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

Abstract

BackgroundMany 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.ObjectivesTo (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.DesignA naturalistic feasibility study of Intervention implementation for 6 months.SettingsTwo nursing homes in northern London, UK.ParticipantsThirty 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).InterventionAn ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers.Data collectedProcess 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.ResultsContextual 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.ConclusionsImplementation 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 registrationClinicalTrials.gov:NCT02840318: Results

How do Admiral Nurses and care home staff help people living with dementia and their family carers prepare for end‐of‐life?

“…Our findings from care homes indicate that discussions more commonly occurred with residents who had capacity than with family; however, the frequency in which residents have capacity was not elicited and may be uncommon. Our previous work has found that care home staff need support in having these discussions with family and tend to view ACP as a tick box exercise . Experience working in a palliative care setting may help develop these communication skills and may explain why carers with a relative who accesses hospice care report higher preparation for end‐of‐life …”

“…Our previous work has found that care home staff need support in having these discussions with family and tend to view ACP as a tick box exercise. 26,27 Experience working in a palliative care setting may help develop these communication skills and may explain why carers with a relative who accesses hospice care report higher preparation for end-of-life. 28 There was a slight trend (no statistical analysis) for memory services to be more reluctant to endorse EAPC recommendations to start ACP as soon as possible after diagnosis (60% endorsement) and to offer bereavement support to carers following diagnosis (40% endorsement); both of which were endorsed by approximately 80% of Admiral Nurses and care home managers.…”

Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective

“…In particular we have gained insights into the importance of integrating the needs of both informal and professional carers in considering end of life care for people with advanced dementia. Training and support for informal carers was identified as a key component in our COMPASSION intervention [34,47]. The COMPASSION manual is available for download (https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/ the-compassion-intervention-manual.pdf).…”

Quality of care for frail older adults

“…File notes were able to significantly improve staff knowledge of residents whom they were already caring for suggesting staff had not previously read these files. Our research in care homes has found that staff rarely have time to read care plans and updating them often becomes a tick box exercise (Moore et al, 2017), although action research approaches can help staff reflect on practice to introduce more meaningful assessment and review (Lea et al, 2012). Røen et al (2017) examined factors that affected person-centered care by surveying over a thousand staff from 45 Norwegian nursing homes.…”