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dc.contributor.authorMcCleary, Lynn
dc.contributor.authorThompson, Genevieve N
dc.contributor.authorVenturato, Lorraine
dc.contributor.authorWickson-Griffiths, Abigail
dc.contributor.authorHunter, Paulette
dc.contributor.authorSussman, Tamara
dc.contributor.authorKaasalainen, Sharon
dc.identifier.citationMcCleary et al. BMC Psychiatry (2018) 18:307
dc.description.abstractBackground: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. Method: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. Results: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. Discussion: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives’ questions about end of life. Conclusions: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents’ experiences of deaths of other residents is needed.en_US
dc.description.sponsorshipBrock University Library Open Access Publishing Funden_US
dc.rightsAttribution 2.5 Canada*
dc.subjectPalliative careen_US
dc.subjectNursing homesen_US
dc.subjectIllness trajectoryen_US
dc.titleMeaningful connections in dementia end of life care in long term care homesen_US

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Attribution 2.5 Canada
Except where otherwise noted, this item's license is described as Attribution 2.5 Canada