Background <p>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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusions <p>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.</p>

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

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

摘要

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.