Abstract
BackgroundPeople with dementia living in residential care homes often experience multiple symptoms and concerns associated with dementia and co-morbidities. As dementia progresses, individuals may experience increasing difficulties expressing their wishes and concerns. The complexity of symptom presentation and declining communication mean the assessment and management of symptoms and concerns is often challenging. Poor detection results in symptoms and concerns being untreated, increasing distress and compromising quality of life. A systematic review identified no comprehensive measure to support assessment and management of symptoms and concerns by care home staff for people with dementia.
Aim
To develop and then conduct a preliminary evaluation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) to improve assessment and management of symptoms and concerns for people with dementia in residential care homes.
Methods
Design: A three-phase mixed methods study informed by the Medical Research Council guidance for developing and evaluating complex interventions. The study was underpinned by a theoretical model of the expected mechanisms of action of a measure used in routine care to improve assessment and management of symptoms and concerns.
Setting and participants: Three residential care homes in a borough in South London. Participants were people with dementia/cognitive impairment in residential care homes, their family members, care home staff, and health care professionals including general practitioners and district nurses.
Pre-clinical scoping review phase: A systematic scoping review of the literature to identify common symptoms and concerns experienced by people with dementia to develop IPOS-Dem Version 1, adapted from the Integrated Palliative care Outcome Scale (IPOS).
Development phase: A qualitative phase comprising focus groups and semi-structured interviews with family members, care home staff, and health care professionals to explore content validity, expected mechanisms of action, acceptability, feasibility, and implementation requirements of IPOS-Dem used in routine care of people with dementia in the care home context. Followed by cognitive interviews to determine the acceptability and ease of comprehension of IPOS-Dem to care home staff.
Evaluation phase: A qualitative study with embedded quantitative component. IPOS-Dem was implemented in routine care of people with cognitive impairment in residential care homes. Qualitative data collection comprised focus groups and semi-structured interviews with family members, care home staff, and health care professionals, and non-participation observations of health care professional consultations with care home staff to explore the mechanisms of action, acceptability, feasibility, and implementation requirements of IPOS-Dem in the care home context. Quantitative data comprised IPOS-Dem scores at baseline and final time point at 12 weeks. Qualitative data were analysed using directed content analysis and quantitative using descriptive statistics. Qualitative and quantitative data were analysed separately and then integrated on key areas to inform the final theoretical model.
Results
Pre-clinical scoping review phase: Five additional items were identified and five existing IPOS items were amended to reflect symptoms and concerns experienced by people with dementia and multi-morbidities, resulting in IPOS-Dem Version 1.
Development phase: Six family members and 20 care home staff and health care professionals participated in focus groups (n=4) or semi-structured interviews (n=3). Ten care home staff participated in cognitive interviews. Five additional symptoms and concerns to ensure comprehensive assessment were identified resulting in Version 2. Refinements from cognitive interviews included the use of lay terms and item descriptors and formed Version 3. The development phase output was IPOS-Dem Version 3 with a pre-implementation understanding of the care home context, likely mechanisms of action, acceptability, feasibility, and implementation requirements ready for the evaluation phase.
Evaluation phase: Thirty-two residents with cognitive impairment received IPOS-Dem as part of routine care with 30 completing the full 12 weeks evaluation. Seven family members, and 11 care home staff and health care professionals participated in focus groups (n=2), semi-structured interviews (n=7), and/or non-participant observations (n=3). Findings informed a theoretical model to demonstrate the key mechanisms of action and potential benefit, measurement properties, and implementation requirements. Mechanisms of action included, for example, improved observation and awareness of residents, comprehensive ‘picture of the person’, and facilitated communication. Potential benefit was improved symptom management and comprehensive care, and increased family empowerment and engagement. IPOS-Dem was acceptable and feasible, with participants reporting that it supported care processes and was quick and easy to use. Missing data decreased from 2.1% at baseline to 1.1% at final time point. Leadership was essential in implementing IPOS-Dem into routine care processes.
Conclusion
IPOS-Dem addresses a gap in the comprehensive assessment and management of symptoms and concerns experienced by people with dementia in care homes. It incorporates key symptoms and concerns that older people with dementia and multi-morbidities, and their family members may experience; and is developed for care home staff knowledge, skills and remit within the care home context. It is acceptable and feasible for use in routine care, and may improve care processes resulting in potential benefit to people with dementia and their family members. IPOS-Dem is now ready for future research on the psychometric properties and a feasibility trial to test the methods for a full trial of effectiveness on improving care outcomes.
| Date of Award | 1 May 2018 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Catherine Evans (Supervisor), Irene Higginson (Supervisor) & Barbara Daveson (Supervisor) |