Abstract

Objectives: In order to model the impact of changes, in terms of costs and outcomes, of changes in the availability of interventions or services for people with dementia and their carers, it is necessary to know how many people are currently accessing those services, and also what necessary actions or services that need to happen before someone can access a service or treatment. For example, in order to increase the number of people accessing post-diagnostic support services, it may be necessary that more people are diagnosed.

Methods: We have developed a “care pathway simulation model” that describes, in terms of numbers of people, costs and, where possible, outcomes, the current care, treatment and support, experienced by people living with dementia and their carers in England. We have developed separate pathway models for people with dementia and for carers. The pathway model for people with dementia is structured in five parts: pre-diagnostic to referral to diagnostic services, the diagnostic process, post-diagnostic support, ongoing care and end of life care.

The current version of the model summarises how people can potentially move across the dementia care pathway, using a series of linked decision tree models. It has been built by searching official data, analysis of primary level data and in consultation with academics, clinicians, charities, people with dementia and family carers. This model is linked to other models developed as part of the MODEM research project.

Results: While it is possible to identify a care pathway for people with dementia in England until the first year of post-diagnostic support, and there is national data to monitor diagnostic rates and some aspects of post-diagnostic support, in part reflecting the fragmented nature of the health and social care systems, it is difficult to trace what happens to people with dementia beyond the point of diagnostic using official data, particularly for people who are not entitled to publicly-funded social care. We have used data from the MODEM cohort, weighted using national surveys, to try to identify care and support for people with dementia and their carers and have highlighted information gaps.

Conclusion: there are many information gaps about the dementia care system in England. While the first part of the model, which cover the diagnostic process are relatively well covered in terms of data availability and quality, it becomes very difficult to locate data, other than through non-national surveys, about the use of longer term health and social care services by people with dementia and their carers. It also becomes clear that there are no mechanisms to ensure that people receive person-centered care that is well coordinated across the different services that can contribute towards meeting their needs.