2 Understanding quality of life in mild-to-moderate dementia and what we can do to maintain or enhance it
Authors: Clare Linda 
Published: November 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). Her research aims to improve understanding and support for older people and people with dementia through a focus on living well with dementia, developing rehabilitative approaches to optimise independence, and supporting family care. This includes the IDEAL longitudinal cohort study, an Alzheimer’s Society Centre of Excellence, which investigates what helps people with dementia and family carers to live well with the condition. Linda has published over 300 peer-reviewed journal articles. She is a Fellow of the British Psychological Society, the Academy of Social Sciences and the Gerontological Society of America. She chaired the British Psychological Society’s Dementia Advisory Group from 2014 to 2017, contributed to development of the 2018 NICE guideline on dementia, and recently completed a term as vice-chair of the governing board of the Global Council on Brain Health. She is a member of the Alzheimer’s Disease International Medical and Scientific Advisory Panel and the leadership committee of the International Research Network on Dementia Prevention. Trained as a clinical psychologist and clinical neuropsychologist, she is registered as a practitioner with the UK Health and Care Professions Council.

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.uk/, 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.