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

Behaviour and Cognition Group; Leadership and Management; CR&T Group; Site Investigators and Key Personnel; Human Centred Design Group; Movement and Movement Disorders Group; Sleep and Circadian Group; Point of Care Diagnostics Group; Translational Machine Intelligence Group; Robotics and AI Interfaces Group; Bioelectronic Systems Group

doi:10.1038/s43856-024-00724-3

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

Behaviour and Cognition Group
, Leadership and Management
, CR&T Group
, Site Investigators and Key Personnel
, Human Centred Design Group
, Movement and Movement Disorders Group
, Sleep and Circadian Group
, Point of Care Diagnostics Group
, Translational Machine Intelligence Group
, Robotics and AI Interfaces Group
, Bioelectronic Systems Group

Research output: Contribution to journal › Article › peer-review

1 Scopus citations

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.

Original language	English
Article number	14
Journal	Communications Medicine
Volume	5
Issue number	1
DOIs	https://doi.org/10.1038/s43856-024-00724-3
State	Published - 1 Dec 2025
Externally published	Yes

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health
Assessment and Diagnosis
Internal Medicine
Epidemiology
Medicine (miscellaneous)

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10.1038/s43856-024-00724-3

Cite this

Behaviour and Cognition Group, Leadership and Management, CR&T Group, Site Investigators and Key Personnel, Human Centred Design Group, Movement and Movement Disorders Group, Sleep and Circadian Group, Point of Care Diagnostics Group, Translational Machine Intelligence Group, Robotics and AI Interfaces Group, & Bioelectronic Systems Group (2025). Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data. Communications Medicine, 5(1), Article 14. https://doi.org/10.1038/s43856-024-00724-3

@article{3066d9cf428d46d8a9d3e20ee07bea40,

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

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{\textquoteright} health during their progression of dementia.",

author = "\{Behaviour and Cognition Group\} and \{Leadership and Management\} and \{CR\&T Group\} and \{Site Investigators and Key Personnel\} and \{Human Centred Design Group\} and \{Movement and Movement Disorders Group\} and \{Sleep and Circadian Group\} and \{Point of Care Diagnostics Group\} and \{Translational Machine Intelligence Group\} and \{Robotics and AI Interfaces Group\} and \{Bioelectronic Systems Group\} and Chloe Walsh and Alexander Capstick and Nan Fletcher-Lloyd and Jessica True and Andy Kenny and Mike Law and John Patterson and Pippa Kirby and Sanara Razall and Ruby Lyall and Aanesha Patel and Claire Norman and Luke Mallon and Jessia Hine and Chelsea Mukonda and Sumit Dey and Gaganpreet Bangar and Olivia Knight and Lucy Copps and Vaiva Zarombaite and Matthew Purnell and Nicole Whitethread and Emily Beal and Olga Balazikova and Ramin Nilforooshan and Brian Quan and Sophie Horrocks and Lenny Naar and Assaf Touboul and Federico Nardi and Akena Kutuzova and Nathan Steadman and Cosima Graef and Jacob, \{Julian Jeyasingh\} and Subai Abulikemu and Garcia, \{Thalia Rodrigues\} and Janetta Rexha and Mahvash, \{Sara Mohammadi\} and Iris Wood-Campar and Damion Lambert and James Woolley and Kumar, \{Kiran G.R.\} and Hana Hassanin and \{Della Monica\}, Ciro and Lucina Grainge and Ullrich Bartsch and Giuseppe Atzori and Kevin Wells and Vikki Revell and Shlomi Haar",

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doi = "10.1038/s43856-024-00724-3",

language = "English",

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Behaviour and Cognition Group, Leadership and Management, CR&T Group, Site Investigators and Key Personnel, Human Centred Design Group, Movement and Movement Disorders Group, Sleep and Circadian Group, Point of Care Diagnostics Group, Translational Machine Intelligence Group, Robotics and AI Interfaces Group & Bioelectronic Systems Group 2025, 'Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data', Communications Medicine, vol. 5, no. 1, 14. https://doi.org/10.1038/s43856-024-00724-3

TY - JOUR

T1 - Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data

AU - Behaviour and Cognition Group

AU - Leadership and Management

AU - CR&T Group

AU - Site Investigators and Key Personnel

AU - Human Centred Design Group

AU - Movement and Movement Disorders Group

AU - Sleep and Circadian Group

AU - Point of Care Diagnostics Group

AU - Translational Machine Intelligence Group

AU - Robotics and AI Interfaces Group

AU - Bioelectronic Systems Group

AU - Walsh, Chloe

AU - Capstick, Alexander

AU - Fletcher-Lloyd, Nan

AU - True, Jessica

AU - Kenny, Andy

AU - Law, Mike

AU - Patterson, John

AU - Kirby, Pippa

AU - Razall, Sanara

AU - Lyall, Ruby

AU - Patel, Aanesha

AU - Norman, Claire

AU - Mallon, Luke

AU - Hine, Jessia

AU - Mukonda, Chelsea

AU - Dey, Sumit

AU - Bangar, Gaganpreet

AU - Knight, Olivia

AU - Copps, Lucy

AU - Zarombaite, Vaiva

AU - Purnell, Matthew

AU - Whitethread, Nicole

AU - Beal, Emily

AU - Balazikova, Olga

AU - Nilforooshan, Ramin

AU - Quan, Brian

AU - Horrocks, Sophie

AU - Naar, Lenny

AU - Touboul, Assaf

AU - Nardi, Federico

AU - Kutuzova, Akena

AU - Steadman, Nathan

AU - Graef, Cosima

AU - Jacob, Julian Jeyasingh

AU - Abulikemu, Subai

AU - Garcia, Thalia Rodrigues

AU - Rexha, Janetta

AU - Mahvash, Sara Mohammadi

AU - Wood-Campar, Iris

AU - Lambert, Damion

AU - Woolley, James

AU - Kumar, Kiran G.R.

AU - Hassanin, Hana

AU - Della Monica, Ciro

AU - Grainge, Lucina

AU - Bartsch, Ullrich

AU - Atzori, Giuseppe

AU - Wells, Kevin

AU - Revell, Vikki

AU - Haar, Shlomi

PY - 2025/12/1

Y1 - 2025/12/1

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/85218054043

U2 - 10.1038/s43856-024-00724-3

DO - 10.1038/s43856-024-00724-3

M3 - Article

C2 - 39794486

AN - SCOPUS:85218054043

SN - 2730-664X

VL - 5

JO - Communications Medicine

JF - Communications Medicine

IS - 1

M1 - 14

ER -

Behaviour and Cognition Group, Leadership and Management, CR&T Group, Site Investigators and Key Personnel, Human Centred Design Group, Movement and Movement Disorders Group et al. Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data. Communications Medicine. 2025 Dec 1;5(1):14. doi: 10.1038/s43856-024-00724-3

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

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