Publications
Published Papers
Clare, L., Martyr, A., Morris, R.G., & Tippett, L.J. (in press). 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 .
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
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
Victor, C. R., Rippon, I., Quinn, C., Nelis, S. M., Martyr, A., Hart, N., Lamont, R., & Clare, L., on behalf of the IDEAL programme team. (2020). The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme . Aging & Mental Health . Advance online publication. doi:10.1080/13607863.2020.1753014 (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 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) IDEAL use costs lay summary
Hillman, A., Jones, I.R., Quinn, C., Nelis, S.M., Lamont, R.A., & Clare, L. (2019). 'All the world's a stage': accounting for the dementia experience - insights from the IDEAL programme . Qualitative Research . Advance online publication. doi: 10.1177/1468794119893607
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. (2019). 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 . Advance online publication. doi:10.1093/geront/gnz136/5613258 (open access)
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 stud y. 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
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
Quinn, C., Nelis, S.M., Martyr, A., Morris, R.G., Victor, C., & Clare, L. on behalf of the IDEAL study team. (2019). Caregiver influences on 'living well' for people with dementia: findings from the IDEAL study . Aging & Mental Health. Advance online publication. doi: 10.1080/13607863.2019.1602590 (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
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. (2019). The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study . Aging & Mental Health . Advance online publication. doi:10.1080/13607863.2019.1617238 (open access) click here to read a lay summary read the blog on this article here
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., 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
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
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 & Dementi a, 14 , P1422-P1423. doi: 10.1016/j.jalz.2018.06.2954
Published Papers:
Newsletters: 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
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
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:
Book Chapters:
Published Abstracts:
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
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)
Associated Published Abstract:
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
Morris, R. G. (2014). The IDEAL project: Improving our understanding of dementia. The British Psychological Society, Division of Neuropsychology Newsletter , 13.3, 5.
