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

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 Kerpershoek; Gabriele 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

doi:10.20344/amp.11136

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 journal › Article › Academic › peer-review

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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 contribution	Needs for Care and Service Use in Dementia Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study
Original language	Portuguese
Pages (from-to)	355-367
Number of pages	13
Journal	Acta Medica Portuguesa
Volume	32
Issue number	5
DOIs	https://doi.org/10.20344/amp.11136
Publication status	Published - May 2019

Keywords

Caregivers
Dementia
Health Services Accessibility
Needs Assessment
Portugal
OLDER-PEOPLE
CAMBERWELL ASSESSMENT
HOSPITAL ANXIETY
ELDERLY CANE
VALIDATION
CAREGIVERS
VALIDITY
BURDEN
STATE

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Goncalves-Pereira, M., Marques, M. J., Balsinha, C., Fernandes, A., Machado, A. S., Verdelho, A., Barahona-Correa, B., Barrios, H., Guimaraes, J., Grave, J., Alves, L., de Almeida, M. C., Reis, T., Orrell, M., Woods, B., De Vugt, M., Verhey, F., Wolfs, C., Handels, R., ... ActifCare Consortium (2019). Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare. Acta Medica Portuguesa, 32(5), 355-367. https://doi.org/10.20344/amp.11136

@article{9c54e78c47a247449d58a6d57cb1f5cc,

title = "Necessidades de Cuidados e Recurso aos Servi{\c c}os na Dem{\^e}ncia: Avalia{\c c}{\~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, OLDER-PEOPLE, CAMBERWELL ASSESSMENT, HOSPITAL ANXIETY, ELDERLY CANE, VALIDATION, CAREGIVERS, VALIDITY, BURDEN, STATE",

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

note = "Funding Information: O projeto Actifcare em Portugal foi financiado pela Funda{\c c}{\~a}o para a Ci{\^e}ncia e a Tecnologia (FCT-JPND--HC-0001/2012), com o apoio da iniciativa de Programa{\c c}{\~a}o Conjunta da Uni{\~a}o Europeia – Investiga{\c c}{\~a}o em Doen{\c c}as Neurodegenerativas, JPND (EU Joint Programme – Neuro-degenerative Disease Research), JPND/2013/2. Maria J. Marques foi apoiada pela FCT (PD/ BD/128011/2016) e pelo Fundo Social Europeu atrav{\'e}s do Programa Operacional Potencial Humano. Publisher Copyright: {\textcopyright} Ordem dos M{\'e}dicos 2019.",

year = "2019",

month = may,

doi = "10.20344/amp.11136",

language = "Portuguese",

volume = "32",

pages = "355--367",

journal = "Acta Medica Portuguesa",

issn = "1646-0758",

publisher = "Ordem dos Medicos",

number = "5",

}

Goncalves-Pereira, M, Marques, MJ, Balsinha, C, Fernandes, A, Machado, AS, Verdelho, A, Barahona-Correa, B, Barrios, H, Guimaraes, J, Grave, J, Alves, L, de Almeida, MC, Reis, T, Orrell, M, Woods, B, De Vugt, M , Verhey, F , Wolfs, C , Handels, R, Kerpershoek, L, Meyer, G, Stephan, A, Bieber, A, Broda, A, Bartoszek, G, Jelley, H, Wimo, A, Skoldunger, A, Sjolund, B-M, Engedal, K, Selbaek, G, Michalet, M, Rosvik, J, Eriksen, S, Irving, K, Hopper, L, Joyce, R, Zanetti, O, Portolani, E & ActifCare Consortium 2019, 'Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare', Acta Medica Portuguesa, vol. 32, no. 5, pp. 355-367. https://doi.org/10.20344/amp.11136

TY - JOUR

T1 - Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare

AU - Goncalves-Pereira, Manuel

AU - Marques, Maria J.

AU - Balsinha, Conceicao

AU - Fernandes, Alexandra

AU - Machado, Ana Sa

AU - Verdelho, Ana

AU - Barahona-Correa, Bernardo

AU - Barrios, Helena

AU - Guimaraes, Joao

AU - Grave, Joana

AU - Alves, Luisa

AU - de Almeida, Manuel Caldas

AU - Reis, Teresa

AU - Orrell, Martin

AU - Woods, Bob

AU - De Vugt, Marjolein

AU - Verhey, Frans

AU - Wolfs, Claire

AU - Handels, Ron

AU - Kerpershoek, Liselot

AU - Meyer, Gabriele

AU - Stephan, Astrid

AU - Bieber, Anja

AU - Broda, Anja

AU - Bartoszek, Gabriele

AU - Jelley, Hannah

AU - Wimo, Anders

AU - Skoldunger, Anders

AU - Sjolund, Britt-Marie

AU - Engedal, Knut

AU - Selbaek, Geir

AU - Michalet, Mona

AU - Rosvik, Janne

AU - Eriksen, Siren

AU - Irving, Kate

AU - Hopper, Louise

AU - Joyce, Rachael

AU - Zanetti, Orazio

AU - Portolani, Elisa

AU - ActifCare Consortium

N1 - Funding Information: O projeto Actifcare em Portugal foi financiado pela Fundação para a Ciência e a Tecnologia (FCT-JPND--HC-0001/2012), com o apoio da iniciativa de Programação Conjunta da União Europeia – Investigação em Doenças Neurodegenerativas, JPND (EU Joint Programme – Neuro-degenerative Disease Research), JPND/2013/2. Maria J. Marques foi apoiada pela FCT (PD/ BD/128011/2016) e pelo Fundo Social Europeu através do Programa Operacional Potencial Humano. Publisher Copyright: © Ordem dos Médicos 2019.

PY - 2019/5

Y1 - 2019/5

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

KW - OLDER-PEOPLE

KW - CAMBERWELL ASSESSMENT

KW - HOSPITAL ANXIETY

KW - ELDERLY CANE

KW - VALIDATION

KW - CAREGIVERS

KW - VALIDITY

KW - BURDEN

KW - STATE

U2 - 10.20344/amp.11136

DO - 10.20344/amp.11136

M3 - Article

C2 - 31166896

SN - 1646-0758

VL - 32

SP - 355

EP - 367

JO - Acta Medica Portuguesa

JF - Acta Medica Portuguesa

IS - 5

ER -