Work Package 8
Collecting new data from 300 people with dementia and their carers to get a better understanding of the effects of dementia on people’s lives.
WORK PACKAGE 8
The purpose of the collection of new primary data is not to evaluate particular interventions but to generate data that will allow us to estimate associations between different measures in order to cross-walk between and fill gaps in datasets when (a) linking micro-simulation and macro-simulation models; (b) when moving between those models and the intervention studies (WP7); and (c) combining evidence from trials or other studies that use different instruments to measure the same constructs.
The data collection is generating new longitudinal data that will provide helpful information about how the needs, care and outcomes of a cohort of people with dementia and their carers change over time. This will be very valuable for the estimation of transition probabilities and care-pathways for the intervention model (WP10).
We are recruiting 300 people with a clinical diagnosis of dementia (100 people each with dementia that is mild, moderate and severe). We are excluding those with no identifiable family carer or other informant. Patients are being identified from populations served by the Sussex Partnership NHS Foundation Trust.
At the first meeting the study was explained. If consent was obtained the person with dementia and their main family carer were interviewed simultaneously by a pair of research workers who complete the assessment at baseline and at 52-week follow-up, in either the clinic or patient’s home. Interviews are designed to minimise respondent burden while still collecting comprehensive data.