Publications

Published Papers:

• Hillman, A., Jones, I.R., Quinn, C., Nelis, S.M., & Clare, L. (2018). Dualities of dementia illness narratives and their role in a narrative economy. Sociology of Health & Illness, 40, 874-891. doi: 10.1111/1467-9566.12729 (open access)

• Litherland, R., Burton, J., Cheeseman, M., Campbell, D., Hawkins, M., Hawkins, T., Oliver, K., Scott, D., Ward, J., Nelis, S.M., Quinn, C., Victor, C., & Clare, L. (2018). Reflections on PPI from the 'Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study. Dementia, 17, 1035-1044. doi: 10.1177/1471301218789309 click here to read a lay summary

• Martyr, A., & Clare, L. (2018). Awareness of functional ability in people with early‐stage dementia. International Journal of Geriatric Psychiatry, 33, 31-38. doi: 10.1002/gps.4664

• Martyr, A., Nelis, S.M., Quinn, C., Wu, Y.-T., Lamont, R.A., Henderson, C., Clarke, R., Hindle, J.V., Thom, J.M., Jones, I.R., Morris, R.G., Rusted, J.M., Victor, C.R., & Clare, L. (2018). Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia. Psychological Medicine, 48, 2130-2139. doi: 10.1017/S0033291718000405 (open access) click here to read a lay summary infographic

• Nelis, S.M., Wu, Y.-T., Matthews, F.E., Martyr, A., Quinn, C., Rippon, I., Rusted, J., Thom, J.M., Kopelman, M.D., Hindle, J.V., Jones, R.W., & Clare, L. (2018). The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study. Age and Ageing. Advance online publication. doi: 10.1093/ageing/afy155 (open access) click here to read a lay summary Read the blog on this article here

• Quinn, C., Morris, R.G., & Clare, L. (2018). Beliefs about dementia: development and validation of the representations and adjustment to dementia index (RADIX). The American Journal of Geriatric Psychiatry, 26, 680-689. doi: 10.1016/j.jagp.2018.02.004 (open access) click here to read a lay summary

• Silarova, B., Nelis, S.M., Ashworth, R.M., Ballard, C., Bieńkiewicz, M., Henderson, C., Hillman, A., Hindle, J.V., Hughes, J.C., Lamont, R.A., Litherland, R., Jones, I.R., Jones, R.W., Knapp, M., Kotting, P., Martyr, A., Matthews, F.E., Morris, R.G., Quinn, C., Regan, J., Rusted, J.M., van den Heuvel, E.A., Victor, C.R., Wu, Y.-T., & Clare, L. (2018). Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life. BMC Public Health, 18, 1214. doi: 10.1186/s12889-018-6129-7 (open access)

• Wu, Y.-T., Clare, L., Hindle, J.V., Nelis, S.M., Martyr, A., Matthews, F.E., & on behalf of the IDEAL study team. (2018). Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study. BMC Medicine, 16, 140. doi: 10.1186/s12916-018-1135-2 (open access) click here to read a lay summary

• Wu, Y.-T., Clare, L., Jones, I.R., Martyr, A., Nelis, S.M., Quinn, C., Victor, C.R., Lamont, R.A., Rippon, I., Matthews, F.E., & On behalf of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study. (2018). Inequalities in living well with dementia – the impact of deprivation on wellbeing, quality of life and life satisfaction: results from the Improving the experience of Dementia and Enhancing Active Life study. International Journal of Geriatric Psychiatry, 33, 1736-1742. doi: 10.1002/gps.4998 click here to read a lay summary

Published Abstracts:

• Clare, L., Wu, Y.-T., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Quinn, C., Litherland, R., Pickett, J., Hindle, J.V., Jones, R.W., John Knapp, M.R., Kopelman, M., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., & Matthews, F. (2018). A comprehensive model of factors associated with subjective perceptions of living well with dementia: findings from the IDEAL study. Alzheimer's & Dementia, 14, P1422-P1423. doi: 10.1016/j.jalz.2018.06.2954

Published Papers:

• Clare, L. (2017). 'Living well with dementia has become a key focus of policy'. The Psychologist, 30, 66-69.

• Lamont, R. A., Nelis, S. M., Quinn, C., & Clare, L. (2017). Social support and attitudes to aging in later life. The International Journal of Aging and Human Development, 84, 109-125. doi: 10.1177/0091415016668351

• Quinn, C. (2017). Conducting interviews with people with dementia and their caregivers. SAGE Research Methods Cases. doi: 10.4135/9781526404855

• Quinn, C., Jones, I.R., & Clare, L. (2016). Illness representations in caregivers of people with dementia. Aging & Mental Health, 21, 553-561. doi: 10.1080/13607863.2015.1128882 (open access)

• Jones, I.R. (2017). Social class, dementia and the fourth age. Sociology of Health and Illness, 39(2), 303-317. doi: 10.1111/1467-9566.12520

Newsletters:

• Rippon, I (2017). Improving the experience of dementia and enhancing active life: living well with dementia - The IDEAL study. Ageing in Europe: The Newsletter of the Research Network on Ageing in Europe. 20, 4. 

Published Abstracts:

• Martyr, A., Nelis, S.M., Quinn, C., Wu, Y.-T., Lamont, R.A., Henderson, C., Clarke, R., Hindle, J.V., Jones, I.R., Morris, R.G., Rusted, J.M., Thom, J.M., Victor, C.R., & Clare, L. (2017) Living well with dementia: a systematic review and meta-analysis. Alzheimer's & Dementia, 13, Supplement, P1567–P1568. doi: https://doi.org/10.1016/j.jalz.2017.07.725

• Clarke, R., Chen, H.L., & Rusted, J.M. (2017). Exploring psychological well-being in working family carers. Alzheimer's & Dementia, 13, Supplement, P1164. doi: 10.1016/j.jalz.2017.06.1712

• Clare, L. (2017). Improving the experience of Dementia and Enhancing Active Life: early findings from the IDEAL cohort. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4933

• Clare, L., Nelis, S.M., Wu, Y.-T., Martyr, A., Knapp, M., Henderson, C., Lamont, R.A., & Matthews, F.E. (2017). Improving the experience of dementia and enhancing active life (the ideal study): cohort profile. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4934

• Hillman, A., Jones, I.R., Quinn, C., & Clare, L. (2017). Letting go of coherence: the challenges of representing dementia. Innovation in Aging, 1, 1345. doi: 10.1093/geroni/igx004.4937

• Jones, I.R., Hillman, A., Quinn, C., & Clare, L. (2017). Dualities of dementia accounts: biographical reconstruction and narrative economies. Innovation in Aging, 1, 1344-1345. doi: 10.1093/geroni/igx004.4936

• Martyr, A., Wu, Y., Morris, R., Hindle, J., Rusted, J., Thom, J., Clarke, R., & Clare, L. (2017). Factors associated with quality of life in dementia: a correlational meta-analysis. Innovation in Aging, 1, 1344. doi: 10.1093/geroni/igx004.4935

Published Papers:

• Clare, L., Quinn, C., Jones, I. R., & Woods, R. T. (2016). "I don’t think of it as an illness": illness representations in mild to moderate dementia. Journal of Alzheimer's Disease, 51, 139-150. doi: 10.3233/JAD-150794

Book Chapters:

• Quinn, C. (2016). Positive Experiences in Dementia Caregiving. In C. Clarke & E. Wolverson (Eds.). Positive Psychology Approaches to Dementia, 232-252. London: Jessica Kingsley Publishers.

Published Abstracts: 

• Victor, C.R., & Clare, L. (2015). Living well with dementia: preliminary insights from the IDEAL study. The Gerontologist, 55 (Suppl 2), 592-593. doi: 10.1093/geront/gnv306.01

• Clare, L., Quinn, C., Woods, R.T., & Jones, I.R. (2015). Understanding and adjusting to dementia: implications for how we talk to people about the condition. The Gerontologist, 55 (Suppl 2), 593. doi: 10.1093/geront/gnv306.03

• Morris, R.G., Martyr, A., Nelis, S.M., Markova, I.S., Roth, I., Woods, R.T., & Clare, L. (2015). Being less aware of functional decline may preserve emotional well-being in people with dementia. The Gerontologist, 55 (Suppl 2), 593. doi: 10.1093/geront/gnv306.04

• Victor, C.R., Pikhartova, J., & Woodbridge, R. (2015). Is loneliness a cause or consequence of dementia? The Gerontologist, 55 (Suppl 2), 593. doi: 10.1093/geront/gnv306.02

• Jones, I.R., Victor, C.R., & Clare, L. (2015). Capitals, assets and resources: a framework for understanding the lived experience of dementia. The Gerontologist, 55 (Suppl 2), 593-594. doi: 10.1093/geront/gnv306.05

• Jones, I.R. (2015). Social class, dementia, and the social imaginary of the fourth age. The Gerontologist, 55(Suppl 2), 742. doi:10.1093/geront/gnv377.01

IDEAL project protocol:

• Clare, L., Nelis, S.M., Quinn, C., Martyr, A., Henderson, C., Hindle, J.V., Jones, I.R., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Pickett, J.A., Rusted, J.M., Savitch, N.M., Thom, J.M., & Victor, C.R. (2014). Improving the experience of dementia and enhancing active life-living well with dementia: study protocol for the IDEAL study. Health and Quality of Life Outcomes, 12, 164. doi: 10.1186/s12955-014-0164-6. (PDF file, 475kb)

Associated Publications:

• Clare, L, Quinn, C, Hoare, Z, Whitaker, R, & Woods, R. (2014). Care staff and family member perspectives on quality of life in people with very severe dementia in long-term care: a cross-sectional study. Health and Quality of Life Outcomes, 12, 175. doi: 10.1186/s12955-014-0175-3.  (PDF file, 452kb)

Newsletters and Bulletins:

• Clare, L. (2014). Neuropsychology of older people workshop: assessment. The British Psychological Society, Division of Neuropsychology Newsletter, Summer, 3.

• Clare, L. & Nelis, S. on behalf of the IDEAL study team. (2014). Improving the experience of dementia and enhancing active life: the IDEAL study. FPOP Newsletter, 128 (October), 11-13.

• Jones, R. (2014). Improving the experience of dementia and enhancing active life: living with dementia - the IDEAL study. RICE Newsletter, Autumn, 38, 2.

• Morris, R. G. (2014). The IDEAL project: Improving our understanding of dementia. The British Psychological Society, Division of Neuropsychology Newsletter, 13.3, 5.

• Improving the Experience of Dementia and Enhancing Active Life: The IDEAL Study (2014). NEURODEM Cymru Research Participant Register (Rpr) Newsletter, Vol. 1. Issue 5, 5.

• Article 'IDEAL: how to ‘live well', June 2015, Living with Dementia, The Magazine of the Alzheimer’s Society, 23.