People in charge of dementia care face many grave difficulties

an investigational drug. Shaw describes the trial results as “a game-changer for MND.”

“Never before have I seen patients say, “I’m getting better; I’m doing things today that I couldn’t do a few months ago.”

“Patients with SOD1 mutations are relatively rare, but this trial will change the future of MND trials. We can now investigate other genes that cause MND and measure the effects of treatment much quicker,” she adds.

Promising future

The Neuroscience Institute is constantly enhancing its capacity to develop better devices for neurological disability and continues to form industry partnerships to develop treatments.

The University of Sheffield is a leader in gene therapies; a promising approach to treating neurological disorders. A new gene therapy centre (GTIMC) dramatically broadens the scope of gene therapy research in the UK and will translate scientific discoveries into new treatments.

“We want to strengthen the power of neurosciences to find better solutions for people with neurological disorders,” Shaw concludes.

Read more at sheffield.ac.uk/neuroscience-institute

Project Manager: Matthew Stead

Dr Emma Wolverson Research Lead at Dementia UK and Senior Lecturer in Ageing and Dementia, The University of Hull, UK

Dementia is the leading cause of death in the UK, and the number of people dying from dementia will double by 2040.

Arecent survey found that only 42% of the British public is aware that dementia is a terminal illness. Concerns have been raised that, in an effort to reduce stigma and encourage people to seek an early diagnosis, messages about ‘living well’ with dementia may have inadvertently silenced conversations about the advanced stages of the condition and its life-limiting and progressive nature.

Conversations around dying

Failure to recognise dementia as a terminal illness impacts the end-of-life care provided to people with dementia. Currently, people with dementia and their families face inequalities in access to palliative and end-of-life care services.

As a result, people experience frequent transfers to and from hospitals, burdensome and invasive treatments and poor pain management.

Dying with dementia is different Dementia is often wrongly regarded as being no different from other conditions that people die from. But providing end-of-life care for people with dementia requires a high level of skill, as they tend to live with multiple chronic health conditions and frailty. This makes their care complex.

The course of dementia is difficult to predict. It does not fit in well with existing palliative or hospice models of care, and there is no one specialist with a clearly defined role to care for the person with dementia during this time.

Healthcare staff often report lacking the knowledge, skills and confidence to support people dying with dementia who are unable to communicate their needs and preferences in the advanced stages of the condition.

Involving families

Most people living with dementia are cared for by a family member. As a person approaches the end of their life, exhausted family members who are experiencing anticipatory grief, witnessing distress and disorientation are often asked to become proxy decision-makers. Life and death decisions are quite literally demanded of them. Many have never had important conversations with their relatives about their wishes in such a situation. Clinicians may witness disagreement from family members as a result of a lack of understanding and preparedness.

Dementia UK researchers are leading the way in pioneering research to explore what a good death looks like for people with dementia. The charity is also collaborating with the European Association of Palliative Care to review the definition of optimal palliative care in dementia.

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New treatments are urgently needed to support patients with dementia as cases, globally, are set to soar beyond the 150 million mark by 2050.

As people live longer, dementia cases are rising and could soon hit 150-plus million worldwide.

Yet, there has been no new dementia treatment in the UK for two decades.

The most common cause of the neurodegenerative disease is Alzheimer’s, accounting for 60–70% of all cases, but other causes include vascular dementia, frontotemporal dementia and chronic traumatic encephalopathy.

Complexity for patients with dementia

Professor Bjoern Schelter explains there can be lengthy diagnostic pathways for the condition, starting with early symptoms of people forgetting things more often.

“From there,” he continues, “it is a consultation with a primary care physician, specialist appointments and further assessment. These can be questionnaire-based, involve neuroimaging and blood tests, and it often takes 6–12 months for a diagnosis.”

Dr Miller, Head of Medical Affairs at Aberdeen-based TauRx, a company focused on neurodegeneration therapies targeting tau pathology, points to the extraordinarily long journey toward new dementia drugs. However, she also believes much of the research and complex trials conducted since the early 2000s are coming to fruition.

Ongoing clinical trials

One driver of Alzheimer’s is an accumulation of aggregated tau protein inside nerve cells. TauRx is developing a potential treatment targeting this pathology directly, which is in the latter stages of clinical trials.

The company’s CEO and co-founder, Professor Claude Wischik, says that if the results continue to be positive, it will accelerate diagnosis and treatment. The drug, and smarter diagnostic tools, will “empower primary care physicians to become active much earlier in the whole patient journey.”

While his organisation has concentrated on the development of a drug to target the process of tau aggregation directly, he also acknowledges other parallel research looking at amyloid pathology.

Modernising the diagnostic process

Meanwhile, Professor Schelter, CEO of TauRx sister company GT Diagnostics — which is working to develop digital and artificial intelligence (AI) tools to enhance the diagnostic process, reduce the timeline to diagnosis and support early treatment — says dementia diagnostics need to be brought into the 21st century.

“We need robust diagnostics that can detect the disease at very early stages and very efficiently, in a primary care setting.”

While GPs are under increasing pressure, his colleague Dr Sonya Miller believes there’s an opportunity for family doctors to take a more proactive role; but to do this, they need support and better diagnostic tools.

“GPs are a logical group to be empowered to take this on. Dementia is a complex disease and an increasing problem that cannot remain a speciality disease.”

Growing demand for treatments

Dr Miller says patient advocacy groups do an amazing job of raising awareness and working to destigmatise the disease and offer support to patients and families.

“Next, we need support of primary care providers to recognise, diagnose and refer as required,” she says.

A concern has been the lack of new treatments, at a time when more people are needing diagnosis and treatment.

With 152 million people expected to be suffering from dementia by 2050, the fear is that healthcare systems could be overwhelmed without new treatments. “A safe and efficient treatment is needed to stop the disease process very early on, then these diagnostic tools become monitoring tools for the effectiveness of treatments,” he says.

Rethinking brain health

Within the diagnostic and monitoring process, smartphones/tablets can use intuitive AI to interpret psychometric questionnaires, blood tests and brain imaging.

Patients also need to be proactive in keeping their brains healthy through lifestyle choices, says Dr Miller: “We require a whole societal paradigm shift in thinking about brain health.”

Underpinning that, she adds, are new diagnostics and an oral medication for dementia. By treating dementia with more urgency, we can be better prepared to manage it — today and in the future.

Dr Farrar liaises with physicians responsible for referring and scanning patients, keeping them abreast of new trends and image analysis methods and supporting their research efforts.

How has your role evolved in recent years?

The trend is towards using software tools to enhance image interpretation as well as collaborating with consortiums such as AMYPAD In Alzheimer’s disease and PPMI (sponsored by MJ Fox Foundation) in Parkinson’s disease.

How do neurology imaging agents work?

Molecular imaging tracers bind to brain pathology (proteins that are abnormally present or contain structural deficits not present in a healthy person) and are labelled with a short-lived radioisotope. Once administered, the radioisotope decays and emits energy or particles detected by a camera, and the image is then reconstructed, showing the absence or presence of pathology.

The tracer Vizamyl targets amyloid, a seminal feature of Alzheimer’s disease (AD), and is seen at an early stage of the disease. In Parkinson’s disease (PD), the tracer DaTSCAN detects the loss of dopaminergic neurones. DaTSCAN differentiates both PD from essential tremor; and dementia with Lewy bodies from AD.

Both tracers are used in combination with clinical work-up and provide adjunctive information about the pathological status of the patient.

What value does the scan bring to the patient?

In routine clinical work-up, the signs and symptoms of these neurological diseases are quite difficult to tease apart.

We are directly imaging in the brain the neuropathology associated with that disease. The scan adds a huge amount of weight to the final clinical diagnosis. Once a diagnosis has been established, the patient and their families — with the physician — can plan for the future.

How might these tracers be used in the future?

For the Vizamyl agent, the advent of new anti-amyloid therapies could potentially designate a patient as amyloid-positive and hence receive and possibly monitor therapy impact. For DaTSCAN, the current focus is on early disease detection and, in combination with software tools, could aid a more timely diagnosis.

Dr Gill Farrar Global Medical Leader Neurology, Medical Affairs, GE Healthcare