NHS Hambleton, Richmondshire and Whitby CCG has started a new scheme to tackle the expected demand in healthcare services from elderly residents.

Commissioners estimate that by 2021 the number of people aged 65 and over within the local population will have increased by nearly a third (30%).

The scheme, Fit 4 the future, will focus on four main areas: staying healthy, long-term conditions, dementia and end of life care.

Dr Mark Hodgson, a governing body member, said the CCG wanted to hear from patients about “what they want from local healthcare and how we can work together to design future services.”

A series of meetings will be held by commissioners where people can attend and give their experiences of care, outline what they require from the NHS and discuss what’s important to them.

The CCG hopes it will then be better prepared for the expected increase in demand for health and social care as the elderly population increases.

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Research projects concerned with disorders such as dementia and multiple sclerosis have been destroyed by Italian ‘animal rights’ extremists.

Laboratories at the University of Milan and the associated National Institute of Neurosciences were invaded by activists who abducted laboratory animals and destroyed cage signs, wasting years of research.

The Basel Declaration Society, which campaigns for stronger ethical codes on the use of animals in medical research, has condemned the action as harming the future of biomedical research in Europe.

The projects targeted by the activists focused on neurological disorders including autism, Alzheimer’s disease, MS and Parkinson’s disease.

They abducted about 100 purpose-bred animals that need special care and so are unlikely to survive; and removed all cage signs, spoiling the ongoing research. The cost of the lost work has been estimated at nearly a million Euros.

Professor Zeller, President of the Basel Declaration Society, said: “Animal research remains an essential pillar of all biomedical research. In particular basic research in neuroscience, which is the focus of our Milan colleagues, is key to tackling the healthcare problems of aging European societies.

“Extremists who destroy laboratories and ‘liberate’ animals commit serious crimes and attack the core of our democratic principles.”

The Society has called for life scientists worldwide to show solidarity with their Milan colleagues by a number of means, including asking stakeholders in neuroscience to submit proposals and suggestions to alleviate the damage inflicted on the Milan research projects.

‘Animal rights’ extremists in the UK have repeatedly made bizarre claims to justify their attacks on research facilities – for example, the Animal Liberation Front leader, speaking on Newsnight, stated that all drugs are ‘petrochemical’ and therefore obviously without medical value.

For many years, the treatment and care of people with dementia suffered from medical impotence and society’s indifference. Now, this growing patient class is getting more attention. How is the revolution in dementia care affecting the UK market for Alzheimer’s disease drugs?

The word most often used to describe the care of people with Alzheimer’s disease (AD) and other forms of dementia in the UK is ‘shocking’. From official reports to newspaper headlines, the diagnosis, early-stage treatment and late-stage care of people increasingly unable to express themselves have repeatedly been found seriously inadequate. It has often been pointed out that the patients do not choose to forget, but their doctors, nurses and care workers sometimes do.

The problem is complex. AD was first described in 1906, and the misconception that ‘senility’ is a normal consequence of old age is still widespread. Because AD patients become progressively less able to make choices and express views, their power to influence their own care is limited. Partners and family members often find it easier to regard the patient’s condition as a kind of ‘death’ – and while such a view may be a way of coping with loss, for it to colour the mindset of health and care providers is unacceptable.

In terms of medication, AD presents further challenges. A neurodegenerative disease, AD is progressive and irreversible. There are drugs that can delay its progression (in the earlier or later stages) and temporarily moderate the symptoms, especially when combined with behavioural therapies. So far, that’s all that can be done. The use of antipsychotics to suppress disruptive behaviour in people with dementia is no longer accepted as a norm of treatment.

Public awareness of AD has benefited in recent years from the high-profile intervention of fantasy author Terry Pratchett, whose ‘Discworld’ novels are major bestsellers. Since being diagnosed with early-onset AD in his late fifties, Pratchett has worked to raise public awareness of the inadequacies of dementia care. A shocking (there’s that word again) fact is that he has had to pay privately for his own medication, as Aricept – which costs only £2.50 per day – is only approved by NICE for treatment of people aged 65 and over (an age Pratchett reaches on 28 April this year).

In an interview with Fiona Phillips, another campaigner for better AD care, Pratchett made the moving statement: “I think the best thing I ever did with my life was stand up and say I’ve got Alzheimer’s.” He noted that while people with cancer are recognised as having the right to immediate treatment, people with AD and their families are often “left to get on with it”. The NHS tries too hard to prolong life, he argued, but does not try hard enough to maintain quality of life.

Pratchett’s determination to challenge the stigma of AD and the under-achieving norms of care for people with the condition has certainly had an impact. But will future dementia treatment be able to prevent or cure AD – or is it, like the Discworld, doomed to a permanent ‘flat earth’ phase?

Quality of life

The dementia care revolution began with the Banerjee report (2009) into the over-use of antipsychotics in care homes and nursing homes to suppress disruptive behaviour in AD patients. Dr Sube Banerjee stated that about 145,000 people with dementia were being inappropriately treated with antipsychotic medication in the UK, and that these powerful drugs were causing around 1,800 deaths each year. He recommended that the number of patients given such treatment should be reduced by two-thirds.

The National Dementia Strategy ‘Living well with dementia’ (2009) outlined key objectives and outcomes to improve the diagnosis, treatment, care and support of people with dementia across the range of care locations and through the entire patient pathway. It sought to make dementia care more comparable, in terms of methods and expectations, to that of other life-limiting medical conditions, and to ensure that all roles within the care pathway were clearly defined.

In March 2012, Prime Minister David Cameron launched the ‘Dementia challenge’, calling for “an all-out fight back against dementia”. He noted that about 670,000 people were living with dementia in the UK, and the number was expected to double within 30 years. The challenge promised to make the provision of information for patients, carers and professionals about relevant local health and care services mandatory; and to double the public funding for research into dementia.

A year later, the DH launched a dementia nursing strategy that defined the skills and capabilities expected of general, “dementia skilled” and specialist nurses working across all care settings. Emphasis was placed on the need for “seamless” integrated care. Significantly for industry, the strategy requires nurses to be “research aware and committed to delivering evidence-based care”.

A four-card hand

These developments mean that the AD market is primed for effective medicines and strategies for optimising their use. What does pharma have to offer?

Four drugs are currently approved by NICE for treatment of AD: Aricept (donepezil) from Eisai, Reminyl (galantamine) from Shire, Exelon (rivastigmine) from Novartis and Ebixa (memantine) from Lundbeck.

The first three drugs are cholinesterase inhibitors: they inhibit the breakdown of acetylcholine, a neurotransmitter, thus compensating for the loss of neural transmission that occurs in AD. They are recommended for use in patients with mild to moderate AD (in a 2011 update to the original NICE guidance, which recommended them only for moderate AD). However, the patents on Aricept and Reminyl expired in 2012, while the Exelon patent was declared invalid by the Court of Appeal in January 2013 on the grounds that it was an “obvious” application.

Up to 70% of eligible patients benefit from receiving cholinesterase inhibitors, showing improvements in both cognitive and emotional health. In most cases, disease progression is delayed by only six to 12 months. Ebixa is the only drug recommended for use in patients with moderate to severe AD. Its action is linked specifically to the effects of AD: it blocks the chemical glutamate, which is produced excessively by damaged brain cells and triggers a cascade of further cell damage. Ebixa can help patients to maintain everyday function, and may also reduce anxiety.

Lundbeck’s patent for Ebixa expires in April 2014. The company has supported NHS organisations to review dementia patients and reduce the inappropriate use of antipsychotics such as risperidone – which are clinically appropriate only for a minority of patients with moderate to severe AD, and are associated with increased risks of falling and infection. Painkillers, which can be used safely as an adjunct to anti-dementia drugs, can also reduce behavioural symptoms.

Better medicines use

Two challenges face the pharmaceutical industry in relation to AD treatment. Firstly, can it work with healthcare providers to optimise medicines use in the context of integrated care? Secondly, can it develop drugs that go further in preventing and treating AD than those currently available?

One company that has been active in medicines optimisation is Lundbeck, mental health specialist and manufacturer of Ebixa. As part of its partnership strategy, Lundbeck UK has supported a number of organisations in improving dementia care. The clarity of the 2011 NICE guidance on the use of AD drugs has made it easier for Lundbeck to work with the NHS in this disease area.

For example, Lundbeck’s project with NHS Sandwell (now replaced by Sandwell and West Birmingham CCG) used an Integrated Performance Framework to drive change in clinical practice. The project, which was described in an HSP Partnership in Practice supplement in 2012, had two goals: to build on the existing mapping and reduction of inappropriate prescribing of antipsychotics in care homes; and to help develop a local tool to support care home staff and enable GPs and psychiatrists to work together more.

NHS Sandwell, Lundbeck and performance consultancy Res Consortium formed a working group together with local health and care stakeholders. The project focused on AD patients with behavioural symptoms referred to locally as ‘Distress Reactions’, who were likely to be on antipsychotics and to need emergency admissions. Lisa Hill, Senior Commissioning Manager for mental health at Sandwell PCT, described the project as “a positive piece of integrated working resulting in a clear pathway and developing clinical leadership to address a complex issue”.

A brighter future

As with cancer, the targeting of disease mechanisms at the cellular level promises to deliver more effective AD treatments. The pipeline includes therapies based on two novel targets: Lundbeck and Otsuka have formed a partnership to develop and license a selective 5HT6 receptor agonist for use as an adjunct to donepezil; and a new UK biotech company, CoCo Therapeutics, has formed to develop new AD drugs targeting the retinoic acid receptor gene.

Dr Simon Ridley, Head of Research at the charity Alzheimer’s Research UK, commented: “A treatment that could stop the disease in its tracks would be a ‘holy grail’ for Alzheimer’s researchers.

“Much of the current efforts to develop new drugs for Alzheimer’s are focused on a protein called amyloid, which builds in the brains of people with the disease. Drugs designed to target amyloid have not yet shown benefits for patients in clinical trials, but it may be that these trials were carried out too late in the disease process.

“We now know that amyloid build-up occurs years before symptoms first appear, and many researchers believe that drugs targeting amyloid will need to be given early.

“Work to uncover potential new treatment targets must also continue,” Dr Ridley added. “To make the fastest progress, it’s vital to keep researchers talking to each other, which is why at Alzheimer’s Research UK we are working to connect our scientific teams with the pharmaceutical industry.”

NHS Wakefield CCG has joined a campaign to raise the awareness of dementia to improve early diagnosis rates.

The CCG has joined forces with Wakefield Council and the Alzheimer’s Society to promote the early signs and symptoms of the condition.

Councillor Pat Garbutt, Cabinet Member for adults and health, said it was critical in identifying the early onset of dementia to ensure GPs help patients as soon as possible.

The campaign encourages residents with any concerns to make an appointment with the GP as soon as possible. Although there is no cure, spotting the early signs of the condition allows patients to receive the best possible treatment and care to ensure they continue to lead active, fulfilling lives.

Although symptoms depend on the particular form of the condition, memory loss, trouble thinking and understanding language and judgement are all typical signs of dementia.

The CCG, which has around 354,000 registered patients, has identified dementia as one of its clinical priorities to improve health outcomes locally.

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NICE has described the existing social care provision for people with dementia as ‘patchy’ and struggling to catch up with the increased demand.

As it extends its remit to social care, NICE (now the National Institute for Health and Care Excellence) has outlined standards for dementia care provided by social services and care homes.

However, it warned that some people with dementia were not even receiving basic care to a minimum standard.

Following the DH’s national dementia nursing strategy, the new NICE guidance aims to ensure that the social care sector maintains a comparable standard to, and is effectively integrated with, NHS care.

It covers such broad aspects of life for people with dementia as appropriate housing and access to dental services and community life.

“The general picture is that care is patchy,” said NICE’s Deputy Chief Executive, Professor Gillian Leng (pictured).

“My personal view is that we are all playing catch-up because the number of people with dementia has been increasing so dramatically.”

George McNamara of the Alzheimer’s Society commented: “These standards will be a useful tool for the care sector and show what people with dementia and carers should be able to expect.”

However, he warned, “as they are not mandatory, it’s a case of ‘wait and see’ as to whether this guidance will drive real change or just sit on the shelf.”

The Department of Health has launched a “vision and strategy” to support and develop the contribution of all nurses to the care of dementia patients.

The strategy, published as the Prime Minister’s Dementia Challenge reached its first anniversary, describes what is expected of general, “dementia skilled” and specialist nurses working across all care settings.

Significantly for industry, the strategy requires nurses to be “research aware and committed to delivering evidence-based care”.

Listing the values and behaviours necessary for nurses involved in dementia treatment and care, the strategy includes:

• recognising that dementia “brings cognitive, behavioural and physical changes”

• supporting advance care planning

• promoting patient choice and focusing on “strengths and unmet need”

• using “all available resources including networking, technology and social media to improve care and access to services”.

A pyramid of nursing care is outlined, with all nurses providing “usual care and support”, dementia skilled nurses providing “assisted care or care management”, and dementia specialist nurses providing “intensive or case management”.

Emphasis is placed on the need for “seamless” integrated care across a range of settings: home, community and hospital.

The strategy addresses the responsibilities of nurses not only in the NHS but also in social care, the prison service and the private and voluntary sectors.

Pauline Watts, DH Nurse Lead for Dementia Care, commented on the launch of the strategy: “Dementia is every nurse’s business – with a change in mindset, practice, commissioning and education, nurses can make a real difference to people living with dementia and their carers and families.”

CoCo Therapeutics, a new biotech company specialising in dementia treatment, has appointed Dr Steve Butcher as its Chief Operating Officer.

The London-based company has also appointed five clinical and scientific advisors, including Dr Butcher and Professor Jonathan Corcoran, the company’s founding scientist.

CoCo is developing innovative therapies for Alzheimer’s disease based on a novel target: the retinoic acid receptor alpha (RAR-alpha) gene.

Dr Butcher was Scientific Director of the Fujisawa Institute of Neuroscience before holding executive positions in pharma (Pharmacia) and biotech (BioImage and TopoTarget).

Raj Parekh, CoCo Chairman and General Partner at Advent Venture Partners, said: “We are pleased that an individual of Steve’s calibre is now leading the programmes at CoCo Therapeutics. The Board looks forward to working closely with Steve to evaluate RAR alpha agonists in Alzheimer’s disease.”

In addition to Dr Butcher, CoCo has made four appointments to its Clinical and Scientific Advisory Group:

• Professor Clive Ballard – Co-Director of the Biomedical Unit for Dementia at the Institute of Psychiatry, Co-Director of the Wolfson Centre for Age Related Diseases, Kings College London and Director of Research for the Alzheimer’s Society.

• Professor Jonathan Corcoran – Director of the Neuroscience Drug Discovery Unit, Wolfson Centre for Age Related Diseases, Kings College London.

• Roy Lobb – consultant to the biotechnology industry, specialising in early drug discovery research.

• Andrew Wood – Venture Partner at Advent Venture Partners, formerly involved in R&D and business development at Eli Lilly.

CoCo’s RAR-alpha agonist drug development programme is based on research by Professor Corcoran’s laboratory at King’s College London that implicated the RAR-alpha gene in Alzheimer’s disease.

An entrepreneurial team within Janssen’s R&D operation is working with the NHS to promote innovative dementia care.

Janssen Healthcare Innovation and the NHS have partnered to launch the Innovation Challenge Prize for Dementia.

The biopharma company, a subsidiary of Johnson & Johnson, will award up to £150,000 for solutions that make a lasting difference to the lives of people suffering from dementia.

As a first step, people involved with dementia care as healthcare providers, carers, patients and patient groups are being encouraged to identify the key issues in diagnosis, treatment and management of the condition.

Once the challenges have been agreed, relevant stakeholders will be able to submit innovative solutions to be assessed by a panel of experts from the NHS, industry and academia.

The ageing population is driving up the incidence of dementia in the UK: the terminal condition is estimated to affect 800,000 people, with the cost of NHS care predicted to rise from £23bn to £28bn by 2018.

“We are delighted to be the first industry partner to support the NHS in these important innovation challenges,” said Marco Mohwinckel of Janssen Healthcare Innovation (pictured).

“We hope this initiative will help identify forward-thinking solutions to help transform care for people with dementia and better support their caregivers.”

The deadline for ideas to help define the key challenges is 20 March 2013.

Staff at Surrey-based company Vifor Pharma UK (VPUK) have given a day of their time to assist three charities in meeting the needs of the local community.

One VPUK volunteer team helped the Oakleaf charity, which provides training for people with mental health problems, to renovate its premises.

Another team assisted the renovation of the Lighthouse Project in Woking, a community facility for underprivileged people.

A third team organised carol singing and other activities with elderly residents living with dementia at Heathside residential home in Woking.

Derek Williams, General Manager of VPUK, said: “We remain committed to our social and environmental responsibility, despite a busy couple of years in which we have grown as a company.

“This charity day allowed us to give back to the community and all three of the charity projects were genuinely touched by team Vifor Pharma’s enthusiastic support and we will be aiming to organise another such volunteering day next year.”

Based in Switzerland, Vifor Pharma specialises in discovering, developing, manufacturing and marketing drugs to treat iron deficiency, including both prescription and OTC medicines.

Beta-blocker drugs may reduce the risk of dementia, according to a US study by researchers at the University of Hawaii based on post mortem analysis.

The study found that the brains of men whose hypertension was treated with beta-blockers showed fewer signs of dementia than those of men treated with other blood pressure drugs or none at all.

Experts have called for further research to explore the relationship between beta-blockers, blood pressure and dementia.

Hypertension is a known risk factor for vascular dementia, as well as for strokes and heart attacks.

The 774 male patients in the study were all of Japanese-American ethnicity, and research to establish whether the conditions apply to all ethnicities is needed.

The study found that all types of blood pressure medication reduced the risk of the brain showing post mortem signs of dementia: overall brain shrinkage and tiny areas of brain tissue damage.

However, men who had received beta-blockers showed fewer brain abnormalities than those who had received other blood pressure medications, singly or in combination with beta-blockers.

Study author Dr Lon White said: “These results are exciting, especially since beta-blockers are a common treatment for high blood pressure.”

“This study suggests a link between the use of beta-blockers and fewer signs of dementia, but as the results of this study have yet to be published in full, it’s not clear what caused this link,” noted Dr Simon Ridley, Head of Research at Alzheimer’s Research UK.

“With 820,000 people affected by dementia in the UK, and that number increasing, we urgently need to find ways to prevent the diseases that cause it – that requires a massive investment in research.”