Informa Healthcare, International Review of Psychiatry, 6(25), p. 659-672
Abstract Research into the epidemiological, clinical characteristics and economic impact of dementia is critical to increase understanding and better inform care and policy, and empower people with Alzheimer's disease (AD) and their families to make preparations and timely decisions about accommodation, care and treatment. The LASER-AD longitudinal study of people with AD and their carers has contributed to our understanding of the progression, characteristics and costs of the disease, and to developing tools that help detect dementia earlier, and screen and identify problems experienced by carers. Our work on quality of life shows that even those with severe dementia can report this meaningfully, although family proxy ratings of quality of life do not necessarily mirror the views of the individual. Despite the impact of the disease process, people with AD experience well-being in adversity and still live fulfilling lives. The study highlights the high prevalence and severity of neuropsychiatric symptoms, carer anxiety, depression and abusive behaviour. It informs future directions for possible interventions, in particular the central role of carer coping strategies in predicting carer mental illness. Current research is building on our findings, which have also been used to inform national and international plans for managing people with dementia and their carers.