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

Lead Research Organisation: Bangor University
Department Name: Sch of Psychology

Abstract

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.

Technical Summary

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.
 
Title Lost in the Neuron Forest 
Description A theatre production, involving audience participation, developed by the Bread and Goose Theatre company, raising public awareness of cognitive impairment and dementia. Scientific input was provided by Prof. Bob Woods 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2014 
Impact The production toured England and Wales in the autumn of 2014, receiving good reviews and drawing good audiences. An associated exhibition 'Memory Store' also generated interest. 
URL http://www.breadandgoose.co.uk/Lost_In_The_Neuron_Forest.html
 
Description AwareCare Neurodem Annual Conference 2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk sparked questions and discussion afterwards

N/A
Year(s) Of Engagement Activity 2012
 
Description AwareCare How to implement clinical research in Nursing Homes? Alzheimers' Association International Conference, July 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact R. Woods (2014). How to implement clinical research in nursing homes? Alzheimer's and Dementia: The Journal of the Alzheimer's Association
Volume 10, Issue 4, Supplement, Page P156,

Generated discussion amongst the audience and resulted in the abstract being published.
Year(s) Of Engagement Activity 2014
 
Description AwareCare NEURODEM 2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2012). AwareCare: an awareness-based intervention to improve quality of life for residents with severe dementia. Paper presented at the NEURODEM Conference, Cardiff, UK.

Greater awareness of the study
Year(s) Of Engagement Activity 2012
 
Description AwareCare UK Dementia Congress 2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Jelley, H., Clare, L., Quinn, C., Woods, R. T., Whitaker, R., Wilson, B., & Downs, M. (2010, November). Observing signs of awareness in severe dementia: Three case studies. Poster presented at the UK Dementia Congress, Bournemouth, UK.

Greater awareness of the study
Year(s) Of Engagement Activity 2010
 
Description Beyond Frailty: the Future of Old Age, Amsterdam, 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2014). Awareness, self-concept and the experience of dementia: foundations of a psychologically-minded approach to care and support. Beyond Frailty: the Future of Old Age. Symposium ter gelegenheid van het 25-jarig bestaan van de opleiding tot specialist ouderengeneeskunde bij GERION. VUMC, Amsterdam, September.

Dissemination to other professionals and academics about the study
Year(s) Of Engagement Activity 2014
 
Description Clare (2015) NEURODEM Cymru North Wales Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Clare, L. (2015, Feb.). Awareness, self-concept and the experience of dementia: foundations of a psychologically-informed approach to care and support. Presentation at the NEURODEM Cymru North Wales Conference, Bangor University.

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Year(s) Of Engagement Activity 2015
URL http://www.neurodemcymru.org/annual-conference.php.en
 
Description IDEAL GW4 Aging and Dementia, Bristol 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2015, Jan.). Living well with dementia: the IDEAL study. Poster presentation at the GW4 Aging and Dementia (GW4AD) Consortium Conference, Bristol.

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Year(s) Of Engagement Activity 2015
 
Description Martyr (2015) Institute of Mental Health, Nottingham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Martyr, A. (2015, May). Centre for Research in Ageing and Cognitive Health. Presentation at the academic centres for psychosocial research in dementia, The Institute of Mental Health, University of Nottingham.

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Year(s) Of Engagement Activity 2015
 
Description NISCHR CRC North Wales Collaborators Meeting, Bangor, 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2014). Research in ageing and cognitive health: promoting well-being in later life and dementia. NISCHR CRC North Wales Collaborators Meeting, Bangor, May

Dissemination to peers and research network staff about the project.
Year(s) Of Engagement Activity 2014
 
Description Public lecture (Llandudno) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Bob Woods has presented a public lecture on the theme of dementia at Venue Cymru, Llandudno as part of a lecture series organised by Bangor University on Health and Well-being over 4 consecutive years, with audiences from 125 to 300 people - family carers, practitioners, volunteers, general public. Each has led to considerable discussion and interest.

A number of care homes have followed up with further enquiries.
Year(s) Of Engagement Activity 2011,2012,2013,2014
 
Description Research into practice, Alzheimer's Society 2014 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This was a workshop hosted by the Alzheimer's Society and the Healthcare management trust. The talks contributed to a discussion on research in care homes and which specific areas should we focus research on. The audience was a diverse mixture of researchers, people working in care homes, architects etc.

The Alzheimer's society would use this information to influence future research funding.
Year(s) Of Engagement Activity 2014