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Research newsletter
Quality Research in Dementia
November 2012 Issue 122

Annual Research Conference | Research Network impact in designing research

Notes from the editor

Jess Smith, Research Communications Officer
together staff, Research Network volunteers and funded researchers to learn more about the research that the Society funds and how this fits into the wider dementia research picture. The second day of the conference gave Research Network volunteers a chance to help us plan our business strategy for the next financial year and find out more about the projects that are running (see pages 45 for more about the conference and its programme). The conference was a great success and provided a fantastic opportunity to meet and talk with the Research Network volunteers, each of whom has a story to tell that inspires us in the work that we do. Another highlight from the last month was the publication of a journal article by Alzheimers Society and Kings College London researchers about the use of existing drugs in the treatment of Alzheimers disease (see below for more details).

Last month, Alzheimers Society Research held our Annual Research Conference, which brings

Existing drugs could be used to treat Alzheimers disease

A journal article focusing on existing drugs that could potentially be used as treatments for Alzheimers disease was published at the end of October in Nature Reviews Drug Discovery. The researchers, from Alzheimers Society and Kings College London, had looked at evidence from previous studies on a range of different drugs that are currently used to treat other conditions, but that studies have shown may have an effect on Alzheimers disease. Six types of drug were identified as having the best evidence supporting them, with the suggestion that these should be taken through additional research and then possibly on to clinical trials. These drugs were: Angiotensin receptor blockers (used to treat high blood Page 2 pressure); calcium channel blockers (used to treat high blood pressure, and sometimes to treat angina); GLP-1 analogues (used as a type 2 diabetes treatment); tetracycline antibiotics (used as an antibiotic for a broad range of infections, including acne); retinoid therapy (used to treat skin conditions, including psoriasis). Most of these drugs are now being further developed by various companies. The study into liraglutide is being led by Dr Paul Edison at Imperial College London and is part-funded by Alzheimers Society. This promising research demonstrates the validity of the approach of taking existing drugs and repositioning them for use in Alzheimers disease.

Contents
2 2 Notes from the editor Existing drugs could be used to treat Alzheimers disease 3 Research in the press 45 Annual Research Conference: Report 6 Researchers perspectives on the Annual Research Conference 7 The Research Networks role in designing research

On the cover
Delegates at this years Annual Research Conference in Leeds during a presentation.

alzheimers.org.uk/research

Research in the press

occurring is an interesting research avenue to explore. After hearing recently that drug companies are scaling back their research into treatments for Alzheimers disease, its really encouraging to see a study that has reached the clinical trial stage and that investment is still being made. There are currently 800,000 people living with dementia in the UK. With the right investment, dementia can be defeated. A further study investigating the role of exercise by older people in reducing the risk of dementia has been conducted by researchers at the University of Lisbon in Portugal. The research used data collected in a multi-country European study and included annual full cognitive assessments of 639 people in their 60s and 70s, over a three-year period. Those who engaged in regular physical activity reduced their risk of vascular dementia by 40 per cent and of cognitive decline by 60 per cent. The physical activities included gym classes, walking and cycling. Professor Ballard commented, You dont have to be an Olympic athlete to reap the benefits of exercise. As this research shows, making sure we are fitting regular bursts of activity into our daily lives can make a real difference to the brain and the heart. Eating a balanced diet, exercising regularly and not smoking as well as getting your blood pressure and cholesterol checked regularly can make an important contribution to reducing your risk of developing dementia.

An overview of research stories that have made the national press in the last month and how Alzheimers Society commented on them.

A company called TauRx have announced that they are taking a new therapy, which will target tau tangles in the brain, into phase 3 clinical trials. This is in collaboration with researchers based at the University of Aberdeen, and is based on previous trials with a drug called Rember; the new drug is called LMTX. The trial will recruit people with mild to moderate Alzheimers disease, but it is hoped that the treatment could also have benefits for other types of dementia. The trial will recruit participants from fifteen countries, including the UK. Jess Smith, Research Communications Officer, commented, We know that tangles of tau, a protein found in the brain, are a hallmark of Alzheimers disease and cause brain cell death. Investigating drug treatments that have the potential to stop these tau tangles

Researchers at the University of Edinburgh have found that exercise in old age is better than mental stimulation for prevention of brain shrinkage and white matter damage, which can lead to dementia. The study looked at the exercise habits and other mental and social stimulation of a group of people born in 1936. They found that after three years, people who participated in more physical activity showed less brain shrinkage than those who exercised minimally. Professor Clive Ballard, Director of Research, said, Dementia is one of peoples biggest fears in later life, but there are ways for people to help reduce their risk of developing the condition. Keeping your mind stimulated can be fun, but exercise has been proven to prevent cognitive decline in many studies. This research gives people further reason to get active and work out to ward off dementia.

November 2012

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Annual Research Conference: Report

Annabel Nicholson
In October, Alzheimers Society hosted their Annual Research Conference in Leeds. Annabel Nicholson, who has been working as a volunteer alongside the Research team in our London office, shares her report of the day.

The Annual Research Conference was held at the Metropolitan Hotel in Leeds, on 45 October. The conference was attended by Research Network volunteers, Alzheimers Society researchers, members of the Research team and other staff, and members of Sunrise Senior Living. With a programme encompassing discussions, workshops and presentations, it was set to be an interesting and exciting two days. Bob and Sylvia Khan, two Research Network volunteers, kicked off the conference with a dialogue about their lives. This insightful and entertaining introduction really captured the partnership in a way that the term carer doesnt, and got the conference off to a successful start. Professor Clive Ballard, Director of Research, followed with a positive round up of the year, drawing focus on exciting developments in terms of grants and partnerships. He finished with a look forward to the coming year, which will see projects such as the FITS (Focused Intervention and Training for Staff) project and CBT (Cognitive Behavioural Therapy) research beginning, as well as increased funding. Energised and intrigued, the audience settled down to a day of interesting and informative presentations. The programme included a diverse range of presentations, beginning

with Professor Christian Hlscher from the University of Ulster. His work demonstrates the connection between Alzheimers disease and type 2 diabetes, suggesting that we can use diabetes research to make progress in the quest to find a successful treatment for Alzheimers disease. This was followed by Professor Rob Howard, from Kings College London, who gave an interesting perspective on the DOMINO-AD trial, a trial hoping to establish the most effective drug option for people with Alzheimers disease who are progressing to the moderate to severe stages of the disease. In the afternoon, plenary sessions were interspersed with smaller workshops. These intimate sessions created a great atmosphere in which delegates could freely discuss and consider the topic of the workshop, which ranged from how to communicate research to a non-scientific audience, to information on studies funded by the National Institute of Health Research. The workshops were a huge success and not only helped those participating to gain a further understanding of current research but also gave those running the workshop a chance to get feedback on their projects. The afternoon sessions gave PhD students the chance to present their research. The enthusiasm

and commitment of the students was evident, and this was refreshing to watch. Seeing that there are young people devoting time to dementia research is not only reassuring for people affected by dementia, but it is interesting to see what areas they are focusing on and hear about their findings. By bringing together researchers and volunteers, both parties were able to share their experiences and help to put the research into context. The evening poster session further enabled this in a friendly, informal atmosphere, giving young scientists the chance to talk through their work with each other and with Research Network volunteers. This was an extremely successful and lively part of the conference, giving the scientists the chance to show off their work and see the impact their research will have. The last two plenary sessions included a very thought-provoking presentation regarding Brains for Dementia Research, by Professor Paul Francis from Kings College London. He highlighted the need for people in older age groups to consider donation and carefully explained the importance such an act can have on the development of an understanding of different types of dementia. Finally, there were three presentations about vascular dementia, which delivered a very thorough insight into the advances and

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perspectives of scientific and clinical aspects of vascular dementia. The two days were a huge success, with the conference giving participants the chance to learn about new developments in dementia research as well as to share experiences and meet with the scientists whose work they have played an instrumental role in funding. The conference really demonstrated everyones commitment to dementia research, from supporting the development of young scientists to providing the opportunity for leading scientists in other fields to concentrate their expertise on dementia. The five-year research strategy that Alzheimers Society launched this year is ambitious and events like the Annual Research Conference, where the support and enthusiasm of the volunteers and hard work of the scientists is showcased, will no doubt be of great importance to its outcome. With the increase in funding, we can look forward to an even more exciting conference next year.

Delegates hear a talk by Dr Christian Hlscher about a type 2 diabetes drug that could be a good treatment for Alzheimers disease.

Delegates listen to a panel discussion about vascular dementia.

Professor Robert Howard spoke about the results of the DOMINO-AD trial, in a talk entitled Why NICE were wrong about dementia drugs.

Our Digital Research Officer, Dbora Miranda, hosts a workshop about our Cognitive behavioural Therapy trial.

November 2012

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Researchers perspectives on the Annual Research Conference

The Annual Research Conference provides an opportunity for our early career researchers to meet members of our Research Network and hear about their experiences, and explain and discuss their research with the Research Network and each other. This years conference showcased some of our PhD researchers through presentations in the afternoon session, and included an evening poster presentation for a more informal discussion of our researchers work. Here, three of our early-career researchers, all at different stages in their projects, share their experiences of the conference.

David Whitfield, PhD student, Kings College London

David is nearing the end of his PhD project in Professor Paul Francis laboratory The highlight of this conference is speaking to the network volunteers during the poster session and hearing their personal stories and reasons for their involvement with the charity, putting my research in context. In addition to this, I was very lucky to have been asked to give a short talk on my project, allowing me to develop my skills as a speaker, something I feel I can really benefit from; and the audience, although mostly lay people, are not afraid of asking searching questions!

Dr Mario Parra, Research Fellow, University of Edinburgh

Mario has recently started his fellowship project The conference made me feel like a new member of a big family. All happened in a very amicable context. I openly spoke to lay members, scientists and staff about my new fellowship programme funded by the Society. I delivered the message I brought and gathered very useful comments. I returned home pleased and confident that our Network will have a very positive impact on the outcomes of my research project.

Michael Craig, PhD student, University of Edinburgh

Michael has just started the second year of his three-year PhD project in Professor Sergio Della Salas research team The conference provided an excellent insight in to the great work that Alzheimers Society is engaged in. It also provided an opportunity to showcase recent research and gain valuable and much appreciated feedback from fellow researchers and Research Network volunteers. Whilst a large array of research is being undertaken, it was fantastic to acknowledge that we are all ultimately striving for the same goals.

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The Research Networks role in designing research

The Research Network is extremely important in Alzheimers Societys research process, setting our priorities, deciding which projects to fund and monitoring them throughout their duration. Research Network volunteers often get involved in research at an earlier stage, participating in focus groups or helping scientists to design appropriate studies and recruitment plans. Here we look at a project that Research Network volunteers Shirley Nurock and Barbara Woodward-Carlton helped to design by sharing their perspective and experiences with Ian Maidment, Senior Lecturer in Clinical Pharmacy as Aston University.

Medication management was identified by Barbara WoodwardCarlton and Shirley Nurock as being an important and neglected topic, and much broader than solely antipsychotics. To help us understand some of the key issues, a focus group involving carers and former carers, clinicians, academics and members of Alzheimers Society staff was held at the Societys central office in 2011. One of the recommendations of the focus group was to survey members of the Network so that we could start to understand some of the issues. A short survey, designed with help from members of the Research Network, was sent out to all Network members between March and May 2012. The survey asked about medication and problems related to medication that members had experienced. From the focus group and discussion with carers, problems were categorised as issues related to: side-effects, packaging, whether to administer the medication, a lack of information, adherence and other. There was a free text area for carers to write their responses to the categories. Carers were also asked to highlight ways that might have made it easier for

them to manage the medication of the person with dementia. Twenty completed surveys were received. Carers often took on responsibility for medication management and had to make complex judgements about whether the medication was needed. Medication management could be very challenging. Carers identified numerous practical issues such as the use of clic-locks and blister packs and particularly struggled if the person with dementia was taking lots of different medicines. However, there was limited support and because carers received little information they often could not tell whether or not a particular medicine was causing a sideeffect. Pharmacists could provide further support here, but more research is required. One carer

expressed this difficulty in their response to the survey saying: Looking back as I try to consider the very real issue of medication, each day was a challenge and my memories of what we did and how we coped is very difficult to describe except that I know there was no support and advice. This project showed that medication management is a significant burden for carers and can worsen quality of life. However, we need much more research in this area to understand the carer perspective.

Looking back as I try to consider the very real issue of medication, each day was a challenge and my memories of what we did and how we coped is very difficult to describe except that I know there was no support and advice. - Experience of a Research Network volunteer

November 2012

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The Research Network

People with dementia and their carers are integral to our grants programme. We believe that they make a unique and valuable contribution to our work. Their knowledge and passion ensures our research funding is allocated to projects that address the real needs and concerns of people with dementia and their carers. Research Network volunteers: set our research priorities prioritise and comment on grant applications sit on grant selection panels monitor ongoing projects funded by Alzheimers Society tell others about the results of research.

Research team contacts

Research Network Volunteer Coordinator (first point of contact for the Research Network and Friends of Research) Matt Murray T 020 7423 3603 E matt.murray@alzheimers.org.uk Director of Research Professor Clive Ballard Interim Director of Research Management Steve Dewar E steve.dewar@alzheimers.org.uk Research Communications Officer Jess Smith T 020 7423 5143 E jessica.smith@alzheimers.org.uk Website alzheimers.org.uk/research Email research@alzheimers.org.uk Fundraising enquiries Customer Care T 0845 306 0898 E customercare@alzheimers.org.uk

If you have been a carer for someone with dementia or you have dementia and are interested in joining the Research Network, please contact Matt Murray, the Research Network Volunteer Coordinator and request an application form, or go online at alzheimers.org.uk/researchnetwork If you are not a carer or a person with dementia, but you would like to learn more about our research and keep up to date, you are welcome to become a Friend of Research. Just fill in the form on the website (above) and youll receive a monthly copy of the Research newsletter and information on all our research events.
Sunrise Senior Living is generously sponsoring the Research Network. Alzheimers Society maintains editorial independence over this content. For more information please visit www.sunrise-care.co.uk

General enquiries: info@alzheimers.org.uk Alzheimers Society website: alzheimers.org.uk Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499. Alzheimers Society operates in England, Wales and Northern Ireland