Longitudinal study of care needs and behavioural changes in people living with dementia using in-home assessment data
Authors: Walsh Chloe , Capstick Alexander , Fletcher-Lloyd Nan , True Jessica ,   CR&T Group,   Leadership and Management, Sharp David , Wilson Danielle , Daniels Sarah , Wingfield David , Harrison Matthew , Haar Shlomi , Golemme Mara ,   Behaviour and Cognition Group, Del Giovanne Martina , Malhotra Paresh , Graham Neil , Mallas Emma Jane , Hassim Naomi , Scott Greg , Kolanko Magdalena , Serban Alina-Irina , Lai Helen , Soreq Eyal , Li Lucia M. , Wu Tong , Parker Thomas ,   Bioelectronic Systems Group, Constandinou Timothy , Bannon Alan , Mandic Danilo , Charalambos  , Rapeaux Adrien , Hammour Ghena , Williams Ian , Hsieh Byran , Yin Maowen , Yogendran Niro ,   Robotics and AI Interfaces Group, Vaidyanathan Ravi , Su Ting , Lima Maria , Martineau Thomas , Shi Mayue , Jouaiti Melanie , Xu Tianbo , Wairagkar Maitreyee , Xiao Bo , Castillo Carlot Sebastian , Valdunciel Alehandro , Wattansiri Panipat , Seeamber Reineira , Guez Annika , Liu Zehao , Dhawan Saksham ,   Translational Machine Intelligence Group, Barnaghi Payam , Fletcher-Lloyd Nan , Marzuki Amer , Haddadi Hamed , Palermo Francesca , Woodbridge Mark , Joffe Anna , Zhao Yuchen , Kouchaki Samaneh , Capstick Alexander , Chen Yu , Cui Tianyu , Walsh Chloe ,   Point of Care Diagnostics Group, Freemont Paul , Cameron Loren , Adam Thomas , Crone Michael , Jackson Raphaella , Jensen Kristen , Tran Martin ,   Sleep and Circadian Group, Dijk Derk Jan , Skeldon Anne , Revell Vikki , Wells Kevin , Atzori Giuseppe , Bartsch Ullrich , Grainge Lucina , Della Monica Ciro , Hassanin Hana , Kumar Kiran GR , Woolley James , Lambert Damion , Wood-Campar Iris , Mahvash Sara Mohammadi , Rexha Janetta , Garcia Thalia Rodrigues ,   Movement and Movement Disorders Group, Abulikemu Subai , Jacob Julian Jeyasingh , Graef Cosima , Steadman Nathan , Kutuzova Akena , Nardi Federico , Touboul Assaf ,   Human Centred Design Group, Naar Lenny , Horrocks Sophie , Quan Brian ,   Site Investigators and Key Personnel, Nilforooshan Ramin , True Jessica , Balazikova Olga , Beal Emily , Whitethread Nicole , Purnell Matthew , Zarombaite Vaiva , Copps Lucy , Knight Olivia , Bangar Gaganpreet , Dey Sumit , Mukonda Chelsea , Hine Jessia , Mallon Luke , Norman Claire , Patel Aanesha , Lyall Ruby , Razall Sanara , Kirby Pippa , Patterson John , Law Mike , Kenny Andy , Nilforooshan Ramin , Barnaghi Payam 
Published: January 2025

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.