The Compassion Intervention: A Pilot Study of Enhanced Integrated Care for People With Severe Memory Problems

Within a three-year research programme the investigators used the RAND/UCLA Appropriateness Method (Fitch, 2001) to achieve national consensus on the components of Compassion ('the Intervention'), a complex intervention for a model of end of life care for people with advanced dementia. The Intervention consists of two core components: facilitation of an integrated, multi-disciplinary approach to assessment, treatment and care; and education, training and support for formal and informal carers. The development is described in detail in a manual and a publication (Jones, 2015). The Intervention is coordinated by an Advanced Dementia Interdisciplinary Care Leader (ICL) The ICL role requires extensive clinical experience in care of frail older people and those with dementia, particularly towards end of life. Skills may be drawn from the fields of nursing, social work or a profession allied to medicine. This theory-driven approach to improving end of life care in advanced dementia has not previously been tested in a real-world setting. The protocol is published (Elliott, 2014).

The study will be an exploratory, naturalistic implementation study of the Compassion Intervention following the principles of dynamic sustainability, recognising that implementing protocols in real-life settings requires adaptations, and that rigid adherence to guidelines tested in controlled settings may not be suitable or effective in broader contexts (Chambers, 2013). The investigators structured their approach using the phases of implementation described by Grol and colleagues (2007) including orientation, insight, acceptance, change and maintenance. A full time ICL with a social care background and considerable experience working with people with dementia in care homes was employed. The ICL will be supervised by clinicians with palliative and dementia expertise within the research team and two external clinicians.

Two care homes, both predominately nursing home level of care, were invited to participate having been involved in an earlier phase of the research programme; a longitudinal (9 months) cohort study to examine the needs of people with advanced dementia and their family carers (Jones, 2012). Care home managers gave written consent for their site to participate, and permission for the ICL to carry out clinical assessments of eligible residents and have access to their files. Managers will identify eligible residents. Implementation will occur over 15 months. In month 1, in each care home, the ICL will meet with care home managers, deputy managers and key external healthcare professionals who visit the care homes. Posters promoting the intervention will be displayed in each care home. The Intervention was launched in Care Home 1 in May 2014 and Care Home 2 in June 2014. The ICL will be actively engaged in each care home for six months to co-ordinate activities. After six months the ICL will cease active engagement. To assess maintenance of activities, interviews with relevant stakeholders will be conducted after the ICL withdraws at months 7, 11 and 15.

The ICL will keep a reflective diary to document observations of practice, liaison with staff, family and residents, examples of improvements in care and personal responses to the role. The diary will influence implementation by enabling the ICL to reflect on her role in situ and modify her approach if required. The ICL will keep a daily log of time spent on tasks related to implementation to enable estimation of costs. It was expected that care home and external healthcare professional time to be involved in Intervention meetings and training will be consistent with their usual job descriptions and so will not be considered an additional cost of the Intervention and any opportunity costs will be offset by the training skills acquired. During the six months at the care homes, the ICL will collect monthly care home-wide data on the number of residents with: documented resuscitation status; a pain management plan; preferred place of death recorded; and hospital admissions. Data on emergency phone calls and location of deaths will be collected. Resident assessments undertaken by the ICL will not be used as research data. These data will be maintained within the care home as clinical information according to their governance polices. Findings from assessments, however, can be reflected on in the anonymised ICL diary and used to inform other Intervention activities such as training. Formal training sessions will be evaluated using evaluation forms.

Monthly individual resident outcome data will be collected by researchers (not the ICL) from residents assessed by the ICL and their family carers. As residents are unlikely to have capacity to make an informed decision to participate in research, care home managers will invite next of kin/primary contact to give consent for this monthly outcome data to be collected. If a next of kin is not available, a professional consultee will provide agreement according to UK's Mental Capacity Act (2005). Residents will be recruited during the first four months of implementation to ensure collection of at least three months of outcome data.