The Research Institute for the Care of Older People The RICE Centre, Royal United Hospital, Bath, BA1 3NG.

Tel: 01225 476420 Email: info@rice.org.uk Website: www.rice.org.uk The Institute is a Registered Charity No. 1042559.

Company limited by guarantee, registered in England No. 2979617. Registered Office as above.

RICE would also like to thank the following for their recent support: Farmborough Women’s Institute, Smith Charitable Trust, Essex Trust, Murphy-Neumann Charity Company Ltd, Thomas Sivewright Catto Charitable Trust, CE & MM Campin Trust, Rotork Controls Ltd, Discworld Foundation and everyone who has made a donation.

A Big Thank you to….. Buffaloes visit the RICE Centre……

It’s not every day that we have a group of 10 Buffaloes at

the RICE Centre but on Monday 22nd February Eddie

Newman and fellow ‘Buffs’ from the Royal Antedeluvian

Order of Buffaloes, Frome & Warminster visited the RICE

Centre to present Professor Jones with a cheque for an

amazing £4073.79!!

Line Dancers take to the floor for RICE

There was plenty of fancy footwork on show at the ‘Step EadeZ’ event which took place at the Bath

Community Academy on Saturday 5th

March. Organisers Sharon and Mandy

sold over 100 tickets to their 11 hour

marathon line dance and raised £454.20

which was split equally between RICE and

Dorothy House—causes close to their

hearts. Thanks to everyone who took

part and gave so generously.

Get the latest RICE news; details of recent research publications together with up to date news can be

found on our website www.rice.org.uk or Twitter and Facebook

RICE—The Research Institute for the Care of Older People Follow RICE on Twitter: @RICE_Bath

RICE Volunteers, we couldn’t do it without them…….

It was lovely to catch up and share ideas with some of our amazing

volunteers who visited the RICE Centre in March ; if would like to find

out more and/or join our friendly group please contact Jackie. We’re

particularly keen to hear from anyone who can help us during

Dementia Awareness Week, ideally between 16th –18th May.

Newsletter

Inside:

Research updates

Staff In Focus

Fundraising news

Thank you

Turning disappointment into success? Spring 2016 No 41

Improving the lives of people with

dementia through research, diagnosis,

treatment and support

The last drug licensed for the treatment of Alzheimer’s disease in the UK was in 2002 and since then the search to find new and better treatments has been extremely disappointing. There are many reasons why a drug is unsuccessful. The two most common reasons are that the drug does not appear to be sufficiently effective or that there are concerns about potential side effects.

We have known since the 1990s that a protein called amyloid is deposited in the brains of people with Alzheimer’s disease. For good scientific reasons, removing this amyloid protein or reducing its formation might lead to a more effective treatment. Unfortunately, so far this approach has not led to a successful new drug although several have been identified that appear to have limited benefits.

We know that amyloid protein builds up in the brain in Alzheimer’s disease 10-20 years before the person actually develops dementia. An increasing concern has been that by the time the person gets dementia there may be too much amyloid in the brain for these new treatments to work. Because of this, our research is trying to identify people much earlier in the course of the disease. We know that some people with relatively mild memory problems (‘mild cognitive impairment’) do have deposits of amyloid protein in their brain and are likely to go on to develop Alzheimer’s dementia. One research approach is to try to identify these people (sometimes called people with prodromal Alzheimer’s disease) and to see whether treatments directed against the amyloid protein are effective in this group.

Further research is beginning to identify people without significant memory problems but who are slightly more at risk of developing Alzheimer’s dementia in the future. These people have two copies of a gene called APOE4. Studies are now beginning to try and identify these people and, if they are prepared to try a potential treatment, to see whether this can delay or prevent future development of dementia due to Alzheimer’s disease compared to people not receiving a treatment. RICE is likely to start one of these studies later this year. They are complex studies and one of the biggest difficulties is to identify relatively healthy people who are nevertheless at increased risk of Alzheimer’s disease. To do this, we will need to take a sample for a genetic test and select the group who are most at risk of Alzheimer’s disease for the clinical trial with the new treatments.

Later this year, the RUH where RICE is based, will have its own PET scanner which can carry out a particular type of brain scan that can see amyloid deposits in the brain, even in people who are relatively healthy. We believe that this group of people are at a greatly increased risk of Alzheimer’s disease in the future and it is this group that will be suitable for these new clinical research studies.

By identifying people at risk at an earlier stage, we may be able to offer treatments to delay or prevent dementia developing. Of course, we will also continue to search for effective drugs that help people who have developed Alzheimer’s and other types of dementia.

STOP PRESS…...STOP PRESS…...STOP PRESS…...STOP PRESS We are delighted that staff at Marks & Spencer Bath have selected RICE as their charity partner for 2016-17. More details of fundraising activities will be posted on our website www.rice.org.uk

Brain tissue showing amyloid plaques

stained brown. Courtesy Bogdanovic &

Winblad,

Research News - drug trials If you (or someone you care for) have been diagnosed with Alzheimer’s disease and are interested in research then this is the ideal time to take action! With three new clinical trials due to start at RICE over the next two months and a fourth already open and recruiting, there are plenty of opportunities available for you to come along and take part.

You may already be familiar with the RICE building and its friendly staff and if you enrol onto a research study it just means that you and the person who cares for you get to visit us more often! Also, there will be more activity than with a usual clinic visit, which you would hopefully find interesting and enjoyable.

So what studies are currently available? The Boehringer 1289.7 study, which began at RICE in December, is a 12-week treatment study comparing a new drug compound with a placebo (an inactive substance) for people with cognitive impairment due to Alzheimer’s disease. If you are between the ages of 55 and 85 years, this may be of interest to you and we would be happy to hear from you.

In April/May we are due to begin recruiting for three more studies. The Biogen ENGAGE study will be looking for patients between 50 and 85 years with either a diagnosis of Mild Cognitive Impairment due to Alzheimer’s disease or mild Alzheimer’s disease. The Axovant MINDSET study will also be looking for patients between 50 and 85 years but with a diagnosis of mild to moderate Alzheimer’s disease and on a stable dose of the drug Donepezil. The Boehringer 1289.5 study will be looking to recruit patients between 55 and 85 years with early symptoms of Alzheimer’s disease (known as ‘prodromal Alzheimer’s disease’) but who are not taking prescribed medication for the condition.

If you are interested in taking part, we need to check whether you are suitable which includes checking your medical history or any medication you are taking. If all goes well, we would then invite you in for a ‘screening visit’ where you would have further tests to check your eligibility.

However, if things don’t work out for one study, it doesn’t mean you won’t be ideal for another! We can always keep you on our research list and let you know as soon as new opportunities arise .

For further information about our studies, please contact Vanessa Bishop, RICE Clinical Research & Quality Administrator on 01225 476420.

People with dementia can have difficulties in performing everyday tasks such as cooking, shopping and using electrical appliances. It has been recognised that supporting people with dementia to complete these everyday tasks can help maintain independence and well-being.

This study, which is being carried out in collaboration with Designability aims to explore and develop technology that will help support people with dementia to complete everyday activities. For most everyday tasks, it is necessary to break them down into a series of simple steps or prompts. We hope to determine whether a tablet computer can be used to display visual and verbal prompts to aid with the completion of certain everyday tasks.

In order for the technology to be effective and relevant we need to understand the challenges faced by people with dementia when they use the software. We need help from people with dementia and their carers to help us modify and adapt the software so that it meets the needs of people with memory problems.

For more information, please contact Aron Jarvis, RICE Research Psychologist on 01225 476420

Research News - electronic prompting tool

Fundraising Office. Tel: 01225 476420. Email: fundraising@rice.org.uk

A Big Thankyou to….

Congratulation and thanks to our fantastic team of runners who completed the Bath Half Marathon on

Sunday 13th March raising over £3,500 in the process!

Many thanks to Susan Davies who very kindly donated her

car to help raise funds for RICE.

If you would like more information about the ‘Give a Car’

scheme please contact Jackie or Jane in the fundraising team.

Fans of the late Sir Terry Pratchett continue to support RICE through their fundraising. The Royal Oak in

Tunbridge Wells raised £1,000 through a ‘Game of Thrones’ themed evening and Dibblers’ Charity

Ventures raised £952.90 by selling their unique calendars.

Many, many thanks to Steve, Angela and everyone at Steve Vick International who

donated £4,100 towards the ‘Post diagnostic support groups’ (LivDem) that start at

the RICE Centre this Summer.

Steve Vick are great friends of RICE having previously funded Carers’ courses and we

are all extremely grateful for their continued support.

A Big Thank you to…..

Fundraising News

A taste of Glastonbury Festival…...

Join us on Saturday 25th June for a unique opportunity to walk through beautiful countryside in the

village of Pylle, relax and refresh with a scrummy afternoon tea and get a birds eye view of the

Glastonbury Festival in full swing.

The walk is mainly across fields and includes some slopes, it is around 3 miles in total and starts from Writh Farm in Pylle at 3pm - afternoon tea will be served overlooking the festival between 4 and 5pm and everyone will return to their cars by 6pm.

There are only 50 tickets available at a cost of £25 per

ticket , including a delicious afternoon tea.

Tickets are available from the fundraising office - please

call or email Jane or Jackie.

New Care Home fundraises for RICE

On 21st May 2016, Wiltshire Heights Care Home will be hosting an Auction of Promises event, In support

of RICE at their home in Cottle Avenue, Bradford on Avon . The event , which starts at 7pm will be an

evening of food, drink, entertainment and the

‘auction of promises’. Auction items will

include a lap top and set of golf clubs and

guests will also have the opportunity to bid

for a spectacular three course meal for up to 6

people, designed, prepared and served in

your own home by Wiltshire Heights’ very own Fine Dining Chef. There will also be a raffle with some

other lovely prizes.

Tickets which cost £15 go on sale from Monday 4th April 2016 at Wiltshire Heights Care Home and are

expected to sell out quickly. For more information, call Sarah Jacka on 01225 435584.

RICE Spring/Summer 2016 Grand Raffle

Raffle tickets are available in books of 5 costing £5 (£1 per ticket) and can be obtained in person from the RICE Centre, by calling/emailing Jackie in the fundraising team or by completing the slip enclosed with your Newsletter. The draw will take place on 25th July so don’t miss out— prizes include;

Dyson V6 Absolute Cordless Vacuum Cleaner

Meal for 2 (including wine) at MACDONALD Bath Spa Hotel

Round of golf for 4 people at Bath Golf Club

Call 01225 476435 or email fundraising@rice.org.uk

For a full list of prizes, all generously donated by local businesses, visit www.rice.org.uk

Research Update GREAT Study

(Goal-oriented cognitive rehabilitation in early-stage Alzheimer’s disease)

GREAT focuses on how the person with memory difficulties can improve their performance in particular activities or aspects of life through setting targets and goals. Each goal is personalised to the individual depending on their needs, meaning they can range from employing methods to help remembering peoples’ names to learning to cope alone for certain amounts of time.

GREAT began at the RICE Centre in April 2013 and finished recruiting at the end of March. During this time 86 people were recruited to enter the study and we met our target which is encouraging for such an involved and intensive programme of therapy and research spanning a 9 month period. Therapy and researcher visits will continue throughout the year with the final visits expected to take place in December 2016.

The GREAT project has been taking place across the country in eight sites. National recruitment targets have also been achieved so at the end of 2016 the lead study team based at Exeter University and the study steering group which includes RICE Director Roy Jones will analyse the results and present and publish their findings. Early indications are that this form of therapy is beneficial for people with memory problems so the study team are considering the option of offering training to memory clinics wishing to deliver this treatment to their patients. They will also consider the development of a self-management guide for people attending memory clinics that they can use at home.

The IDEAL Study

The IDEAL study was set up in 2014 to examine the effect of lifestyle factors on how people live with, and adapt to, dementia. Factors reviewed as part of the study could include: access to community services and amenities, contact with family and friends and hobbies or regular exercise. It aims to identify changes that could result in improved well-being, life satisfaction and quality of life for people with dementia and their carers.

The target Is to recruit 1500 people with dementia (and 1000 carers) at research centres across the UK by August and the study is on track to achieve this; RICE has recruited 58 couples so far against a target of 80, which was increased as the RICE team were recruiting so successfully.

Participants are involved in the study for a 2 year period so it will be some time before we get results. However we’ve already had some positive feedback; the scope of the project has allowed us to involve people who have not been eligible to take part in other studies and those involved have commented that the opportunity to be able to voice their opinions on a diverse range of topics related to the dementia journey has been very rewarding.

Post Diagnostic Support Groups (LivDem)

In the previous Newsletter we talked about the importance of providing support for people who have recently been diagnosed with dementia and we are delighted to have secured sufficient funding to allow us to deliver the first of a series of three 10-week support groups which will start in June 2016.

As well as providing front-line support for individuals with dementia and their families the knowledge that we gain will enable us to develop a larger-scale, multi-centre, research study to explore the effectiveness of post-diagnostic support groups in a range of memory clinics across the Southwest.

If you have been diagnosed with mild/moderate Alzheimer’s disease, vascular dementia or mixed

dementia within the last 12 months and are interested in participating please contact Aron Jarvis .

Staff ‘in focus’ In this issue we focus on Vanessa Bishop who is Clinical Research and Quality Administrator at RICE.

What does your role involve? It’s really a job of two halves! The Clinical Research bit is all about setting up the clinical trials we run here at RICE. I manage all the important planning, admin-y stuff such as liaising with the drug companies, completing all the relevant documents, getting the contracts signed off on time and supporting the research team with training, paperwork and patient recruitment. The Quality side is where I wear my ‘audit’ hat as I help manage the RICE audit programme with an emphasis on quality improvement, and I’m also responsible for making sure everyone is up to speed on issues such as confidentiality. How does RICE decide which drugs trials to participate in?

RICE’s excellent reputation means that we get to hear about new, forthcoming trials nearly every week, with drug companies keen to get us involved. We make our choices based on several factors including whether or not we already have similar studies serving a particular group of patients, how beneficial and interesting the study sounds and the nature of the particular treatment. How do you select participants for drugs trials?

We keep a list of patients who are interested in taking part in research and when a suitable study comes up, we contact them about it to see if they would like to take part. Every study has its own set of eligibility criteria – specific age range, how they score on certain tests, whether they are taking certain medication, and so on - and if the patient matches these, and passes the screening process, then they can enter into the study.

What happens during a drugs trial?

Each trial is different but all generally require participants to visit the RICE Centre regularly for assessments which include cognitive testing, medical examinations and blood tests. Studies vary in length from six months to several years. Once the patient has completed the trial, sometimes there is an option for them to continue further in an ‘extension study’ – or they can choose to end their involvement there. After a certain amount of time, which varies from study to study, they are then free to take part in other clinical trials if they so wish.

What gives you the most satisfaction from your job?

My job is full of variety and never the same from one day to the next, which is part of what makes it enjoyable! It’s great to be working with so many different kinds of people; through my involvement with study recruitment I’m able to work directly with some patients and their families too and that is particularly rewarding. I love a challenge and there are plenty of those when you’re trying to get

everything to come together so that a trial can start on time! How do you unwind outside work? I enjoy cooking, reading, long doggy walks and the theatre but my main passion is amateur dramatics. I’m a member of The Argyle Players, based at The Tovey Hall Theatre in Bath, where we put on three shows a year, our next being the Ray Cooney farce ‘Out of Order’ in May. I’m also in another group, formed with friends, called The 625 Company. We’ve performed in, directed and produced a number of shows including ‘Look Out!’, a fond tribute to classic TV of the 70s and 80s, and will be appearing at The Alma Theatre Bristol in October in a version of ‘The Hound of the Baskervilles’ where four Dr Watsons play all the roles!!

Living with…... The first in a series of interviews with RICE patients.

Mary is 68.

She can’t always remember the name of everyday items.

She can drive, keep up a lively social life and enjoy time with her family.

She is living with Semantic Dementia.

Mary met her husband, Roger, when they were at school in Bristol and after 47 years of married life they now live in Midsomer Norton, the parents of two children who have produced four grandchildren. She ran a Brownie Pack for 35 years and is still involved with a group of retired Brown Owls and Guide Leaders. She also worked as an auxiliary at Paulton Maternity Unit and occasionally found herself assisting in the labour of women who had previously passed through her hands as Brownies.

Mary first started to notice a change in her memory at work, when a midwife asked her to pass a named instrument which she struggled to identity, though she did understand, when prompted, what the instrument did. Mary’s GP referred her to the RICE Centre where tests and appraisals were carried out before an MRI scan showed areas of shrinkage in the left side of her brain, the area responsible for language, and a diagnosis of Semantic Dementia followed; a condition that is different to Alzheimer’s disease.

The day to day effects are that she can’t always remember the names of things. For example, she could be shown a picture of a giraffe, which she would recognise as an animal of some kind, but not be able to identify which one. Similarly, she sometimes struggles in shops even if she has a list, and also has difficulty in picking up conversations in noisy environments. If she goes for a day out, a couple of days later Mary will remember something she bought but won’t be able to recall where she bought it. But Roger provides constant support, helping with memory tests and helping by providing the first letter of a word, which can jog Mary’s memory.

Mary can do housework, washing, ironing and work on the computer. She also has an active social life. She is Chairman of Friends of Guiding, a group of retired Guide and Brownie Leaders and is involved with the Trefoil Guild, another Brownie related group. She is part of a singing group which has raised money for RICE, enjoys African drumming and is involved in many Church related activities in Paulton.

After she received her diagnosis the principal fear was that she wouldn’t be able to continue driving.

“I was never a very good passenger and much preferred to drive myself. I was fearful that if I couldn’t drive then I would not be able to do the things I still enjoyed, such as meeting my friends.”

The DVLA was contacted and they sent a questionnaire to the RICE Centre for Mary’s doctor to complete.

“I was delighted that I kept my licence. At first it was only given for 12 months but after more tests I have a licence I only need to renew every three years.”

Mary is re-tested every year and whilst there is some slight variance, overall she seems to be operating relatively steadily with little further decline.