International Psychogeriatrics

Research Article

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

Gill Livingstona1 c1, Elanor Lewis-Holmesa1, Catherine Pitfielda1, Monica Manelaa1, Diana Chana1, Eleanor Constanta1, Hannah Jacobsa2, Gaby Willsa2, Natasha Carsona2 and Jackie Morrisa3

a1 Mental Health Sciences Unit, UCL, 67-73 Riding House Street 2nd Floor, Charles Bell House, London W1W 7EJ, UK

a2 Jewish Care, Maurice and Vivienne Wohl Campus, London, UK

a3 Research Department of Primary Care and Population Health, Faculty of Biomedical Sciences, UCL Medical School, Rowland Hill Street, London NW3, 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.

(Received May 27 2013)

(Reviewed June 09 2013)

(Revised June 21 2013)

(Accepted June 23 2013)

(Online publication August 07 2013)

Key words:

  • dementia;
  • care home;
  • end-of-life;
  • intervention;
  • death

Correspondence

c1 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.