A comprehensive profile of awareness in early-stage dementia

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

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Publications

10 25 50
 
Description Scientific impact derives from provision of enhanced theoretical understanding, development of new or improved assessment methods, and communication of robust evidence that will help to shape future research in this area. We have: • Presented an accessible conceptual framework to improve clarity in the design and conduct of awareness research (Clare et al., submitted 1). • Applied our framework to severe dementia (Clare, 2010). • Developed improved methods for scoring discrepancy measures (Clare, Whitaker & Nelis, 2010). • Produced the first set of normative data for a memory awareness measure (Clare, Whitaker & Nelis, 2010). • Developed novel methods for assessment of implicit awareness and indirect assessment of explicit awareness (Martyr et al., 2010; Nelis et al., submitted 1). • Used cluster analysis to identify sub-groups of participants according to level of awareness (Clare et al., submitted 2) • Provided evidence to support the application of a biopsychosocial understanding of awareness (Clare et al., submitted 3). • Provided robust evidence regarding the association between awareness and quality of life. • Reported one of few longitudinal investigations of awareness, demonstrating that the trajectory of awareness over time is not directly related to dementia severity (Clare et al., submitted 4). • Contributed the first detailed examination of awareness of socio-emotional functioning in dementia (Nelis et al., submitted 2). • Reported one of the first explorations of awareness in MCI (Roberts, Clare & Woods, 2009). • Reported one of the first cross-sectional and longitudinal explorations of dyadic relationship quality from the perspective of both PwD and carer (Clare et al, 2012).
First Year Of Impact 2009
Sector Healthcare,Other
Impact Types Societal

 
Description Alzheimer's Society Clinical Training Partnership
Amount £225,000 (GBP)
Funding ID AS-CP-17-001 
Organisation Alzheimer's Society 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2018 
End 09/2021
 
Title Memory Awareness Rating Scale (MARS) - revised version 
Description Memory Awareness Rating Scale (MARS) - revised version 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2019 
Provided To Others? Yes  
Impact The measure has been used in research 
URL https://medicine.exeter.ac.uk/reach/publications/
 
Title Representations and Adjustment to Dementia Index 
Description Representations and Adjustment to Dementia Index 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2018 
Provided To Others? Yes  
Impact This measure has been used in research 
URL https://medicine.exeter.ac.uk/reach/publications/
 
Description NEURODEM Cymru Conference 2009 Robinson 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Robinson, J.U., Clare, L., Marková, I., Woods, R.T., Morris, R.G., Roth, I., Nelis, S.M. & Martyr, A. (2009, July). An emotional Stroop task in people with dementia: increased sensitivity to memory-related words. Paper presented at the NEURODEM Cymru Autumn Conference, Cardiff.

Discussion about new methodology
Year(s) Of Engagement Activity 2009
 
Description Awareness KeyNote Annual IPA Conference 2009 
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 Clare, L. (2009) I don't do like I used to do? : using IPA to explore the subjective experience of living with dementia

Knowledge exchange
Year(s) Of Engagement Activity 2009
 
Description Awareness in early stage dementia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact 25 people attended. Part of a North West Wales NHS Trust mental older adult specialist interest seminar series. Seminar held at Ysbyty Gwynedd, Bangor. Informed local practitioners.


N/A
Year(s) Of Engagement Activity 2009
 
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.

-
Year(s) Of Engagement Activity 2015
URL http://www.neurodemcymru.org/annual-conference.php.en
 
Description MIDAS 2009 NHS Trust Nelis 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Nelis S.M. & Clare, L. (2009, June). Awareness in early stage dementia. Presentation at the North West Wales NHS Trust Mental Older Adult Specialist Interest Seminar Series. Ysybty Gwynedd, Bangor. UK.

N/A
Year(s) Of Engagement Activity 2009
 
Description MIDAS BNS 2011 Morris 
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 Morris, R. G., Clare, L., Nelis, S.M., Martyr, A., Marková, I. Roth, I., Woods, R. T. & C.J. Whitaker C.J. (2011, November). Neuropsychological correlates of awareness of memory dysfunction in early-stage Alzheimer's disease and vascular dementia. Paper presented at The British Neuropsychological Society Autumn Meeting, London.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS BPS Training Day 2011 Clare 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare, L. (2011, April). Psychosocial influences on awareness in dementia. Workshop: Attention and Awareness: Neuropsychological and Neuropsychiatric Perspectives. British Psychological Society post-qualification training day. London.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS BPS Training Day 2011 Markova 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Markova, I. (2011, April). A psychiatric perspective on objects of awareness. Workshop: Attention and Awareness: Neuropsychological and Neuropsychiatric Perspectives. British Psychological Society post-qualification training day. London.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS BPS Training Day 2011 Morris 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Morris, R.G. (2011, April). Neurocognitive models of awareness and methods of assessment. Workshop: Attention and Awareness: Neuropsychological and Neuropsychiatric Perspectives. British Psychological Society post-qualification training day. London.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS Clare BPS Nov 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Keynote address by Prof. Linda Clare 'Awareness in dementia'
British Psychological Society Division of Neuropsychology Annual Conference, London, 18 November 2016
Year(s) Of Engagement Activity 2016
 
Description MIDAS Clare Trinity 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Invited address by Prof. Linda Clare 'Awareness in dementia'
Trinity College Dublin, Festschrift for Professor Ian Robertson, 2 December 2016.
Year(s) Of Engagement Activity 2016
 
Description MIDAS Dementia: A National Symposium 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Roth, I. (2013, May). A comprehensive profile of awareness in early stage dementia - the MIDAS project. Paper presented at Dementia - A National Symposium, Milton Keynes, UK.

Disseminate evidence from the MIDAS study
Year(s) Of Engagement Activity 2013
 
Description MIDAS Devon Memory Service 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presenatation by Prof. Linda Clare 'Awareness in dementia'
Devon Memory Service, Royal Devon & Exeter Hospital, Exeter, 19 December 2016.
Year(s) Of Engagement Activity 2016
 
Description MIDAS GSA 2007 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Clare, L., Nelis, S. van Paasschen, J. (2007, November). Do people with early-stage dementia reliably rate their own memory functioning and performance? Paper presented at the Gerontological Society of America Annual Conference, San Francisco, CA.

Preliminary data used to make funding application
Year(s) Of Engagement Activity Pre-2006,2007
 
Description MIDAS GSA 2009 Martyr 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A., Nelis, S.M., Clare, L., Marková, I.S., Morris, R., Roth, I., & Woods, R.T. (2009, November). Utilising the emotional Stroop task to investigate implicit awareness of memory difficulties in people with dementia and their caregivers. Poster presentation at the Gerontological Society of America Annual Conference. Atlanta, GA.

New development in measurement
Year(s) Of Engagement Activity 2009
 
Description MIDAS GSA 2009 Nelis 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nelis, S.M., Martyr, A., Clare, L., Roberts, J., Marková, I.S., Morris, R., Roth, I., & Woods, R.T. (2009, November). The potential utility of vignettes as an indirect measure of awareness in early stage dementia. Poster presentation at the Gerontological Society of America Annual Conference. Atlanta, GA.

Plans for future related activity
Year(s) Of Engagement Activity 2009
 
Description MIDAS GSA 2009 Roberts 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Roberts, J., Clare, L., Nelis, S.M. &; Martyr, A. (2009, November). The reliability of self reported functional ability in Mild Cognitive Impairment. Poster presentation at the Gerontological Society of America Annual Conference. Atlanta, GA.

Work led to to PhD
Year(s) Of Engagement Activity 2009
 
Description MIDAS GSA 2010 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nelis, S.M., Clare, L., Martyr, A., Marková, I., Roth, I., Woods, R.T., Whitaker, C. & Morris, R.G. (2010, November). Awareness of social and emotional functioning in early-stage dementia and implications for caregivers. Paper presented at The Gerontology Society of America Annual Conference, New Orleans

Led to publication
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2010 Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R.T., Whitaker, C. & R.G. Morris. (2010, November).Testing a Biopsychosocial Model of Awareness in Early-stage Dementia. Paper presented at The Gerontology Society of America Annual Conference, New Orleans.

Symposium
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2010 Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R.T. & Morris, R.G. (2010, November). Perceptions of relationship quality in people with dementia and their spouse caregivers. Paper presented at The Gerontology Society of America Annual Conference, New Orleans

N/A
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2010 Martyr 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A., Clare, L., Nelis, S.M., Robinson, J.U., Roberts, J., Marková, I., Roth, I., Woods, R.T., Whitaker, C. & Morris, R.G. (2010, November). Memory-related words in people with dementia and their caregivers: investigating the implicit awareness system. Paper presented at The Gerontology Society of America Annual Conference, New Orleans.

symposium
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2010 Morris 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Morris, R. G., Clare, L., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R. T. & Whitaker, C. (2010, November). Neuropsychological correlates of awareness of cognitive or behavioural dysfunction in early-stage dementia. Paper presented at The Gerontology Society of America Annual Conference, New Orleans

Plans for future activity
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2010 Nelis 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nelis, S.M., Clare, L., Martyr, A., Marková, I., Roth, I., Woods, R.T., Whitaker, C. & Morris, R.G. (2010, November). Awareness of social and emotional functioning in early-stage dementia and implications for caregivers. Paper presented at The Gerontology Society of America Annual Conference, New Orleans

Symposium
Year(s) Of Engagement Activity 2010
 
Description MIDAS GSA 2011 Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Whitaker, C.J., Nelis, S.M, Martyr, A., Marková, I. Roth, I., Woods, R.T. & Morris, R.G. (2011, November). Self-concept in early stage dementia: profile, course, correlates, predictors, and implications for quality of life. Paper presented at The Gerontology Society of America Annual Conference, Boston.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS GSA 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S.M., Martyr, A., Marková, I., Roth, I., Woods, R.T., Whitaker, C. & Morris, R.G. (2013, Nov.). Quality of Life in early-stage dementia: Longitudinal trajectories and predictors of change. Paper presented at The Gerontology Society of America Annual Conference, New Orleans

A paper was subsequently published on the topic
Year(s) Of Engagement Activity 2013
 
Description MIDAS ICOM 2011 Clare 
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., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R.T., Whitaker, C.J. & Morris, R.G. (2011, July). Cognitive, Psychological and Social Influences on Awareness of Memory Impairment in Early-stage Dementia. Paper presented at The International Conference on Memory, York.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS ICOM 2011 Martyr 
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 Martyr, A., Clare, L., Nelis, S.M., Robinson, J., Roberts, J., Marková, I., Roth, I., Woods, R.T., Whitaker, C.J. & Morris, R.G. (2011, July). The Emotional Stroop Effect for Memory-related Words in People with Dementia and their Caregivers and Implicit Knowledge of Memory Disorder. Paper presented at The International Conference on Memory, York.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS ICOM 2011 Morris 
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 Morris, R. G., Clare, L., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R. T. & Whitaker, C.J. (2011, July). Neuropsychological Correlates of Awareness of Memory Dysfunction in Early-stage Alzheimer's disease and vascular dementia. Paper presented at The International Conference on Memory, York.

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS ICOM 2011 Nelis 
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 Nelis, S.M, Whitaker, C.J. & Clare, L. (2011, July). Appraisal of Memory Functioning and Memory Performance in Healthy Ageing and Early-stage Alzheimer's Disease. Paper presented at The International Conference on Memory, York

N/A
Year(s) Of Engagement Activity 2011
 
Description MIDAS INS 2008 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Nelis, S.M., Martyr, A., Marková, I.S., Morris, R., Roth, I., and Woods, R.T. (2008, July). Does executive function relate to emotional response and well-being in early stage Alzheimer's disease? Paper presented at the International Neuropsychological Society Conference, Buenos Aires, Argentina.

Plans made for future activity
Year(s) Of Engagement Activity 2008
 
Description MIDAS INS 2010 Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Clare, L., Morris, R. G., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R. T. & Whitaker, C. (2010, February) Testing a biopsychosocial model of awareness in early-stage Alzheimer's disease. Paper presented at the International Neuropsychological Society Annual Meeting, Acapulco, Mexico.

N/A
Year(s) Of Engagement Activity 2010
 
Description MIDAS INS 2010 Martyr 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A., Nelis, S.M., Clare, L., Marková, I.S., Morris, R., Roth, I., Woods, R.T. (2010, February) Verbal fluency and impaired functional ability in people with dementia. Poster presentation at the International Neuropsychological Society Annual Meeting, Acapulco, Mexico.

Discussion led to plans for PhD
Year(s) Of Engagement Activity 2010
 
Description MIDAS INS 2010 Martyr 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Martyr, A., Nelis, S.M., Clare, L., Marková, I.S., Morris, R., Roth, I., & Woods, R.T. (2010, February) Verbal fluency and impaired functional ability in people with dementia. Poster presentation at the International Neuropsychological Society Annual Meeting, Acapulco, Mexico.

A publication and PhD was based on this poster presentation
Year(s) Of Engagement Activity 2010
 
Description MIDAS INS 2010 Morris 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Morris, R. G., Clare, L., Nelis, S., Martyr, A., Marková, I., Roth, I., Woods, R. T. & Whitaker, C. (2010, February) Neuropsychological correlates of awareness of cognitive or behavioural dysfunction in early dementia. Paper presented at the International Neuropsychological Society Annual Meeting, Acapulco, Mexico.

N/A
Year(s) Of Engagement Activity 2010
 
Description MIDAS INS Poland 2010 Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Clare, L., Whitaker, C.; Nelis, S. (2010, July). Appraisal of memory functioning and memory performance in healthy ageing and early-stage Alzheimer's disease. Poster presented at the International Neuropsychological Society Conference, Krakow, Poland.

Share information
Year(s) Of Engagement Activity 2010
 
Description MIDAS IPA 2009 Roberts 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Roberts, J. (2009, Sept). When it's not dementia: The experience of living with Mild Cognitive Impairment. Paper presented at the Annual IPA Conference, Queens University, Belfast, UK.

N/A
Year(s) Of Engagement Activity 2009
 
Description MIDAS Premier Congress National France Clare 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Clare, L. (2008, April). Awareness in dementia: concepts and evidence. Insight dans les troubles psychiatriques et neurologiques. Paper presented at the Premier congrès national. Poitiers, France

Requests for additional information
Year(s) Of Engagement Activity 2008
 
Description MIDAS UKDemCong 2009 J.Woods 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation workshop facilitator
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Woods, J., Woods, R.T. (2009, November). Differences in awareness: A major threat to relationship-centred care? Presentation at the UK Dementia Congress, Harrogate, UK.

N/A
Year(s) Of Engagement Activity 2009
 
Description Neuroimaging Skills for Dementia, Dublin, 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. Neuroimaging Skills for Dementia. University College Dublin, February.


Dissemination to other professionals and academics about the project
Year(s) Of Engagement Activity 2014