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Open Access 01-12-2018 | Research article

Meaningful connections in dementia end of life care in long term care homes

Authors: Lynn McCleary, Genevieve N Thompson, Lorraine Venturato, Abigail Wickson-Griffiths, Paulette Hunter, Tamara Sussman, Sharon Kaasalainen

Published in: BMC Psychiatry | Issue 1/2018

Abstract

Background

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.

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Title: Meaningful connections in dementia end of life care in long term care homes
Authors: Lynn McCleary
Genevieve N Thompson
Lorraine Venturato
Abigail Wickson-Griffiths
Paulette Hunter
Tamara Sussman
Sharon Kaasalainen
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: BMC Psychiatry / Issue 1/2018
Electronic ISSN: 1471-244X
DOI: https://doi.org/10.1186/s12888-018-1882-9

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Meaningful connections in dementia end of life care in long term care homes

Abstract

Background

Method

Results

Discussion

Conclusions

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Background

Method

Results

Discussion

Conclusions

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