Prof John Hodges World leader in Dementia Research joins POWMRI

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1 The Official Newsletter of the Prince of Wales Medical Research Institute Issue Number 31 December 2007 Prof John Hodges World leader in Dementia Research joins POWMRI

2 Message from the Executive Director Peter Schofield In this issue of Brainworks, I am delighted that we can showcase our latest efforts in the critically important area of dementia research. Dementia is a process that, unfortunately, we can all see. It results in the loss of cognitive abilities in a loved one or relative. The causes of dementia are manifold, and lead to the specific types of dementia such as Alzheimer s disease, frontotemporal dementia, dementia with Lewy bodies, etc. In each of these dementing illnesses, the Institute has made substantial inroads into understanding the causes and identifying potential mechanisms for treatment. The arrival of Prof John Hodges from Cambridge University in England is a real coup for Australian dementia research. He has been awarded a highly prestigious Federation Fellowship by the Federal government and has also received a Life Sciences Award from the State government to help establish his research team and projects. John is one of the world s leading neurologists and specialises in clinical research on frontotemporal dementia. His clinical skills will complement our laboratory expertise and build on collaborations established in 2002 when John spent a sabbatical in Sydney. Dr John Kwok, a group leader at the Institute, studies the genetics of dementia. John was awarded two new project grants in the current round of NHMRC grant funding. One of John s projects will examine the role of genes that regulate the processes by which Alzheimer s disease occurs, while the other seeks to identify and characterise a new gene that causes a form of frontotemporal dementia associated with motor neuron disease. And Prof Tony Broe has been awarded a very timely project grant to examine the prevalence of dementia in our indigenous communities, both city and rural. This project has been several years in development, and critical to its success has been an engagement with the indigenous communities, who will be active participants in the research projects. The outcomes of this work will serve to inform both health care policy and practice in the nation. Today, over 1,000 Australians are diagnosed with dementia each week and, in total, there are estimated to be over 200,000 people who have dementia. And as a society we are ageing. So our research into the causes, treatments and prevention of dementia is just one way in which the Institute can help reduce the burden of dementia. Diary date for 2008 Professor Peter R Schofield PhD DSc Executive Director and Chief Executive Officer Please Note If you do not wish to receive further copies of BRAINWORKS, please call to have your details removed from our data base.

3 Cover Story WORLD LEADER IN DEMENTIA RESEARCH JOINS POWMRI Leader Crucial to the future success of Australia s dementia research program is the recruitment of international leaders in the field leaders such as eminent Clinical Neuroscientist, Prof John Hodges. Prof Hodges has taken up the new position of UNSW Professor of Cognitive Neurology and Federation Fellow, and is now based at the Institute. For the past 10 years Prof Hodges, a Fellow of the Royal College of Physicians and Fellow of the Academy of Medical Sciences, was the MRC Professor of Behavioural Neurology with joint appointments in the Department of Clinical Neuroscience at Addenbrooke s Hospital and the MRC Cognition and Brain Sciences Unit, Cambridge, where he led a multidisciplinary research group. I m very excited about the prospect of establishing a new research team at the Institute, said Prof Hodges. My general aim will be to continue the broad themes which I have pursued in Cambridge but to take advantage of the expertise at POWMRI. One overarching goal is to develop work on frontotemporal dementia (FTD) which spans the spectrum from the very practical to basic neuroscience. FTD, also referred to as Pick s disease, was once considered to be a rare disorder but is now recognised to be the second most common cause of dementia in patients under 65, he said. To achieve this goal, Prof Hodges plans to develop a multidisciplinary team at the Institute comprising clinical psychologists, occupational and speech therapists working in conjunction with professionals allied to medicine across the city. I also plan to continue developing practical but robust tools for the assessment of patients, particularly those with a breakdown in social cognitive functioning. Prof Hodges looks forward to a long-term relationship with Australia. Prof Hodges remarked that the recent developments in neuroimaging at POWMRI will be vital in his continued quest. Also, access to post-mortem brain tissue from well documented cases with FTD is essential to understanding the nature of the disease. We are well placed to make a substantial contribution to this field given the strength in neuropathological research at POWMRI, he continued, and the world renowned Brain Bank resource coordinated by Prof Glenda Halliday, with whom I have a longstanding and very productive collaboration. I m sure this will go from strength to strength fostered by the investments in neurodegenerative disorders at POWMRI. He concluded that the genetics group, led by Prof Peter Schofield, offers the opportunity to combine clinical, imaging, genetic and neuropathological studies in a unique and vibrant environment unrivalled elsewhere in the world. A passionate family man with a healthy sense of humour, he couldn t help but quip, All this... and only 2kms from beautiful beaches with which I look forward to consummating a longterm relationship. If you would like to receive BrainWorks as an e-newsletter, please forward your address to brainworks@powmri.edu.au

4 News SCHIZOPHRENIA RESEARCH BANK With the support of the National Health and Medical Research Council and the Pratt Foundation, the Schizophrenia Research Institute (SRI) is creating the Australian Schizophrenia Research Bank. Memory problems and falls can you help solve the puzzle? The Falls and Balance Group at the Institute is seeking older people and carers to participate in a study looking at falls in people with cognitive impairment (problems with brain function including memory loss). This project is based on a nationwide collaboration of scientists. The Sydney arm of the Bank is coordinated by POWMRI s Dr Tom Weickert and SRI s Clinical Assessment Officer, Yen Lim. The goal of the Bank is to deposit brain related data to allow scientists to unlock the secrets of this devastating disease. It is envisaged the project will play a crucial role in the international search for a cure for schizophrenia. The Research Bank will initially hold the brainrelated data from 2,000 Australian volunteers with schizophrenia and 2,000 healthy controls. These 4,000 participants will provide their medical and family histories, genetic profiles and some will provide an MRI brain scan. New Ministerial Appointment Assoc Prof Lynne Bilston has been appointed to the Products Safety Committee by the NSW Fair Trading Minister, Linda Burney. The committee provides the Minister with high level advice on issues related to product safety. ASRB Clinical Assessment Officer, Yen Lim, interviews a patient The new research bank will allow scientists to analyse vital genetic and brain information from schizophrenia sufferers on a scale never before possible. This will be the largest schizophrenia research facility of its type in the world and the volunteers who take part will be contributing to a research resource which scientists hope will provide a unique breakthrough. If you would like to take part in this important project, please call the toll-free number Assoc Prof Bilston, a Principal Research Fellow at the Institute, investigates injury to adults and children in motor vehicle crashes and works to design, evaluate and modify vehicle restraint systems to prevent these injuries, as well as determining safe and unsafe levels of loading for the human body. Assoc Prof Bilston s Child Injury Research tests existing capsules, restraints and booster seats using crash-test dummies of varying weights and sizes in an effort to modify and improve vehicle restraints. Falls and fractures are more common in people with cognitive impairment and dementia, with rates that are double that of cognitively well older people. Cognitive impairment is not only associated with an increased risk of falling but also carries a higher risk of hip fracture. A hip fracture is a devastating injury for an older person and is associated with risk of death, reduced ability to function independently and an increased need for nursing home care. As little is understood about the relationship between falls and cognitive impairment or dementia, researchers and clinicians are undertaking a new study, the aim of which is to devise interventions that can stop older people with cognitive impairment and dementia from falling and sustaining a fracture. Participants over 65 will undergo a series of assessments, the majority of which can be undertaken in their own home. For further information about eligibility, please contact Jodie Rattey or Morag Taylor at the Institute on Assoc Prof Bilston This appointment will allow me to provide evidence-based input to ensure potentially dangerous products are appropriately regulated and controlled, said Assoc Prof Bilston. This is especially important in the case of products for children, where quick responses to potential problems can make the difference between life and death. Project coordinators Jodie Rattey and Morag Taylor demonstrate a risk taking test used to assess cognitive response

5 Highlights The burden of dementia for indigenous australians The lack of knowledge reflected in recent and unexpected finding of high rates of dementia in Aboriginal people has been the motivation behind a new project implemented by Senior Principal Research Fellow and clinician, Prof Tony Broe (pictured). meaning of dementia for Aboriginal people themselves, and how people with dementia are cared for in the communities. To examine these questions, said Prof Broe, we will form partnerships and collaborations with selected Aboriginal communities in NSW and with Aboriginal community organisations, service providers and Aboriginal research teams. In a recent study of the remote Kimberley Aboriginal community, by Prof Leon Flicker and his team from UWA, Aboriginal people aged 45 years and older were found to have around four times the non-indigenous rate of dementia. We know a lot about Aboriginal health in general and about early onset, high rates and early mortality from chronic diseases in Aboriginal people, said Prof Broe. However, based on the recent finding from the Kimberley, there is now a pressing need to examine the burden of dementia in communities representing the majority of Aboriginal people who live in non-remote or urban settings. The project will investigate critical areas such as what types of dementia occur amongst Aboriginal people, how cognitive impairment, leading to dementia, is best measured in Aboriginal communities, what is the As well as finding the answers to questions about cognition and dementia, the project aims to examine normal or healthy ageing in Aboriginal people; and will build capacity in the local Aboriginal communities, in dementia recognition, care, and prevention of risk factors for dementia, by employing and training Aboriginal workers as research assistants. Demographic, risk factor, service use and carer burden data will be collected from participants throughout NSW and Aboriginal research assistants will also obtain dementia stories and narratives. Prof Broe indicated that future plans included an extensive study of ageing and cognition in urban Aboriginal people. We will continue to progress an agenda towards a national study of health and ageing in indigenous people, he concluded. Family history of bipolar affects willingness to have children A new study undertaken by Assoc Prof Bettina Meiser, Prof Phil Mitchell and Prof Peter Schofield has found that a negative attitude to childbearing is significantly more pronounced in people with bipolar disorder than with other hereditary diseases such as Huntington s disease or hereditary cancer even when the genetic risks are lower. Their new research has found that one in three people with a family history of bipolar disorder (manic depression) is reluctant to have children due to the hereditary nature of the illness and its perceived social stigma. The researchers surveyed 200 people with a strong family history of bipolar disorder, including 105 with the illness, and found that more than a third (35%) was either unwilling or less willing to have children. That number rose to 50% among those diagnosed with the condition. From studies into childbearing among people at high risk of cancer, or other genetic disorders where the lifetime risk for a gene mutation carrier can be 80% or more, this does not deter many people from having children. What makes bipolar disorder unique is the stigma leading to the perception among sufferers that they may be unsuitable marriage partners and parents. Prof Peter Schofield As a molecular geneticist, I am acutely aware of the importance of translating our genetic research and developing means of providing families with meaningful and relevant genetic risk information, said Prof Schofield. But this study indicates that we first need to better educate society as a whole about genetic risk in relation to mental disorders. People with a history of bipolar disorder in their family suffer from an associative stigma and that results from a societal opinion relating to their suitability as parents. The effects of stigma are highly detrimental and cause unnecessary and psychological distress. Better education is the only answer.

6 Thank You ClubsNSW Generosity Dr Brett Garner s research into Alzheimer s disease has been given a boost with a donation of $2,500 from ClubsNSW Eastern Zone Bear Cottage and Other Charities. Over the past two years, this generous organisation has donated a total of $12,000 to a variety of projects at the Institute, raising funds through Bowls Days, Trot Nights, Golf Days and Twilight Race Meetings. Under the inaugural Chairmanship of John O Toole OAM, said Ray Winter, the organisation s Secretary and Treasurer, a Committee was formed from NSW Registered Clubs Officials in the NSW Eastern Metropolitan region, to raise money to support running costs of the children s hospice. After reaching the $1 million mark, the Committee, under the Chairmanship of the late Kevin Scott, decided to donate money to charities, including medical research institutes, within their local region as well as continuing to support the original project. The Institute sincerely thanks members of the Committee for their continued generosity and dedication to making a difference to the lives of so many. Dr Brett Garner and Ray Winter Bridge challenge Sincere thanks to bridge players throughout Australia who supported the 2007 Bridge for Brain Research Challenge. Participation from 86 clubs and over 2,500 players raised over $22,000 for research into Alzheimer s disease and other dementias a fantastic result! Special thanks to Martin Willcox and Jane Rasmussen from the ABF who donated time and energy to provide the Bridge Challenge results. Congratulations to the 2007 winners and, to all the fundraisers, our heartfelt thanks. Results can be found on our website Planning is now underway for the 2008 Challenge which will be held from 1st to 7th May. We look forward to your participation in 2008 and welcome any feedback or suggestions that you may have. Please contact Angela Fury on or a.fury@powmri.edu.au. Donation Form The work of the Prince of Wales Medical Research Institute is greatly assisted by your generous support Please accept my donation of $ I wish to pledge $ per year for years Title First name/s Surname Company Address State Postcode Donations of $2 00 or more are tax deductible Please send me an Annual Report Please send me information on how I can make a bequest I would like to make regular donations through my Credit Card Amount to be debited automatically: $ Please complete the Credit Card details at right Frequency Monthly Quarterly Other Commencement date Phone Method of payment Cheque or money order (payable to Prince of Wales Medical Research Institute) Credit card MasterCard Visa Bankcard Amex Card Number Expiry date Cardholder s name Signature Date Please mail to: POWMRI, PO Box 82 St Pauls NSW 2031 or donate online at or phone ; fax Thank you for your donation This newsletter is proudly supported by GRAPHIC SURGERY and FOCUS PRESS