The quality of family relationships in dementia

Detalhes bibliográficos
Autor(a) principal: Marques, Maria J.
Data de Publicação: 2023
Outros Autores: Gonçalves-Pereira, Manuel, de Vugt, Marjolein, Verhey, Frans, Woods, Bob
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10362/161721
Resumo: Funding Information: This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project ( https://www.jpnd.eu/ ). The Actifcare Consortium partners are Maastricht University (NL), Martin-Luther University Halle-Wittenberg (DE), Bangor University (UK), Nottingham University (UK), Karolinska Institutet (SE), Oslo University Hospital (NO), Dublin City University (IE), IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia (IT), Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT) (FCT - JPND-HC/0001/2012). Maria J. Marques was supported by POPH/ESF funding (FCT-PD/BD/128011/2016). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Research Council of Norway (Norway), The Swedish Research Council for Health, Working Life and Welfare (Sweden), EU Joint Programme - Neurodegenerative Disease Research (JPND) project, Fundação para a Ciência e a Tecnologia (FCT-PD/BD/128011/2016, FCTJP ND-HC/0001/2012), Health Research Board (Ireland), Ministry of Education and Research (Germany), The Netherlands Organization for Health Research and Development (The Netherlands), Ministry of Health (Italy), Economic and Social Research Council. Publisher Copyright: © The Author(s) 2023.
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spelling The quality of family relationships in dementiaMixed methods to unravel mixed feelingsAlzheimer’s diseasedementiadyadic perspectivefamily carequality of liferelationship qualitySociology and Political ScienceSocial Sciences(all)Funding Information: This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project ( https://www.jpnd.eu/ ). The Actifcare Consortium partners are Maastricht University (NL), Martin-Luther University Halle-Wittenberg (DE), Bangor University (UK), Nottingham University (UK), Karolinska Institutet (SE), Oslo University Hospital (NO), Dublin City University (IE), IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia (IT), Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT) (FCT - JPND-HC/0001/2012). Maria J. Marques was supported by POPH/ESF funding (FCT-PD/BD/128011/2016). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Research Council of Norway (Norway), The Swedish Research Council for Health, Working Life and Welfare (Sweden), EU Joint Programme - Neurodegenerative Disease Research (JPND) project, Fundação para a Ciência e a Tecnologia (FCT-PD/BD/128011/2016, FCTJP ND-HC/0001/2012), Health Research Board (Ireland), Ministry of Education and Research (Germany), The Netherlands Organization for Health Research and Development (The Netherlands), Ministry of Health (Italy), Economic and Social Research Council. Publisher Copyright: © The Author(s) 2023.Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches. Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis. Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., ‘communication’) may even improve after initial decline. ‘Closeness’ was consistently altered over time, from carers’ perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that ‘mixed feelings’ (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services’ assistance, seemed to facilitate positive (re)appraisals of the relationship. Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)Escola Nacional de Saúde Pública (ENSP)Comprehensive Health Research Centre (CHRC) - Pólo ENSPComprehensive Health Research Centre (CHRC) - pólo NMSRUNMarques, Maria J.Gonçalves-Pereira, Manuelde Vugt, MarjoleinVerhey, FransWoods, Bob2023-12-28T22:32:46Z2024-022024-02-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/161721eng1471-3012PURE: 79230711https://doi.org/10.1177/14713012231220759info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-03-11T05:44:34Zoai:run.unl.pt:10362/161721Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:58:37.518239Repositório 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 The quality of family relationships in dementia
Mixed methods to unravel mixed feelings
title The quality of family relationships in dementia
spellingShingle The quality of family relationships in dementia
Marques, Maria J.
Alzheimer’s disease
dementia
dyadic perspective
family care
quality of life
relationship quality
Sociology and Political Science
Social Sciences(all)
title_short The quality of family relationships in dementia
title_full The quality of family relationships in dementia
title_fullStr The quality of family relationships in dementia
title_full_unstemmed The quality of family relationships in dementia
title_sort The quality of family relationships in dementia
author Marques, Maria J.
author_facet Marques, Maria J.
Gonçalves-Pereira, Manuel
de Vugt, Marjolein
Verhey, Frans
Woods, Bob
author_role author
author2 Gonçalves-Pereira, Manuel
de Vugt, Marjolein
Verhey, Frans
Woods, Bob
author2_role author
author
author
author
dc.contributor.none.fl_str_mv NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
Escola Nacional de Saúde Pública (ENSP)
Comprehensive Health Research Centre (CHRC) - Pólo ENSP
Comprehensive Health Research Centre (CHRC) - pólo NMS
RUN
dc.contributor.author.fl_str_mv Marques, Maria J.
Gonçalves-Pereira, Manuel
de Vugt, Marjolein
Verhey, Frans
Woods, Bob
dc.subject.por.fl_str_mv Alzheimer’s disease
dementia
dyadic perspective
family care
quality of life
relationship quality
Sociology and Political Science
Social Sciences(all)
topic Alzheimer’s disease
dementia
dyadic perspective
family care
quality of life
relationship quality
Sociology and Political Science
Social Sciences(all)
description Funding Information: This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project ( https://www.jpnd.eu/ ). The Actifcare Consortium partners are Maastricht University (NL), Martin-Luther University Halle-Wittenberg (DE), Bangor University (UK), Nottingham University (UK), Karolinska Institutet (SE), Oslo University Hospital (NO), Dublin City University (IE), IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia (IT), Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT) (FCT - JPND-HC/0001/2012). Maria J. Marques was supported by POPH/ESF funding (FCT-PD/BD/128011/2016). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Research Council of Norway (Norway), The Swedish Research Council for Health, Working Life and Welfare (Sweden), EU Joint Programme - Neurodegenerative Disease Research (JPND) project, Fundação para a Ciência e a Tecnologia (FCT-PD/BD/128011/2016, FCTJP ND-HC/0001/2012), Health Research Board (Ireland), Ministry of Education and Research (Germany), The Netherlands Organization for Health Research and Development (The Netherlands), Ministry of Health (Italy), Economic and Social Research Council. Publisher Copyright: © The Author(s) 2023.
publishDate 2023
dc.date.none.fl_str_mv 2023-12-28T22:32:46Z
2024-02
2024-02-01T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
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status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10362/161721
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dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1471-3012
PURE: 79230711
https://doi.org/10.1177/14713012231220759
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eu_rights_str_mv openAccess
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