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

Int Psychogeriatr. 2013 Nov;25(11):1849-58. doi: 10.1017/S1041610213001221. Epub 2013 Aug 7.


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.

MeSH terms

  • Advance Care Planning / standards
  • Aged
  • Aged, 80 and over
  • Dementia / therapy*
  • Family
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Nursing Homes / standards*
  • Quality Improvement* / organization & administration
  • Quality of Life
  • Terminal Care / methods*
  • Terminal Care / standards