Dementia is a devastating condition that places major burdens on patients, carers and society. Despite this, very few large studies have attempted to describe what happens to people after they receive a diagnosis of dementia.
We aim to describe the healthcare experience of people with dementia from the time they are diagnosed until their death. To do this we will bring together the different information held in nationwide databases from GPs, hospital admissions, cancer and death registries.
We will identify different clinical pathways experienced by dementia patients, including those within established clinical sub-groups of dementia (e.g. Alzheimer's, vascular dementia). We also want to describe how dementia interacts with other health conditions common in older people; for example dementia in patients with type-2 diabetes or stroke.
This work is important as there is currently no "cure" for dementia, only a handful of medications that help with symptoms for a limited amount of time. By understanding more about the different clinical pathways of dementia patients we aim to identify opportunities to help improve their care by meeting the specific needs of these patients. Findings will also help inform allocation of NHS resources and could improve design of clinical trials to find new medications.
The detailed post-diagnosis experience of people with dementia, their interaction with the healthcare system, co-morbidity profile and treatment pathway remain largely unknown. Dementia is widely acknowledged to be heterogeneous disease; however it remains unknown how progression varies between and within sub-types (e.g. Alzheimer's, vascular dementia and rare dementias such as frontotemporal dementia or Lewy body dementia) and how it is influenced by the co-existence of other comorbidities common in older people (e.g. type-2 diabetes, stroke etc.).
In this study we will use electronic health records to track the progression pathway of a large cohort of individuals diagnosed with dementia (N~240,000) using previously validated algorithms for identifying sub-groups of dementia patients in CPRD/HES data. Linkage of primary and secondary care records with cancer and mortality registries will facilitate a detailed description of the post-diagnosis experience of patients and interaction with the healthcare system; their symptoms and complications, prescriptions/ medications received, reasons for hospitalisations, treatments, timing and causes of death.
A better understanding of heterogeneity in dementia progression will yield important information to inform guidelines for treatment and management of dementia patients, improve resource allocation and inform the design of clinical trials by helping to optimise selection of patients with specific profiles.
Analyses will be restricted to the most common causes of death, hospitalization and consultation in primary care that occur within the NHS.
Objective 1:
i) Mortality
- All-cause mortality and Cause of death (ONS)
ii) Non-fatal disease outcomes from secondary care
iii) Non-fatal disease outcomes from primary care
Objective 2:
For this objective the health outcomes will be the detailed temporal sequence of events (fatal and non-fatal) experienced by people with dementia. Multiple temporal sequences will be identified, according to key sources of heterogeneity (e.g. dementia sub-type, presence of co-morbidities). Health events included will be limited to those identified for Objective 1.
Sheng-Chia Chung - Chief Investigator - University College London ( UCL )
Sheng-Chia Chung - Corresponding Applicant - University College London ( UCL )
- Collaborator -
Arturo Gonzalez-Izquierdo - Collaborator - University College London ( UCL )
Caroline Dale - Collaborator - University College London ( UCL )
Dionisio Acosta Mena - Collaborator - University College London ( UCL )
Juan Pablo Casas Romero - Collaborator - University College London ( UCL )
Kamran Khan - Collaborator - University College London ( UCL )
Spiros Denaxas - Collaborator - University College London ( UCL )
Valerie Kuan - Collaborator - University College London ( UCL )
William Whiteley - Collaborator - University of Edinburgh
HES Admitted Patient Care;NCRAS Cancer Registration Data;ONS Death Registration Data;Patient Level Index of Multiple Deprivation