {De Vugt}, Marjolein and Frans Verhey",
year = "2019",
month = "5",
day = "31",
doi = "10.20344/amp.11136",
language = "Portuguese",
volume = "32",
pages = "355--367",
journal = "Acta M{\'e}dica Portuguesa",
issn = "1646-0758",
publisher = "Biblioteca Nacional de Portugal, Centro de Estudos Hist{\'o}ricos, CELOM",
number = "5",

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TY - JOUR

T1 - Necessidades de cuidados e recurso aos serviços na demência

T2 - Avaliação inicial da coorte portuguesa no estudo Actifcare

AU - Gonçalves-Pereira, Manuel

AU - Marques, Maria J.

AU - Balsinha, Conceição

AU - Fernandes, Alexandra

AU - Machado, Ana Sá

AU - Verdelho, Ana

AU - Barahona-Corrêa, Bernardo

AU - Bárrios, Helena

AU - Guimarães, João

AU - Grave, Joana

AU - Alves, Luísa

AU - Caldas de Almeida, Manuel

AU - Reis, Teresa Alves

AU - Orrell, Martin

AU - Woods, Bob

AU - De Vugt, Marjolein

AU - Verhey, Frans

PY - 2019/5/31

Y1 - 2019/5/31

N2 - 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.

AB - 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.

KW - Caregivers

KW - Dementia

KW - Health Services Accessibility

KW - Needs Assessment

KW - Portugal

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U2 - 10.20344/amp.11136

DO - 10.20344/amp.11136

M3 - Article

VL - 32

SP - 355

EP - 367

JO - Acta Médica Portuguesa

JF - Acta Médica Portuguesa

SN - 1646-0758

IS - 5

ER -