IES Platform - development of an awareness-based intervention to enhance quality of life in severe dementia

Quality of residential care for people with severe dementia is poor and in urgent need of improvement. While improving quality of care is important for all residents, there is a risk that people with more severe dementia, many of whom no longer communicate verbally, will be marginalised and fail to have their psychological and social needs met. Carers may assume that people with severe dementia are unaware of their surroundings and of what is happening to them. As a result, carers may focus on getting tasks done without paying much attention to the reactions and responses of the resident. Recent research indicates, however, that people with very severe dementia may still retain a degree of awareness. If care staff can be trained to observe the signs of awareness, this should help them to increase their sensitivity to the needs of the resident and to enhance their care practice. Training for care staff that includes both information provision and ongoing support for implementing new skills can be very effective in improving resident well-being. In this study we aim to develop a measure that staff can use to help them observe subtle signs of awareness, to provide staff with training and support in using this measure, and to evaluate the effects on resident quality of life and on staff attitudes and practices. In developing the measure we will use as a starting-point a similar measure developed for people with severe brain injury, and we will hold focus groups for carers to establish how the measure should be initially adapted. We will then use the measure to observe residents? behaviour and responses, and refine it accordingly. Finally we will carry out an intervention study comparing homes where staff receive training and support in using the new measure with homes where residents simply receive their usual care. We expect to see improvements in resident quality of life and staff attitudes and practice in the homes where staff received training, but not in the homes where residents received usual care. The information we gain from this initial study will allow us to develop a definitive trial of the intervention that will provide sound evidence for practitioners and policy-makers. In the meantime, the findings will influence training provision for care staff, and the new measure of awareness in people with severe dementia will be useful for both practitioners and researchers.

Quality of residential care for people with severe dementia is poor and in urgent need of improvement. One reason for this may be the assumption that people with severe dementia are unaware of their surroundings and of what is happening to them. However, there is converging evidence to suggest that global assumptions of unawareness are inappropriate. This trial platform study builds on this evidence, aiming to assist care staff in perceiving and responding to subtle signs of awareness and thus enhance their practice. The study will be conducted in three stages. Initially, a measure of awareness in severe dementia will be developed. In Stage One, two focus groups and an expert panel will contribute to item and scale development, modifying the content and format of a measure designed to identify signs of awareness in people with very severe brain injury (the WHIM). In Stage Two observational data will be used to further develop the measure. Working in four care homes, we will recruit 40 individuals with severe dementia who have no, or very limited, verbal communication. Data on inter-rater reliability and frequency of all items and exploratory factor analysis will be used to identify items to be retained. Test-retest and inter-rater reliability for the new measure will be calculated. Correlations with scores for well-being and behaviour and with proxy ratings of quality of life will provide an indication of concurrent validity. In Stage Three the new measure will be used in a pilot single blind cluster randomised trial. Eight care homes will participate, with 10 residents recruited in each giving a total sample of 80 people with severe dementia. Homes will be randomised to intervention or usual care conditions. In the intervention condition, staff will receive training in using the new measure and will undertake observations of designated residents. For residents with dementia, outcomes will be assessed in terms of change from baseline in scores for behaviour, well-being and quality of life. For care staff, outcomes will be assessed in terms of change from baseline in scores for attitudes, care practice, and well-being. The results will inform the design of the definitive trial. A major output will be a reliable and valid measure of awareness in people with severe dementia. Findings will be incorporated into training provision for care staff.