Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal
Autor(a) principal: | |
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Data de Publicação: | 2024 |
Outros Autores: | , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427 |
Resumo: | Introduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables.Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used.Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers’ ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers’ depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers’ psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable.Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants’ needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes. |
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Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in PortugalNecessidades de Cuidados, Utilização de Serviços e Qualidade de Vida na Demência: Reavaliação da Amostra Portuguesa no Estudo Actifcare após 12 MesesCaregiversDementiaHealth Services AccessibilityNeeds AssessmentAcessibilidade aos Serviços de SaúdeAvaliação das NecessidadesCuidadoresDemênciaPrestação de cuidadosIntroduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables.Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used.Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers’ ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers’ depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers’ psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable.Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants’ needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.Introdução: As fases intermédias da demência têm sido menos investigadas. O projecto EU-JPND Actifcare (ACcess to TImely Formal Care) estudou as necessidades de pessoas com demência ligeira-moderada e o acesso/utilização de serviços na comunidade (v.g., centros de dia, apoio domiciliário). Na avaliação inicial da subamostra portuguesa, as necessidades não cobertas de alguns participantes exigiriam apoio formal, nem sempre disponível ou procurado. Apresentamos agora resultados do estudo longitudinal (12 meses), analisando necessidades, utilização dos serviços, qualidade de vida e variáveis relacionadas.Métodos: Estudo longitudinal de uma amostra de conveniência (54 díades doente/familiar-cuidador). Além dos principais instrumentos (Camberwell Assessment of Need for the Elderly - CANE, Resources Utilization in Dementia), foram realizadas avaliações complementares: clínico-funcionais, qualidade de vida, sofrimento psicológico, experiência de cuidar.Resultados: No follow-up, o estado cognitivo e funcional das pessoas com demência piorou (p < 0,001) e os sintomas neuropsiquiátricos aumentaram (p = 0,033). O total de necessidades aumentou (p < 0,001), mas o total de necessidades não cobertas e a qualidade de vida permaneceram estáveis. A utilização de cuidados formais não aumentou significativamente, mas os cuidados informais sim (nalguns domínios). Os sintomas depressivos dos familiares-cuidadores aumentaram (p = 0,030), diminuindo o tempo de perseverança (p = 0,045). Porém, as suas necessidades não cobertas de sofrimento psicológico foram menores (p = 0,007), enquanto o stress e a qualidade de vida permaneceram estáveis.Conclusão: Estas pessoas com demência apresentavam necessidades biopsicossociais complexas e não cobertas. O declínio cognitivo-funcional ao longo de um ano não foi, aparentemente, acompanhado por um aumento de necessidades não cobertas, nem da utilização de serviços. A maior utilização dos cuidados informais (supervisão) pode ter contribuído para tal. A análise das dimensões da experiência de cuidar sugere tendências não inteiramente uniformes, embora a estabilidade fosse quase a regra. Os familiares-cuidadores ‘primários’ estavam ainda mais presentes no follow-up, sem que isso pareça ter alterado as suas próprias necessidades, sobrecarga e qualidade de vida. Em suma, apresentamos uma análise longitudinal abrangente de uma amostra comunitária de famílias de pessoas com demência ligeira-moderada. Não sendo os resultados generalizáveis, ao fim de um ano as necessidades dos participantes mantiveram-se globalmente estáveis e parcialmente não cobertas. Para compreender processos tão complexos, necessitamos de estudos com tempos de seguimento maiores.Ordem dos Médicos2024-03-08info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttps://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427Acta Médica Portuguesa; In PressActa Médica Portuguesa; In Press1646-07580870-399Xreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPenghttps://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427/15338Direitos de Autor (c) 2024 Acta Médica Portuguesainfo:eu-repo/semantics/openAccessGonçalves-Pereira, ManuelMarques, Maria J.F. Alves, ReginaVerdelho, AnaBalsinha, ConceiçãoAlves, LuísaAlves Reis, TeresaWoods, Bobde Vugt, MarjoleinVerhey, Franson behalf of the Actifcare Consortium2024-03-10T03:00:15Zoai:ojs.www.actamedicaportuguesa.com:article/20427Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:14:21.608619Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal Necessidades de Cuidados, Utilização de Serviços e Qualidade de Vida na Demência: Reavaliação da Amostra Portuguesa no Estudo Actifcare após 12 Meses |
title |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
spellingShingle |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal Gonçalves-Pereira, Manuel Caregivers Dementia Health Services Accessibility Needs Assessment Acessibilidade aos Serviços de Saúde Avaliação das Necessidades Cuidadores Demência Prestação de cuidados |
title_short |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
title_full |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
title_fullStr |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
title_full_unstemmed |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
title_sort |
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal |
author |
Gonçalves-Pereira, Manuel |
author_facet |
Gonçalves-Pereira, Manuel Marques, Maria J. F. Alves, Regina Verdelho, Ana Balsinha, Conceição Alves, Luísa Alves Reis, Teresa Woods, Bob de Vugt, Marjolein Verhey, Frans on behalf of the Actifcare Consortium |
author_role |
author |
author2 |
Marques, Maria J. F. Alves, Regina Verdelho, Ana Balsinha, Conceição Alves, Luísa Alves Reis, Teresa Woods, Bob de Vugt, Marjolein Verhey, Frans on behalf of the Actifcare Consortium |
author2_role |
author author author author author author author author author author |
dc.contributor.author.fl_str_mv |
Gonçalves-Pereira, Manuel Marques, Maria J. F. Alves, Regina Verdelho, Ana Balsinha, Conceição Alves, Luísa Alves Reis, Teresa Woods, Bob de Vugt, Marjolein Verhey, Frans on behalf of the Actifcare Consortium |
dc.subject.por.fl_str_mv |
Caregivers Dementia Health Services Accessibility Needs Assessment Acessibilidade aos Serviços de Saúde Avaliação das Necessidades Cuidadores Demência Prestação de cuidados |
topic |
Caregivers Dementia Health Services Accessibility Needs Assessment Acessibilidade aos Serviços de Saúde Avaliação das Necessidades Cuidadores Demência Prestação de cuidados |
description |
Introduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables.Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used.Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers’ ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers’ depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers’ psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable.Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants’ needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes. |
publishDate |
2024 |
dc.date.none.fl_str_mv |
2024-03-08 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427 |
url |
https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427 https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/20427/15338 |
dc.rights.driver.fl_str_mv |
Direitos de Autor (c) 2024 Acta Médica Portuguesa info:eu-repo/semantics/openAccess |
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Direitos de Autor (c) 2024 Acta Médica Portuguesa |
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openAccess |
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application/pdf |
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Ordem dos Médicos |
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Ordem dos Médicos |
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Acta Médica Portuguesa; In Press Acta Médica Portuguesa; In Press 1646-0758 0870-399X reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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