Newcastle University: The Pri-Dem project

Background

Recent investigations into the quality of support that people receive after a diagnosis of dementia have produced some concerning findings. This includes the Alzheimer’s Society’s 'Dementia 2015' report, which found that nearly half of people with dementia receive inadequate support; and the 2016 World Alzheimer’s Report, which found that the current model for healthcare support is unsustainable and unaffordable. Other issues include a variability in the quality of care based on where you live, a consequence of the so-called ‘postcode lottery’.

This Centre of Excellence aims to answer some of the questions emerging from these reports. This includes understanding what ‘good practice’ is when it comes to support, understanding how different types of support affect the wellbeing of people with dementia and their families and what factors affect getting good support programmes put into practice. It will also address how people can access good quality support regardless of what area of the country they live in. 

Who is working on this project?

The team, led by Professor Louise Robinson, involves a wide variety of specialists from both the academic and clinical worlds, including practicing GPs, old age psychiatrists, health economists and specialists in nursing and social care. 

What will this research address?

Most diagnoses of dementia are made through specialist memory clinics. However, there is little evidence that memory clinics provide effective support after the person has been diagnosed. This is partly due to the very high demand there currently is on memory services as increasing numbers of people are referred for a diagnosis.

One way to improve care could be through ‘primary care’ routes such as GPs. Previous research suggests that this can deliver better services, improve the wellbeing of people affected by dementia, is low-cost and less subject to the ‘postcode lottery’ of variable secondary care services in different areas. 

The aim of this project is to develop and evaluate acceptable, feasible and sustainable models of care, which are centred on the person receiving the diagnosis. The models the researchers will develop are based around the idea that support after a diagnosis will be led by primary care services such as GPs and via community based services. 

What will the researchers do?

The researchers will explore the experiences of people affected by dementia, including those living with the condition, their carers and families and healthcare and service providers when it comes to support after a diagnosis. This will be their ‘Dementia Care Community’ who will bring various aspects of expertise to the project, including how to ensure that any approaches are dementia friendly. 

The project will also involve reviewing the effectiveness of existing programmes of primary care for other long term conditions such as diabetes and depression. The researchers will also look internationally for examples of good practice in dementia care, including from the Netherlands, which is often hailed as a gold standard when it comes to dementia care. 

The team will consult with their Dementia Care Community to gather views on suggested ‘good practice’ models of care. They will also understand what factors affect how new models of care are adopted into everyday practice. This includes whether GPs and community services will need any extra training and support to help to deliver these models of care.

They will then design models for good practice support based on the evidence they have gathered, focusing on the support being led from a primary care setting. This will take into account aspects such as cost-effectiveness and understanding how feasible the models are to those involved. 

The results of the study will then be communicated to people affected by dementia, healthcare professionals and commissioning guidance bodies.

How will this improve dementia care?

There is an urgent need to provide better support for people affected by dementia and their families once they have received a diagnosis. This project will take into account the expertise and experience from a wide variety of people to get a thorough and detailed understanding of how this can be done. 

The development of an evidence-based model of care that has been shown to be feasible and sustainable is of vital importance to ensure that good quality support is provided for everyone, regardless of where they live.

Details

Lead researcher: Professor Louise Robinson

Institution: Newcastle University

Themes addressed: Support after a diagnosis 

Amount committed: £1,680,224 over four years