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Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data

Walsh, C., Capstick, A., Fletcher-Lloyd, N. , True, J., Sharp, D., Wilson, D., Daniels, S., Wingfield, D., Harrison, M., Haar, S., Golemme, M., Del Giovanne, M., Malhotra, P., Graham, N., Mallas, E. J., Hassim, N., Scott, G., Kolanko, M., Serban, A-I., Lai, H., Soreq, E., Li, L. M., Wu, T., Parker, T., Constandinou, T., Bannon, A., Mandic, D., Charalambos, Rapeaux, A., Hammour, G., Williams, I., Hsieh, B., Yin, M., Yogendran, N., Vaidyanathan, R., Su, T., Lima, M., Martineau, T., Shi, M. ORCID: 0000-0001-8539-6873, Jouaiti, M., Xu, T., Wairagkar, M., Xiao, B., Castillo, C. S., Valdunciel, A., Wattansiri, P., Seeamber, R., Guez, A., Liu, Z., Dhawan, S., Barnaghi, P., Fletcher-Lloyd, N., Marzuki, A., Haddadi, H., Palermo, F., Woodbridge, M., Joffe, A., Zhao, Y., Kouchaki, S., Capstick, A., Chen, Y., Cui, T., Walsh, C., Freemont, P., Cameron, L., Adam, T., Crone, M., Jackson, R., Jensen, K., Tran, M., Dijk, D. J., Skeldon, A., Revell, V., Wells, K., Atzori, G., Bartsch, U., Grainge, L., Della Monica, C., Hassanin, H., Kumar, K. G. R., Woolley, J., Lambert, D., Wood-Campar, I., Mahvash, S. M., Rexha, J., Garcia, T. R., Abulikemu, S., Jacob, J. J., Graef, C., Steadman, N., Kutuzova, A., Nardi, F., Touboul, A., Naar, L., Horrocks, S., Quan, B., Nilforooshan, R., True, J., Balazikova, O., Beal, E., Whitethread, N., Purnell, M., Zarombaite, V., Copps, L., Knight, O., Bangar, G., Dey, S., Mukonda, C., Hine, J., Mallon, L., Norman, C., Patel, A., Lyall, R., Razall, S., Kirby, P., Patterson, J., Law, M., Kenny, A., Nilforooshan, R. & Barnaghi, P. (2025). Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data. Communications Medicine, 5(1), article number 14. doi: 10.1038/s43856-024-00724-3

Abstract

Background

People living with dementia often experience changes in independence and daily living, affecting their well-being and quality of life. Behavioural changes correlate with cognitive decline, functional impairment, caregiver distress, and care availability.

Methods

We use data from a 3-year prospective observational study of 141 people with dementia at home, using the Bristol Activities of Daily Living Scale, Neuropsychiatric Inventory and cognitive assessments, alongside self-reported and healthcare-related data.

Results

Here we show, psychiatric behavioural symptoms and difficulties in activities of daily living, fluctuate alongside cognitive decline. 677 activities of daily living and 632 psychiatric behaviour questionnaires are available at intervals of 3 months. Clustering shows three severity-based groups. Mild cognitive decline associates with higher caregiver anxiety, while the most severe group interacts more with community services, but less with hospitals.

Conclusions

We characterise behavioural symptoms and difficulties in activities of daily living in dementia, offering clinically relevant insights not commonly considered in current practice. We provide a holistic overview of participants’ health during their progression of dementia.

Publication Type: Article
Additional Information: © Crown 2025 This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Subjects: B Philosophy. Psychology. Religion > BF Psychology
H Social Sciences > HN Social history and conditions. Social problems. Social reform
H Social Sciences > HT Communities. Classes. Races
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
R Medicine > RT Nursing
Departments: School of Science & Technology
School of Science & Technology > Department of Engineering
SWORD Depositor:
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