Understanding quality of life in mild-to-moderate dementia - Linda Clare

Presented at the British Neuropsychiatry Association annual conference, Thursday 2nd March 2023. Linda Clare is Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter Medical School and leads the Centre for Research in Ageing and Cognitive Health (REACH). IDEAL, a British cohort study that started in 2014, aims to provide evidence about quality of life (QoL) that can be used to improve the experience of living with dementia. We recruited and assessed 1,545 people with mild-to-moderate dementia, where possible with their carers. We reassessed as many as possible at 12, 24, 48, 72 and 96 months. QoL varied according to dementia subtype, with the poorest scores seen in people with Parkinson-related dementias. Cross-sectionally, we analysed baseline data to identify factors associated with QoL. We grouped these into five domains: social situation, social resources, physical health, everyday functioning, and psychological well-being. All domains were independently associated with QoL. People with lower QoL scores, around 18% of the cohort, were likely to experience greater social disadvantage, more co-morbid conditions, more functional disability, and poorer psychological well-being. When the domains were modelled together, the psychological domain dominated as the significant predictor of QoL, suggesting that other domains influence QoL through their effect on psychological well-being. Longitudinally, we found little change in QoL in the years following diagnosis, indicating that where QoL is poor this is likely to be already evident at the time of diagnosis. While QoL remained stable for most, it declined for a small proportion (7.6% by Wave 3). These participants had higher initial levels of depression and loneliness, and lower initial levels of self- esteem and optimism. Over all six waves, as dementia progressed, decline in QoL was associated with increasing depression, and was more likely in men and in older participants. These IDEAL findings point to some important potentially modifiable targets for intervention, from the time of diagnosis onwards, to maintain or improve QoL and prevent decline. Promoting psychological well-being, tackling low mood and depression, and encouraging social connections to reduce loneliness and isolation are key to this, alongside addressing dementia- related neuropsychiatric symptoms, functional disability, and the impact of co-morbid conditions, and supporting carers. Drawing on the findings, we created the IDEAL ‘living with dementia map’ that can be used to understand influences on QoL, identify what can be done to maintain or improve it, and inform personalised care planning. Linked to this, we co-produced the IDEAL Living with Dementia Toolkit https://livingwithdementiatoolkit.org... , a resource for people with dementia and carers. Clinicians can offer people a degree of hope by focusing on what supports a good quality of life and directing them to relevant resources. 🔔 Subscribe for more expert lectures from the BNPA. 👉 Click here to find out more about joining the BNPA: https://bnpa.org.uk/membership/