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Improving the end-of-life for people with dementia living in a care home: an intervention study

Published online by Cambridge University Press:  07 August 2013

Gill Livingston*
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Elanor Lewis-Holmes
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Catherine Pitfield
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Monica Manela
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Diana Chan
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Eleanor Constant
Affiliation:
Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK
Hannah Jacobs
Affiliation:
Jewish Care, Maurice and Vivienne Wohl Campus, London, UK
Gaby Wills
Affiliation:
Jewish Care, Maurice and Vivienne Wohl Campus, London, UK
Natasha Carson
Affiliation:
Jewish Care, Maurice and Vivienne Wohl Campus, London, UK
Jackie Morris
Affiliation:
Research Department of Primary Care and Population Health, Faculty of Biomedical Sciences, UCL Medical School, Rowland Hill Street, London NW3, UK
*
Correspondence should be addressed to: Professor G. Livingston, Mental Health Sciences Unit, UCL, Charles Bell House, 67-73 Riding House Street 2nd Floor, London W1W 7EJ, UK. Phone: +44 (0)20 7561 4218. Email: g.livingston@ucl.ac.uk.

Abstract

Background:

One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes.

Methods:

We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers’ after-death interviews pre- and post-intervention.

Results:

Post-intervention there were significant increases in documented advance care wishes arising from residents’ and relatives’ discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes.

Conclusion:

This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2013 

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