Publications

Published Papers

Clare, L., Wu, Y.-T., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Quinn, C., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000286 (open access)

Clare, L., Wu, Y.-T., Quinn, C., Jones, I.R., Victor, C.R., Nelis, S.M., Martyr, A., Litherland, R., Pickett, J.A., Hindle, J.V., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Rusted, J.M., Thom, J.M., Lamont, R.A., Henderson, C., Rippon, I., Hillman, A., Matthews, F.E., & On behalf of the IDEAL study team. (2018). A comprehensive model of factors associated with capability to "live well" for family caregivers of people living with mild-to-moderate dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders. Advance online publication. doi: 10.1097/WAD.0000000000000285 (open access)

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, 32, 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

Oyebode, J.R., Pini, S., Ingleson, E., Megson, M., Horton, M., Clare, L., Al-Janabi, H., Brayne, C., & Wright, P. (2018). Development of an item pool for a needs-based measure of quality of life of carers of a family member with dementia. The Patient - Patient-Centered Outcomes Research. Advance online publication. doi: 10.1007/s40271-018-0334-4

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. Advance online publication. doi: 10.1002/gps.4998 click here to read a lay summary

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(2), 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. Winter, Issue 20, p.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 (pp. 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(1), 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, p.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, p. 2.

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

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