Transforming care for people with dementia

Collaborative partnerships between industry and government are bringing together best-in-class knowledge and processes needed to drastically improve care for dementia sufferers, globally. Cara Afzal, Senior Programme Development Lead at Health Innovation Manchester, discusses the progress being made. 

One million people in the UK will have dementia by 2025, increasing to two million by 2050, according to Alzheimer’s Researchi. Alzheimer’s disease is the most common type of dementia, affecting two-thirdsii of those diagnosed. Globally, the number of people living with dementia will increase from 50m in 2018 to 152m in 2050, a 204%iii increase and a stark indication of the challenge that lies ahead – for the NHS, government and industry.

Living with dementia affects everything from a person’s feelings, thoughts and responses. For example, someone may be irritable, or prone to rapid mood changes. They may also appear uninterested, or distant. This means that dementia can also affect those close to the sufferer, causing distress and a sense of isolation from someone they care deeply about.

Last year, Health Innovation Manchester – which brings together industry and academia with health and social care to accelerate innovation across Greater Manchester – commenced the development of an Early Dementia Diagnostic Framework. Working with academia; the healthcare system; life sciences industry partners – including Janssen, a pharmaceutical company of Johnson & Johnson – commissioners; and providers within the region, we’re considering ways we can prevent the onset of dementia, in future.

A key part of this was establishing a partnership with the Dementia Industry Group (DIG) – a life sciences industry collaborative group, of which Janssen is a core member, along with other pharmaceutical companies. They support the UK in leading the field of dementia treatment and research. Together, we set out principles for collaboration and the following framework workstreams, all of which will tackle the issue of dementia like never before:

  1. Public involvement and engagement – to increase detection of symptomatic people
  2. Risk profiling and biomarkers – to better identify the specific needs of symptomatic people
  3. Data access and platform development – to enable effective screening and recording
  4. Future care pathway and tracking development – to outline the process and to better support those affected
  5. Ethics, regulatory aspects and health economics – to address the ethical and regulatory aspects of a detection framework
  6. Funding and intervention – to address the affordability aspect for new interventions in dementia

Our overriding vision is to improve outcomes in dementia by ensuring optimal access and uptake of innovative technologies and treatments for eligible patients; as well as ensuring the healthcare system is geared up to provide the best support for people living with dementia.

The six workstreams outlined, each have experts from the collaborating parties of the partnership working to a December 2018 deadline to produce a set of practical recommendations for making an early dementia diagnostic framework a reality. With a feedback event being planned for early next year, these exciting times are really gathering pace.

The early warning signs of dementia have never before been systematically documented for analysis, and having a framework in place to fully support those affected will be key to delivering more personalised care.

The ultimate aim of the framework is to act as a functioning early diagnostic marker in clinical practice, so when disease-modifying treatments become available, people who may benefit can be rapidly identified and treated in time.

If successful, the extensive dementia treatment framework being devised in Manchester has the potential to be replicated across the partnership network and rolled out globally – positively impacting the millions of people affected by dementia, and their loved ones.  We already have a strong history of collaboration with industry in Greater Manchester, which thanks to our devolved health and care system and excellence in academia and research, makes us the perfect test bed for a project such as this.

This is where our partnerships with leading organisations in the life science industry such as Janssen, are so beneficial. The expertise and global reach that these industry partnerships bring, have the potential to help us to go beyond Manchester and tackle the issue of dementia worldwide. Collaboration with industry partners offers the potential of accelerated access for appropriate patients to innovative treatments of the future.

The overall cost of dementia to the UK economy alone is £26.3bn every year, more than cancer (£12bn) and heart disease (£8bn) combinediv. There is considerable work ahead of us, but through this partnership we have laid the foundations for significant change.

 

i Dementia Statistics. Dementia Statistics Hub. [online] Available at:

https://www.dementiastatistics.org/statisticsaboutdementia/prevalence/ [Accessed 21. 08. 2018] ii Dementia Statistics. Dementia Statistics Hub. [online]

https://www.dementiastatistics.org/statistics/differenttypesofdementia/ [Accessed 22. 08. 2018] iii Dementia Statistics. Dementia Statistics Hub. [online]

https://www.dementiastatistics.org/statisticsaboutdementia/prevalence/ [Accessed 21. 08. 2018] iv Dementia Statistics. Dementia Statistics Hub. [online]

https://www.dementiastatistics.org/statistics/costandprojectionsintheukandglobally/ [Accessed 22. 08.

2018]

This blog was developed in partnership with Janssen, a pharmaceutical company of Johnson & Johnson, and a sponsor of NHS Expo 2018