How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem

Abstract

BackgroundAssessment of people with dementia is challenging; with undetected and under treated symptoms and concerns resulting in avoidable distress, and few evidence-based interventions to support this. We aimed to understand the mechanisms of action of a measure to support comprehensive assessment of people with dementia in care homes; and its acceptability, feasibility, and implementation requirements.MethodsA qualitative study with an embedded quantitative component in three residential care homes, underpinned by an initial theoretical model of mechanisms of action. The measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), was introduced into the care of residents with dementia for 12 weeks. Qualitative data comprised focus groups and semi-structured interviews with family, care home staff, general practitioners and district nurses; and non-participant observations. Quantitative data comprised IPOS-Dem data. Directed content analysis for qualitative data, and descriptive statistics were used for quantitative data.FindingsKey mechanisms of action were: improved observation and awareness of residents, collaborative assessment, comprehensive ‘picture of the person’, systematic record keeping, improved review and monitoring, care planning and changes to care provision, and facilitated multi-agency communication. Potential benefit included improved symptom management, improved comprehensive care, and increased family empowerment and engagement. IPOS-Dem was found to be acceptable and feasible. It was perceived as quick and easy to use, with proportion of overall missing data decreasing from 2.1% to 1.1% from baseline to final time points. ‘Trust’ in the measure was important; and leadership essential to ensure integration into care processes.ConclusionsIn a population with complex care needs, with challenges to assessment and barriers to multi-agency working, a measure introduced into routine care is feasible and acceptable, and supports assessment and management of symptoms and concerns. A refined theoretical model demonstrating the likely mechanisms of action was developed. Further evaluation is required to test its effectiveness.

Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement)

“…Challenges: (1) high cognitive impairment, 76% participants assessed lacked capacity for informed consent; (2) MMSE did not predict the presence of capacity. Ellis-Smith et al [ 78 ], UK, B2 2018 Prospective, mixed methods feasibility study to explore the mechanisms of action, feasibility, acceptability, and implementation requirements of a measure, the Integrated Palliative care Outcome Scale (IPOS-Dem), used in routine care to support comprehensive assessment of symptoms and concerns of care home residents with dementia and their family members. Three residential care homes registered to provide care for people aged 65 and over in a London borough, UK Palliative/residential care home residents with dementia The research team met with residents to ascertain willingness to participate and assess mental capacity to consent for themselves.…”

“…To overcome potential hesitancy from consultees required active engagement with consultees, keeping in touch and being flexible, highlighting potential benefits, and lowering burden for the consultee [75]. To minimise exclusion of eligible patients due to unavailability of personal consultees, studies used processes of a professional consultees and a clear recruitment strategy detailing the procedures [42,78]. A cohort study involving people with dementia from six care homes achieved 62.1% patient recruitment rate (n = 133/215) using a process of informed consent when possible (n = 65/89, 73.8%) and personal consultees (n = 68/126, 54%) [74].…”

The impact of population ageing on end-of-life care in Scotland: projections of place of death and recommendations for future service provision

“…Palliative care needs to be part of the curriculum for health and social care professionals, and students would benefit from opportunities to experience care of people with advanced progressive illness in primary care and care homes as part of their training [30]. This would need to be supported by appropriate tools to aid assessment and management, such as the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) [31, 32] and decision support [33]. Palliative care delivered in the community out-of-hours poses challenges to patient safety as most resources go into in-hours care [34].…”

A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT

“…This recruitment rate for informal carers is comparable with other care home research. 177,178 Informal carers were nearly equally male and female, with no difference in mean age across the two groups, of 69.88 years. Again, this was predominantly a group with white ethnicity, with only one African Caribbean relative.…”