'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

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  • Additional Information
    • Corporate Authors:
      PISCES study group
    • Source:
      Publisher: Oxford University Press Country of Publication: England NLM ID: 0375655 Publication Model: Print Cited Medium: Internet ISSN: 1468-2834 (Electronic) Linking ISSN: 00020729 NLM ISO Abbreviation: Age Ageing Subsets: MEDLINE
    • Publication Information:
      Publication: Oxford : Oxford University Press
      Original Publication: London, Baillière, Tindall.
    • Subject Terms:
      Caregivers*/psychology ; Dementia*/psychology ; Dementia*/mortality ; Attitude to Death* ; Quality of Life*; Humans ; Male ; Female ; Aged ; Middle Aged ; Severity of Illness Index ; Aged, 80 and over ; Time Factors
    • Abstract:
      Background: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it.
      Objectives: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish.
      Methods: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death.
      Results: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish.
      Conclusion: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.
      (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: [email protected].)
    • Grant Information:
      NMRC/HSRG/0081/2017 National Medical Research Council's Health Services Research Grant; COVID19TUG21-0031 COVID-19 Top-up Grant; LCPC-IN21-0001 Lien Centre for Palliative Care Research Award
    • Contributed Indexing:
      Investigator: T Østbye; D Seow; P Yap; LL Tan; WY Tham; J Vaingankar; J Foo; B Yeow Tan; K Tong; W Chong Ng; J Carson Allen; R Malhotra; W Mooi Tan; S Liang Wee; L Ling Ng; R Goveas; V Mok; A Sim; W Fern Ng; H Khuan Wong; B Balasundaram; R Qi Tan; P Sim Ong; CY Cheong; AY Chung Pheng; C Tiong; A Hum; A Lee; EA Finkelstein
      Keywords: caregiver; dementia; older people; palliative care; psychological distress; terminal illness; wish for death
    • Publication Date:
      Date Created: 20240527 Date Completed: 20240527 Latest Revision: 20240701
    • Publication Date:
      20240701
    • Accession Number:
      10.1093/ageing/afae103
    • Accession Number:
      38798114