Quality of life of informal carers of people with dementia
Christopher Butler (Nuffield Department of Clinical Neurosciences)
The cognitive and functional decline associated with dementia affects the health-related quality of life (HR-QoL) both of people with dementia and of those who care for them. The burden on informal caregivers, measured in the form of utility values which are necessary to inform economic evaluations of interventions, has only been reported in a very small number of studies. Obtaining more precise, comprehensive and up-to-date estimates of the impact of dementia on carer HR-QoL is important given that many pharmacological and psychosocial interventions aim to delay institutionalization, and so may increase the burden on informal carers. More evidence is also needed on the association between carer’s HR-QoL and disease progression in those with dementia who are being cared for. Furthermore, algorithms are necessary to map HR-QoL estimates obtained through disease-specific instruments to generic preference-based measures which can produce utility weights, and this may require prospective studies which administer dementia-specific instruments and preference-based instruments to the same respondents.
The aims of this project are:
- to conduct a systematic literature review of HR-QoL in carers of people with dementia
- to conduct a prospective survey of HR-QoL in carers and those with dementia who are being cared for, which will provide evidence on the association between disease progression in those with dementia and the HR-QoL of their carer
- to use the results of the prospective survey, in which disease-specific and utility-based instruments will be administered, to estimate the association between these measures and develop mapping algorithms.
RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING
The project will start with a systematic review of HR-QoL in carers of people with dementia which will have two components: one focusing on disease specific measures and the other on generic preference-based measures.
A prospective study will be in place to collect data on carer and patient characteristics, including the HR-QoL of people with dementia (both self- and proxy-rated) and their carers using both generic preference-based and disease specific instruments. The candidate will be expected identify suitable participants and oversee data collection at one of the hospital sites.
Finally, the data collected will be used to conduct a mapping of the results of the disease specific instrument to the generic preference-based instrument in order to obtain health state values (utilities) for a common disease specific instrument.
FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING
This project builds on work developed as part of the ROADMAP project. It will involve collecting data on the field in clinical settings (e.g. memory clinics). Training will be offered in the fields of Health Economics, Medical Statistics, Decision Analytic Modelling, Systematic Literature Reviews and Meta-Analysis, Good Clinical Practice, and other courses provided by the University.
A degree in a quantitative discipline (e.g. statistics, mathematics, economics, epidemiology, and operational research) or, if in different discipline, the inclusion of substantial and well-graded quantitative component, is required. A asters degree and/or relevant experience is highly desirable.