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 like to thank the following for their support: The Albert Hunt Trust, The Medlock Charitable Trust, The Lynn Foundation, The Discworld Foundation, Reuben Foundation, Douglas Arter Foundation, The Ray Harris Charitable Trust, The Pixiella Trust, The Verdon-Smith Family Charitable Trust, The Bergqvist Charitable Trust, The Annett Charitable Trust, The Sir Jules Thorn Charitable Trust, Smith Charitable Trust, Cards For Good Causes, and all our regular supporters for their donations, participation and time given to RICE. Special thanks also to Charlie Murray-Coronis who raised over £1000 in a recent jumble sale at Freshford Village Hall.

Memory Trail 2015 Many thanks to everyone who joined us in Monkton Combe for the Memory Trail on 5th September. Despite it being an overcast day we were pleased to see so many familiar faces—the routes were challenging but everyone managed to finish! Thanks to the generosity of walkers and their sponsors the event managed to raise over £2000 which is brilliant!

A Big Thank you

A beautiful day on 27 September saw several top sporting shots converge on the little village of West Littleton near Dyrham.

They went to participate in the Clay Pigeon Shoot that the villagers organise every year for charity. This year RICE was one of two beneficiaries and Prof. Roy Jones went along to try his hand at the novice, air rifle and archery stands, which he thoroughly enjoyed.

The event was a huge success and on behalf of the organisers Carolyn Adams donated £1000 towards the RICE DementiaPlus Appeal.

Many thanks to Eddie Newman who has chosen RICE as Charity of the Year during his year as Provincial Grand Primo. Jane Turner, RICE Fundraising Manager was delighted to attend Eddie’s investiture in April and meet local RAOB members who do great work in support of charities.

Royal Antedeluvian Order of Buffaloes (RAOB) Frome &

Warminster

West Littleton Clay Pigeon Shoot

Newsletter Autumn 2015 No. 40

Inside:

Research updates

Fundraising news & Appeal

Thank you from

RICE

RICE 30th Birthday Appeal

RICE has made a real contribution in the field of dementia over the last 30 years with achievements

including:

Opened one of the first Memory Clinics in the UK – now a standard model throughout the UK, also pioneered ‘self-referral’ memory clinics.

Key early participant in research trials for the 4 drugs now prescribed to treat Alzheimer’s disease. Worked to ensure NICE approved these drugs for general use in NHS. Helped develop national ‘best practice’ guidelines for doctors and health professionals to ensure

people with dementia and their carers receive the right health and social care. Supported research to ensure the needs of frail elderly patients were considered when setting

dosage levels for medication. Developed the BASQID (Bath Assessment of Subjective Quality of Life in Dementia).

With more people living longer, many of us will be affected by diseases such as dementia either directly or via family or friends; however research and research funding into dementia lags behind that of other diseases such as cancer and heart disease.

Awareness of dementia has grown significantly and whilst this will add pressure to increase publicly funded research it’s unlikely to be at the level the problem requires. At RICE we know that we can’t afford to wait and have ambitious plans to expand our own research programme.

RICE future plans

We are launching the RICE DementiaPlus appeal to raise £1m over the next 4 years.

The money will fund the creation of additional research facilities at the RICE Centre and, in conjunction with the Royal United Hospital and the University of Bristol we will recruit more senior researchers so that we are able to scope and conduct even more research studies in the future.

This will enable RICE to;

Expand and develop our research Centre of

Excellence.

Scope and conduct innovative research into a range of neurodegenerative diseases including.

Alzheimer’s disease, Parkinson’s disease and other types of dementia.

Research new drug and non-drug therapies to help people live well with dementia.

Provide further opportunities for participation in clinical research studies.

Our ultimate goal is to help develop a cure for dementia.

Autumn 2015 No 40

Research Update

RICE at the Forefront of Research - AN EXCITING NEW PHASE!

In 1995, we gave a new drug for Alzheimer’s disease (AD) to the first patient in the world and we have always aimed to be at the forefront of research to find effective and safe treatments for people with AD and other types of dementia. Once again, RICE is leading the way with a completely novel approach that targets the tangles that are found in the brain in people with AD and some other types of dementia. Most recent research has targeted the amyloid protein deposits that occur in AD but so far without clear success. Unlike amyloid, we know that there is a closer link between the number of tangles in the brain and the severity of memory and related problems in an individual with AD. Professor Roy Jones, RICE Director is the Chief Investigator for this study being carried out with a Swiss company, AC Immune. This first study with a new vaccine, ACI-35 is being conducted in the UK and Finland. It will look at the initial safety and effectiveness of what is a very exciting and promising new development. Professor Jones has been actively involved in the design of the study which has already started without any problems. “This is a very important study. It opens the way to a completely different and hopefully much more effective treatment initially for people with Alzheimer’s disease but possibly in the future for some other types of dementia as well. However this research will only be possible if we can recruit appropriate patients with mild Alzheimer’s disease to help us with the study. Patient recruitment opened in September and a number of patients have already booked for screenings or have expressed interest. Of course, as with any of our studies, we would first need to check whether you are suitable. This involves looking at your medical history or any medication you are taking, and if you pass the first stage, we would invite you in for a ‘screening visit’ where you would have further tests to check your eligibility. Most studies involve various things such as checking your weight, blood pressure, heart rate, etc as well as a medical examination and you will also have a Magnetic Resonance Imaging (MRI) scan of your brain. The AC Immune study additionally requires collection of a sample of spinal fluid (a lumbar puncture, which is a straightforward procedure) at two intervals during the course of treatment. If this hasn’t put you off and you feel like a new challenge – or you are a carer for somebody whom you think may be interested – then this may be for you and we’d love you to get in touch! Many of you already will be familiar with the RICE Centre and its excellent facilities including our own car parking. If you are enrolled onto a research study, there will be more visits and activity than with a usual clinic visit, which most people find interesting and enjoyable. You get to see more of us and we get to keep a careful eye on you during your time here. We’ll organise transport to and from your home, make sure you’re comfortable and provide refreshments during your visit. And in addition, you and your family know that you are one of those important people helping RICE in the ongoing quest to find newer and more effective drugs to combat the progression of conditions like Alzheimer’s disease.

Fundraising Promise

There has been a lot in the media recently about the behaviour of some charities who have been

involved in heavy handed fundraising – RICE has never carried out activities such as telephone or door

to door canvassing, excessive direct marketing or selling/exchanging donors details and we thought it

would be a good idea to put together our ‘Fundraising Promise’ as detailed below;

RICE promises to;

Always treat our supporters with respect.

Spend all money donated carefully with the intention of either conducting research to improve

the lives of older people or providing support services for RICE patients their carers’ and family.

Only send fundraising communications to people who want to receive it.

Offer supporters an easy option to change their minds and remove their name from our mailing

list.

Provide support and guidance to any group or individual who chooses to fundraise for RICE and

make them aware of legal issues surrounding fundraising activity.

RICE promises never to;

Disclose details of our supporters to any other organisations or individuals.

Phone and ask for money.

Put pressure on supporters to do more than they are comfortable with.

If you have ANY concerns about fundraising activity at RICE please contact Jane Turner, Fundraising

Manager.

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

Get involved! How you can support the DementiaPlus appeal

We’ve set ourselves a challenging target but due

to the generosity of some individuals and local

charitable trusts we’ve already raised £450,000.

However, there’s still a long way to go and there

are many ways you can help RICE raise sufficient

funds to expand our research programme;

Make a donation.

Organise a fundraising event.

Take part in a challenge and raise sponsorship.

Nominate RICE as Charity of the Year at work or any groups you may belong to.

Please contact the fundraising team if you would like any further information about the appeal or would

like to discuss a fundraising idea.

Fundraising News

The next Vitality Bath Half Marathon is to be held on the 13th March 2016 and RICE has been allocated 10 charity places. Earlier this year our fantastic team of runners raised over £4000 in sponsorship so let’s see if we can raise even more in 2016!

So far we’ve recruited a small team of RICE staff and would love you to join them!

If you are interested in joining the RICE team please contact Jane or Jackie in the fundraising office. However if you would prefer to sponsor a member of the RICE staff team then please visit either Dr Krist Noonan’s or Professor Jones’ fundraising pages at

https://mydonate.bt.com/fundraisers/kristnoonan1

https://mydonate.bt.com/fundraisers/royjones1

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

RICE Christmas Cards Many thanks to everyone who has already bought cards.

A selection of RICE cards are available via mail order (please see enclosed order form) or from the RICE Centre, we will also have a table in the Atrium of the Royal United Hospital weeks commencing

19th October and 23rd November.

RICE Christmas cards are also available from Cards For Good Causes in Bath (St Michaels Without), Frome (St John’s Church) and Wells (St Cuthbert’s Church).

Don’t forget, if you like a flutter with your charity giving, you can support RICE by joining the 300 Club, our very own monthly lottery where both lucky supporters and the charity are winners! 300 club members pay £12 per number each year to be entered into a monthly draw. You can have as many numbers as you like and every month £1 from every number goes into the draw pot. This is

divided between the charity and the members, two thirds goes to RICE and the remaining third is awarded as three monetary prizes to members. If you would like more information then please contact the fundraising team. Tel: 01225 476420. Email: fundraising@rice.org.uk

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

If this particular study is not of interest – then there are always new opportunities coming up at RICE so there may be another which would be more suitable. We currently have several studies ongoing and several more are due to start in early 2016. If you are in-terested in taking part in any of our drug treatment (or non-drug treatment ) studies, we can always keep you on our research list and let you know as soon as new opportunities arise. Your involvement is always voluntary and we discuss each study individually with you. RICE relies on the help and support of our patients and carers (as well as patients and carers from else-where) to keep our research active and flourishing. If you are interested in finding out more, we provide extensive Information about every study which will hopefully give you all the answers you need – and if not, the team at RICE are always happy to chat to you and answer any questions you may have. For further information about our studies, please contact Vanessa Bishop, Clinical Research & Quality Administrator on 01225 476420.

Research Update

Research Update

Individuals with dementia and their families face many challenges in the period after receiving the

diagnosis. Time and support is essential to come to terms with the diagnosis itself and its implications

for the future. Providing psychological and social support after diagnosis – such as “talking therapies” –

is an important part of the care pathway for individuals with dementia and their families. As such this

has been recognised by the Royal College of Psychiatrist’s Standards for Memory Clinic Services

guidelines and also by the Dementia Action Alliance who have identified a “post-diagnostic gap” in

support services for individuals with dementia nationally.

Improving the well-being of individuals with dementia is one of RICE’s core aims and we are currently

working towards further improving our support for peoples who have recently received a diagnosis. At

present RICE offers individually tailored diagnostic services for people with dementia, which can include

local Dementia Support Workers, coupled with additional support from dedicated Cognitive Stimulation

Therapy groups and a four week carer’s course for family members. However, more can always be

done.

A recent pilot study by Marshall et al (2014) has shown that dedicated post-diagnostic support groups

lasting an hour a week over a 10 week period can lead to better acceptance of dementia. These groups

allowed individuals with dementia to discuss and overcome the emotional distress of the diagnosis with

other people who faced the same challenges. Together they were able to discuss their feelings about

dementia and begin to look ahead to the future without being overwhelmed by the emotional

consequences of the diagnosis. This study also provided preliminary evidence that the participants

experienced improvements in quality of life and self-esteem and some individuals were more open

about discussing their diagnosis and future plans following the group sessions. Therefore, post-

diagnostic support groups may form a foundation for a process of adaptation which allows people to

come to terms with the changes they have been experiencing.

More work is required to refine and develop post diagnostic support

groups in order to achieve their maximum potential. We have requested

funding from a number of local charitable trusts that we hope will allow

us to deliver three 10-week support groups in 2016/2017. As well as

providing front-line support for individuals with dementia and their

families we intend to fully evaluate the benefits. With the knowledge

that we gain from this we plan 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. This will help us develop a framework of

excellence for post-diagnostic support in dementia.

Studying the impact of post-diagnostic support

Staff ‘in focus’ Our staff includes a range of different healthcare professionals including medical doctors, nurses and

psychologists who all have a passion for research. In this edition we explore the role of one of our

psychologist Dr Krist Noonan who has been with us for the past 5 years.

“’Firstly, what does a psychologist do and how does this differ from a medical

doctor”

KN: “At RICE psychologists carryout assessments of memory and thinking processes

that help the medical doctors decide whether someone has a memory problem or

not. This is a vital part of establishing not only if the person may have dementia but

also what type of dementia. In addition, we are involved in designing and carrying out research studies

that explore the psychological aspects and features of dementia.”

’‘What does your role at RICE involve?’

KN: “Essentially I am responsible for managing much of the academic research programme at RICE which

includes studies that explore how dementia develops and progresses. We also look at evaluating new

techniques for memory and cognitive rehabilitation and projects exploring technologies for supporting

individuals with dementia in their homes”.

“How do you decide what to research and who pays for the research to be carried out?”

KN: “From working with individuals with dementia we often see areas where further research might be

helpful. For instance, previous research on techniques for improving language and naming skills in

dementia was driven by our experience of working with people with speech difficulties in the clinic and

observing the impact this has on them and their families. Finding the funds to support research such as

this is always difficult and we rely on donations from the public to support much of what we do. We also

submit applications to other funding bodies such as the National Institute for Health Research,

charitable trusts and the research councils but the funding is limited and the competition for these

awards is considerable.”

“Once a research study is finished what happens to the results?”

KN: “We aim to publish our research findings in medical, research and other journals so that everyone

can learn from our research. Additionally we often give talks to academics and members of the public so

they understand the key findings from our research. ”

“What gives you the most satisfaction from your role?”

KN: “There is quite a bit of variety in the role, the research is always interesting and varied and I get the

opportunity to support people with dementia and their families through my work in the memory clinic.

Having a memory clinic which is also a research centre is a good idea as it helps you

develop ideas for research based on a first hand understanding of the problems

individuals with dementia face”.

“How do you unwind outside work”

KN: “I took up running at the start of 2015 and am training to run the Bath Half

Marathon in support of RICE next March.”

“