Publications

Published Papers:

• Clarke, R., Farina, N., Chen, H.L., & Rusted, J.M. in collaboration with the IDEAL programme team. (2021). Quality of life and wellbeing of carers of people with dementia: are there differences between working and non-working carers? Results from the IDEAL Programme. Journal of Applied Gerontology, 40, 752-762. doi: 10.1177/0733464820917861 click here to read a lay summary

  Sabatini, S., Ukoumunne, O.C., Martyr, A., Ballard, C., Lamont, R.A., Collins, R., Pentecost, C., Quinn, C., Thom, J.M., & Clare, L., on behalf of the IDEAL programme team. (2021). Relationship between self-perceptions of aging and ‘living well’ among people with mild-to-moderate dementia: Findings from the IDEAL Programme. Archives of Gerontology and Geriatrics, 94, 104328. doi: 10.1016/j.archger.2020.104328. click here to read a lay summary

• Wu, Y.-T., Clare, L., & Matthews, F.E. on behalf of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study team (2021). Relationship between depressive symptoms and capability to live well in people with dementia and their carers: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Aging & Mental Health, 25, 38-45. doi: 10.1080/13607863.2019.1671316 click here to read a lay summary

Associated Publications:

• Horton, M.C., Oyebode, J., Clare, L., Megson, M., Shearsmith, L., Brayne, C., Kind, P., Hoare, Z., Al Janabi, H., Hewison, V., Tennant, A., & Wright, P. (2021). Measuring quality of life in carers of people with dementia: development and psychometric evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR). The Gerontologist, 61, e1-e11. doi: 10.1093/geront/gnz136/5613258 (open access)

Report:

• ‌O'Rourke, G., Pentecost, C., van den Heuvel, E., Victor, C., Quinn, C., Hillman, A., Litherland, R., & Clare, L. (2021). Living with dementia during the COVID-19 pandemic: coping and support needs of community-dwelling people with dementia and their family carers. Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI). University of Manchester: Older People and Frailty Policy Research Group.

Published Papers:

• Clare, L., Martyr, A., Henderson, C., Gamble, L.D., Matthews, F.E., Quinn, C., Nelis, S.M., Rusted, J., Thom, J., Knapp, M., Hart, N., & Victor, C. (2020). Living alone with mild-to-moderate dementia: findings from the IDEAL cohort. Journal of Alzheimer's Disease, 78, 1207-1216. doi: 10.3233/JAD-200638 click here to read a lay summary

• Clare, L., Martyr, A., Morris, R.G., & Tippett, L.J. (2020). Discontinuity in the subjective experience of self among people with mild-to-moderate dementia is associated with poorer psychological health: findings from the IDEAL cohort. Journal of Alzheimer's Disease, 77, 127-138. doi: 10.3233/JAD-200407 (open access) click here to read a lay summary

• Hillman, A., Jones, I.R., Quinn, C., Nelis, S.M., Lamont, R.A., & Clare, L. (2020). 'All the world's a stage': accounting for the dementia experience - insights from the IDEAL programme. Qualitative Research, 20, 703-720. doi: 10.1177/1468794119893607 click here to read a lay summary

• Lamont, R.A., Nelis, S.M., Quinn, C., Martyr, A., Rippon, I., Kopelman, M.D., Hindle, J.V., Jones, R.W., Litherland, R., & Clare, L. on behalf of the IDEAL study team. (2020). Psychological predictors of 'living well' with dementia: findings from the IDEAL study. Ageing & Mental Health, 24, 956-964. doi: 10.1080/13607863.2019.1566811 (open access) click here to read a lay summary

• Quinn, C., Nelis, S.M., Martyr, A., Morris, R.G., Victor, C., & Clare, L. on behalf of the IDEAL study team. (2020). Caregiver influences on 'living well' for people with dementia: findings from the IDEAL study. Aging & Mental Health, 24, 1505-1513. doi: 10.1080/13607863.2019.1602590 (open access) click here to read a lay summary read the blog on this article here

• Rippon, I., Quinn, C., Martyr, A., Morris, R.G., Nelis, S.M., Jones, I.R., Victor, C.R., & Clare, L. on behalf of the IDEAL programme team. (2020). The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study. Aging & Mental Health, 24, 1411-1420. doi: 10.1080/13607863.2019.1617238 (open access) click here to read a lay summary read the blog on this article here

• Victor, C. R., Rippon, I., Nelis, S. M., Martyr, A., Litherland, R., Pickett, J. A., Hart, N., Henley, J., Matthews, F.E., & Clare, L., on behalf of the IDEAL programme team. (2020). Prevalence and determinants of loneliness in people living with dementia: findings from the IDEAL programme. International Journal of Geriatric Psychiatry, 35, 851-858. doi: 10.1002/gps.5305 (open access) click here to read a lay summary

• Wu, Y.-T., Nelis, S.M., Quinn, C., Martyr, A., Jones, I.R., Victor, C.R., Knapp, M., Henderson, C., Hindle, J.V., Jones, R.W., Kopelman, M.D., Morris, R.G., Pickett, J.A., Rusted, J.M., Thom, J.M., Litherland, R., Matthews, F.E., Clare, L., & on behalf of the IDEAL programme team. (2020). Factors associated with self- and informant ratings of quality of life, wellbeing and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Age and Ageing, 49, 446-452. doi: 10.1093/ageing/afz177 click here to read a lay summary

Published Abstracts:

• Choi, A., Ballard, C., Martyr, A., Collins, R., Morris, R.G., & Clare, L. (2020). Impact of psychosis on quality of life and well-being in dementia. Alzheimer's & Dementia, 16, e045871. doi: 10.1002/alz.045871

• Matthews, F.E., Gamble, L.D., & Clare, L. on behalf of the IDEAL Study Research Group. (2020). Longitudinal factors associated with living well outcomes in people with mild-to-moderate dementia: Initial findings from the IDEAL cohort. Alzheimer's & Dementia, 16, e043255. doi: 10.1002/alz.043255

• Rippon, I., Victor, C.R., Quinn, C., Martyr, A., Matthews, F.E., & Clare, L. (2020). Loneliness and isolation among people with dementia and their carers: Prevalence, risk factors and a dyadic analysis. Alzheimer's & Dementia, 16, e041922. doi: 10.1002/alz.041922

• van den Heuvel, E.A., Victor, C.R., & Clare, L. (2020). Improving the Experience of Dementia and Enhancing Active Life (IDEAL): Investigating the perspectives of people from ethnic minority communities. Alzheimer's & Dementia, 16, e037479. doi: 10.1002/alz.037479

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. (2019). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders, 33, 36-41. doi: 10.1097/WAD.0000000000000286 (open access) click here to read a lay summary

• 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. (2019). 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, 33, 29-35. doi: 10.1097/WAD.0000000000000285 (open access) click here to read a lay summary

• Henderson, C., Knapp, M., Nelis, S.M., Quinn, C., Martyr, A., Wu, Y.-T., Jones, I.R., Victor, C.R., Pickett, J.A., Hindle, J.V., Jones, R.W., Kopelman, M.D., Matthews, F.E., Morris, R.G., Rusted, J., Thom, J.M., & Clare, L., on behalf of the IDEAL programme team. (2019). Use and costs of services and unpaid care for people with mild-to-moderate dementia: baseline results from the IDEAL cohort study. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 5, 685-696. doi: 10.1016/j.trci.2019.09.012 (open access) click here to read a lay summary

• Lamont, R.A., Quinn, C., Nelis, S.M., Martyr, A., Rusted, J.M., Hindle, J.V., Longdon, B., & Clare, L. on behalf of the IDEAL study team. (2019). Self-esteem, self-efficacy and optimism as psychological resources among family caregivers of people with dementia: findings from the IDEAL study. International Psychogeriatrics, 31, 1259-1266. doi: 10.1017/S1041610219001236 click here to read a lay summary

• Martyr, A., Nelis, S.M., Quinn, C., Rusted, J.M., Morris, R.G., Clare, L., & on behalf of the IDEAL study programme. (2019). The relationship between perceived functional difficulties and the ability to live well with mild-to-moderate dementia: findings from the IDEAL programme. International Journal of Geriatric Psychiatry, 34, 1251-1261. doi: 10.1002/gps.5128 (open access) click here to read a lay summary

• 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. (2019). The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study. Age and Ageing, 48, 361-367. doi: 10.1093/ageing/afy155 (open access) click here to read a lay summary read the blog on this article here

• Quinn, C., Jones, I.R., Martyr, A., Nelis, S.M., Morris, R.G., Clare, L., & on behalf of the IDEAL study team. (2019). Caregivers' beliefs about dementia: findings from the IDEAL study. Psychology and Health, 34, 1214-1230. doi: 10.1080/08870446.2019.1597098 (open access) click here to read a lay summary

• Quinn, C., Nelis, S.M., Martyr, A., Victor, C., Morris, R.G., & Clare, L., on behalf of the IDEAL study team. (2019). Influence of positive and negative dimensions of dementia caregiving on caregiver well-being and satisfaction with life: Findings from the IDEAL study. American Journal of Geriatric Psychiatry, 27, 838-848. doi: 10.1016/j.jagp.2019.02.005 (open access) click here to read a lay summary read the blog on this article here

Associated Publications:

• Oyebode, J.R., Pini, S., Ingleson, E., Megson, M., Horton, M., Clare, L., Al-Janabi, H., Brayne, C., & Wright, P. (2019). 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, 12, 125-136. doi: 10.1007/s40271-018-0334-4

Published Abstracts:

• Clare, L., Martyr, A., Quinn, C., Victor, C., & Matthews, F. (2019). Living alone with dementia: findings from the IDEAL cohort. Innovation in Aging, 3, S40. doi: 10.1093/geroni/igz038.155

• Rippon, I., Quinn, C., Martyr, A., Victor, C., Mathews, F., & Clare, L. (2019). Prevalence of loneliness and isolation among people with dementia and their carers. Innovation in Aging, 3, S40-S40. doi: 10.1093/geroni/igz038.156

• Victor, C., & Fauth, E.B. (2019). Loneliness, isolation, and living alone among people with dementia and their carers: insights from the IDEAL study. Innovation in Aging, 3, S39-S39. doi: 10.1093/geroni/igz038.153

• Victor, C., Rippon, I., Martyr, A., Mathews, F., & Clare, L. (2019). How lonely and isolated are older people with dementia and their carers: a dyadic analysis. Innovation in Aging, 3, S39-S40. doi: 10.1093/geroni/igz038.154

IDEAL-2 protocol:

• 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)

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., 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

• 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

• 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

Associated Publications:

• 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

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. (2017). 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: 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/gnv377.04

IDEAL 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)

Associated Published Abstract:

• Martyr, A., & Clare, L. (2014). Awareness of functional ability in people with dementia: diagnostic accuracy and clinical implications. Alzheimer's & Dementia, 10, P363-P364. doi: 10.1016/j.jalz.2014.05.413

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.