What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders.

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  • Additional Information
    • Source:
      Publisher: BioMed Central Country of Publication: England NLM ID: 100968548 Publication Model: Electronic Cited Medium: Internet ISSN: 1471-2318 (Electronic) Linking ISSN: 14712318 NLM ISO Abbreviation: BMC Geriatr Subsets: MEDLINE
    • Publication Information:
      Original Publication: London : BioMed Central, [2001]-
    • Subject Terms:
      Stakeholder Participation*/psychology; Caregivers/*standards ; Dementia/*therapy ; Health Personnel/*standards ; Terminal Care/*methods ; Terminal Care/*standards; Caregivers/psychology ; Delivery of Health Care/methods ; Delivery of Health Care/standards ; Dementia/epidemiology ; Dementia/psychology ; England/epidemiology ; Female ; Focus Groups ; Health Personnel/psychology ; Humans ; Male ; Palliative Care/methods ; Palliative Care/psychology ; Palliative Care/standards ; Primary Health Care/methods ; Primary Health Care/standards ; Terminal Care/psychology
    • Abstract:
      Background: People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.
      Methods: The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.
      Results: Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.
      Conclusions: This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.
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    • Grant Information:
      RP-PG-0611-20005 United Kingdom DH_ Department of Health
    • Contributed Indexing:
      Keywords: Dementia; End of life care; Family caregivers; Palliative care; Qualitative research
    • Publication Date:
      Date Created: 20181206 Date Completed: 20190710 Latest Revision: 20231004
    • Publication Date:
      20231215
    • Accession Number:
      PMC6280541
    • Accession Number:
      10.1186/s12877-018-0983-0
    • Accession Number:
      30514221