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dc.contributor.authorAaltonen, Mari S
dc.contributor.authorMartin-Matthews, Anne
dc.contributor.authorPulkki, Jutta M
dc.contributor.authorEskola, Päivi
dc.contributor.authorJolanki, Outi H
dc.date.accessioned2021-02-23T12:35:27Z
dc.date.available2021-02-23T12:35:27Z
dc.date.issued2021
dc.identifier.citationAaltonen, M. S., Martin-Matthews, A., Pulkki, J. M., Eskola, P., & Jolanki, O. H. (2021). Experiences of people with memory disorders and their spouse carers on influencing formal care : “They ask my wife questions that they should ask me”. <i>Dementia</i>, <i>20</i>(7), 2307-2322. <a href="https://doi.org/10.1177/1471301221994300" target="_blank">https://doi.org/10.1177/1471301221994300</a>
dc.identifier.otherCONVID_51605724
dc.identifier.urihttps://jyx.jyu.fi/handle/123456789/74361
dc.description.abstractBackground People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.en
dc.format.mimetypeapplication/pdf
dc.language.isoeng
dc.publisherSAGE Publications
dc.relation.ispartofseriesDementia
dc.rightsCC BY 4.0
dc.subject.othermemory disorder
dc.subject.otheragency
dc.subject.otherfamily care
dc.subject.otherinformal care
dc.subject.otherformal care
dc.titleExperiences of people with memory disorders and their spouse carers on influencing formal care : “They ask my wife questions that they should ask me”
dc.typearticle
dc.identifier.urnURN:NBN:fi:jyu-202102231747
dc.contributor.laitosAvoin yliopistofi
dc.contributor.laitosYhteiskuntatieteiden ja filosofian laitosfi
dc.contributor.laitosOpen Universityen
dc.contributor.laitosDepartment of Social Sciences and Philosophyen
dc.contributor.oppiaineYhteiskuntapolitiikkafi
dc.contributor.oppiaineGerontologian tutkimuskeskusfi
dc.contributor.oppiaineHyvinvoinnin tutkimuksen yhteisöfi
dc.contributor.oppiaineSocial and Public Policyen
dc.contributor.oppiaineGerontology Research Centeren
dc.contributor.oppiaineSchool of Wellbeingen
dc.type.urihttp://purl.org/eprint/type/JournalArticle
dc.type.coarhttp://purl.org/coar/resource_type/c_2df8fbb1
dc.description.reviewstatuspeerReviewed
dc.format.pagerange2307-2322
dc.relation.issn1471-3012
dc.relation.numberinseries7
dc.relation.volume20
dc.type.versionpublishedVersion
dc.rights.copyright© The Author(s) 2021
dc.rights.accesslevelopenAccess
dc.subject.ysotoimijuus
dc.subject.ysoterveyspalvelut
dc.subject.ysomuistisairaat
dc.subject.ysoomaishoito
dc.subject.ysopäätöksenteko
dc.subject.ysomuistisairaudet
dc.subject.ysoomaishoitajat
dc.subject.ysososiaalipalvelut
dc.format.contentfulltext
jyx.subject.urihttp://www.yso.fi/onto/yso/p2335
jyx.subject.urihttp://www.yso.fi/onto/yso/p3307
jyx.subject.urihttp://www.yso.fi/onto/yso/p27121
jyx.subject.urihttp://www.yso.fi/onto/yso/p19584
jyx.subject.urihttp://www.yso.fi/onto/yso/p8743
jyx.subject.urihttp://www.yso.fi/onto/yso/p22037
jyx.subject.urihttp://www.yso.fi/onto/yso/p19104
jyx.subject.urihttp://www.yso.fi/onto/yso/p1307
dc.rights.urlhttps://rightsstatements.org/page/InC/1.0/
dc.relation.doi10.1177/1471301221994300
jyx.fundinginformationThe author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a grant to Dr Mari S Aaltonen from the Academy of Finland (318985).
dc.type.okmA1


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