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dc.contributor.authorAmador, Sarah
dc.contributor.authorGoodman, Claire
dc.contributor.authorMathie, Elspeth
dc.contributor.authorMachen, Ina
dc.contributor.authorBaron, Natasha
dc.date.accessioned2013-11-21T13:59:47Z
dc.date.available2013-11-21T13:59:47Z
dc.date.issued2013-12
dc.identifier.citationAmador , S , Goodman , C , Mathie , E , Machen , I & Baron , N 2013 , ' Preferences and priorities for ongoing and end-of-life care : A qualitative study of older people with dementia resident in care homes ' , International Journal of Nursing Studies , vol. 50 , no. 12 , pp. 1639-47 . https://doi.org/10.1016/j.ijnurstu.2013.06.008
dc.identifier.issn0020-7489
dc.identifier.otherPURE: 1834694
dc.identifier.otherPURE UUID: 9f177934-53b4-4f4f-ad45-7b04a5ecafd5
dc.identifier.otherScopus: 84886098015
dc.identifier.urihttp://hdl.handle.net/2299/12159
dc.description.abstractBackground: The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home. Objectives: To explore how older people with dementia discuss their priorities and preferences for end-of-life care. Methods: An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically. Results: People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future. Conclusion: For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementiaen
dc.language.isoeng
dc.relation.ispartofInternational Journal of Nursing Studies
dc.rights/dk/atira/pure/core/openaccesspermission/open
dc.titlePreferences and priorities for ongoing and end-of-life care : A qualitative study of older people with dementia resident in care homesen
dc.contributor.institutionDepartment of Adult Nursing and Primary Care
dc.contributor.institutionCentre for Research in Public Health and Community Care
dc.contributor.institutionOlder People's Health and Complex Conditions
dc.contributor.institutionSchool of Health and Social Work
dc.contributor.institutionHealth & Human Sciences Research Institute
dc.contributor.institutionNursing, Midwifery and Social Work
dc.contributor.institutionPatient Experience and Public Involvement
dc.description.statusPeer reviewed
dc.relation.schoolSchool of Health and Social Work
dc.description.versiontypeFinal Accepted Version
rioxxterms.versionAM
rioxxterms.versionofrecordhttps://doi.org/10.1016/j.ijnurstu.2013.06.008
rioxxterms.typeJournal Article/Review
herts.preservation.rarelyaccessedtrue
herts.rights.accesstypeopenAccess


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