Parkinson's News: Summer 2008

Parkinson’s News A Quarterly Bulletin for Health and Social Care Professionals

Professionals want training on Parkinson’s and mental health New results from an England-wide Parkinson’s Disease Society (PDS) study have revealed a critical need for health and social care professionals to be trained on the mental health symptoms associated with Parkinson’s.

Many people with Parkinson’s often face mental health problems such as depression, dementia and compulsive behaviours. The PDS has become aware through our members that mental health is often an overlooked aspect of Parkinson’s and its management. What’s more, this was a key finding in our recent Members’ Survey – the largest ever study of people with Parkinson’s and their carers in the UK. Last year, the PDS started the Parkinson’s and Mental Health Education Project to look at the level of knowledge of Parkinson’s and associated mental health issues among professionals, and determine any training needs.

Over 470 professionals, including GPs, social workers, therapists and nurses, responded to an online questionnaire. In addition, there was a separate telephone consultation with PDS members.

Lack of knowledge, need for training The results revealed a worryingly low awareness of the mental health aspects of Parkinson’s: • One-third of professionals are not confident in identifying the mental health symptoms associated with Parkinson’s • Half of professionals have not received any training in this area in the last two years

•M ore than 80% of professionals are keen to learn more about the mental health aspects of Parkinson’s

What the PDS is doing The PDS is committed to improving the quality of care delivered to all people with Parkinson’s. We are working hard to tackle the knowledge gap and boost awareness among professionals.

“Our study has clearly identified the need for professionals to increase their understanding of Parkinson’s and related mental health issues.

“The PDS is keen to use this data to enable professionals to find practical ways to help their patients have the best quality of life.”

Daiga Heisters, National Education Advisor The PDS is now planning a new training programme designed for professionals. Five programmes will be piloted across the UK from February 2009.

To find out more, contact Jackie Spencer, Mental Health Project Manager, by emailing jspencer@parkinsons.org.uk The Parkinson’s and Mental Health Education Project report will be available soon to download from the PDS website.

Summer 2008 Issue 31

In this issue What’s new Professionals want training on Parkinson’s and mental health Championing specialist nurses in Parkinson’s PDS celebrates success of Human Fertilisation and Embryology Bill PDS campaign victory DBS funding reinstated in Wales All-Party Parliamentary Group on Parkinson’s Social care shake-up PDS supporting therapists New Carers Strategy launched Step closer to dementia strategy in England Life with Parkinson’s today – room for improvement

1 2 3 4 4 5 5 7 8 9

My view on… mental health Caring for my husband who has Parkinson’s Disease Dementia PDS Helpline Nurse Adviser One patient’s journey with depression and Parkinson’s Parkinson’s Disease Nurse Specialist Consultant clinical neuropsychologist Consultant old age psychiatrist

12 14 16 17 19 20

Supporting professionals Out of stock – 6mg and 8mg Neupro® 21 Training on Parkinson’s and mental health 22 PDS conference on mental health and Parkinson’s 23 Recent advances in diagnosis and treatment of Parkinson’s disease 24 Dates for your diary 25

Parkinson’s research New research articles Drug update

26 36

PDS mental health resources

40

Championing specialist nurses in Parkinson’s The Department of Health has published a new guide that promotes the benefits of specialist nurses in the care of people with long term neurological conditions.

Delivering expert care in Parkinson’s People with Parkinson’s consistently report that their nurse is the most significant healthcare professional in their lives.

Since 1994, the PDS has invested more than £8million in Parkinson’s Disease Nurse Specialists (PDNSs). As a result, there are currently more than 230 of them working across the UK. PDNSs play an integral role in co-ordinating the care of someone with Parkinson’s. They help people control their symptoms effectively by reviewing medication, offering easy access to support, information and advice, and linking people to other valuable services, such as physiotherapy and occupational therapy.

PDS boosting specialist nurses The PDS has helped many local teams across the UK build a specialist nursing service. We can finance a new PDNS post for two years, providing that the local health organisation agrees to pick up the funding afterwards.

The PDS, alongside the MS Society and Epilepsy Action, partnered the Department of Health and Royal College of Nursing to develop the guidance for the NHS in England.

Commissioners can gain better understanding of how PDNSs contribute to meeting healthcare targets and standards in England, Scotland and Wales from the PDS resource Commissioning Parkinson’s services: The clinical and financial value of Parkinson’s Disease Nurse Specialists.

To get a copy of the leaflet, call 020 7963 9370 or email pr@parkinsons.org.uk

The document, called Long Term Neurological Conditions, a guide to the development of the multidisciplinary team and the value of the specialist nurse, is the outcome of a specialist nursing summit held in 2007 between the Health Minister Ivan Lewis and leading neurological charities. At this summit, the PDS raised concerns about threats to specialist nurse posts and the Minister gave his commitment to develop this good practice guide.

The guide informs health commissioners and services providers for people with long term neurological conditions.

It shows that effective care can be delivered by ensuring the best workforce, planning and treatments are in place.

In particular, the role of the specialist nurse has been emphasised with a number of good practice examples from across the country.

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Long Term Neurological Conditions, a guide to the development of the multidisciplinary team and the value of the specialist nurse guide can be downloaded from www.healthcareworkforce.nhs.uk/resourcelibrary

Summer 2008 Issue 31

PDS celebrates success of stem cells Bill Following an energetic 18-month campaign by the PDS, the future of an important new area of stem cell research looks like being secured.

In June, MPs voted for proposals in the Human Fertilisation and Embryology (HFE) Bill allowing scientists to continue developing techniques using mixed human/animal embryos – also known as cytoplasmic hybrids. This will ensure that scientists in the UK can carry out vital medical research into devastating conditions like Parkinson’s that currently have no cure.

There is a critical shortage of human eggs and embryos to generate stem cells for research. Stem cells are unspecialised cells that have the ability to turn into different types of cells, such as nerve, skin and blood. Because they are so versatile, stem cells could potentially be used in brain transplants to replace the nerve cells lost in Parkinson’s.

In recent months, scientists have been granted research licences to create cytoplasmic hybrids. These are created by fusing the nucleus of an adult human stem cell, like a skin cell, with an animal egg that has no nucleus. Stem cells are then extracted from cytoplasmic hybrids for research experiments only.

The HFE Bill brings research involving cytoplasmic hybrids under the same rigorous ethical and regulatory framework that already exists for human embryonic research.

Cytoplasmic hybrids are only permitted to grow in the laboratory for up to a legal maximum of 14 days. Stem cells derived from cytoplasmic hybrids could never themselves be transplanted into a human or any other animal.

“The PDS has worked very hard to campaign, raise awareness and build support for research into cytoplasmic hybrids.

“We believe that research should be allowed into all types of stem cells. This gives scientists the best chance for developing a potential cure for people living with Parkinson’s.”

Steve Ford, Chief Executive of the PDS

PDS staff and supporters making their voices heard at Westminister

In autumn, MPs in the House of Commons are due to debate and vote on the remaining stages of the HFE Bill. It is expected to become law, which will come into force over the next few years. The PDS is delighted with the headway made to date. We have campaigned very hard throughout the Bill’s parliamentary passage.

Our campaign has involved lobbying Government ministers and parliamentarians, securing influence through the media, submitting evidence to two parliamentary committees and contributing to the Human Fertilisation and Embryology Authority’s own consultation on this issue. PDS members have also played a valuable role in this success by writing to their local MPs and urging them to support and vote in favour of the HFE Bill.

The PDS information sheets Cytoplasmic Hybrid Cells (code FS89) and Stem Cell Research (code FS78) are available at www.parkinsons.org.uk/publications

Summer 2008 Issue 31

Parkinson’s News

PDS campaign victory DBS funding reinstated in Wales The PDS has achieved a major campaigning success in the fight for NHS funding for deep brain stimulation (DBS). of the 1,200 PDS members in Wales wrote to their Assembly Members (AMs) asking them to lobby the Health Minister to reverse the funding decision. AMs from all parties have been actively supporting their constituents in this campaigning.

The National Assembly for Wales has now put forward £400,000 for DBS treatment during 2008/09 with immediate effect. These operations will take place at NHS Trusts in England. The amount for future funding will be considered in light of emerging demand and initial results from the PD SURG clinical trial. This is a ten-year study part-funded by the PDS, which looks at the long-term benefits and safety of DBS for people with Parkinson’s.

In June, the Minister for Health and Social Services, Edwina Hart AM, announced that the National Assembly for Wales will pay for DBS treatment for people living in Wales.

DBS is currently available to clinically suitable people with Parkinson’s in most areas of the UK. However, money for DBS was stopped by Health Commission Wales in 2006 who claimed there was limited evidence for the operation’s clinical and cost effectiveness. Since then, the PDS has campaigned strongly to reinstate funding. Recently, many

“This is a real achievement for people with Parkinson’s across Wales. Studies have shown that DBS can be very effective for certain people with Parkinson’s.

“It will make a huge difference to those patients and their carers in Wales who are suitable for this treatment.”

Carol Smith, Campaigns, Influence and Service Development Officer in Wales

All-Party Parliamentary Group on Parkinson’s Parliamentarians from all sides of the House of Commons and Lords have come together to form an All-Party Parliamentary Group (APPG) on Parkinson’s. And the PDS has been invited to provide administrative assistance.

The new APPG comprises members from the Liberal Democrat, Labour and Conservative parties and is chaired

by Baroness Gale (Labour). The opening meeting took place on 3 June, where they discussed the new organisation and its campaigning priorities.

The Group aims to raise the profile of the issues faced by people living with Parkinson’s. It will campaign nationally and locally to ensure access to key services, such as specialist nurses, therapists, specialist reviews, appropriate social care packages and support for carers. The APPG plans to mobilise political pressure and make sure these issues are tackled by the Government, NHS and social services.

Key findings from the PDS’s Members’ Survey: Life with Parkinson’s today – room for improvement, were also

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launched at the inaugural meeting. Parliamentarians had the chance to hear from two PDS members – Karen Rose and Marion Wale – who spoke about their experiences of managing the condition, the advantage of having support from key health and social care professionals, and the problems that arise when this support is unavailable.

Access to professionals such as Parkinson’s Disease Nurse Specialists, care of the elderly physicans, neurologists and therapists will be a major area of work for the new APPG. Support in these areas must be provided if the quality of life and clinical outcomes of people with Parkinson’s and their carers are to improve. The Group will soon be holding a series of meetings to press Government on these points.

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Social care shake-up The Government has announced a six-month period of consultation in advance of reforms to the system for funding and providing care services in England.

Ministers have warned that the social care and support system is facing a £6billion funding gap within 20 years.

Pressure from an ageing population means more people will be needing care and support for a longer period of time. The current system is unsustainable and a complete overhaul is necessary to meet the changing needs of an elderly population. The consultation is running from May to November 2008. It will lead to a Green Paper early next year, which will outline the proposals for modernisation.

Get involved!

The consultation is an important opportunity to influence what will be a major reform of the social care system. To give people a chance to have their say on how social care is funded, the Department of Health have announced a series of events around England: Date

Location

6 October

Birmingham

13 October

Newcastle

20 October

Bristol

3 November

Norwich

10 November

Brighton

You can register by going to www.coievents.co.uk/ careandsupport or calling 020 7261 8400. Separate events for users and carers are also planned.

The PDS will be responding to the Government’s consultation and would like to hear your views. We are encouraging all professionals, people with Parkinson’s and their carers to get involved. We will be organising a consultation event on 10 September.

To find out more, call Dave Clark on 020 7963 9307, email campaigns@parkinsons.org.uk or visit www.parkinsons.org.uk/supportforcarers More information on the consultation can be found at www.careandsupport.direct.gov.uk

PDS supporting therapists For a number of years, the PDS has been involved in a range of activities to promote access to high quality therapy provision for people with Parkinson’s.

These include: • pump–priming a small number of therapy posts in response to local requests for support to redesign services and increase capacity for implementation of NICE guidance • funding research to develop the evidence base for therapy interventions for people with Parkinson’s: the PDS is currently funding 10 projects in this area with a value of £640,000 • producing information as part of our suite of resources for professionals

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• providing bursaries for therapists undertaking education and training relating to Parkinson’s These reflect the priority given to this by people responding to our Members’ Survey, the results of which were published in the PDS report Life with Parkinson’s today – room for improvement. The PDS agreed to pursue a more strategic approach to promoting accessible, high-quality therapy provision over the next three years.

PDS-funded scoping exercise Last autumn, the Society employed two therapy managers to determine how we could best support appropriate therapy provision for people with Parkinson’s. The project Parkinson’s News

looked at four main areas: • service delivery • education and training • research • access to relevant information for therapists/people with Parkinson’s The scoping exercise focused on five therapies: occupational therapy, physiotherapy, speech and language therapy, dietetics and clinical psychology. The post holders consulted relevant professional organisations and special interest groups, along with key clinicians, PDS staff and branches engaged in supporting access to therapy provision. The therapy managers identified the following key findings:

Service delivery • Significant variability in therapy resources available to people across the UK • Perception amongst respondents that financial pressures have led to fewer specialist posts with support staff undertaking work without adequate training and supervision • Particular concerns about access to clinical psychology and specialist dietetics • Poor integration of acute and community services • Limited access to therapists in nursing and residential homes • Concerns about younger people’s access to therapists • Lack of clarity on the merits of group versus individual approaches

Training • Lack of short programmes that are profession-specific, which could act as an introduction to Parkinson’s for clinical staff • Limited evidence base and absence of agreed protocols for managing Parkinson’s within the different therapy disciplines, resulting in a lack of focus for postgraduate training • Variable access to funding and opportunities for education and training for therapists across the UK

Research • Limited evidence base for therapy interventions in Parkinson’s with almost no research undertaken by some professions • Few centres of excellence but proximity to these, notably Newcastle and Southampton, perceived to have an impact on local services and education opportunities

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Networking and information • View from all disciplines that it would be beneficial for the PDS to have an IT link to relevant special interest group sites, publish a list of relevant education and training opportunities, produce and update information resources in electronic as well as hard copy and be more visible at national conferences

Recommendations moving forward A number of recommendations have been made – all of which are only achievable once clinical standards and guidelines for each of the five therapies are developed.

Therefore, the Society has been in contact with the professional organisations to work in partnership to develop these clinical standards and guidelines. The guidelines will be based on best available evidence, user involvement and expert consensus on best practice.

If you would like to know more and get involved in this process, please email professionals@parkinsons.org.uk Summer 2008 Issue 31

New Carers Strategy launched On 10 June, the Government launched its new National Carers Strategy called Carers at the heart of 21st-century families and communities.

The long-awaited Strategy sets out a ten-year vision for improving the support of people that care for friends and family. It also commits a total of £255million for additional services in England over the next three years.

In February 2007, Gordon Brown announced that the Government would renew the 1999 Strategy for Carers.

To inform the Strategy, a major consultation was undertaken to seek the views of the public. The PDS also participated and held a number of focus groups with carers during 2007 and 2008, the findings from which were fed into the Government’s review.

Improving the health of carers Caring places considerable physical and mental strain on carers of people with Parkinson’s. They can find little time to look after themselves and, as a consequence, their health often suffers. This issue was emphasised in the PDS’s recent Members’ Survey, where over half of carers looking after people with Parkinson’s said they had a health problem of their own. To address these problems, the new Strategy proposes a number of pilot schemes that aim to: • provide annual health checks for carers • e stablish best practice within the NHS for supporting carers. For example, involving carers in diagnosis, care and discharge planning • develop a training package for GPs to help them better understand carers’ needs so they can offer appropriate support and guidance • provide respite care so that carers can attend medical appointments If proven successful, the pilot schemes could be rolled out nationally.

Giving carers a break In order to maintain a caring role, it is essential that carers have a break from caring. The Strategy includes £150million of additional funding for respite care, provided through local PCTs. Both PCTs and local authorities will be expected to work together to develop joint plans for the provision of breaks.

One issue not directly addressed by the Strategy is that carers of people with Parkinson’s often choose not to use respite care. This is because the care provided is of such poor quality that it can leave the person with Parkinson’s feeling worse than before entering into respite. It is therefore vital that any joint plans for breaks provision deal with the Summer 2008 Issue 31

substandard quality of respite care for conditions such as Parkinson’s.

Building awareness among professionals Carers at the PDS focus groups told us one major difficulty is that health and social care professionals do not recognise or understand their needs. The Strategy sets out a commitment to raise professionals’ awareness of carers’ issues. There is a plan to train health and social care staff likely to be in regular contact with carers, and less intensive awareness training for other staff, including those in housing, transport and the pensions services.

The PDS’s viewpoint The PDS welcomes the additional money and new initiatives to support carers. However, we are disappointed that no immediate action has been taken to tackle the financial hardship of carers who rely on benefits. For example, the low level of Carer’s Allowance and restrictions that stop many carers who receive pensions from getting this support.

The Strategy also lacks any commitment to address the problem of long waits for aids and adaptations, which were another obstacle encountered by carers in our focus groups.

What happens next?

A new Standing Commission on Carers has been formed, chaired by Dr Philippa Russell, and it will oversee the national delivery of the Strategy. Local delivery of carers services is currently monitored through National Indicator 135, which records the number of carers receiving assessments and services. In the longer term this is likely to be replaced by a new outcome-based indicator, which will also measure quality of services provided.

Findings from the 2011 Census, the 2008 Omnibus Survey and local carers experience surveys will be used to map and monitor service provision. The Strategy will be reviewed in 2011, when decisions about rolling out pilots nationally will be taken and the need for additional funding for respite will be assessed.

Find out more The PDS has produced a detailed briefing on the Strategy, which is available online at www.parkinsons.org.uk/ supportforcarers. For a hard copy, email Dave Clark at campaigns@parkinsons.org.uk Dave would also be very interested to hear your views on the Strategy and how you think the PDS can support you in your work with carers.

Parkinson’s News

Step closer to dementia strategy in England On 19 June, the Department of Health launched a new consultation called Transforming the Quality of Dementia Care: consultation on national dementia strategy.

This programme of work will lead to the development of the first-ever dementia strategy for the NHS in England. The proposed strategy outlines a five-year plan for: l increasing l ensuring

awareness

early diagnosis and intervention

l improving

the quality of care

The consultation marks an important stage in the development of the strategy. People living with dementia, along with health and social care professionals, are invited to tell the Department of Health what needs to be done to improve dementia care.

Studies have shown that up to one in three (40,000) people with Parkinson’s will have some degree of Parkinson’s disease dementia (PDD). PDD has a significant impact on their lives and the people around them. Treating and caring for someone with PDD often results in significant emotional and social burdens – leading to additional costs and complex care needs.

The PDS’s call to action The PDS welcomes the prioritisation of dementia by the Government and supports the significant difference that the strategy should make to the lives of many people with the condition, their carers and families. However, we are very disappointed by the lack of recognition of PDD within the strategy. We believe the strategy must acknowledge PDD, which has unique diagnostic signs, clinical symptoms and treatments that make it discrete from the other dementias.

To tackle this, the PDS, along with leading clinicians in the field, is lobbying the Secretary of State for Health, Alan Johnson, for inclusion of PDD in the consultation document.

What’s more, the PDS has recently committed £1.2million to fund research into this condition.

Research results from the PDS’s Parkinson’s and Mental Health Education Project show there is a worryingly low awareness of PDD among professional groups. What’s more, people with Parkinson’s do not receive a consistent range of services across England. This suggests that either multidisciplinary services are not available within all localities or existing referral protocols prevent Parkinson’s patients from accessing specialist mental health services.

The PDS is working hard to bridge the knowledge gap by building awareness among professionals. We have

Parkinson’s News

Peter Maule, who lives with PDD, and his family. Turn to page 12 to read his wife’s story.

a number of new initiatives in the pipeline, such as the development of a range of professional training resources and the PDS conference ‘Parkinson’s Disease: responding to mental health issues in Parkinson’s’, held on 23 September (turn to page 23 for more details).

The live consultation can be viewed at www.dh.gov.uk/en/Consultations To find out more about the PDS’s training initiatives, go to www.parkinsons.org.uk/training The results from the Parkinson’s and Mental Health Education Project will be shortly available on the PDS website.

Summer 2008 Issue 31

Life with Parkinson’s today – room for improvement In 2007, the PDS conducted the largest ever survey in the UK of people with Parkinson’s and those who care for them.

Who is diagnosing Parkinson’s?

The survey reveals that 35% of our members who were diagnosed more than 10 years ago were diagnosed by their GP. Things are getting better, with more people with Parkinson’s being diagnosed by a specialist but, still, one in five people diagnosed in the last year, were told they have Parkinson’s by their GP. Diagnosis by a specialist was lowest for members in Northern Ireland, with only six out of ten being informed of their Parkinson’s by a neurologist or care of the elderly physician. This confirmed what we’ve been hearing for some time from our members in Northern Ireland – that there is a shortage of specialists in Parkinson’s.

The report contains important results on the needs of people living with Parkinson’s and the obstacles they face.

More than 13,000 members responded and the results provide a significant insight into all aspects of life with Parkinson’s including: • the experiences of diagnosis • access to health and social care services • how the PDS provides support Since Parkinson’s is a complex progressive disorder, it is important that people living with the condition receive regular input from specialists from diagnosis onwards. This ensures that their symptoms are managed effectively and their quality of life is maintained.

People should be diagnosed initially by a specialist, and have access to a Parkinson’s Disease Nurse Specialist (PDNS) and therapies, such as physiotherapy, occupational therapy, and speech and language therapy when they need them.

The National Institute for Health and Clinical Excellence (NICE) Guideline, which covers England, Wales and Northern Ireland, recommends that a diagnosis should be made by a specialist, likely to be either a neurologist or, for older people, a care of the elderly physician with expertise in Parkinson’s.

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Many people across the UK are missing out on the expert advice of specialists at the time of diagnosis, but also throughout the course of the condition. Around 16% of our members with Parkinson’s diagnosed between five and ten years ago have never been seen by a hospital doctor with specialist knowledge of Parkinson’s.

How long are people waiting for a specialist?

Two-thirds of our members with Parkinson’s were referred to a neurologist to have their diagnosis made or confirmed.

Nearly half of those diagnosed in the last year and referred by their GP to a neurologist were seen within the six weeks recommended by NICE and many others were seen within three months. However, a minority are still waiting for very long periods of time, which needs to change.

Regular reviews of the condition As Parkinson’s is a progressive condition, having regular clinical reviews and medication adjustments are vital to people’s ability to manage their condition. People may need to change or add drug groups, or amend the timing, dose or frequency of the medication they are taking. If people do not get the medication reviews they need, their condition will not be as effectively managed as it could be. It is also Parkinson’s News

important that medication is reviewed and adjusted by a specialist (usually a consultant or PDNS).

These professionals, working in teams across the UK, work hard to see their patients with Parkinson’s regularly, but a small minority of people with the condition (one in 12) are having their Parkinson’s medication reviewed less regularly than once a year. For these people in particular, the PDS will continue to campaign locally for integrated Parkinson’s services that can support all people with the condition in their area.

Access to a specialist nurse – the number one campaign priority More than a quarter of people living with Parkinson’s in the UK have never talked to a PDNS, and four out of ten people with the condition have not spoken to a specialist nurse in the last 12 months. The PDS has invested over £8million since 1994 in establishing and supporting specialist nurses up and down the UK and there are currently more than 230 posts across the UK.

“Our survey revealed that while there have been a number of improvements across the UK, many people are still being let down by their local services from the time of diagnosis onwards.

What the PDS is doing now…

Results from the PDS’s Members’ Survey show how, in spite of the NICE Guideline for Parkinson’s disease and the National Service Framework for Long-term Conditions, variations in local services still exist. The PDS is calling on all health and social care providers to engage with us – to understand what their local residents have told us and work with us to address the gaps.

Nationally, the results from the survey are being used to lobby Government and parliamentarians as a way of pressing for change. On a local level, our Influence and Service Development Officers (ISDOs) will be using the data to engage with clinicians and commissioners locally to improve Parkinson’s services. For contact details of the ISDO in your area, visit www.parkinsons.org.uk/regionalteams To get a copy of Life with Parkinson’s today – room for improvement, email pr@parkinsons.org.uk or visit www.parkinsons.org.uk/membersurvey The NICE guidance Parkinson’s disease: Diagnosis and management in primary and secondary care can be downloaded from www.nice.org.uk/CG035

There is an urgent need to improve services so that every person with Parkinson’s gets access to the expert help they need at diagnosis and whenever they need it throughout the course of their condition.”

Steve Ford, Chief Executive of the PDS

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Summer 2008 Issue 31

My view on…

Parkinson’s and mental health Parkinson’s is a complex, progressive neurological condition that has traditionally been described as a motor disorder. However, it is now increasingly recognised that much more than the motor system is affected. There are also non-motors problems, the most common of which being problems with mental functioning.

About two-thirds of people with Parkinson’s experience mental health issues at some point during the course of their condition. They include disturbances of mood, perception, behaviour and thinking. The symptoms can present in many ways. For some, they may be mild and transient, whereas for others, the symptoms may cause significant distress in both the person with Parkinson’s and their carer.

Dopamine affects movement, mood and thinking The co-existence of mental health problems and motor problems in Parkinson’s is not surprising as both are due to changes in chemicals that control brain function. The symptoms of Parkinson’s are largely due to the depletion of the brain chemical dopamine. Dopamine plays an important part in controlling movements, and contributes to the control of mood, thinking and one’s sense of wellbeing. So side effects of anti-Parkinson’s medications, which affect dopamine, may cause mental health symptoms such as hallucinations.

Other chemicals within the brain, such as acetylcholine, serotonin and noradrenaline, can also be affected in Parkinson’s and they also play a major role in mental wellbeing. Therefore, imbalances within these chemicals may also cause various mental health symptoms for some people with Parkinson’s.

Reassuring people with Parkinson’s People with Parkinson’s may not feel comfortable admitting to, and openly discussing, their mental health issues.

Some may even feel embarrassed or ashamed and believe that there is some sort of stigma attached to having such problems. It is therefore important for healthcare professionals to reassure people that problems with mental health are not a sign of personal weakness or being unable to cope. The symptoms are something the individual has no direct control over, and the causes are independent and separate from the normal emotional responses to situations.

No ‘one-size-fits-all’ treatment As mental heath symptoms can present in many ways in Parkinson’s, the management is challenging and may involve various members of the multidisciplinary Parkinson’s team at any one time. The Parkinson’s and Mental Health Education Project has shown there is a lack of awareness of the mental health aspects of Parkinson’s and its management among professionals. While it is important Summer 2008 Issue 31

to recognise the national guidance issued by NICE, it is also important to understand that there is no ‘one-size-fits-all’ treatment for Parkinson’s and any associated mental health problems.

Turn to page 21 to find out how the PDS is bridging this knowledge gap and supporting the training and information needs of professionals.

In this section, healthcare professionals, people with Parkinson’s and their carers tell us of their experience with Parkinson’s and associated mental health problems.

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Caring for my husband who has Parkinson’s disease dementia Denise has been caring for her husband Pete who has been living with Parkinson’s for 11 years. Three months ago, Pete was diagnosed with Parkinson’s disease dementia (PDD).

How was Pete diagnosed with Parkinson’s?

Our GP referred us to a neurologist – but it was going to take six months for Pete to be seen, which our GP said wasn’t good enough. In the end, our GP arranged for the neurologist to make a private visit using practice funds.

The neurologist initially thought Pete had a brain tumour because he was so young – only 47. The neurologist was very eccentric – he told me that Pete had Parkinson’s.

Then I had to tell Pete, which I thought was very strange.

After the diagnosis, our GP was absolutely fantastic – he explained everything so clearly and told us about the PDS and what support was available.

When did you notice a change in his behaviour?

Last year, Pete’s behaviour started to deteriorate rapidly and I was convinced he had Alzheimer’s. I was at breaking point – and felt so guilty. I could cope with the Parkinson’s but the dementia changed everything.

He started wandering off by himself and forgetting things – unable to recognise people or places, panicking in crowds, putting rubbish in the fridge. Pete would literally go into a corner and not speak to anyone. The hallucinations started – he believed people were either stealing our car or building bricks around our house. He was also getting verbally aggressive, which upset me.

I discussed Pete’s behaviour with our Parkinson’s Disease Nurse Specialist (PDNS), who suggested that he may have dementia. Then, three months ago, our neurologist confirmed he had PDD.

Which healthcare professionals are involved in Pete’s care?

After he was diagnosed with Parkinson’s, there was speech and language therapy for a while – but in that time, Pete saw three different therapists. The first one was good and they built up a relationship, however, the next two just weren’t sensitive to Pete’s needs. He’d forget things and then they’d tell him off, which just made things worse.

Since Pete’s weight has plummeted, he was also seeing a dietitian. Eating exhausts him, and I can’t seem to get him to eat proper meals. I’m not sure why but the visits to the dietitian seemed to grind to a halt.

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Is there any professional support missing from Pete’s care?

I think occupational therapy or physiotherapy would be very helpful because Pete falls so much now. He needs someone to teach him techniques for getting up out of chairs without falling over, and how to walk on different surfaces – that sort of thing.

I’m not sure what is happening with Pete’s dementia care or which professionals could help – he hasn’t seen an old age psychiatrist. I don’t know what support there is like memory clinics or day care centres and he hasn’t been prescribed any anti-dementia drugs.

Have you received a break from caring?

Our PDNS and PDS Information and Support Worker (ISW) have been a lifeline. They suggested seeking subsidised respite care so I could have a break. But there were many hurdles to overcome – to qualify we had to go through a barrage of interviews with the local authority before they would accept Pete. When we finally got the respite care, I wasn’t allowed to communicate with Pete for the whole week he was away.

After that, the local authority told me that my respite was being withdrawn but they didn’t give me a reason.

My ISW wrote a letter to Older Peoples Services at the local authority explaining how I really needed the respite and eventually it was reinstated.

The second time was to a different place and I was allowed contact with Pete, but there were lots of problems so I was constantly being called. Pete said they didn’t give him the correct medication – I know he didn’t take all his drugs because he came back with too many pills.

How was your respite experience?

To be honest, by the time Pete came out I was still exhausted because I was so worried all week – but it was nice to have some time for myself. I was concerned that the respite care staff looking after Pete didn’t appear to know Summer 2008 Issue 31

much about Parkinson’s. Since our experience, I have taken them information about Parkinson’s to educate them – such as the PDS’s DVD Being There, Parkinson’s News and the leaflets When your patient has Parkinson’s: Information for Ward staff and Caring for a resident with Parkinson’s Disease.

Have professionals supported you as a carer?

Some professionals have been fantastic; for instance our GP, PDNS and ISW. We see them regularly – I think they understand that Pete’s Parkinson’s affects me just as much as it affects him. They talk to both of us and involve me in all the decisions.

However, the professionals we see less frequently are not so good. I don’t think they appreciate just how difficult life

is. For example, my GP suggested I go for counselling for my depression. I had a couple of sessions but it didn’t work because the counsellor didn’t seem to understand or care.

Do you have a key message for professionals?

Listen to us – you only see a snapshot while we deal with the bigger picture.

Involve us – we live with Parkinson’s day in and day out.

So take a few minutes to talk with us and involve us in decisions about the care and treatment.

The PDS publications are free and can be found at www.parkinsons.org.uk/professionalresources

PDS Helpline – here for professionals The PDS Helpline is a multidisciplinary team which includes occupational therapists, speech therapists, Parkinson’s nurses and experienced benefits and employment advisers.

We offer accurate and up-to-date information to support professionals in the management and care of people with Parkinson’s. Common enquiries relate to:

The Parkinson’s Disease Society Helpline provides confidential advice, information and support from qualified nurses and advisors.

Monday–Friday, 9.30am–9pm Saturday, 9.30am–5.30pm (except Bank Holidays)

• diagnosis • motor and non-motor symptoms • new or current treatments • drug side effects and contraindications • accessing local support including Parkinson’s Disease Nurse Specialists • benefits and employments • aids and adaptions for daily living • locating and financing suitable care homes

email: enquiries@parkinsons.org.uk

Summer 2008 Issue 31

Parkinson’s News 13

PDS Helpline Nurse Adviser – Elaine Riat I have been working for the Society for eight years now and, within that time, it’s become clear that mental health is a topic that needs voicing.

The World Health Organization states that one in four of us will have some sort of mental health problem in our lifetime.

This means there are millions of people in the UK who have an issue or know someone with an issue.

Problems with mental health affect emotional health and wellbeing – leading to panic attacks, stress, anxiety or phobias. They also cover a range of named conditions, such as Alzheimer’s, depression, dementias and eating disorders.

My definition of a mental health issue is when a person’s behaviour changes so much that it significantly affects their quality of life, and that of the people around them.

Lack of understanding among professionals When mental health issues come alongside Parkinson’s, they might not be diagnosed for some time. Even worse, they can be wrongly diagnosed.

I know of people with Parkinson’s who have been admitted to hospital and misdiagnosed with a mental health problem.

For example, the non-motor symptoms of Parkinson’s, such as masked facial expression and slowness of speech, can be interpreted as dementia. This is because junior staff may direct questions towards the person with Parkinson’s at great speed. They do not give them adequate time to answer, and put the slowness of speech down to a significant loss of intellectual function – when the person’s thinking is fine but they just think slower and take longer to make sense of information.

More education is needed to help healthcare professionals understand the many different non-motor signs of Parkinson’s.

Better public awareness Over the years, I have found there have been more calls about mental health to the PDS Helpline. I feel this is because people are seeking help more easily. I receive a wide range of calls from: • carers and relatives of someone with Parkinson’s who has fragile mental health • healthcare professionals who are trying to understand if there are links between medication and a person’s behaviour • people with Parkinson’s who know that they have a mental health issue and want to understand how to deal with it and where to get help 14 Parkinson’s News

In the past, there has been a certain stigma attached to mental health. The public has tended to keep it hidden within the family or community. I think the increase in calls is due to raised awareness by the public. The PDS has several information sheets around mental health and our Helpline is confidential, which means people feel more relaxed to talk when on the phone.

“I have become much less interested in my usual hobbies, such as gardening. Nothing makes me happy any more. Everything seems bland, even food! I can’t be bothered watching the football these days.

“My sleep is disrupted and I wake up at 4am every morning ruminating on all the awful things in my life. I am tired all the time, and have no energy or drive. The future looks bleak and there are times when I feel ‘why bother’.”

A 45-year-old man with a three-year history of Parkinson’s “I’m sure he’s depressed but he can’t recognise it. He’s just not the same person that I married ten years ago. He’s not interested in anything. He’s much less affectionate. He doesn’t even want to see our closest friends.

“Sometimes I’ve caught him crying for no real reason. I wish he’d get help. It’s breaking up our relationship. It’s making us both miserable.”

His spouse

Coping with anxiety and depression I frequently get calls from people with Parkinson’s who feel an ever-present anxiety. It can range from worry and Summer 2008 Issue 31

stress to fear and panic. We then talk more about their concerns in depth – how they were diagnosed along with their knowledge and experiences of Parkinson’s. What I find is that the anxiety is mostly based on being told they have an incurable condition, and to be honest, under the same circumstances who would not feel anxious?

At the PDS Helpline we can assist by giving people accurate information about Parkinson’s and taking time to listen and answer their questions and worries. This gives the person or family a chance to deal with the facts as opposed to the myths.

There are some people with Parkinson’s who call the PDS Helpline with depression that takes over their lives. They often find it hard to accept that they are depressed – as it may not have featured in their lives before. We encourage them to talk it over and seek professional help. This is an important step forward to control the condition. Often it results in a referral to a mental health specialist who can recommend the right treatment in the form of medication or counselling.

Living with hallucinations and paranoia Telephone calls from carers and families frequently highlight problems around managing hallucinations and paranoia. When someone sees, hears, feels, smells or tastes something which in reality does not exist – they are hallucinating. And, paranoia is where a person feels threatened and suspicious. If these changes in behaviour are a lasting feature, it can be a symptom of mental fragility.

These problems can also be side effects of certain antiParkinson’s medication.

“It started with me seeing shadows in the corners of my vision. When my medication was increased, the shadows became more persistent and eventually turned into little children. They would come into the house and sit on the sofa and play with each other. I could never hear them but when I yelled at them to go away, they would disappear.

When I told my doctor about them, she lowered my medication dose. They went away.”

A 54-year-old woman with a five-year history of Parkinson’s Dealing with hallucinations really depends on how much insight the person with Parkinson’s has. I had one caller who experiences daily visual hallucinations and lives alone.

However, he is able to rationalise them by using a technique where he places his hand out and through the images.

Unfortunately, others are not able to rationalise the visions they see or the sounds they hear, and are very frightened.

If the person lives with someone, we encourage them to accept the word of their carer – that the hallucinations do not exist. But for some people, the hallucinations are too real and they struggle greatly with them. So we recommend that they see their specialist doctor to have their medication reviewed.

From the family’s/carer’s point of view, coping with hallucinations and paranoia can be very demanding and distressing. Especially, if they are trying to repeatedly reassure the person with Parkinson’s of reality. The PDS Helpline can offer a listening ear and good advice on where to gain support such as respite.

Guiding professionals to make informed decisions The PDS Helpline is aimed at both healthcare professionals and non-professionals – people living with Parkinson’s.

Most of my calls from healthcare professionals centre on medication and how to support families in the community.

We use our specialist knowledge and PDS resouces to help them understand what the person with Parkinson’s is going through and how to help.

I would encourage all professionals to call or email us if they have any query about Parkinson’s. We may not always have the answer for everything but we treat each person as an individual and can enable people to make informed choices.

“My husband tried to reassure me that they were just in my imagination and sometimes I believed him, but at other times they seemed so real.

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Parkinson’s News 15

One patient’s journey – Alison’s struggle with depression and Parkinson’s I was bothered for a couple of years with a slight limp, which I put down to osteoarthritis. In 2006, a specialist told me that I might have Parkinson’s.

This came as a huge shock and the diagnosis was confirmed the next year by my neurologist. I was then prescribed the dopamine agonist Requip® (ropinirole hydrochloride).

Shades of grey My mental state deteriorated, despite having started to take the anti-depressant fluoxetine. I can only describe the depression I lived with as cloaking my life in shades of grey, which increasingly turned to black. There were times when I was either completely disinterested in life, or manic – not listening to anything my husband tried to tell me. This led to heated arguments with my husband, it seemed that either of us could have killed the other out of frustration or fear. I just had to get away from it all.

Falling off a steep cliff I persuaded my mother to put me up for a fortnight. She lives on a second floor apartment with a balcony, and in my depressed state I began to think of ways I might commit suicide; mentally I was falling off a steep cliff, and the balcony became very tempting. I’m ashamed to say the thought of murdering my mother kept going round and round in my head.

Haunted by my suicidal urges Returning home, these obsessive thoughts wouldn’t go away and I took an overdose of painkillers, which led to several days in hospital. It was the consultant psychiatrist who then explained the link between Parkinson’s and depression to me. I continued taking Requip until my medication was changed to Mirapexin® (pramipexole dihydrochloride) by my neurologist. It was hard to see how any of the medication was helping my Parkinson’s or my mental state. For the rest of the year I was haunted by suicidal and homicidal urges, and struggled to make sense of what was happening to me.

Making sense of it all My life began to make sense again last November. My husband began a new job, and I started to receive disability

16 Parkinson’s News

benefit thanks to the intervention of a social worker.

Gradually I have been engaging with life again, going back to work part-time and making friends at a local community centre. On the suggestion of my PDNS, and in agreement with my neurologist, I stopped taking Mirapexin® and now wear a Neupro® (rotigotine) patch – it’s so practical and much easier to cope with. I feel my Parkinson’s has stabilised at last. It’s wonderful not taking pills any more.

Support from healthcare professionals I received considerable support from my GP, the consultant psychiatrist and his team. When I was discharged from hospital after my attempted suicide, the mental health home treatment team kept in touch almost daily, offering emotional and practical help, which was so important.

However, I would like to have received more support from the consultant neurologist who was perhaps overworked.

Although he recommended an appointment every three months, an appointment booked for June was postponed until March 2009. Now I have been referred to the Institute of Neurology in London.

Looking to the future After seeing the Newsnight programme earlier this year on compulsive behaviours, I became aware of the effect dopamine agonists can have on compulsive behaviours. I am thinking more positively now – I have stopped struggling with depression and negative thoughts, and now back in touch with reality.

Parkinson’s, depression and dopamine agonists • Depression affects around 45% of people with Parkinson’s • There is no evidence that dopamine agonists cause depression or make it worse • In fact, research suggests that some dopamine agonists such as Mirapexin® (pramipexole dihydrochloride) improve depression in people with Parkinson’s

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Parkinson’s Disease Nurse Specialist – Tracey Ward Describe your job I work within both primary and secondary care. Within primary care, I run my own nurse-led clinics at various locations to improve local access for people. I also visit patients in their own homes. This gives a more accurate assessment and understanding of their needs and the difficulties they face on a day-to-day basis – physically, socially, psychologically and financially.

In secondary care, I run a joint clinic with neurologists. I also work closely with Community Mental Health teams. It is important that both primary and secondary organisations work together to deliver effective services.

I am an independent nurse prescriber, which is very useful both within the clinic and home environment. It allows medication changes to occur immediately.

Education is a major part of the role. This includes patients, carers (both informal and professional) and members of the multidisciplinary healthcare team. I also provide support for patients and their families. I help them become experts in their condition and its management. This allows patients and their families to make informed decisions about treatment and care options. As healthcare professionals, I believe we should facilitate decision-making – not make decisions for them.

How much experience do you have in the field of Parkinson’s?

Twelve years.

How often do you see people with Parkinson’s?

On a daily basis – I also see people with neurological disorders which share features with Parkinson’s (parkinsonism). These include multiple system atrophy (MSA), progressive supranuclear palsy (PSP), Lewy body disease (LBD) and corticobasal degeneration (CBD).

Who refers them to you?

There is an open referral system. A large proportion of referrals are from hospital neurologists. I also receive referrals from geriatricians and wards within the General Hospital. Encouragingly, referrals have increased from ward staff. This facilitates informal education and more rapid assessment of patients.

Referrals also come from social care staff, intermediate care teams, mental health service (both within secondary and

Summer 2008 Issue 31

primary care), speech and language therapy, physiotherapy and occupational therapy staff. More referrals are now coming from GPs and, most importantly, I take referrals directly from people living with Parkinson’s and their families.

There are many reasons for referral – but most are for an assessment of a patient, review of medication and then making any necessary changes.

At what stage in their care are you involved?

At all stages – ideally when a patient is referred at diagnosis – I then see them at the Maintenance, Complex and Palliative stages. I see people who are at the Complex phase most frequently – they take up the largest proportion of my time.

What does ‘mental health issue’ mean to you in the context of Parkinson’s?

Mental health issues in Parkinson’s have a different context to those affecting the general population. Compulsive behaviours, punding, paranoia and delusional behaviours can be attributed to the side effects of certain antiParkinson’s medications.

Parkinson’s affects several neurochemicals such as dopamine, serotonin, noradrenaline and GABA – so depression, anxiety and apathy are commonly seen. Other mental health issues in Parkinson’s include hallucinations, mild cognitive impairment and dementia.

“Over the past three years he has become more and more interested in sex. We haven’t been active for years and now he is making demands all the time. It is wearing me out.

“Yesterday he went to our GP to demand a prescription for Viagra. Thank goodness the GP refused on the grounds of his heart condition.

I’m desperate about it all, but he doesn’t see that anything is wrong.”

The wife of 74-year-old man with a 13-year history of Parkinson’s

Parkinson’s News 17

What types of problems do you see?

Mostly anxiety, low mood and depression. Often individuals don’t notice these symptoms in themselves or associate them with Parkinson’s or anti-Parkinson’s drugs.

get money to gamble. I don’t care whether I win or lose…it’s a drive to do it that keeps me going.”

A 36-year-old man with a five-year history of Parkinson’s

Apathy is not so prevalent or perhaps not so well identified.

It often causes more frustrations for those around them, rather than the person themselves.

What challenges do you encounter treating somebody with Parkinson’s who has mental health problems?

Hallucinations, paranoia and delusional thoughts/behaviours are often associated with side effects of medication, as well as disease progression.

Until an individual recognises they have a problem, you cannot help them. Once acknowledged, it is very important to instill that problems with mental health are NOT abnormal – there is no social stigma and it does not make them a lesser person. Symptoms arise because there are chemical imbalances in the brain and we can help by rebalancing these chemicals.

Obsessive compulsive disorders are not uncommon. The severity varies considerably – changes in behaviour may be very subtle or major. Early recognition is essential to reduce the risk of serious distress and actions that can be experienced as a consequence.

How often do you come across someone with Parkinson’s who has mental health issues?

Daily – mental health problems are common in Parkinson’s but to varying degrees – some are more serious than others.

How do you help them?

Listening is very important – to what they say and, more informatively, to what they do not say! Also, observing them – their body language and their family’s interaction with them. Informal assessment using intuition built from experience can be very informative.

I might have to point out certain behaviours or presentation of low mood or anxiety. This is often a relief to the person – as it acknowledges their inner turmoil. The recognition opens the person to share their feelings and provides a way forward to dealing and managing their problems.

The non-motor symptoms questionnaire, visit www.parkinsons.org.uk/publications, is a very good tool for prompting discussion if the patient is not very forthcoming. If you suspect an underlying issue or if they have ticked a box on the questionnaire, it enables you to initiate a conversation around a certain issue you may have a concern about.

There are other useful formal scales but these are subjective and open to interpretation. I find the Addenbrookes Cognitive Examination, visit www.pentorch.net, very useful in assessing if someone’s cognitive impairment is due to early dementia or symptomatic of undiagnosed depression.

“I was never interested in gambling before, but now I can’t keep away from it. I spend hours on internet gambling sites and I figure I’ve turned over more than a million pounds in the past two years.

“My girlfriend has taken charge of all the bank accounts and credit cards but I still find ways to

18 Parkinson’s News

People often think taking antidepressants is a sign of weakness. I reassure them that just as a broken leg needs plaster to act as a scaffold while the bone repairs, chemicals within the brain need their own scaffolding – in the form of anti-depressants – while they regain their balance.

It is essential to choose the right medication for each patient and discuss it in plain English with them. Anxiety may not always be associated with depression. However, if the anxiety is disabling and affecting their quality of life, prescribing an anti-depressant with anti-anxiety effects can be beneficial to the patient.

Sometimes the use of medication may not always be necessary. Just acknowledging the symptoms can be therapeutic for the patient. We can also discuss ways of changing a person’s lifestyle to reduce unnecessary stress. Doing something as simple as informing a person about their condition can reduce anxiety to manageable levels. Cognitive-behavioural therapy can also be very useful for patients – or having an occupational therapist/ physiotherapist to help the patient practice anxiety management techniques.

I find that awareness about Parkinson’s in healthcare professionals is very variable. If a professional does not have experience with the condition, there can be a disconcerting lack of knowledge on the mental health issues as well as the physical and non-motor symptoms. Professionals really need more education and training.

And, your final message to professionals?

Listen well – support the patient and their family.

Acknowledge mental health problems and non-motor symptoms as part of the person’s Parkinson’s – do not ignore them.

Refer them to the appropriate professionals for regular review their medication until optimum symptom control is achieved.

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Consultant clinical neuropsychologist – Dr Jamie Macniven Describe your job Two days a week I work with an adult neuropsychiatry team on complex cases where people may have a combination of problems. For example, a history of schizophrenia which is then complicated by a tumour or neurodegenerative disorder. I assess their cognitive state to inform diagnosis and help decide on an appropriate treatment.

I also spend two days working in the neuropsychology for neurosurgery specialism where I see patients who have been recommended for surgery. Some have Parkinson’s and are potential candidates for deep brain stimulation.

I assess their mental health to check that surgery is the right course of action.

How much experience do you have in the field of Parkinson’s?

Ten years.

How often do you see people with Parkinson’s?

Every few weeks.

Who refers them to you?

More often, a consultant neurosurgeon refers them for an assessment of their suitability for surgery. Also, sometimes I consider more complex cases referred by a consultant psychiatrist.

At what stage in their care are you involved?

I tend to see people during the later stages, when symptoms have worsened and they experience more significant disabilities.

“Over the past few years, as my Parkinson’s has worsened, I have become less and less able to relax. I worry excessively about small and inconsequential things and lie in bed at night unable to relax.

“If my medication is wearing off, I become particularly tense and irritable. It has become increasingly hard to go out and socialise because I feel too tense and worried all the time.”

A 57-year-old man with a seven-year history of Parkinson’s

What does ‘mental health issue’ mean to you in the context of Parkinson’s?

There is a huge variety of problems that can affect people with Parkinson’s; psychological distress, adjustment Summer 2008 Issue 31

difficulties, depression, anxiety, panic attacks – it all depends on the individual.

What types of problems do you see?

The most common is depression. People with Parkinson’s can experience the same spectrum of mental health issues as everyone but with the added complication of Parkinson’s.

How often do you come across someone with Parkinson’s who has mental health issues?

Generally, patients referred for surgery do not have severe mental health problems because that makes them unsuitable for the procedure, but some have problems with low mood and/or anxiety. In neuropsychiatry, I sometimes assess people with Parkinson’s who have more unusual mental health problems, such as hallucinations.

How do you help them?

I try to identify the right level of support for each individual patient; this may be clinical psychology, community services, psychiatric care or surgery. I don’t treat the patient directly but feed them through to the appropriate teams to manage their symptoms most effectively. Most clinical psychology services for people with Parkinson’s will involve neuropsychological assessment and, where appropriate, some psychotherapeutic intervention, such as cognitivebehavioural therapy.

What are the challenges of treating people with Parkinson’s who have mental health problems?

The variable level of support available across the country is a big problem. All people with Parkinson’s should have access to clinical psychology services.

And, your final message to professionals?

We must all aim to provide the highest possible quality of care for people with Parkinson’s. This means prioritising better availability and access to mental health care which should be given equal importance as managing the physical symptoms of the condition.

Parkinson’s News 19

Consultant old age psychiatrist – Dr Srinivasa Malladi Describe your job I look after patients who are 65 and over, who have mental health problems. This is usually dementia, although you can see the same array of mental illnesses in older patients as in younger ones.

What types of problems do you see most?

Two years.

Certainly dementia is the most common, followed by depression.

I have also seen two cases of pathological gambling.

How often do you see people with Parkinson’s?

How do you help them?

I have around 15 people with Parkinson’s on my caseload.

It depends upon the individual case. With dementia patients, I usually prescribe medication such as cholinesterase inhibitors to help alleviate their symptoms. But we also provide support for patients, including home care, day hospitals, and I often suggest they attend support groups.

How much experience do you have in the field of Parkinson’s?

Who refers them to you?

Generally primary care teams, when dementia or some other mental disorder is suspected.

I have noticed an increase in the number of referrals I receive, particularly from primary care which is encouraging as it suggests there is an increased awareness of mental health problems among healthcare professionals.

At what stage in their care are you involved?

This can vary quite a lot because cognitive impairment can happen at any stage in Parkinson’s. Usually, my patients have been on anti-Parkinson’s medication for a few years before they come to me.

What does ‘mental health issue’ mean to you in the context of Parkinson’s?

The mental health issues that affect people with Parkinson’s can vary hugely; people develop dementia, depression, hypersomnolence, pathological gambling and many people simply struggle to cope with the realities of their illness.

“I used to be very efficient at work, particularly around tax time. I could organise myself well and deal with phone calls, emails and ongoing tasks all at the same time.

“Now, I am much less decisive and it takes me twice as long to complete a task. I have difficultly keeping my desk in order and sequencing my work.

“If I am distracted, I find it hard to bring my focus back to what I was doing. I am now thinking of taking early retirement.”

A 57-year-old accountant with a four-year history of Parkinson’s

20 Parkinson’s News

Unfortunately, psychotherapy, which can help some people, is not available in the area where I work as the service has been downsized over the last few years. How we care for people with Parkinson’s with mental health problems is still evolving and there is always room for improvement.

What challenges do you encounter treating somebody with Parkinson’s who has mental health problems?

As a psychiatrist the major challenges are diagnostic ones.

Many patients are presumed to have dementia but may actually only have minor cognitive changes.

There is also overlap between people who have clinical depression, caused by biological changes in the brain, and people who experience adjustment problems to coping with their condition. If a patient doesn’t have true dementia or true depression they are unlikely to benefit from the medication I prescribe for them.

Also, many of the assessment scales we use to diagnose patients are not appropriate for people with Parkinson’s and the added complications their condition entails.

And, your final message to professionals?

The understanding of the importance of the non-motor symptoms needs to improve. So we need better education and training to recognise mental problems and more guidance from authorities like NICE on anti-dementia medications.

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Supporting professionals Today, around 120,000 people are living with Parkinson’s in the UK. It is a progressive neurological condition with a variable set of physical, non-motor and mental health symptoms. No two people with Parkinson’s are the same – so the condition can be difficult to manage.

The PDS is strongly committed to raising awareness and supporting the development of health and social care professionals. By understanding the fluctuating and individual nature of Parkinson’s, professionals can provide better treatment and care.

Our resources for professionals are free of charge and can be downloaded from www.parkinsons.org.uk/professionalresources

Out now! new PDS resources Sex and Intimate Relationships (code B034) covers the emotional and physical problems that can be experienced by people with Parkinson’s. Take a look by visiting www.parkinsons.org.uk/ publications

Opportunities for professional development Education and professional development are important aspects of the PDS’s work. Our education and training team offers a variety of courses and initiatives for all types of professionals across the UK. Visit www.parkinsons.org.uk/training for more details on: • PDS training courses

Competencies: a Competency Framework for Nurses Working in Parkinson’s Disease Management describes the skills and knowledge required by nurses managing the care of people living with Parkinson’s. Download it from www.parkinsons.org.uk/professionalresources

• Training opportunities offered by other organizations • PDS educational bursaries

Out of stock – 6mg and 8mg Neupro® Earlier this year, the PDS reported on a manufacturing issue with Neupro (rotigotine) transdermal patches for the treatment of Parkinson’s.

The manufacture of Neupro can result in the crystallization of rotigotine, which means it is not released from the patch properly. To reduce the formation of crystals, UCB Pharma, who supply the drug, have recommended the patches are now stored under refrigerated storage conditions (between 2°C and 8°C).

UCB Pharma is now changing their manufacturing process.

As a result and for a temporary period only, UCB Pharma is only able to supply 2mg and 4mg Neupro. Supplies of 6mg and 8mg will go out of stock in August 2008. UCB Pharma do not know when the 6mg and 8mg presentations will become available again.

Summer 2008 Issue 31

To prepare for this, healthcare professionals need to talk with their patients and decide on the best treatment strategy moving forward. For example, patients can use a combination of patch strengths to achieve their target dose (e.g. two 4mg patches instead of one 8mg patch). If this is not practical, then an alternative solution will need to be determined in consultation with your patients.

For more information, contact UCB Medical Information: call 01753 534655 or email medicalinformationuk@ucb-group.com

Parkinson’s News 21

Training on Parkinson’s and mental health Building on the theme of mental health in this issue of Parkinson’s News, the PDS has put together details of training courses relating to Parkinson’s and mental health, as well as individuals with specialist knowledge on the subject.

Courses For more details on these courses and experts, click on www.parkinsons.org.uk/training Title

Provider

Type

Dementia in Older Adults

Age Concern

Training seminar

Long-term conditions – Parkinson’s

Bromley Interagency Training Group

Workshop

Mental Health in Later Life

Age Concern

Training seminar

Parkinson’s Disease

Age Concern

Training seminar

Parkinson’s Disease Diagnosis

OnMedica Group Ltd

E-learning

Parkinson’s Disease Treatment

OnMedica Group Ltd

E-learning

Pre-Registration Mental Health Nursing Course

University of Teesside

Educational qualification course

Professional Diploma in Parkinson’s Disease Care Leeds Metropolitan University

Educational qualification course

Fighting Parkinson’s The Parkinson’s Disease Society in association with the ABPI, Royal Institution, Neurological Alliance and Ask about Medicines, is proud to announce: Fighting Parkinson’s – an open lecture on Parkinson’s, research and future treatments on Thursday 25 September 7–8.30pm at The Royal Institution 21 Albemarle Street London W1S 4BS

Key speakers include: • Baroness Susan Greenfield (Chair) renowed author and neuroscientist •D r Roger Barker Lecturer and Honorary Consultant in neurology at the University of Cambridge and Addenbrooke’s Hospital

To book tickets: call 020 7409 2992 email events@ri.ac.uk visit www.rigb.org

22 Parkinson’s News

Summer 2008 Issue 31

PDS conference on mental health and Parkinson’s The PDS, in collaboration with the British Journal of Hospital Medicine, is delighted to announce a one-day conference for health and social care professionals who would like to update their knowledge on the mental health aspects of Parkinson’s.

Our conference, called ‘Parkinson’s disease: responding to mental health issues in Parkinson’s’, is taking place on 23 September in Birmingham. Mental health symptoms have a significant impact on the lives of people with Parkinson’s and those around them. Health and social care professionals are key to ensuring that these problems are addressed and patients have the best quality of life.

“Mental health is often an overlooked aspect of Parkinson’s and its management. This conference is an ideal opportunity for professionals to increase their understanding of these problems and find practical ways to help their patients achieve the best quality of life.”

Daiga Heisters, PDS National Education Advisor The conference will bring together leading experts to discuss the central issues faced by professionals. It’s an excellent educational opportunity for anyone involved in the condition to update and extend their knowledge. Attendees will benefit from: • listening to the personal experience of someone caring for a person with Parkinson’s who also has mental health problems • learning about the different mental health symptoms that can affect people with Parkinson’s •a n update on the management of these clinical conditions and practices • an opportunity to review your own practice in this area The programme includes the following presentations on: • mental health issues in Parkinson’s – a carer’s perspective •g oing to the PROMS: learning about depression in Parkinson’s • i mpulse control disorders in Parkinson’s: all sex, drugs and rock’n’ roll?

•p redicting dementia in Parkinson’s – lessons from Cambridge •w hat can neuroimaging tell us about mental health issues in Parkinson’s?

• w here is the management of dementia in Parkinson’s going?

Book now!

Secure your place at this PDS conference: visit www.mahealthcareevents.co.uk call 01722 716 007

In addition, there will be workshops on evaluating mood disorder in Parkinson’s, and the interaction of cognitive dysfunction and gait in Parkinson’s.

Summer 2008 Issue 31

Parkinson’s News 23

Recent advances in diagnosis and treatment of Parkinson’s disease The conference, sponsored by GSK, was held in London on the 5 June. Professor Niall Quinn chaired the conference, and delegates included a variety of healthcare professionals, ranging from Parkinson’s Disease Nurse Specialists through to neurologists, physiotherapists and occupational therapists. The PDS was well represented too, including the Director of Research & Development, Dr Kieran Breen, who gave the first presentation of the day.

Results of the PDS’s Members’ Survey: Life with Parkinson’s Today – room for Improvement Dr Breen illustrated key areas that urgently need improving, and these themes were echoed by other speakers throughout the day: •D iagnosis: one in five people with Parkinson’s in the last year were diagnosed by their GP instead of being referred to a specialist • Information: 30% of people felt they were not provided with sufficient information at diagnosis • T herapy: although access to therapies such as physiotherapy, occupational therapy and speech language therapy is improving, the majority of people with Parkinson’s are still not being assessed for or receiving therapies to help them manage their condition •M edication: 60% of people say they are not allowed to self-medicate in hospital. This led to 75% of these not getting their medication on time which is critical for people with Parkinson’s

Reviewing the diagnosis of Parkinson’s what are the main mimics of Parkinson’s in clinical practice?

Dr Donald Grosset expanded on some of the problems that surround the diagnosis of Parkinson’s. Several other conditions are often confused with Parkinson’s, including dystonia, indeterminate tremor syndrome, multiple system atrophy and progressive nuclear palsy. Some drugs can induce parkinsonism, such as neuroleptics and antidepressants, which act by blocking dopamine receptors. This decreased sensitivity to dopamine can mimic Parkinson’s. Awareness of these issues is important, and diagnosis of Parkinson’s should always be confirmed by a specialist neurologist.

Practical guide to the use of anti-Parkinson’s medication Professor Carl Clarke steered us through the complex world of anti-Parkinson’s treatments and his experiences of their advantages and disadvantages. He discussed some of the recent studies of compulsive behaviours that can be a side effect of some drugs, particularly dopamine agonists. Deep brain stimulation was also mentioned – more investigation of who benefits most from the procedure is needed, and the 24 Parkinson’s News

current PDS-funded study PDSURG in Birmingham could tell us more about this.

Don’t ignore the elephants in the room – the importance of managing dementia and palliative care in Parkinson’s Dr Doug MacMahon’s presentation focused upon the high prevalence of dementia in the later stages of Parkinson’s, and the need to incorporate palliative care throughout the management of the condition. He stressed the importance of multidisciplinary care for people with Parkinson’s to deal with the motor and non-motor symptoms. Dr MacMahon also called for advanced planning for end-of life care which is often left far too late.

What have mendelian Parkinson’s genes told us about Parkinson’s?

Professor Nick Wood spoke about the genetic revolution in Parkinson’s over the last decade. A condition that was once thought to be entirely non-inherited now seems to have a strong genetic basis. Several genes have now been identified that increase susceptibility to Parkinson’s, and understanding how these genes fit into the disease has greatly advanced our understanding of how the condition develops. Some of the different mutations seem to cause variant forms of Parkinson’s (for instance early onset), which may benefit from different treatment regimes.

Is there a future for cell therapies in Parkinson’s?

The last speaker of the day was Dr Roger Barker, who addressed one of the most promising curative areas for Parkinson’s: cell transplants. Fetal transplants during the late 1980s and early 1990s yielded variable success; some people with Parkinson’s responded amazingly, while others received no benefit and suffered terrible side effects.

Fetal transplantation was subsequently abandoned as too unpredictable but Dr Barker believes that analysing why some people did well and others poorly will show us who can benefit from transplantation in the future. He is part of the PDSsupported International Working Group on Cell Therapies in Parkinson’s who are trying to identify which people are suitable to receive transplants, and eventually carry out a new trial to show that this type of treatment is viable.

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Dates for your diary September

October

First Meeting of the Federation of the European Societies of Neuropsychology 2–5 September in Edinburgh, UK www.ncore.org.uk

Royal College of GPs Annual Conference 2–3 October in Bournemouth, UK www.rcgpannualconference.org.uk

6th International Conference on Frontotemporal Dementias 3–5 September in Rotterdam, The Netherlands www.ftd2008.org/site Making the Evidence Work for your Patients and their Families: after diagnosis, after discharge, what do you tell people about living well with Parkinson’s disease and stroke?

4–5 September in Southampton, UK www.neurorehab2008.soton.ac.uk 10th Annual National Parkinson’s Disease Conference: responding to mental health issues in Parkinson’s 23 September in Birmingham, UK www.mahealthcareevents.co.uk Primary Care Live 30 September–1 October in London, UK www.primarycarelive.com/exhibiting

Parkinson’s Disease Nurse Specialist Association National Conference 2008 6–7 October in Warwick, UK www.pdnsa.net 9th Annual UK Movement Disorders Meeting 10–11 October in Chester, UK www.pdnmg.com

The 2nd World Congress on Controversies in Neurology 23–26 October in Athens, Greece www.comtecmed.com/cony/2008

November Progress: Advancing Parkinson’s Research, the PDS Research Conference 3–4 November in York, UK www.parkinsons.org.uk

Parkinson’s Science: Innovations and New Perspectives Educational symposia and webcast. Surgical Advances, Deep Brain Stimulation and Parkinson’s Disease 11 October www.pdf.org/webcast

Risk and Patient Safety 25–26 November in London, UK www.healthcare-events.co.uk

6th International Congress on Mental Dysfunctions and Other Non-motor Features in Parkinson’s Disease 16–19 October in Dresden, Germany www.kenes.com/pdment2008

Did it motivate you to evaluate and improve your practice and service delivery?

Parkinson’s Disease Study Day 16–19 October in Derby, UK www.ncore.org.uk

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The National Parkinson’s Conference 2008 16–17 October in Sydney, Australia www.parkinsonsnsw.org.au

Have you recently been to a conference?

Daiga Heisters, our National Education Advisor, would be delighted to hear from you.

Email dheisters@parkinsons.org.uk

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Parkinson’s research

New research articles Risk and prevention anti-hypertensives Use of antihypertensives and the risk of Parkinson disease Becker C et al (2008) Neurology; 15(70):1438–1444 BACKGROUND: Recent studies related angiotensin converting enzyme (ACE) inhibitors and calcium channel blockers to possible neuroprotective effects. Little is known about neuroprotection of angiotensin II (AT II) antagonists or beta-blockers. OBJECTIVE: To explore the association between antihypertensive drug use and the risk of developing a first-time diagnosis of Parkinson disease (PD). METHODS: This was a case-control analysis within the UK-based General Practice Research Database. Cases were >or=40 years of age with an incident PD diagnosis between 1994 and 2005. We matched one control to each PD case on age, sex, general practice, index date, and duration of previous history in the database. We assessed antihypertensive drug use by timing and by exposure duration. We calculated ORs using conditional logistic regression, adjusted for body mass index, smoking, and various cardiovascular, metabolic, and psychiatric diseases and dementia. RESULTS: We identified 3,637 cases with a first-time diagnosis of idiopathic PD and an equal number of matched controls. As compared to nonuse of antihypertensive drugs, the adjusted OR for current use of >or=30 prescriptions was 1.08 (95% CI 0.85 to 1.37) for ACE inhibitors, 0.91 (95% CI 0.41 to 2.00) for AT II antagonists, 1.16 (95% CI 0.95 to 1.41) for beta-blockers, and 0.77 (95% CI 0.63 to 0.95) for calcium channel blockers. CONCLUSIONS: Current long-term use of calcium channel blockers was associated with a significantly reduced risk of a Parkinson disease diagnosis, while the risk was not materially altered for users of angiotensin converting enzyme inhibitors or beta-blockers and, with less statistical precision, for users of angiotensin II antagonists.

inflammation Inflammation in Parkinson’s disease: an update Smith PF (2008) Current Opinion in Investigational Drugs; 9(5):478-484 Parkinson’s disease (PD) is a degenerative neurological disorder characterized by the loss of dopaminergic neurons in the substantia nigra pars compacta (SNpc) of the brain.

The loss of the dopaminergic projection from the SNpc deprives the striatum of dopamine and results in a myriad of motor signs, including tremor, rigidity and ataxia. Although the stimulus for the initiation of the degenerative process is not understood, 80% of the dopaminergic neurons in

26 Parkinson’s News

the SNpc must be lost before the clinical symptoms of the disease are observed. This suggests that the degenerative process is initiated many years before clinical presentation of the disease. The neurodegeneration observed in PD is accompanied by inflammatory processes, and it has been suggested that anti-inflammatory drugs may be useful in slowing disease progression once the clinical signs of PD have been observed. This review summarizes and evaluates the progress that has been made in this area of research since 2006.

diet Total cholesterol and the risk of Parkinson disease Hu G et al (2008) Neurology; 70(21):1972-1979 OBJECTIVE: To examine the association between serum total cholesterol at baseline and the risk of Parkinson disease (PD). METHODS: Study cohorts included 24,773 Finnish men and 26,153 women aged 25 to 74 years without a history of PD and stroke at baseline. Hazard ratios (HRs) of incident PD were estimated for different levels of total cholesterol. RESULTS: During a mean follow-up period of 18.1 years, 321 men and 304 women developed incident PD. After adjustment for confounding factors (age, study years, body mass index, systolic blood pressure, education, leisure-time physical activity, smoking, alcohol consumption, coffee and tea consumption, and history of diabetes), the HRs of PD at different levels of total cholesterol (<5, 5-5.9, 6-6.9, and >or=7 mmol/L) were 1.00, 1.33, 1.53, and 1.84 (p for trend = 0.035) in men; 1.00, 1.55, 1.57, and 1.86 (p for trend = 0.113) in women; and 1.00, 1.42, 1.56, and 1.86 (p for trend = 0.002) in men and women combined (adjusted also for sex). In both sexes combined, the increased risk of PD associated with increasing levels of serum total cholesterol was present both in subjects aged 25-44 years and in subjects aged 45-54 years at baseline, and in never smokers and smokers; however, no association was found among subjects aged 55 years or older at baseline.

CONCLUSION: This large prospective study suggests that high total cholesterol at baseline is associated with an increased risk of Parkinson disease.

Nutrition and the risk for Parkinson’s disease: review of the literature Gaenslen A et al (2008) Journal of Neural Transmission; 115(5):703-713 The etiology of Parkinson’s disease (PD), the second most common movement disorder, is still unclear. A genetic vulnerability, even in idiopathic PD seems likely. Additional factors like endo- and exotoxins are proposed to contribute to the induction and in some cases possibly acceleration

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of the disorder. Among the epidemiological risk factors dietary components are being broadly discussed. Moreover, there is a growing awareness of the population concerning possibly preventive dietary habits. However, dietary factors are difficult to assess. This review gives an overview on epidemiological studies addressing a possible relation of dietary compounds and the risk for PD.

Diagnosis diagnostic difficulties Changes in diagnosis with follow-up in an incident cohort of patients with parkinsonism Caslake R et al (2008) Journal of Neurology, Neurosurgery and Psychiatry; Epub ahead of print BACKGROUND: Accurate diagnosis of the cause of parkinsonism during life can be difficult, particularly at presentation but few studies have described changes in clinical diagnosis over time and the effect of applying strict research criteria. METHODS: Incident patients with a possible/probable diagnosis of degenerative or vascular parkinsonism had a standardised assessment at diagnosis and at yearly intervals thereafter at which the most likely clinical diagnosis was recorded without strict application of research criteria. Four years after the beginning of the incident period, formal research criteria were applied retrospectively using patients’ records at baseline and latest yearly follow-up. RESULTS: Of 82 incident patients, 66 underwent at least one year of follow-up. After a median follow-up of 29 months, clinical diagnosis had changed in 22 (33%). Most (82%) changes occurred in the first year and were due to the development of atypical clinical features, particularly early cognitive impairment; the results of brain imaging; responsiveness to levodopa; and the rate of disease progression. Diagnosis on research criteria differed from latest clinical diagnosis in eight participants (12%). Research criteria gave a “probable” diagnosis in 71% of parkinsonian patients at follow-up but only 15% at initial assessment. DISCUSSION: The clinical diagnosis of the cause of parkinsonism at presentation was often incorrect, even when made by those with a special interest.

In particular, Parkinson’s disease was overdiagnosed.

Research criteria were often unhelpful in clarifying the diagnosis even after a median of 29 months follow-up.

Further research is required to identify factors that may be used to improve the accuracy of diagnosis at initial assessment.

The specificity and sensitivity of transcranial ultrasound in the differential diagnosis of Parkinson’s disease: a prospective blinded study Gaenslen A et al (2008) Lancet Neurology; 7(5):417-424 BACKGROUND: Increased echogenicity of the substantia Summer 2008 Issue 31

nigra (SN), as determined by transcranial sonography (TCS), is characteristic of idiopathic Parkinson’s disease (iPD). The results of initial retrospective studies indicate that this ultrasound sign is specific for iPD and can help to differentiate it from atypical parkinsonian syndromes (aPS); however, these early studies were done in patients with later disease stages and known clinical diagnosis. We aimed to determine the diagnostic value of TCS in the early stages of parkinsonian syndromes, when the clinical symptoms often do not enable a definite diagnosis to be made.

METHODS: 60 patients who presented with the first, but still unclear, clinical symptoms of parkinsonism had TCS in this prospective blinded study. Investigators were blinded to the results of the clinical investigations, the ultrasound findings, and the diagnosis at time of investigation. The patients were followed-up every 3 months for 1 year to assess and re-evaluate the clinical symptoms. The patients in whom a clinical diagnosis could not be made with certainty were investigated with raclopride PET or dopamine transporter single-photon emission computed tomography (SPECT), or both. FINDINGS: A clinical diagnosis of parkinsonism could not be established at baseline in 38 patients. At 12 months, 39 patients were clinically categorised as having iPD. Compared with endpoint diagnosis, the sensitivity of TCS at baseline was 90%7% and the specificity was 82.4%; the positive predictive value of TCS for iPD was 92.9% and the classification accuracy was 88.3%. INTERPRETATION: TCS is an easy to implement, non-invasive, and inexpensive technique that could help in the early differential diagnosis of parkinsonian syndromes. The routine use of TCS in the clinic could enable disease-specific therapy to be started earlier.

clinical symptoms Diagnostic performance of clinical motor and nonmotor tests of Parkinson disease: a matched casecontrol study Bohnen NI et al (2008) European Journal of Neurology; 15(7):685-691 BACKGROUND AND PURPOSE: The diagnosis of Parkinson disease (PD) is made typically on the basis of motor abnormalities. PD is now recognized to have both motor and non-motor manifestations, indicating a need for the development of reliable non-motor diagnostic tests for PD. The aim of the present study was to compare the accuracy of various clinical motor and non-motor tests for the diagnosis of PD. METHODS: Forty-five PD patients (Hoehn and Yahr stages 1-3; mean age 59.5 +/- 10.0 years) and 45 healthy controls matched for gender and age completed a clinimetric motor test battery to assess limb bradykinesia, tremor and balance. Non-motor tests consisted of depression, anxiety and smell identification ratings. Area under the receiver operator characteristic curve (AUC) analysis was used. RESULTS: We found that smell identification was the most accurate predictor of the Parkinson’s News 27

presence of PD within the overall group of patients and matched control subjects (AUC = 0.886) and also in the subgroups of mild severity (Hoehn and Yahr stages 1-1.5; AUC = 0.923), young-onset (AUC = 0.888) and female PD patients (AUC = 0.797). The second best diagnostic test was the grooved pegboard test for the clinically most affected body side. CONCLUSIONS: We conclude that olfactory function is the most accurate diagnostic predictor within a heterogeneous sample of patients with PD. Driving assessment in Parkinson’s disease - a novel predictor of performance?

Cordell R et al (2008) Movement Disorders; Epub ahead of print Clinical symptoms of Parkinson’s disease (PD) can make driving hazardous. The removal of the privilege to drive reduces independence; nevertheless, to protect public safety, medical practitioners require reliable screening tools to decide whether a PD driver should be on the road.

The aims of this study were to examine whether clinical measures for PD patients and information provided by carers can be employed to predict impairment in driving performance. Fifty three idiopathic PD subjects and 129 age-matched controls were assessed on open roads. Prior to the driving assessment, participants were examined by a geriatrician. Various clinical measures of PD were recorded, and their carers filled out a questionnaire assessing driving ability of the patient. The driving performance of the participants declined with age (r = 0.89, P < 0.001). Drivers with PD were significantly less competent drivers than controls. The commonest errors committed on the road were indecisiveness in T-junctions and reduced usage of rear view and side mirrors. Only two of the clinical measures of PD patients showed links to driving performance.

Information provided by carers was significantly related to driving performance of PD patients (F((4,48)) = 3.87, Pvalue < 0.01, R(2) = 0.557). PD drivers were less competent drivers than the age-matched control group; moreover, standard clinical measures of PD have little value in predicting their driving performance. Carers can provide valuable information to doctors in identifying unsafe PD drivers.

genetics Phenotype, genotype, and worldwide genetic penetrance of LRRK2-associated Parkinson’s disease: a case-control study Healy DG et al (2008) Lancet Neurology; 7(7):583-590 BACKGROUND: Mutations in LRRK2, the gene that encodes leucine-rich repeat kinase 2, are a cause of Parkinson’s disease (PD). The International LRRK2 Consortium was established to answer three key clinical questions: can LRRK2-associated PD be distinguished from idiopathic PD; which mutations in LRRK2 are 28 Parkinson’s News

pathogenic; and what is the age-specific cumulative risk of PD for individuals who inherit or are at risk of inheriting a deleterious mutation in LRRK2? METHODS: Researchers from 21 centres across the world collaborated on this study.

The frequency of the common LRRK2 Gly2019Ser mutation was estimated on the basis of data from 24 populations worldwide, and the penetrance of the mutation was defined in 1045 people with mutations in LRRK2 from 133 families. The LRRK2 phenotype was defined on the basis of 59 motor and non-motor symptoms in 356 patients with LRRK2-associated PD and compared with the symptoms of 543 patients with pathologically proven idiopathic PD. FINDINGS: Six mutations met the consortium’s criteria for being proven pathogenic. The frequency of the common LRRK2 Gly2019Ser mutation was 1% of patients with sporadic PD and 4% of patients with hereditary PD; the frequency was highest in the middle east and higher in southern Europe than in northern Europe. The risk of PD for a person who inherits the LRRK2 Gly2019Ser mutation was 28% at age 59 years, 51% at 69 years, and 74% at 79 years. The motor symptoms (eg, disease severity, rate of progression, occurrence of falls, and dyskinesia) and non-motor symptoms (eg, cognition and olfaction) of LRRK2-associated PD were more benign than those of idiopathic PD. INTERPRETATION: Mutations in LRRK2 are a clinically relevant cause of PD that merit testing in patients with hereditary PD and in subgroups of patients with PD. However, this knowledge should be applied with caution in the diagnosis and counselling of patients.

Motor symptoms turning Sudden turn during walking is impaired in people with Parkinson’s disease Mak MK et al (2008) Experimental Brain Research; Epub ahead of print The present study compared kinematic strategies for making sudden directional changes during walking between patients with Parkinson’s disease (PwPD) and age-matched controls. Ten PwPD and 10 healthy elderly were visually cued to walk straight or to turn either 30 degrees or 60 degrees to the left or right, at the mid-point of a 9-m walkway. Three-dimensional kinematic data recorded: (1) the onset time of body segments in response to the turning cue, and (2) step width at the first ipsilateral foot contact (IFC(1)) marking the beginning of turn, the subsequent contralateral foot contact (CFC), and the second ipsilateral foot contact (IFC(2)) marking the completion of turn. For both 30 degrees and 60 degrees turns, PwPD had later onset times for lateral foot displacement, and larger time lags between the onset of body CoM and the lateral foot translation than healthy subjects (P < 0.05). Furthermore, PwPD had a significantly narrower step width than healthy Summer 2008 Issue 31

subjects (P < 0.05). Despite these differences, PwPD and control subjects scaled up turning speed and amplitude similarly for 30 degrees and 60 degrees turns. Our findings suggested that PwPD manifested specific difficulty in modifying their ongoing motor program to switch their locomotion from straight line to sideway direction, but their ability to scale movement speed and amplitude appeared to be preserved.

falls Impaired attention predicts falling in Parkinson’s disease Allcock LM et al Parkinsonism and Related Disorders; Epub ahead of print BACKGROUND: Cognitive deficits, in particular deficits of attention and executive function, may affect postural sway and balance in Parkinson’s disease (PD). Our objective was to determine whether measures of attention were associated with falls in a large cohort of subjects with PD studied prospectively. METHODS: Patients meeting UK PD Society Brain Bank Criteria were included. Assessment included UPDRS III and the Cognitive Drug Research computerised assessment battery (CDR) from which Power of Attention, Continuity of Attention, cognitive reaction time and reaction time variability were derived. Falls were assessed prospectively using monthly fall diaries returned over a year following baseline assessment. RESULTS: One hundred and sixty four subjects completed fall diary datasets. One hundred and three (63%) fell one or more times during the 12 month period. Regression analysis revealed an association of fall frequency with poorer Power of Attention and increased reaction time variability, which was retained after correcting for UPDRS scores.

CONCLUSIONS: Reduced power of attention and increased reaction time variability are associated with increased fall frequency in PD. This has implications for the identification of those most at risk of falling, and for the management and prevention of falls in this patient group.

Relationship between weight, levodopa and dyskinesia: the significance of levodopa dose per kilogram body weight Sharma JC et al (2008) European Journal of Neurology; 15(5):493-496 PURPOSE: Levodopa dose per kilogram body weight is reported to be a significant factor for dyskinesia in Parkinson’s disease. We have investigated this hypothesis in data from the studies comparing ropinirole versus levodopa as the initial therapy. METHODS: Data from the ropinirole versus levodopa studies 056 and REAL-PET in early Parkinson’s disease were pooled and manipulated to calculate levodopa dose per kilogram body weight. Logistic regression analysis was performed to investigate significant variables for the development of dyskinesia. Only the Summer 2008 Issue 31

patients on levodopa monotherapy or with ropinirole were analyzed. RESULTS: Analysis of levodopa therapy patients revealed that dyskinetic patients had received significantly higher absolute levodopa dose and levodopa dose per kilogram body weight. Logistic regression revealed that the most significant factor was the higher levodopa dose per kilogram body weight, P = 0.005, odds ratio 1.078, 95% CI 1.023-1.135; younger age was the second factor -P = 0.026. Variables of gender, absolute levodopa dose, weight, disease duration and initial motor Unified Parkinson’s disease rating score were not significant. CONCLUSION: Higher levodopa dose per kilogram body weight is an independently significant factor for developing dyskinesia.

This relationship should be considered in treatment of Parkinson’s disease patients aiming to prevent and manage dyskinesia.

Non-motor symptoms compulsive behaviours Prevalence of problem and pathological gambling in Parkinson’s disease Crockford D et al (2008) Journal of Gambling Studies; Epub ahead of print Pathological gambling (PG) has been identified in patients with Parkinson’s disease (PD) treated with dopamine agonists suggesting that dysregulation of brain dopaminergic activity may contribute to the development of gambling problems. The current study was undertaken to further establish the prevalence of problem and PG in patients with PD, identify any clinical correlates, and determine if psychiatric or substance use co-morbidity contributes to the increased prevalence of problem and PG. A cross-sectional survey of 140 serially recruited moderate to severe PD patients was undertaken utilizing the Canadian Problem Gambling Index, Alcohol Use Disorders Identification Test, Drug Abuse Screening Test, Beck Depression Inventory, Beck Anxiety Inventory, and MiniMental State Exam augmented by chart review, completed over an 8 month period. The 12 month prevalence of problem and PG in PD was 9.3% compared to 1.6% in the general population within a comparably aged sample. The increased prevalence of problem and PG in the PD group was related to dopamine agonist use and younger age, but not co-morbidity. Most subjects with problem and PG reported their gambling increased after being diagnosed with PD and starting treatment. The results suggest that brain dopaminergic activity is involved in the underlying neurobiology of problem and PG. Dopamine dysregulation syndrome, addiction and behavioral changes in Parkinson’s disease Merims D (2008) Parkinsonism and Related Disorders; 14(4):273-280 Parkinson’s News 29

Degeneration of the dopaminergic system in Parkinson’s disease and longstanding exposure to dopaminergic drugs may cause reward system malfunction. This may manifest as addiction to l-dopa and behavioral disturbances associated with the impulse control system. These disturbances include: gambling, excessive spending (shopping), hypersexuality and binge eating. We included one such patient’s personal story to emphasize the devastating consequences of these potentially reversible phenomena: the patient describes in his own words how gambling induced by an exposure dopamine agonist therapy significantly worsened his disease-related difficulties.

depression Depression in Parkinson’s disease: A double-blind, randomized, placebo-controlled pilot study of omega-3 fatty-acid supplementation da Silva TM (2008) Journal of Affective Disorders; Epub ahead of print BACKGROUND: Effect of fish oil supplementation in parkinsonian patients with depression measured by Montgomery-Asberg Rating Scale (MADRS), the Clinical Global Impressions Scale (CGI) and Beck Depression Inventory (BECK). METHOD: Double-blind, placebocontrolled study analyzed depression in 31 patients with Parkinson’s Disease and Major Depression (DSM-IV). The patients were double-blind separated in 2 groups that received fish oil (containing omega-3 fatty acids) or mineral oil capsules for 3 months; each group was separated in 2 new groups: one taking antidepressant medication and another one not taking it. RESULTS: 29 patients completed the 12-week trial, 58% were female and the mean age was 64.4 years old. Patients supplemented with fish oil showed a significant decrease in MADRS and CGI-Depression scores, and there was no difference among groups in BDI. 14 patients (42%) met criteria for >/=50% reduction in MADRS score, 7 patients (22%) met criteria for remission (final MADRS total score </=12), and 2 patients (6%) discontinued supplementation of fish oil. HPLC analysis of fatty-acid profile showed increase of omega-3 fatty acid in the erythrocyte membrane of patients taking fish oil. CONCLUSION: These results reveal that PD patients taking fish oil, with or without antidepressants, presented improvement in depressive symptoms and indicate that the intake of omega-3 can be used with an antidepressant effect or as adjuvant therapy with some other medication.

This is a first pilot study with parkinsonian patients and omega-3 supplementation and requires replication in a larger sample.

Comparison of desipramine and citalopram treatments for depression in Parkinson’s disease: a double-blind, randomized, placebo-controlled study Devos D et al Movement Disorders; 23(6):850-857 30 Parkinson’s News

Depression is one of the most common psychiatric disturbances in Parkinson’s disease (PD). Recent reviews have highlighted the lack of controlled trials and the ensuing difficulty in formulating recommendations for antidepressant use in PD. We sought to establish whether antidepressants provide real benefits and whether tricyclic and selective serotonin reuptake inhibitor (SSRI) antidepressants differ in their short-term efficacy, because the time to onset of therapeutic benefit remains an important criterion in depression. The short-term efficacy (after 14 and 30 days) of two antidepressants (desipramine, a predominantly noradrenergic reuptake inhibitor tricyclic and citalopram, a SSRI) was assessed in a double-blind, randomized, placebo- controlled study of 48 nondemented PD patients suffering from major depression. After 14 days, desipramine prompted an improvement in the Montgomery Asberg Depression Rating Scale (MADRS) score, compared with citalopram and placebo. Both antidepressants produced significant improvements in the MADRS score after 30 days. Mild adverse events were twice as frequent in the desipramine group as in the other groups. A predominantly noradrenergic tricyclic antidepressant induced a more intense short-term effect on parkinsonian depression than did an SSRI. However, desipramine’s lower tolerability may outweigh its slight short-term clinical advantage.

sleep problems Sleep disorders in Parkinson’s disease Comella CL (2008) Current Treatment Options in Neurology; 10(3):215-221 Sleep disorders in Parkinson’s disease (PD) are frequent and have numerous etiologies. Both nighttime sleep disturbances and daytime sleepiness can occur. The key to effective treatment is appropriate diagnosis. A careful interview of the patient and his or her bed partner provides direction for additional evaluations. Referral to a sleep specialist for quantitative studies is necessary to evaluate for rapid eye movement (REM) sleep behavior disorder, sleep apnea, periodic limb movements, and other sleep disorders. Excessive daytime sleepiness may be attributed to interrupted nighttime sleep or daytime medications (particularly the dopamine agonists) or it may be intrinsic to PD. When the diagnosis is established, treatment is directed toward the primary sleep disturbance. Fragmented sleep due to recurrence of PD symptoms may improve with the use of long-acting preparations of carbidopa/levodopa.

Sleep apnea is treated using continuous positive airway pressure, and REM sleep behavior disorder may improve using pharmacologic interventions, although controlled trials are lacking. Restless legs syndrome and periodic limb movements during sleep are treated with direct dopaminergic agonists at bedtime. Excessive daytime sleepiness related to the use of direct dopaminergic agonists may improve with dosage reduction or discontinuation.

Stimulants such as modafinil may provide modest benefit.

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Sleep disturbances in patients with parkinsonism De Cock VC et al (2008) Nature Clinical Practice Neurology; 4(5):254-66 Altered sleep and vigilance are among the most frequent symptoms, besides parkinsonism, in movement disorders.

As many as 60% of patients with Parkinson’s disease (PD) experience insomnia, 15-59% show rapid eye movement (REM) sleep behavior disorders (RBDs), and 30% show excessive daytime sleepiness. Insomnia is a distressing difficulty to maintain sleep, which is exacerbated by motor disability, painful dystonia, restless legs, dysuria, anxiety and depressed mood. Improving night-time motor control by overnight treatment with levodopa, transdermal or long-acting dopamine agonists, or bilateral subthalamus stimulation, can improve sleep continuity. RBDs are violent, enacted dreams that expose the patient or their sleeping partner to night-time injuries. A striking improvement of parkinsonism is observed during these behaviors in PD. RBDs are thought to be caused by lesions in the REM sleep atonia system, and can, in association with other early markers of neurodegenerative diseases, such as olfactory, cognitive and autonomic disturbances, precede parkinsonism by several years. Daytime sleepiness, often with a narcolepsy-like phenotype, is a common occurrence in PD, owing to lesions in the arousal systems of the brain.

The use of dopamine agonists increases the risk of sleep attacks, especially when driving, suggesting a drug-disease interaction.

pain Chronic pain in Parkinson’s disease: The crosssectional French DoPaMiP survey Nègre-Pagès L et al (2008) Movement Disorders; Epub ahead of print Pain is a frequent, but poorly studied symptom of Parkinson’s disease (PD). DoPaMiP survey aimed to assess the prevalence of chronic pain in PD, to describe PD patients with chronic pain, and to record analgesic consumption. About 450 parkinsonian patients underwent structured standardized clinical examination and completed self-reported questionnaires in a cross sectional survey.

Pains related or unrelated to PD were identified according to predefined criteria. About 98 patients with other chronic disorders than PD were examined to assess if pain was more frequent in PD than in this population. Two thirds parkinsonian patients (278 of 450) had chronic pain. Twentyfive patients with non-chronic pain (<3-month duration) were excluded from subsequent analysis. Twenty six percent (111 of 425) parkinsonian patients had pain unrelated to PD (“non-PD-pain”, caused mainly by osteoarthritis), while 39.3% (167 of 425) had chronic pain related to PD (“PDpain”). In this last group, PD was the sole cause of pain in 103 and indirectly aggravated pain of another origin (mainly osteoarthritis) in 64. Parkinsonian patients with “PD-pain” were younger at PD onset, had more motor complications, Summer 2008 Issue 31

more severe depressive symptoms than those without pain or with “non-PD pain.” “PD-pain” was more intense (P = 0.03), but was less frequently reported to doctors (P = 0.02), and was associated with less frequent analgesic consumption than “non-PD-pain.” Pain was twice more frequent in PD patients than in patients without PD after adjustment for osteo-articular comorbidities (OR = 1.9; 95% CI 1.2-3.2). Chronic pain is frequent but underreported in PD. Awareness of this problem should be increased and the assessment of analgesic strategies improved.

Exercise and physiotherapy The effect of exercise training in improving motor performance and corticomotor excitability in people with early Parkinson’s disease Fisher BE et al (2008) Archives of Physical Medicine and Rehabilitation; 89(7):1221-1229 OBJECTIVES: To obtain preliminary data on the effects of high-intensity exercise on functional performance in people with Parkinson’s disease (PD) relative to exercise at low and no intensity and to determine whether improved performance is accompanied by alterations in corticomotor excitability as measured through transcranial magnetic stimulation (TMS). DESIGN: Cohort (prospective), randomized controlled trial. SETTING: University-based clinical and research facilities. PARTICIPANTS: Thirty people with PD, within 3 years of diagnosis with Hoehn and Yahr stage 1 or 2. INTERVENTIONS: Subjects were randomized to high-intensity exercise using body weight-supported treadmill training, low-intensity exercise, or a zero-intensity education group. Subjects in the 2 exercise groups completed 24 exercise sessions over 8 weeks. Subjects in the zero-intensity group completed 6 education classes over 8 weeks. MAIN OUTCOME MEASURES: Unified Parkinson’s Disease Rating Scales (UPDRS), biomechanic analysis of self-selected and fast walking and sit-to-stand tasks; corticomotor excitability was assessed with cortical silent period (CSP) durations in response to single-pulse TMS. RESULTS: A small improvement in total and motor UPDRS was observed in all groups. High-intensity group subjects showed postexercise increases in gait speed, step and stride length, and hip and ankle joint excursion during self-selected and fast gait and improved weight distribution during sit-to-stand tasks. Improvements in gait and sit-tostand measures were not consistently observed in low- and zero-intensity groups. The high-intensity group showed lengthening in CSP. CONCLUSIONS: The findings suggest the dose-dependent benefits of exercise and that highintensity exercise can normalize corticomotor excitability in early PD.

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Treadmill walking in Parkinson’s disease patients: adaptation and generalization effect Bello O et al (2008) Movement Disorders; Epub ahead of print We examined the adaptation and generalization effect of one familiarization treadmill walking session on gait in patients with Parkinson’s disease (PD) with different degrees of disease severity. Eight moderate PD patients (Hoehn and Yahr stage 2-2.5), eight advanced PD patients (Hoehn and Yahr 3), and eight matched control subjects participated in this study. Subjects first walked overground on a 10-m walkway at a self-selected speed (pretreadmill).

They then performed a 20-min treadmill training session, followed by three trials of overground walking (Post1, Post2, Post3). Cadence, step length, speed, and coefficient of variation of stride time (CV) were recorded. During the treadmill session the advanced PD patients significantly decreased their cadence (t = 3.9, P </= 0.01) and increased their step length (t = 4.27, P </= 0.01) compared with pretreadmill walking. After the treadmill, all subjects walked overground significantly faster (F = 16.51 P </= 0.001) and with a larger step length (F = 13.03 P </= 0.01) than pretreadmill walking. The present study shows a specific adaptation to walk over the treadmill for the advanced PD patients. Moreover, this confirms the potential therapeutic use of the treadmill for PD gait rehabilitation since a single familiarization session lead to an increase in the step length and thus to the improvement of the main gait impairment in PD. Tai Chi improves balance and mobility in people with Parkinson disease Hackney ME et al (2008) Gait and Posture; Epub ahead of print This pilot study examines the effects of Tai Chi on balance, gait and mobility in people with Parkinson disease (PD).

Thirty-three people with PD were randomly assigned to either a Tai Chi group or a control group. The Tai Chi group participated in 20 1-h long training sessions completed within 10-13 weeks; whereas, the control group had two testing sessions between 10 and 13 weeks apart without interposed training. The Tai Chi group improved more than the control group on the Berg Balance Scale, UPDRS, Timed Up and Go, tandem stance test, six-minute walk, and backward walking. Neither group improved in forward walking or the one leg stance test. All Tai Chi participants reported satisfaction with the program and improvements in well-being. Tai Chi appears to be an appropriate, safe and effective form of exercise for some individuals with mildmoderately severe PD.

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Disease progression Effectiveness of an inpatient multidisciplinary rehabilitation program for people with Parkinson disease Ellis T et al (2008) Physical Therapy; 88(7):812-819 BACKGROUND AND PURPOSE: In the outpatient setting, it can be difficult to effectively manage the complex medical and rehabilitation needs of people with Parkinson disease (PD). A multidisciplinary approach in the inpatient rehabilitation environment may be a viable alternative.

The purposes of this study were: (1) to investigate the effectiveness of an inpatient rehabilitation program for people with a primary diagnosis of PD, (2) to determine whether gains made were clinically meaningful, and (3) to identify predictors of rehabilitation outcome. SUBJECTS: Sixty-eight subjects with a diagnosis of PD were admitted to an inpatient rehabilitation hospital with a multidisciplinary movement disorders program. METHODS: Subjects participated in a rehabilitation program consisting of a combination of physical therapy, occupational therapy, and speech therapy for a total of 3 hours per day, 5 to 7 days per week, in addition to pharmacological adjustments based on data collected daily. A pretest-posttest design was implemented. The differences between admission and discharge scores on the Functional Independence Measure (FIM) (total, motor, and cognitive scores), Timed “Up & Go” Test, 2-Minute Walk Test, and Finger Tapping Test were analyzed. RESULTS: An analysis of data obtained for the 68 subjects admitted with a diagnosis of PD revealed significant improvements across all outcome measures from admission to discharge. Subjects with PD whose medications were not adjusted during their admission (rehabilitation only) (n=10) showed significant improvements in FIM total, motor, and cognitive scores. Improvements exceeded the minimal clinically important difference in 71% of the subjects. Prior level of function at admission accounted for 20% of the variance in the FIM total change score. DISCUSSION AND CONCLUSION: The results suggest that subjects with a diagnosis of PD as a primary condition benefited from an inpatient rehabilitation program designed to improve functional status.

Quality of life Quality of life in Parkinson’s disease: the relative importance of the symptoms Rahman S et al (2008) Movement Disorders; Epub ahead of print A body of literature now exists, which demonstrates that idiopathic Parkinson’s disease (PD) has a major negative impact on quality of life (QoL), and that depression and cognitive impairment are among the main predictors of poor QoL in this disorder. Relatively little work has been Summer 2008 Issue 31

done to assess the differential contribution of the specific symptoms of PD to QoL, which was the aim of this study.

One hundred thirty patients with PD completed a booklet of questionnaires, which included the PDQ39 as a diseasespecific measure of QoL, a symptom checklist, a mobility checklist, as well as patient ratings of disease stage and disability. The results indicated that the contribution of physical, medication-related, and cognitive/psychiatric symptoms to QoL can be significant. Sudden unpredictable on/off states, difficulty in dressing, difficulty in walking, falls, depression, and confusion were PD symptoms, which significantly influenced QoL scores. Among the mobility problems associated with PD, start hesitation, shuffling gait, freezing, festination, propulsion, and difficulty in turning had a significant effect on QoL scores. In addition to depression and anxiety, the major predictors of QoL were shuffling, difficulty turning, falls, difficulty in dressing, fatigue, confusion, autonomic disturbance particularly urinary incontinence, unpredictable on/off fluctuations, and sensory symptoms such as pain. The implications of these results for the medical management of PD are discussed.

Changes in quality of life in people with Parkinson’s disease left untreated at diagnosis Asimakopoulos P et al (2008) Journal of Neurology, Neurosurgery and Psychiatry; 79(6):716-718 BACKGROUND: The issue of whether to adopt a “wait and watch” strategy or to initiate drug therapy soon after diagnosis in Parkinson’s disease (PD) has been the subject of some debate. A recent observational study supported early treatment by demonstrating deterioration in selfreported health status in those left untreated, but not those who received therapy. We aimed to replicate this observation. METHODS: People with PD from a prospective incidence study underwent follow-up with yearly clinical assessment of parkinsonian impairment (Unified Parkinson’s Disease Rating Scale (UPDRS)) and self-reported health status (Parkinson’s Disease Questionnaire (PDQ-39)).

Two year outcomes were compared with those who started treatment within 1 year of diagnosis and those left untreated. RESULTS: 42 patients with PD were followed-up for 2 years, of whom 26 started treatment during the first year and 16 remained untreated. Those receiving treatment had significantly higher UPDRS and PDQ-39 scores at baseline. There was no significant deterioration in PDQ39 score in either group (median change untreated 0.8 vs treated 4.0; p = 0.47), despite a significant difference in the change in motor UPDRS scores (untreated 6.0 vs treated -6.0; p = 0.03). CONCLUSION: Given the lack of significant deterioration in the PDQ-39 in untreated patients, we believe a “wait and watch” strategy for the treatment of newly diagnosed PD remains a credible approach unless randomised trials prove otherwise.

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Carers Caregivers’ experiences of caring for a husband with Parkinson’s disease and psychotic symptoms Williamson C et al (2008) Social Science and Medicine; Epub ahead of print Psychotic symptoms are a common nonmotor complication in Parkinson’s disease. Research exploring the impact of psychotic symptoms on coping by caregivers of people with Parkinson’s disease is sparse. The aim of this study was to explore the experiences of individuals living with a partner with Parkinson’s disease and psychotic symptoms.

Ten female caregivers from the north west of England were interviewed and interpretative phenomenological analysis was used to identify themes within their accounts. Four themes emerged from the analysis: uncertainty and the search for understanding; adapting to symptoms over time; the contribution of psychosis to changing identities; and the use of social comparison as a coping strategy. These themes highlighted the changing identity of their partner as a person with Parkinson’s disease and a number of strategies that caregivers had developed to cope with psychotic symptoms. The themes are explored in detail and clinical implications are considered.

Deep brain stimulation Neuropsychological and psychiatric changes after deep brain stimulation for Parkinson’s disease: a randomised, multicentre study Witt K et al (2008) Lancet Neurology; 7(7):605-614 BACKGROUND: Deep brain stimulation (DBS) of the subthalamic nucleus (STN) reduces motor symptoms in patients with Parkinson’s disease (PD) and improves their quality of life; however, the effect of DBS on cognitive functions and its psychiatric side-effects are still controversial. To assess the neuropsychiatric consequences of DBS in patients with PD we did an ancillary protocol as part of a randomised study that compared DBS with the best medical treatment. METHODS: 156 patients with advanced Parkinson’s disease and motor fluctuations were randomly assigned to have DBS of the STN or the best medical treatment for PD according to the German Society of Neurology guidelines. 123 patients had neuropsychological and psychiatric examinations to assess the changes between baseline and after 6 months.

The primary outcome was the comparison of the effect of DBS with the best medical treatment on overall cognitive functioning (Mattis dementia rating scale). Secondary outcomes were the effects on executive function, depression, anxiety, psychiatric status, manic symptoms, and quality of life. Analysis was per protocol. The study is registered at ClinicalTrials.gov, number NCT00196911.

FINDINGS: 60 patients were randomly assigned to receive Parkinson’s News 33

STN-DBS and 63 patients to have best medical treatment.

After 6 months, impairments were seen in executive function (difference of changes [DBS-best medical treatment] in verbal fluency [semantic] -4.50 points, 95% CI -8.07 to -0.93, Cohen’s d=-;0.4; verbal fluency [phonemic] -3.06 points, -5.50 to -0.62, -0.5; Stroop 2 naming colour error rate -0.37 points, -0.73 to 0.00, -0.4; Stroop 3 word reading time -5.17 s, -8.82 to -1.52, -0.5; Stroop 4 colour naming time -13.00 s, -25.12 to -0.89, -0.4), irrespective of the improvement in quality of life (difference of changes in PDQ-39 10.16 points, 5.45 to 14.87, 0.6; SF-36 physical 16.55 points, 10.89 to 22.21, 0.9; SF-36 psychological 9.74 points, 2.18 to 17.29, 0.5). Anxiety was reduced in the DBS group compared with the medication group (difference of changes in Beck anxiety inventory 10.43 points, 6.08 to 14.78, 0.8). Ten patients in the DBS group and eight patients in the best medical treatment group had severe psychiatric adverse events. INTERPRETATION: DBS of the STN does not reduce overall cognition or affectivity, although there is a selective decrease in frontal cognitive functions and an improvement in anxiety in patients after the treatment.

These changes do not affect improvements in quality of life.

DBS of the STN is safe with respect to neuropsychological and psychiatric effects in carefully selected patients during a 6-month follow-up period.

Cell-based therapy Foetal grafts Lewy body-like pathology in long-term embryonic nigral transplants in Parkinson’s disease Kordower JH et al (2008) Nature Medicine; 14(5):504-506 Fourteen years after transplantation into the striatum of an individual with Parkinson’s disease, grafted nigral neurons were found to have Lewy body-like inclusions that stained positively for alpha-synuclein and ubiquitin and to have reduced immunostaining for dopamine transporter. These pathological changes suggest that Parkinson’s disease is an ongoing process that can affect grafted cells in the striatum in a manner similar to host dopamine neurons in the substantia nigra. These findings have implications for cell-based therapies and for understanding the cause of Parkinson’s disease.

Dopamine neurons implanted into people with Parkinson’s disease survive without pathology for 14 years Mendez I et al (2008) Nature Medicine; 14(5):507-509 Postmortem analysis of five subjects with Parkinson’s disease 9-14 years after transplantation of fetal midbrain cell suspensions revealed surviving grafts that included dopamine and serotonin neurons without pathology.

These findings are important for the understanding of 34 Parkinson’s News

the etiopathogenesis of midbrain dopamine neuron degeneration and future use of cell replacement therapies.

Neurons derived from reprogrammed fibroblasts functionally integrate into the fetal brain and improve symptoms of rats with Parkinson’s disease Wernig M et al (2008) Proceedings of the National Academy of Sciences of the USA; 105(15):5856-5861 The long-term goal of nuclear transfer or alternative reprogramming approaches is to create patientspecific donor cells for transplantation therapy, avoiding immunorejection, a major complication in current transplantation medicine. It was recently shown that the four transcription factors Oct4, Sox2, Klf4, and c-Myc induce pluripotency in mouse fibroblasts. However, the therapeutic potential of induced pluripotent stem (iPS) cells for neural cell replacement strategies remained unexplored. Here, we show that iPS cells can be efficiently differentiated into neural precursor cells, giving rise to neuronal and glial cell types in culture. Upon transplantation into the fetal mouse brain, the cells migrate into various brain regions and differentiate into glia and neurons, including glutamatergic, GABAergic, and catecholaminergic subtypes.

Electrophysiological recordings and morphological analysis demonstrated that the grafted neurons had mature neuronal activity and were functionally integrated in the host brain.

Furthermore, iPS cells were induced to differentiate into dopamine neurons of midbrain character and were able to improve behavior in a rat model of Parkinson’s disease upon transplantation into the adult brain. We minimized the risk of tumor formation from the grafted cells by separating contaminating pluripotent cells and committed neural cells using fluorescence-activated cell sorting. Our results demonstrate the therapeutic potential of directly reprogrammed fibroblasts for neuronal cell replacement in the animal model.

Neurotrophic factors Gene therapy Results from a phase I safety trial of hAADC gene therapy for Parkinson disease Eberling JL et al (2008) Neurology; 70(21):1980-1983 BACKGROUND: In a primate model of Parkinson disease (PD), intrastriatal infusion of an adeno-associated viral (AAV) vector containing the human aromatic l-amino acid decarboxylase (hAADC) gene results in robust gene expression. After gene transfer, low doses of systemically administered l-dopa are converted to dopamine in the transduced striatal neurons, resulting in behavioral improvement without the side effects typically associated with higher doses of l-dopa. These studies led to the initiation of a phase I safety trial. Here we report the findings Summer 2008 Issue 31

for the first cohort of five patients. METHODS: Patients with moderate to advanced PD received bilateral infusion of a low dose of the AAV-hAADC vector into the putamen. PET scans using the AADC tracer, 6-[18F]fluoro-l-m-tyrosine (FMT), were performed at baseline and at 1 and 6 months after infusion as an in vivo measure of gene expression.

RESULTS: PET results showed an average 30% increase in FMT uptake (K(i)(c)) in the putamen after gene transfer.

Preliminary analysis of clinical data indicates a modest improvement, but absence of a control and the nonblinded analyses make interpretation difficult. CONCLUSIONS: Thus far, this gene therapy approach has been well tolerated and shows PET evidence of sustained gene expression.

These initial findings demonstrate the safety of the therapy; higher doses of adeno-associated viral vector containing the human aromatic l-amino acid decarboxylase gene in the next cohort of patients may further increase dopamine production in the putamen and provide more profound clinical benefit.

(p=0.105), and the activities of daily living subscore (part II) of the UPDRS (p=0.080). (18)F-levodopa-uptake PET did not change after treatment with either dose of CERE120. INTERPRETATION: The initial data support the safety, tolerability, and potential efficacy of CERE-120 as a possible treatment for PD; however, these results must be viewed as preliminary until data from blinded, controlled clinical trials are available.

Safety and tolerability of intraputaminal delivery of CERE-120 (adeno-associated virus serotype 2neurturin) to patients with idiopathic Parkinson’s disease: an open-label, phase I trial Marks WJ Jr et al (2008) Lancet Neurology; (5):400-408 BACKGROUND: There is an urgent need for therapies that slow or reverse the progression of Parkinson’s disease (PD). Neurotrophic factors can improve the function of degenerating neurons and protect against further neurodegeneration, and gene transfer might be a means to deliver effectively these factors to the brain. The aim of this study was to assess the safety, tolerability, and potential efficacy of gene delivery of the neurotrophic factor neurturin.

METHODS: In this phase I, open-label clinical trial, 12 patients aged 35-75 years with a diagnosis of PD for at least 5 years in accordance with the UK Brain Bank Criteria received bilateral, stereotactic, intraputaminal injections of adeno-associated virus serotype 2-neurturin (CERE120). The first six patients received doses of 1.3x10(11) vector genomes (vg)/patient, and the next six patients received 5.4x10(11) vg/patient. This trial is registered with ClinicalTrials.gov, number NCT00252850. FINDINGS: The procedure was well tolerated. Extensive safety monitoring in all patients revealed no clinically significant adverse events at 1 year. Several secondary measures of motor function showed improvement at 1 year; for example, a mean improvement in the off-medication motor subscore of the Unified Parkinson’s Disease Rating Scale (UPDRS) of 14 points (SD 8; p=0.000121 [36% mean increase; p=0.000123]) and a mean increase of 2.3 h (2; 25% group mean increase; p=0.0250) in on time without troublesome dyskinesia were seen. Improvements in several secondary measures were not significant, including the timed walking test in the off condition (p=0.053), the Purdue pegboard test of hand dexterity (p=0.318), the reduction in off time Summer 2008 Issue 31

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Drug update Dopamine Agonists Dopamine agonist therapy in early Parkinson’s disease Stowe RL et al (2008) Cochrane Database Systematic Reviews; (2):CD006564 BACKGROUND: Dopamine agonists are being used increasingly as first line treatment for Parkinson’s disease, but there remains uncertainty about their clinical and cost-effectiveness relative to levodopa. OBJECTIVES: This meta-analysis aims to quantify more reliably the benefits and risks of dopamine agonists compared to placebo or levodopa in early Parkinson’s disease. SEARCH STRATEGY: We searched CENTRAL (The Cochrane Library), MEDLINE, EMBASE, PubMed, LILACS and Web of Science, plus major journals in the field, abstract books, conference proceedings and reference lists of retrieved publications. SELECTION CRITERIA: Randomised trials comparing an orally administered dopamine agonist (with or without levodopa) versus placebo or levodopa or both placebo and levodopa in participants with early Parkinson’s disease. DATA COLLECTION AND ANALYSIS: Two authors independently extracted data on clinicianrated disability, motor complications, other side-effects, treatment concordance, levodopa dose and mortality.

MAIN RESULTS: Twenty-nine eligible trials, involving 5247 participants, were identified. Participants randomised to a dopamine agonist were less likely to develop dyskinesia (odds ratio (OR) 0.51, 95% confidence interval (CI) 0.43 to 0.59; P < 0.00001), dystonia (OR 0.64, 95% CI 0.51 to 0.81; P = 0.0002) and motor fluctuations (OR 0.75, 95% CI 0.63 to 0.90; P = 0.002) than levodopa-treated participants. However, various ‘non-motor’ side-effects, including oedema (OR 3.68, 95% CI 2.62 to 5.18; P < 0.00001), somnolence (OR 1.49, 95% CI 1.12 to 2.00; P = 0.007), constipation (OR 1.59, 95% CI 1.11 to 2.28; P = 0.01), dizziness (OR 1.45, 95% CI 1.09 to 1.92; P = 0.01), hallucinations (OR 1.69, 95% CI 1.13 to 2.52; P = 0.01) and nausea (OR 1.32, 95% CI 1.05 to 1.66; P = 0.02) were all increased in agonist-treated participants (compared with levodopa-treated participants). Agonist-treated participants were also significantly more likely to discontinue treatment due to adverse events (OR 2.49, 95% CI 2.08 to 2.98; P < 0.00001). Finally symptomatic control of Parkinson’s disease was better with levodopa than with agonists, but data were reported too inconsistently and incompletely to meta-analyse. AUTHORS’ CONCLUSIONS: This metaanalysis confirms that motor complications are reduced with dopamine agonists compared to levodopa, but also establishes that other important side-effects are increased and symptom control is poorer with agonists. Larger, longterm comparative trials assessing patient-rated quality of life 36 Parkinson’s News

are needed to assess more reliably the balance of benefits and risks of dopamine agonists compared to levodopa.

Fourteen-year final report of the randomized PDRGUK trial comparing three initial treatments in PD Katzenschlager R et al (2008) Neurology; Epub ahead of print BACKGROUND: Ten-year follow-up results from the PD Research Group of the United Kingdom trial demonstrated that there were no long-term advantages to initiating treatment with bromocriptine compared with L-dopa in early Parkinson disease (PD). Increased mortality in patients on selegiline combined with L-dopa led to premature termination of this arm after 6 years. METHODS: Between 1985 and 1990, 782 patients were recruited into an open pragmatic multicenter trial and were randomized to L-dopa/ decarboxylase inhibitor (DDCI), L-dopa/DDCI plus selegiline, or bromocriptine. The main endpoints were mortality, disability, and motor complications. For final follow-up, health-related quality of life and mental function were also assessed. RESULTS: Median duration of follow-up at final assessment was 14 years in the 166 (21%) surviving participants who could be contacted. After adjustment for baseline characteristics, disability scores were better in the L-dopa than in the bromocriptine arm (Webster: 16.6 vs 19.8; p = 0.03; Northwestern University Disability: 34.3 vs 30.0, p = 0.05). Physical functioning (difference 20.8; 95% CI 10.0, 31.6; p < 0.001) and physical summary scores (difference 5.2; 95% CI 0.7, 9.7; p = 0.03) on the 36-item short-form health survey were also superior on L-dopa.

Differences in mortality rates and prevalence of dyskinesias, motor fluctuations, and dementia were not significantly different. CONCLUSION: Initial treatment with the dopamine agonist bromocriptine did not reduce mortality or motor disability and the initially reduced frequency in motor complications was not sustained. We found no evidence of a long-term benefit or clinically relevant disease-modifying effect with initial dopamine agonist treatment.

apomorphine Intermittent subcutaneous apomorphine therapy for ‘off’ episodes in Parkinson’s disease: a 6-month open-label study Trosch RM et al (2008) CNS Drugs; 22(6):519-527 PURPOSE: The outpatient follow-up phase of the apomorphine (APO) 303 study assessed the longterm efficacy and safety of intermittent subcutaneous apomorphine for ‘off’ episodes in patients with advanced Parkinson’s disease. METHODS: We conducted a 6month open-label outpatient extension of an in-office dose-escalation study. Patients received apomorphine at Summer 2008 Issue 31

a dose considered optimal based on safety and efficacy assessments during the dose-titration phase. Outpatient evaluation visits were scheduled at 1 and 2 weeks, and 1, 4 and 6 months. Efficacy parameters included changes in Unified Parkinson’s Disease Rating Scale (UPDRS) motor scores; safety assessments included blood pressure (BP) monitoring. RESULTS: Apomorphine significantly (p < 0.05) reduced UPDRS motor scores at 20, 40 and 90 minutes post-dose versus pre-dose at all evaluation visits.

Significant (p < 0.1) reductions from pre-dose in seated and standing systolic BP and diastolic BP were noted at various timepoints post-dose at evaluation visits; however, the changes did not increase over the course of the outpatient phase. The incidence of symptomatic hypotension also did not increase with long-term apomorphine use.

CONCLUSIONS: The efficacy and general tolerability of subcutaneous apomorphine throughout this open-label outpatient study suggest that it is suitable for the long-term acute treatment of ‘off’ episodes in patients with advanced Parkinson’s disease.

pergolide Valvular heart disease in patients with Parkinson’s disease treated with pergolide. Course following treatment modifications Dupuy D et al (2008) Journal of Neurology; Epub ahead of print Valvular heart abnormalities have been reported in patients with Parkinson’s disease (PD) treated with pergolide. However, the incidence and severity of these abnormalities vary from study to study and their course after drug withdrawal has not been systematically assessed.

Objectives To estimate the frequency and severity of valvular heart abnormality and its possible reversibility after drug withdrawal in a casecontrol study. METHODS : All PD patients in the Amiens area treated with pergolide were invited to attend a cardiologic assessment including transthoracic echocardiography. Thirty PD patients participated in the study. A second echocardiography was performed (median interval: 13 months) after pergolide withdrawal (n = 10 patients). Controls were age- and sexmatched non-PD patients referred to the cardiology department. RESULTS : Compared to controls, aortic regurgitation (OR: 3.1; 95 % IC: 1.1-8.8) and mitral regurgitation (OR: 10.7; 95 % IC: 2.1-53) were more frequent in PD patients (tricuspid: NS). The number of affected valves (n = 2.4 +/- 0.7) and the sum of regurgitation grades (n = 2.8 +/- 1.09) were higher (p = 0.008 and p = 0.006, respectively) in the pergolide group. Severity of regurgitation was not correlated with pergolide cumulative dose. A restrictive pattern of valvular regurgitation, suggestive of the role of pergolide, was observed in 12/30 (40 %) patients including two with heart failure. Pergolide was discontinued in 10 patients with valvular heart disease, resulting in a lower regurgitation grade (p = 0.01) at the second transthoracic Summer 2008 Issue 31

echocardiography and the two patients with heart failure returned to nearly normal clinical examination. This study supports the high frequency of restrictive valve regurgitation in PD patients treated with pergolide and reveals that a significant improvement is usual when the treatment is converted to non-ergot dopamine agonists.

rotigotine Rotigotine transdermal system for the treatment of Parkinson’s disease Pham DQ et al (2008) Clinical Therapeutics; 30(5):813-824 Background: Levodopa has been the cornerstone of the treatment of Parkinson’s disease (PD) for >30 years, but long-term levodopa therapy is associated with development of such motor complications as motor fluctuations, dyskinesias, and drug-induced involuntary movements.

Rotigotine is a dopamine agonist with high affinity for the D(2) receptor. Rotigotine transdermal system, the first such system approved by the US Food and Drug Administration for the management of PD, has been formulated to deliver a consistent concentration of drug to the bloodstream with the goal of minimizing the complications associated with pulsatile dosing. Objective: This article reviews the clinical pharmacology, pharmacokinetic and pharmacodynamic properties, tolerability, and efficacy of rotigotine transdermal system in the treatment of PD. Methods: MEDLINE (1966April 2008) and International Pharmaceutical Abstracts (1971-April 2008) were searched using the term rotigotine.

All prospective, randomized clinical efficacy trials in humans were included. The reference lists of the identified articles were reviewed for additional publications. Results: In clinical trials, rotigotine transdermal system at doses ranging from 4.5 to 67 mg/d was associated with significant clinical benefit in patients with early and advanced PD. In 4 randomized, doubleblind, placebo-controlled trials of 6 months’ duration, patients receiving rotigotine transdermal system had significant improvements on the Unified Parkinson’s Disease Rating Scale (UPDRS) part II (activities of daily living) that ranged from -0.3 to -4.2, compared with +0.92 to -2 for placebo (P < 0.001, rotigotine transdermal system vs placebo). In one trial that included pramipexole as an active comparator, the change in UPDRS II at 6 months was -4.2 in the rotigotine transdermal system group and 4.6 in the pramipexole group (P = NS, rotigotine transdermal system vs pramipexole). Changes on the UPDRS III (motor examination) at 6 months ranged from -3.58 to -8.7 with rotigotine transdermal system, compared with +0.38 to -4.3 in the placebo group and -10.3 in the pramipexole group (P < 0.001 vs placebo; P = NS vs pramipexole). The change in “off” time at 6 months ranged from -2.1 to -2.7 hours with rotigotine transdermal system, compared with -0.9 hour with placebo and -2.8 hours with pramipexole (P < 0.001 vs placebo; P = NS vs pramipexole). The proportion of patients achieving a >30% reduction in “off” time ranged from 55.1% to 59.7% of patients receiving rotigotine transdermal system, Parkinson’s News 37

compared with 34.5% to 35.0% of patients receiving placebo and 67.0% of patients receiving pramipexole (P<0.001 vs placebo; P = NS vs pramipexole). The most commonly reported adverse event was application-site reaction, occurring in 9% to 46% of patients receiving rotigotine transdermal system, compared with 5% to 13% of patients receiving placebo. Other adverse events occurring in >20% of patients receiving rotigotine transdermal system were somnolence(8%\2-33%)and nausea(12%-49%). Less than 5% of patients assigned to rotigotine transdermal system discontinued study medication because of an adverse drug event. Conclusions: The available evidence suggests that rotigotine transdermal system was effective compared with placebo in decreasing morbidity in patients with early and advanced PD. The most commonly reported adverse events associated with rotigotine transdermal system were application-site reaction, nausea, and somnolence. Additional clinical trials are needed to determine the long-term tolerability profile of rotigotine transdermal system and its clinical efficacy and tolerability compared with oral dopamine agonists.

Levodopa Sympathetic modulation by levodopa reduces vascular risk factors in Parkinson disease Scigliano G et al (2008) Parkinsonism and Related Disorders; Epub ahead of print BACKGROUND: Sympathetic nervous system hyperactivity promotes vascular disorders by its catabolic effects and by increasing arterial blood pressure. Levodopa-derived dopamine modulates sympathetic overactivity and is known to reduce blood pressure, but its effects on glucose and lipid metabolism have not been studied in large series of patients. METHODS: We retrospectively examined 483 consecutive parkinsonian patients, admitted to a single institute between 1970 and 1987, before statins were available. We compared risk factors for vascular disease in the 305 who were on levodopa with the 178 who had never received the drug. RESULTS: On admission levodopa-treated patients had significantly lower plasma levels of triglycerides, total cholesterol and lipids, and lower frequency of diabetes and hypertension than untreated patients. Mean body mass index, resting blood pressure, fasting plasma glucose, and smoking did not differ between the groups. A year after enrolment 160 patients were re-hospitalized; of these 63 had started levodopa during first hospitalization. In these new levodopa users total cholesterol, triglycerides and lipids had reduced to levels comparable with those of longer-term levodopa users.

CONCLUSION: Levodopa use in parkinsonian patients is associated with reduced vascular risk factors. In causal terms this finding might be attributed to the inhibitory action 38 Parkinson’s News

of levodopa-derived dopamine on the sympathetic nervous system.

Fluctuating functions related to quality of life in advanced Parkinson disease: effects of duodenal levodopa infusion Isacson D et al (2008) Acta Neurologica Scandinavica; Epub ahead of print Objective - To assess fluctuations in quality of life (QoL) and motor performance in patients with advanced Parkinson disease (PD) treated with continuous daytime duodenal levodopa/carbidopa infusion or conventional therapy. Methods - Of 18 patients completing a 6-week trial (DIREQT), 12 were followed for up to 6 months and assessed using electronic diaries and the PD Questionnaire39 (PDQ-39). Results - During the trial and follow-up, major diurnal fluctuations were observed, especially for hyperkinesia, ‘off’ time, ability to walk and depression.

Duodenal infusion was associated with significantly more favourable outcomes compared with conventional treatment for satisfaction with overall functioning, ‘off’ time and ability to walk, with improved outcomes with PDQ-39.

Conclusions - Relative to conventional treatment, infusion therapy may stabilize and significantly improve motor function and patient’s QoL. The potential for daily fluctuation in PD symptoms means single measures of treatment effectiveness can result in bias in effect estimates and hence repeated measures are recommended.

New drugs in development safinamide An expert opinion on safinamide in Parkinson’s disease Onofrj M et al (2008) Expert Opinion on Investigational Drugs; 17(7):1115-1125 BACKGROUND: Dopamine replacement therapies (levodopa, dopamine receptor agonists, anticholinergics, monoamine oxidase B inhibitors, and catechol-Omethyltransferase inhibitors) remain the cornerstones of therapeutic interventions for Parkinson’s disease (PD).

Despite the treatment options for PD symptoms, a cure remains elusive. An optimal treatment would be one that combined relief in both motor and nonmotor symptoms with neuroprotective properties. Safinamide is an investigational drug for PD currently in development as add-on therapy to both dopamine agonists and levodopa. Safinamide is a unique molecule with a novel mode of action, targeting both dopaminergic and glutaminergic systems, and potentially provides motor symptom control. Preliminary results from experimental models suggest potential Summer 2008 Issue 31

neuroprotective effects. Studies on the potential effects on nonmotor symptoms are ongoing. OBJECTIVE: To review the mechanism of action and pharmacokinetics, and to evaluate the available clinical safety and efficacy results of safinamide. METHODS: A search of the electronic database MEDLINE (PubMed, no time limits) was performed on 14 December 2007. The full text of all citations was obtained for review. Furthermore, two abstracts on safinamide published as proceedings of a European conference were reviewed.

RESULTS/CONCLUSION: Safinamide is a promising investigational drug for PD with a novel mode of action.

Early reports confirm the potential efficacy of safinamide in PD. Further studies on potential effects on cognition and neuroprotection are needed.

istradefylline A 12-week, placebo-controlled study (6002-US-006) of istradefylline in Parkinson disease Stacy M et al (2008) Neurology; 70(23):2233-2240 BACKGROUND: The safety and efficacy of istradefylline, a selective adenosine A(2A) receptor antagonist, was evaluated in a 12-week, double-blind study in levodopatreated Parkinson disease (PD) subjects with motor complications. METHODS: Levodopa-treated PD subjects (n = 395) received istradefylline 20 mg/day (n = 163), istradefylline 60 mg/day (n = 155), or placebo (n = 77) at 40 sites. The primary efficacy variable was the change in the percentage of time per day spent in the OFF state.

Secondary measurements assessed change in ON time, Unified Parkinson’s Disease Rating Scale, and Clinical Global Impression. Safety monitoring included clinical laboratory, electrocardiograms, vital signs, physical/ neurologic examinations, and adverse events (AEs).

RESULTS: Changes from baseline to endpoint in the percentage OFF time in the active groups compared with placebo were -4.35% (95% CI -8.16 to -0.54; p = 0.026) for istradefylline 20 mg/day and -4.49% (95% CI -8.35 to -0.62; p = 0.024) for 60 mg/day; these changes were significant (analysis of covariance). For total hours, istradefylline demonstrated mean differences from placebo of -0.64 hours (95% CI -1.30 to 0.01) for 20 mg/day and -0.77 hours (95% CI -1.44 to -0.11) for 60 mg/day (p = 0.065; overall treatment effect). Clinical response occurred by the second week and was maintained throughout the study. Istradefylline was well tolerated. The common AEs were dyskinesia, nausea, dizziness, and hallucinations.

CONCLUSIONS: Istradefylline demonstrated a significant reduction in the percentage of awake time per day spent in the OFF state, which resulted in a clinically meaningful reduction in OFF time, without an increase in ON time with troublesome dyskinesia, and was well tolerated as adjunctive treatment to levodopa in Parkinson disease.

Summer 2008 Issue 31

zolpidem Zolpidem improves akinesia, dystonia and dyskinesia in advanced Parkinson’s disease Yen-Yu C et al (2008) Journal of Clinical Neuroscience; 15(8): 955–956 Zolpidem, an imidazopyridine hypnotic drug acting as a selective gamma-aminobutyric acid (GABA) type A agonist, has been reported to produce significant motor improvement in patients with Parkinson’s disease (PD).

However, relevant reports are scarce. We report a patient with advanced PD who had had a unilateral pallidotomy, unilateral thalamotomy and bilateral deep brain stimulation (DBS) of the subthalamic nuclei, who demonstrated an immediate improvement in akinesia, dystonia and dyskinesia after 10 mg zolpidem. Zolpidem may improve parkinsonian symptoms in patients with advanced PD by modifying neuronal activity within the basal gainglia and subcortico-cortical circuits. Zolpidem also reduces complex motor complications such as dystonia and dyskinesia, for up to half a day at a very low dose.

Parkinson’s News 39

PDS mental health resources Information sheets

code

Anxiety

FS96

Hallucinations

FS11

Mild Memory Problems

FS95

Compulsive Behaviour

FS77

Gambling

FS84

Hypersexuality

FS87

Dementia and Parkinson’s

FS58

Dementia with Lewy Bodies FS33 Depression

Non-motor symptom of Parkinson’s questionnaire (code B117)

The Professional’s Guide to Parkinson’s Disease (code B126)

Mental health in Parkinson’s The PDS is putting together an indepth guide on mental health and Parkinonson’s that will be available at the end of the year.

Visit www.parkinsons.org.uk/publications to download these free resources

All items aim to provide as much information as possible but, since some information involves personal judgement, their publication does not mean that the Parkinson’s Disease Society (PDS) necessarily endorses them. While due care is taken to ensure the content of Parkinson’s News is accurate, the publisher and printer cannot accept liability for errors or omissions. While every care is taken of text and photographs submitted, the PDS accepts no responsibility for any loss or damage, whatever the cause. The PDS does not endorse any products mentioned in this magazine. © Parkinson’s Disease Society of the United Kingdom (2008) Charity registered in England and Wales No. 258197 and in Scotland No. SCO37554 A company limited by guarantee. Registered No. 948776 Registered Office: 215 Vauxhall Bridge Road, London SW1V 1EJ www.parkinsons.org.uk pds helpline: 0808 800 0303 enquiries@parkinsons.org.uk

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FS56