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Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study
  1. Kirsten J Moore1,
  2. Bridget Candy1,
  3. Sarah Davis1,
  4. Anna Gola1,
  5. Jane Harrington1,
  6. Nuriye Kupeli1,
  7. Victoria Vickerstaff1,
  8. Michael King2,
  9. Gerard Leavey3,
  10. Irwin Nazareth4,
  11. Rumana Z Omar5,
  12. Louise Jones1,
  13. Elizabeth L Sampson1
  1. 1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
  2. 2 Division of Psychiatry, University College London, London, UK
  3. 3 Bamford Centre for Mental Health & Wellbeing, University of Ulster, Derry Londonderry, UK
  4. 4 Department of Primary Care and Population Health, University College London, UK
  5. 5 Department of Statistical Science, University College London, London, UK
  1. Correspondence to Dr. Kirsten J Moore; kirsten.moore{at}ucl.ac.uk

Abstract

Background Many people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia.

Objectives To (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data and costs of an interdisciplinary care leader (ICL) to facilitate the Intervention; (3) check the Intervention caused no harm.

Design A naturalistic feasibility study of Intervention implementation for 6 months.

Settings Two nursing homes in northern London, UK.

Participants Thirty residents with advanced dementia were assessed of whom nine were recruited for data collection; four of these residents’ family members were interviewed. Twenty-eight nursing home and external healthcare professionals participated in interviews at 7 (n=19), 11 (n=19) and 15 months (n=10).

Intervention An ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers.

Data collected Process and outcome data were collected. Symptoms were recorded monthly for recruited residents. Semistructured interviews were conducted at 7, 11 and 15 months with nursing home staff and external healthcare professionals and at 7 months with family carers. ICL hours were costed using Department of Health and Health Education England tariffs.

Results Contextual differences were identified between sites: nursing home 2 had lower involvement with external healthcare services. Core components were implemented at both sites but multidisciplinary meetings were only established in nursing home 1. The Intervention prompted improvements in advance care planning, pain management and person-centred care; we observed no harm. Six-month ICL costs were £18 255.

Conclusions Implementation was feasible to differing degrees across sites, dependent on context. Our data inform future testing to identify the Intervention’s effectiveness in improving end-of-life care in advanced dementia.

Trial registration ClinicalTrials.gov:NCT02840318: Results

  • Dementia
  • Adult palliative care
  • Change management
  • MEDICAL EDUCATION & TRAINING

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Twitter @MCPCRD

  • Contributors All authors made substantial contribution to the conception or design of the work or the acquisition, analysis, or interpretation of data for the work. All authors were involved in drafting the work or critically revising it, approving the final version to be published and agree to be accountable for the work.

  • Funding This work was supported by Marie Curie Cancer Care (now Marie Curie), (grant number: MCCC-FPR-11-U) through a process administered in partnership with Cancer Research UK.

  • Competing interests Authors had no competing interests

  • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

  • Ethics approval Ethical approval for roll-out of Compassion and data collection was granted by the National Research Ethics Service, London—Camden and Islington Research Ethics Committee (Reference 14/LO/0370) and for assessment of maintenance and sustainability by UCL Research Ethics Committee (ID 3618/001).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement All process data is included in the paper. We do not have ethical permission to disseminate interview transcripts.

  • Correction notice This paper has been amended since it was published Online First. Owing to a scripting error, some of the publisher names in the references were replaced with 'BMJ Publishing Group'. This only affected the full text version, not the PDF. We have since corrected these errors and the correct publishers have been inserted into the references.

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