Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2018 |
| Outros Autores: | , , , , , , , , , , , , , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| Texto Completo: | http://hdl.handle.net/10362/149315 |
Resumo: | Funding: The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu [grant number 733051001]. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology (Fundac¸ao para a Ci ~ ^encia e Tecnologia [grant number FCT– JPND-HC/ 0001/2012], United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study. |
| id |
RCAP_c5c56a9ee3383c9c6bac0a919b0e7b82 |
|---|---|
| oai_identifier_str |
oai:run.unl.pt:10362/149315 |
| network_acronym_str |
RCAP |
| network_name_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| repository_id_str |
7160 |
| spelling |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice(un)met needsDementiainformal carerquality of lifeFunding: The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu [grant number 733051001]. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology (Fundac¸ao para a Ci ~ ^encia e Tecnologia [grant number FCT– JPND-HC/ 0001/2012], United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study.OBJECTIVE: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). METHOD: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. RESULTS: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. CONCLUSION: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.Centro de Estudos de Doenças Crónicas (CEDOC)NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)RUNKerpershoek, Liselotde Vugt, MarjoleinWolfs, ClaireWoods, BobJelley, HannahOrrell, MartinStephan, AstridBieber, AnjaMeyer, GabrieleSelbaek, GeirHandels, RonWimo, AndersHopper, LouiseIrving, KateMarques, MariaGonçalves-Pereira, ManuelPortolani, ElisaZanetti, OrazioVerhey, Frans2023-02-16T22:13:48Z20182018-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/article6application/pdfhttp://hdl.handle.net/10362/149315eng1360-7863PURE: 3278503https://doi.org/10.1080/13607863.2017.1390732info: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:RCAAP2024-03-11T05:31:15Zoai:run.unl.pt:10362/149315Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:53:42.997838Repositório 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 and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| title |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| spellingShingle |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice Kerpershoek, Liselot (un)met needs Dementia informal carer quality of life |
| title_short |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| title_full |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| title_fullStr |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| title_full_unstemmed |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| title_sort |
Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice |
| author |
Kerpershoek, Liselot |
| author_facet |
Kerpershoek, Liselot de Vugt, Marjolein Wolfs, Claire Woods, Bob Jelley, Hannah Orrell, Martin Stephan, Astrid Bieber, Anja Meyer, Gabriele Selbaek, Geir Handels, Ron Wimo, Anders Hopper, Louise Irving, Kate Marques, Maria Gonçalves-Pereira, Manuel Portolani, Elisa Zanetti, Orazio Verhey, Frans |
| author_role |
author |
| author2 |
de Vugt, Marjolein Wolfs, Claire Woods, Bob Jelley, Hannah Orrell, Martin Stephan, Astrid Bieber, Anja Meyer, Gabriele Selbaek, Geir Handels, Ron Wimo, Anders Hopper, Louise Irving, Kate Marques, Maria Gonçalves-Pereira, Manuel Portolani, Elisa Zanetti, Orazio Verhey, Frans |
| author2_role |
author author author author author author author author author author author author author author author author author author |
| dc.contributor.none.fl_str_mv |
Centro de Estudos de Doenças Crónicas (CEDOC) NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM) RUN |
| dc.contributor.author.fl_str_mv |
Kerpershoek, Liselot de Vugt, Marjolein Wolfs, Claire Woods, Bob Jelley, Hannah Orrell, Martin Stephan, Astrid Bieber, Anja Meyer, Gabriele Selbaek, Geir Handels, Ron Wimo, Anders Hopper, Louise Irving, Kate Marques, Maria Gonçalves-Pereira, Manuel Portolani, Elisa Zanetti, Orazio Verhey, Frans |
| dc.subject.por.fl_str_mv |
(un)met needs Dementia informal carer quality of life |
| topic |
(un)met needs Dementia informal carer quality of life |
| description |
Funding: The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu [grant number 733051001]. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology (Fundac¸ao para a Ci ~ ^encia e Tecnologia [grant number FCT– JPND-HC/ 0001/2012], United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study. |
| publishDate |
2018 |
| dc.date.none.fl_str_mv |
2018 2018-01-01T00:00:00Z 2023-02-16T22:13:48Z |
| 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 |
http://hdl.handle.net/10362/149315 |
| url |
http://hdl.handle.net/10362/149315 |
| dc.language.iso.fl_str_mv |
eng |
| language |
eng |
| dc.relation.none.fl_str_mv |
1360-7863 PURE: 3278503 https://doi.org/10.1080/13607863.2017.1390732 |
| dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
| eu_rights_str_mv |
openAccess |
| dc.format.none.fl_str_mv |
6 application/pdf |
| dc.source.none.fl_str_mv |
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
| instname_str |
Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
| instacron_str |
RCAAP |
| institution |
RCAAP |
| reponame_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| collection |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| repository.name.fl_str_mv |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
| repository.mail.fl_str_mv |
|
| _version_ |
1799138127297642496 |