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.
People with dementia experience changes in behaviour, independence and memory that impacts their own lives and the lives of the people who care for them. We study how living with dementia affects daily life and well-being after dementia diagnosis. In total, 141 people with dementia participated in the study. Study participants and their carers answered questions about daily activities, mental health, and cognitive abilities every 3 months. We found that behavioural changes and challenges in daily tasks for people with dementia are affected as memory and thinking skills decline. Carers of people with mild symptoms of dementia reported higher levels of stress, while people with more severe symptoms relied more on community services with a lower number of hospital visits. These findings offer insights to improve dementia care and support services.
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