Identifying the Course of Dementia Using Medical Records: the CoMed Study

The number of people living with dementia is increasing as the population ages. The UK government has initiated a "Dementia strategy" to respond to this increase, and has set four main goals; 1) to identify those with dementia as early as possible, 2) to prolong their independence, 3) to reduce the need for hospital and nursing home admissions, and 4) to delay the time until death. So far lots of research has looked at what factors might cause or increase the risk of dementia, but less is known about how dementia affects people over time once they have dementia. One of the quickest and efficient ways to identify the actual course of dementia may be to use existing medical records from primary care. Primary care medical records are those kept by the patient's GP. Having the ability to look at the course of dementia over time in these records will help identify people who have a different course (for example a faster and more severe course) and also identify the factors that alter that course. This information would be useful to clinicians and indicate potential targets for treatment in the future to alter the course of someone's disease. To assess whether this is possible, around 1000 patients with dementia who have recently been seen by a dementia service (where patients with a diagnosis of dementia are seen normally every year) will be contacted. Consent to link their primary care medical records (medical records kept by their GP) to their dementia service medical records will be sought. The target for recruitment is 400 patients who will provide consent. Then the assessment of how well the potential markers of disease progression identified from primary care medical records relate to actual changes in disease course from their dementia service medical records can be determined.