A Study Proposing a Data Model for a Dementia Care Mapping (DCM) Data Warehouse for Potential Secondary Uses of Dementia Care Data

Introduction

In 2015 there were 46.8 million people estimated to be living with dementia worldwide (Prince et al., 2015) an increase of more than 10 million since 2010. The numbers of people with dementia globally are estimated to rise to 74.7 million in 2030 and more than 131.5 million in 2050 (Prince et al., 2015). There are 9.9 million new cases of dementia every year, indicating one new case every four seconds. This figure is 30% higher than the annual number of new cases estimated for 2010 by the World Health Organisation in their 2012 report (Prince et al., 2015). Currently about 800,000 people with dementia live in the UK and the number is expected to double in the next 30 years (Department of Health, 2015). Dementia is a progressive disease and there is currently no cure. In addition to research focused on the cause and cure of dementia, improving the quality of life and quality of care for people with dementia is a major global concern (World Health Organisation, 2012) and is a national priority in the UK (Department of Health, 2015a). The G8 Dementia Summit in 2013 highlighted the importance of progressing initiatives for sharing and reusing existing large research and healthcare datasets (Department of Health, 2013) for this purpose, thus instigating the concept of ‘big data’ for dementia research (Deetjen et al., 2015).

Big data for dementia research includes a combination of both medically driven and non-medically driven data. The term ‘non-medically driven data’ here refers to data about people’s lifestyles, diets and food choices. It is suggested that the medical and non-medical dimensions, considered together, could support improvements to the care of people with dementia (Deetjen et al., 2015). While the current focus of the ‘big data’ proposal is to enhance research to support better dementia diagnoses, as well as cures and treatments, dementia care related data could also provide a resource for understanding, assessing and improving the existing care provision for people with dementia. However, to facilitate this dementia care related data with the potential for reuse needs to be identified and made available in electronic and integrated formats in order for it to be possible to be considered part of a ‘big data’ initiative.

This paper will argue that Dementia Care Mapping (DCM) (Bradford Dementia Group, 1997; 2005; 2014), an internationally used dementia care quality improvement tool, offers a dataset which has potential to be used for secondary purposes as part of a ‘big data’ research solution for improving health and social care provision for people with dementia. Further, it is argued that data warehousing is the most appropriate technical solution for facilitating this within a data management framework. This paper will also propose a data model for a DCM data warehouse based on requirements collected from potential end users and existing data management solutions for DCM data.