Publications

Published Papers:‌‌

Charlwood, C., & Clare, L. (2024). Doing dementia differently: A range of co-produced resources from the IDEAL programme. FPOP Bulletin: Psychology of Older People, 165(1), 23-27. doi: 10.53841/bpsfpop.2024.1.165.23

Clare, L., Gamble, L.D., Martyr, A., Henderson, C., Knapp, M., & Matthews, F.E. on behalf of the IDEAL study team. (2024). Living alone with mild-to-moderate dementia over a two-year period: longitudinal findings from the IDEAL cohort. The American Journal of Geriatric Psychiatry, 32(11), 1309-1321. doi: 10.1016/j.jagp.2024.05.012 (open access) 

Collins, R., Dawson, E., Pentecost, C., Stapley, S., Quinn, C., Charlwood, C., Allan, L., Victor, C., & Clare, L. (2024). Navigating the COVID-19 pandemic two years on: experiences of carers of people with dementia from the British IDEAL cohort. International Journal of Care and Caring, 8(4), 600-621. doi: 10.1332/239788223X16893442145108 

Collins, R., Martyr, A., Hunt, A., Quinn, C., Pentecost, C., Hughes, J.C., & Clare, L. (2024). Methods and approaches to facilitate inclusion of the views, perspectives, and preferences of people with moderate-to-severe dementia in research: a narrative systematic review. International Journal of Older People Nursing, 19(1), e12594. doi: 10.1111/opn.12594 (open access) click here to read an accessible summary

Martyr, A., Gamble, L.D., Hunt, A., Quinn, C., Morris, R.G., Henderson, C., Allan, L., Opdebeeck, C., Charlwood, C., Jones, R.W., Pentecost, C., Kopelman, M.D., Thom, J.M., Matthews, F.E., & Clare, L. (2024). Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme. BMC Medicine, 22(1), 265. doi: 10.1186/s12916-024-03492-y (open access)  

Martyr, A., Ravi, M., Gamble, L.D., Morris, R.G., Rusted, J.M., Pentecost, C., Matthews, F.E., & Clare, L. on behalf of the IDEAL study team. (2024). Trajectories of cognitive and perceived functional decline in people with dementia. Findings from the IDEAL programme. Alzheimer's & Dementia, 20(1), 410-429. doi: 10.1002/alz.13448 (open access) click here to read an accessible summary

Quinn, C., Gamble, L.D., Morris, R.G., Pentecost, C., Rusted, J.M., & Clare, L. on behalf of the IDEAL programme team. (2024). Longitudinal trajectories of stress and positive aspects of dementia caregiving: Findings from the IDEAL programme. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences., 79(8), gbae097. doi: 10.1093/geronb/gbae097 (open access) 

Quinn, C., Toms, G., Rippon, I., Nelis, S.M., Henderson, C., Morris, R.G., Rusted, J.M., Thom, J.M., van den Heuvel, E.A., Victor, C., & Clare, L., on behalf of the IDEAL programme team. (2024). Positive experiences in dementia care-giving: findings from the IDEAL programme. Ageing & Society, 44(5), 1010-1030. doi: 10.1017/S0144686X22000526 (open access) click here to read an accessible summary

Rippon, I., Victor, C.R., Martyr, A., Matthews, F.E., Quinn, C., Rusted, J.M., Jones, R.W., Collins, R., van Horik, J., Pentecost, C., Allan, L., & Clare, L. on behalf of the IDEAL programme team. (2024). Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme. Aging & Mental Health, 28(6), 891-899. doi: 10.1080/13607863.2023.2286618 click here to read an accessible summary

Sabatini, S., Martyr, A., Hunt, A., Gamble, L.D., Matthews, F.E., Thom, J.M., Jones, R.W., Allan, L., Knapp, M., Quinn, C., Victor, C., Pentecost, C., Rusted, J.M., Morris, R.G., & Clare, L. (2024). Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme. BMC Geriatrics, 24(1), 171. doi: 10.1186/s12877-024-04707-w (open access) click here to read an accessible summary

‌Sabatini, S., Martyr, A., Hunt, A., Gamble, L.D., Matthews, F.E., Thom, J.M., Jones, R.W., Allan, L., Knapp, M., Victor, C., Pentecost, C., Rusted, J.M., Morris, R.G., & Clare, L. (2024). Comorbid health conditions and their impact on social isolation, loneliness, quality of life, and well-being in people with dementia: longitudinal findings from the IDEAL programme. BMC Geriatrics, 24(1), 23. doi: 10.1186/s12877-023-04601-x (open access) ‌

Sabatini, S., Turner, S.G., & Clare, L. (2024). Felt age and its psychological correlates in dementia spousal caregiving dyads: findings from the IDEAL programme. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 79(8), gbae105. doi: 10.1093/geronb/gbae105 

Sabatini, S., Turner, S., Morris, R.G., Victor, C., Opdebeeck, C., Thom, J.M., Hunt, A., Allan, L., Pentecost, C., & Clare, L. (2024). Correlates of felt age in caregivers of people with dementia: findings from the IDEAL study. Frontiers in Psychology, 12(1), 1287842. doi: 10.3389/fpsyg.2023.1287842 (open access) click here to read an accessible summary

Stapley, S., Pentecost, C., Collins, R., Quinn, C., Dawson, E., Thom, J.M., & Clare, L. (2024). 'Caring beyond capacity' during the COVID-19 pandemic: resilience and family carers of people with dementia from the IDEAL cohort. International Journal of Care and Caring, 8(2), 246-263. doi: 10.1332/239788221X16819328227036 click here to read an accessible summary

Victor, C.R., Gamble, L.D., Pentecost, C., Quinn, C., Charlwood, C., Matthews, F.E., & Clare, L. (2024). Living well with dementia: an exploratory matched analysis of minority ethnic and white people with dementia and carers participating in the IDEAL programme. International Journal of Geriatric Psychiatry, 39(1), e6048. doi: 10.1002/gps.6048‌ (open access) 

Victor, C., van den Heuvel, E., Pentecost, C., Quinn, C., Charlwood, C., & Clare, L. (2024). Perspectives of minority ethnic caregivers of people with dementia interviewed as part of the IDEAL programme. Health and Social Care in the Community, 2024(1), 8732644. doi: 10.1155/2024/8732644 (open access)  

Victor, C.R., van den Heuvel, E., Pentecost, C., Quinn, C., Charlwood, C., & Clare, L. (2024). Understanding dementia in minority ethnic communities: the perspectives of key stakeholders interviewed as part of the IDEAL programme. Dementia, 23(7), 1172-1182. https://doi.org/10.1177/14713012241272817 (open access)   

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Published Papers:‌‌

Alexander, C.M., Martyr, A., Gamble, L.D., Quinn, C., Pentecost, C., Morris, R.G., & Clare, L. on behalf of the IDEAL study team. (2023). Dyadic influences on awareness of condition in people with dementia: Findings from the IDEAL cohort. Frontiers in Aging Neuroscience, 15(1), 1277336. doi: 10.3389/fnagi.2023.1277336 (open access) click here to read an accessible summary

Batchelor, A., Bingham, J., Burton, J., Charlwood, C., Cheeseman, M., Litherland, R., Norris, C., Oliver, K., Pentecost, C., Scott, D., & Ward, J. (2023). The IDEAL Living with Dementia Toolkit: living your life with hope. Journal of Dementia Care, 31(1), 20-24. 

Clare, L., Pentecost, C., Collins, R., Martyr, A., Litherland, R., Morris, R.G., Quinn, C., Gamble, L.D., Sabatini, S., & Victor, C. (2023). Evaluating ‘living well’ with mild-to-moderate dementia: co-production and validation of the IDEAL My Life Questionnaire. Dementia, 22(7), 1548-1566. doi: 10.1177/14713012231188502 (open access) click here to read an accessible summary

• Click here for an infographic highlighting how co-production helped design the questionnaire

Dawson, E., Collins, R., Pentecost, C., Stapley, S., Quinn, C., Charlwood, C., Victor, C., & Clare, L. (2023). Navigating the coronavirus pandemic two years on: Experiences of people with dementia from the British IDEAL cohort. Dementia, 22(4), 760-782. doi: 10.1177/14713012231158215 (open access) click here to read an accessible summary

Henley, J., Hillman, A., Jones, I.R., Woods, B., MacLeod, C.A., Pentecost, C., & Clare, L. (2023). 'We're happy as we are': the experience of living with possible undiagnosed dementia. Ageing & Society, 43(9), 2041-2066. doi: 10.1017/S0144686X21001495 click here to read an accessible summary

Hillman, A., Jones, I. R., Quinn, C., Pentecost, C., Stapley, S., Charlwood, C., & Clare, L. (2023). The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme. Social Science and Medicine, 331(1), 116098. doi: 10.1016/j.socscimed.2023.116098 (open access)‌ click here to read an accessible summary

‌Hunt, A., Martyr, A., Gamble, L. D., Morris, R. G., Thom, J. M., Pentecost, C., & Clare, L. (2023). The associations between personality traits and quality of life, satisfaction with life, and well-being over time in people with dementia and their caregivers: findings from the IDEAL programme. BMC Geriatrics, 23, 354. doi: 10.1186/s12877-023-04075-x‌ (open access) click here to read an accessible summary

Martyr, A., Rusted, J.M., Quinn, C., Gamble, L.D., Collins, R., Morris, R.G., & Clare, L. (2023). Resilience in carers of people with mild-to-moderate dementia: findings from the IDEAL cohort. BMC Geriatrics, 23(1), 804. doi: 10.1186/s12877-023-04549-y (open access) ‌click here to read an accessible summary

O’Rourke, G., Pentecost, C., van den Heuvel, E.A., Victor, C., Quinn, C., Hillman, A., Litherland, R., & Clare, L. (2023). Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort. Ageing & Society, 43(10), 2424-2446. doi: 10.1017/S0144686X21001719 (open access) click here to read an accessible summary

Sabatini, S., Martyr, A., Gamble, L. D., Collins, R., Matthews, F. E., Morris, R. G., Rusted, J. M., Pentecost, C., Quinn, C., & Clare, L. on behalf of the IDEAL study team. (2023). Longitudinal predictors of informant-rated involvement of people with dementia in everyday decision-making: Findings from the IDEAL program. Journal of Applied Gerontology, 42(2), 290-301. doi: 10.1177/07334648221128558 (open access) click here to read an accessible summary

Sabatini, S., Martyr, A., Gamble, L.D., Jones, I.R., Collins, R., Matthews, F.E., Knapp, M., Thom, J.M., Henderson, C., Victor, C., Pentecost, C., & Clare, L. (2023). Are profiles of social, cultural, and economic capital related to living well with dementia? Longitudinal findings from the IDEAL cohort. Social Science & Medicine, 317, 115603. doi: 10.1016/j.socscimed.2022.115603 (open access) click here to read an accessible summary

Sabatini, S., Martyr, A., Gamble, L.D., Jones, I.R., Collins, R., Matthews, F.E., Victor, C., Quinn, C., Pentecost, C., Thom, J.M., & Clare, L. (2023). Profiles of social, cultural, and economic capital as longitudinal predictors of stress, positive experiences of caring, and depression among carers of people with dementia: findings from the IDEAL programme. Aging & Mental Health, 27(7), 1335-1343. doi: 10.1080/13607863.2022.2098920 click here to read an accessible summary

Published Abstracts:

Alexander, C. M., Martyr, A., Clare, L., & in collaboration with the IDEAL programme research team. (2023). Does awareness of condition change over time in people with mild-to-moderate dementia? Longitudinal findings from the IDEAL cohort. Alzheimer's & Dementia, 19(S4), e061549. doi: 10.1002/alz.061549

‌Clare, L., Gamble, L.D., Martyr, A., & Matthews, F.E. (2023). Dementia subtypes and quality of life in people with mild-to-moderate dementia: longitudinal findings from the IDEAL and IDEAL-2 cohorts over 6 years. Alzheimer's & Dementia, 19(S19), e074062. doi: 10.1002/alz.074062

Gamble, L.D., Clare, L., Martyr, A., & Matthews, F.E. (2023). Association of cognitive reserve with cognitive function and quality of life in the years following a diagnosis of dementia: initial findings from the IDEAL study. Alzheimer's & Dementia, 19(S19), e074065. doi: 10.1002/alz.074065

Martyr, A., Ravi, M., Gamble, L.D., Morris, R.G., Pentecost, C., Matthews, F.E., & Clare, L. (2023). Trajectories of cognition and functional ability in people with dementia: Two-year longitudinal results from the IDEAL programme. Alzheimer's & Dementia, 19(S19), e074066. doi: 10.1002/alz.074066

Matthews, F.E., Gamble, L.D., & Clare, L. (2023). Longitudinal factors associated with living well in people with mild-to-moderate dementia: initial findings from the IDEAL and IDEAL-2 cohorts over 6 years. Alzheimer's & Dementia, 19(S19), e074060. doi: 10.1002/alz.074060

Clare, L., & Victor, C. (2023). Living well with mild to moderate dementia. Findings from the IDEAL program: a British cohort study. Innovation in Aging, 7(Supplement_1), 433-433. doi: 10.1093/geroni/igad104.1428

Clare, L., Martyr, A., Gamble, L., & Matthews, F. (2023). Dementia subtypes and living well in people with mild to moderate dementia. Longitudinal findings over six years. Innovation in Aging, 7(Supplement_1), 434-434. doi: 10.1093/geroni/igad104.1430

Clare, L., Gamble, L., Martyr, A., & Matthews, F. (2023). Longitudinal factors associated with living well in people with mild to moderate dementia. Innovation in Aging, 7(Supplement_1), 433-434. doi: 10.1093/geroni/igad104.1429

Victor, C., Quinn, C., Matthews, F., Pentecost, C., & Gamble, L. (2023). Living well? A matched analysis of minority ethnic and white British people with dementia and their carers. Innovation in Aging, 7(Supplement_1), 434-435. doi: 10.1093/geroni/igad104.1432

Victor, C., & Rippon, I. (2023). Social health in people with dementia and their carers. Preliminary findings from the IDEAL program. Innovation in Aging, 7(Supplement_1), 434-434. doi: 10.1093/geroni/igad104.1431

Published Papers:‌‌

‌‌‌Alexander, C.M., Martyr, A., & Clare, L. (2022). Changes in awareness of condition in people with mild-to-moderate dementia: longitudinal findings from the IDEAL cohort. International Journal of Geriatric Psychiatry, 37. doi: 10.1002/gps.5702 (open access) click here to read an accessible summary

Clare, L., Gamble, L.D., Martyr, A., Quinn, C., Litherland, R., Morris, R.G., Jones, I.R., & Matthews, F.E. (2022). Psychological processes in adapting to dementia: illness representations among the IDEAL cohort. Psychology and Aging, 37(4), 524-541. doi: 10.1037/pag0000650 (open access) click here to read an accessible summary

Clare, L., Gamble, L.D., Martyr, A., Sabatini, S., Nelis, S.M., Quinn, C., Pentecost, C., Victor, C., Jones, R.W., Jones, I.R., Knapp, M., Litherland, R., Morris, R.G., Rusted, J.M., Thom, J.M., Collins, R., Henderson, C., & Matthews, F.E., on behalf of the IDEAL study team. (2022). Longitudinal trajectories of quality of life among people with mild-to-moderate dementia: a latent growth model approach with IDEAL cohort study data. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 77, 1037-1050. doi: 10.1093/geronb/gbac022 (open access) click here to read an accessible summary

‌Clare, L., Gamble, L.D., Martyr, A., Sabatini, S., Nelis, S.M., Quinn, C., Pentecost, C., Victor, C., Jones, R.W., Jones, I.R., Knapp, M., Litherland, R., Morris, R.G., Rusted, J.M., Thom, J.M., Collins, R., Henderson, C., & Matthews, F.E. on behalf of the IDEAL study team. (2022). 'Living well' trajectories among family caregivers of people with mild-to-moderate dementia in the IDEAL cohort. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 77(10), 1852-1863. doi:10.1093/geronb/gbac090 (open access) click here to read an accessible summary

Clare, L., Martyr, A., Gamble, L.D., Pentecost, C., Collins, R., Dawson, E., Hunt, A., Parker, S., Allan, L., Burns, A., Hillman, A., Litherland, R., Quinn, C., Matthews, F.E., & Victor, C. (2022). Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort. Journal of Alzheimer's Disease, 85, 925-940. doi: 10.3233/JAD-215095 click here to read an accessible summary

Collins, R., Hunt, A., Quinn, C., Martyr, A., Pentecost, C., & Clare, L. (2022). Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: findings from the IDEAL programme. Dementia, 21(4), 1135-1153. https://doi.org/10.1177/14713012211069449 (open access) click here to read an accessible summary

Gamble, L.D., Matthews, F.E., Jones, I.R., Hillman, A., Woods, B., MacLeod, C., Martyr, A., Collins, R., Pentecost, C., Rusted, J., & Clare, L. (2022). Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study. BMC Geriatrics, 22, 409. doi: 10.1186/s12877-022-03086-4 (open access) click here to read an accessible summary

Gamble, L.D., Parker, S., Quinn, C., Bennett, H.Q., Martyr, A., Sabatini, S., Pentecost, C., Collins, R., Dawson, E., Hunt, A., Allan, L., Burns, A., Litherland, R., Victor, C., Matthews, F.E., & Clare, L. (2022). A comparison of well-being of carers of people with dementia and their ability to manage before and during the COVID-19 pandemic: findings from the IDEAL study. Journal of Alzheimer’s Disease, 88(2), 679-692. doi: 10.3233/JAD-220221 click here to read an accessible summary

Henderson, C., Knapp, M., Martyr, A., Gamble, L.D., Nelis, S.M., Quinn, C., Pentecost, C., Collins, R., Wu, Y.-T., Jones, I.R., Victor, C.R., Pickett, J.A., Jones, R.W., Matthews, F.E., Morris, R.G., Rusted, J.M., Thom, J.M., & Clare, L., on behalf of the IDEAL programme team. (2022). The use and costs of paid and unpaid care for people with dementia: findings from three waves of the IDEAL cohort programme. Journal of Alzheimer's Disease, 86, 135-153. doi: 10.3233/JAD-215117 see an example of our recent work

Martyr, A., Gamble, L.D., Nelis, S.M., Collins, R., Alexander, C.M., Morris, R.G., Quinn, C., Pentecost, C., Rusted, J.M., Victor, C., Thom, J.M., Matthews, F.E., & Clare, L., on behalf of the IDEAL study team. (2022). Predictors of awareness of functional ability in people with dementia: the contribution of personality, cognition, and neuropsychiatric symptoms. Findings from the IDEAL programme. Dementia and Geriatric Cognitive Disorders, 51, 221-232. doi: 10.1159/000524607 (open access) click here to read an accessible summary

Pentecost, C., Collins, R., Stapley, S., Victor, C., Quinn, C., Hillman, A., Litherland, R., Allan, L., & Clare, L. (2022). Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: experiences of IDEAL cohort participants. Health & Social Care in the Community, 30(6), e4594-e4604. doi: 10.1111/hsc.13863 (open access) click here to read an accessible summary

Quinn, C., Gamble, L.D., Parker, S., Martyr, A., Collins, R., Victor, C., Dawson, E., Hunt, A., Pentecost, C., Allan, L., & Clare, L. (2022). Impact of COVID-19 on carers of people with dementia in the community: Findings from the British IDEAL cohort. International Journal of Geriatric Psychiatry, 37. doi:10.1002/gps.5708 (open access) click here to read an accessible summary

Quinn, C., Hart, N., Henderson, C., Litherland, R., Pickett, J., & Clare, L. (2022). Developing supportive local communities: perspectives from people with dementia and caregivers participating in the IDEAL programme. Journal of Aging & Social Policy, 34(6), 839-859. doi: 10.1080/08959420.2021.1973341 (open access) click here to read an accessible summary

Quinn, C., Pickett, J.A., Litherland, R., Morris, R.G., Martyr, A., & Clare, L. (2022). Living well with dementia: what is possible and how to promote it. International Journal of Geriatric Psychiatry, 37. doi: 10.1002/gps.5627 (open access) click here to read an accessible summary

Sabatini, S., Bennett, H.Q., Martyr, A., Collins, R., Gamble, L.D., Matthews, F.E., Pentecost, C., Dawson, E., Hunt, A., Parker, S., Allan, L., Burns, A., Litherland, R., Quinn, C., & Clare, L. (2022). Minimal impact of COVID-19 on the mental health and well-being of people living with dementia: analysis on matched longitudinal data from the IDEAL study. Frontiers in Psychiatry, 13, 849808. doi: 10.3389/fpsyt.2022.849808 (open access) click here to read an accessible summary

Sabatini, S., Martyr, A., Ukoumunne, O. C., Ballard, C., Collins, R., Pentecost, C., Rusted, J. M., Quinn, C., Anstey, K. J., Kim, S., Corbett, A., Brooker, H., & Clare, L. (2022). Attitudes toward own aging and cognition among individuals living with and without dementia: Findings from the IDEAL programme and the PROTECT study. BMC Geriatrics, 22(1), 641. doi: 10.1186/s12877-022-03336-5 (open access) click here to read an accessible summary

Scott, H. (2021). The changing self: The impact of dementia on the personal and social identity of women (findings from the Improving the Experience of Dementia and Enhancing Active Life programme). Dementia, 21, 503-518. doi: 10.1177/14713012211047351 (open access)‌

van Horik, J.O., Collins, R., Martyr, A., Henderson, C., Jones, R.W., Knapp, M., Quinn, C., Thom, J.M., Victor, C., & Clare, L. on behalf of the IDEAL Programme Team. (2022). Limited receipt of support services among people with mild-to-moderate dementia: findings from the IDEAL cohort. International Journal of Geriatric Psychiatry, 37. doi: 10.1002/gps.5688 (open access) click here to read an accessible summary

Published Papers:

Alexander, C.M., Martyr, A., Gamble, L.D., Savage, S.A., Quinn, C., Morris, G.M., Collins, R., & Clare, L. in collaboration with the IDEAL programme research team. (2021). Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme. BMC Geriatrics, 21, 511. doi: 10.1186/s12877-021-02468-4 (open access) click here to read an accessible summary

Choi, A., Ballard, C., Martyr, A., Collins, R., Morris, R.G., & Clare, L. (2021). The impact of auditory hallucinations on ‘living well’ with dementia: findings from the IDEAL programme. International Journal of Geriatric Psychiatry, 36, 1370-1377. doi: 10.1002/gps.5533 (open access) click here to read an accessible summary

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 an accessible summary to find out more, click here to read a copy of the article

Opdebeeck, C., Katsaris, M.A., Martyr, A., Lamont, R.A., Pickett, J.A., Rippon, I., Thom, J.M., Victor, C., & Clare, L., on behalf of the IDEAL programme team. (2021). What are the benefits of pet ownership and care among people with mild-to-moderate dementia? Findings from the IDEAL programme. Journal of Applied Gerontology, 40, 1559-1567. doi: 10.1177/0733464820962619 (open access) click here to read an accessible 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 an accessible summary

Victor, C.R., Rippon, I., Quinn, C., Martyr, A., & Clare, L., on behalf of the IDEAL programme team. (2021). The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme. International Journal of Care and Caring, 5, 447-467. doi: 10.1332/239788221X16104266615749 (open access) click here to read an accessible 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. (2021). The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme. Aging & Mental Health, 25, 1232-1238. doi: 10.1080/13607863.2020.1753014 (open access) click here to read an accessible summary

Wu, Y.-T., Clare, L., Jones, I.R., Nelis, S.M., Quinn, C., Martyr, A., 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) programme. (2021). Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme. Social Psychiatry and Psychiatric Epidemiology, 9, 1601-1610. doi:10.1007/s00127-021-02030-y (open access) click here to read an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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., &p; 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 to read a copy of the article click 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., Matthews, 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., Matthews, 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) click here to read an accessible summary

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. To read a copy of this article, please click this link. click here to read an accessible 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 an accessible 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 an accessible 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 an accessible 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 an accessible 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 to read a copy of the article click here

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

Associated Publications:

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 to read a copy of the article click here

Quinn, C. (2017). Conducting interviews with people with dementia and their caregivers. SAGE Research Methods Cases. doi: 10.4135/9781526404855 to read a copy of the article click here

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 to read a copy of the article click here

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

Associated Publications:

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 to read a copy of the article click here

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.