Autumn 2012

RICE
THE RESEARCH INSTITUTE
FOR THE CARE OF OLDER PEOPLE
THE RESEARCH INSTITUTE FOR THE CARE OF OLDER PEOPLE
Autumn 2012
Newsletter
No. 34
In Focus: Dementia with Lewy Bodies
When most people think about dementia it’s Alzheimer’s disease that comes to mind. However,
there are many other types of dementia which are less well known but which have an equally
devastating effect on memory, thinking and everyday functioning.
One of these is Dementia with Lewy Bodies (DLB) and, like Alzheimer’s disease (AD), there is a
steady decline in mental ability which interferes with everyday life. However, DLB has a number
of features which are less typical of AD and which can be helpful in diagnosing the condition at
an early stage.
Upcoming
Events
SUPPORT US:
The RICE Autumn
Appeal
JOIN US:
Run in the
Bath Half 2013
WATCH US:
BBC Lifeline Appeal
Sunday 16th
December
Memory can often be relatively well preserved, at least in the early stages of the condition.
However, problems with planning, organising and spatial appreciation may be impaired from the
beginning. Visual hallucinations – often involving animals or people – are frequently present and
can cause considerable distress to the person experiencing them, and their family. Occasionally,
these visual hallucinations are accompanied by delusions and confusion over reality. Another
common characteristic is fluctuating attention and alertness which can occur over minutes or
hours.
Sleep difficulties can develop months or years before problems with thinking and everyday
actions emerge. For instance, someone with DLB can experience vivid dreams which they may
act out while asleep – a condition called REM sleep behaviour disorder.
Symptoms of Parkinson’s disease such as slow movement, muscle stiffness, loss of facial
expression and changes in the strength and tone of the voice can also occur in DLB, and frequent
falls are not uncommon.
Recent research has suggested that some of the drugs used for treating Alzheimer’s disease
(cholinesterase inhibitors) may provide some benefit for individuals with Lewy Body dementia,
although they are not currently licensed for this use in the UK . Recent guidelines from the
National Institute for Health and Clinical Excellence (NICE) do suggest however that these drugs
may be considered to prevent ‘symptoms causing significant distress to the individual, or leading
to behaviour that challenges’.
Not recognising DLB can cause problems as some symptoms would classically be described as
psychiatric, such as hallucinations and occasionally delusions. Any antipsychotic medication
prescribed can make the DLB symptoms significantly worse.
Lewy Body dementia is caused by the development of abnormal protein deposits in the brain which
disrupt the communication of nerve cells. Frederic Lewy (1885–1950) was first to discover the
abnormal protein deposits named "Lewy body inclusions" in the early 1900s. Dementia with Lewy
bodies only started to be diagnosed in the mid-1990s after the discovery of the proteins in postmortem brains of some dementia patients. In 1996, a consortium of scientists initially proposed
and later revised diagnostic guidelines.
Attention was drawn
to DLB following
the 2008 death of
Golden Girl actress
Estelle Getty, who
had previously been
diagnosed with both
Parkinson's Disease
and Alzheimer's
Disease before her
true condition was
discovered. Fellow
Golden Girls cast
members noted that
years earlier, she
had severe trouble
remembering her lines
during the filming of
the show.
A new 24 hour helpline is available for people who want to speak with somebody
about dementia, or for those who do not have access to the internet. The helpline
enables you to speak in confidence: 24 hours a day: 365 days a year. More details
inside...
Do drugs slow the
progress of
Alzheimer’s disease?
Results from the DOMINO Study
Professor Jones and the team at RICE took part in an
important research study funded by the Medical Research
Council (MRC) that began in February 2008; the results
were recently published in the New England Journal of
Medicine, one of the top medical journals, and led to
considerable media interest.
The study tried to answer the question as to what happens
to a patient receiving one of the original drug treatments
for Alzheimer’s disease - donepezil (Aricept®) - after they
have been receiving it for some time, and perhaps it
seems the drug is no longer having any benefit.
In the study, patients who had been receiving donepezil
for at least 3 months (but usually much longer) either
remained on it , or were given either memantine (Ebixa®)
– another drug for AD that works in a slightly different
way – or a placebo or they continued on donepezil and
added memantine. This was a double-blind study lasting
one year and neither the RICE team nor the patients knew
which treatment any particular patient was receiving.
The results were extremely valuable showing that it was
clearly better to continue receiving some kind of drug
treatment because the group on no treatment did not do
so well. Those who continued on donepezil did the best,
but those who switched to memantine also did better
than those who stopped drug treatment altogether.
Adding memantine to donepezil did give better results
overall but the extra benefit was not significant (based on
the scientific analysis). This result is in contrast to some
other research studies, mainly from the US, suggesting
that the combination of the 2 drugs does give the greatest
benefit. The drugs of course only slow the progression of
AD, they do not stop it.
Whilst this study supports carrying on with drug
treatment, in fact only around half of the people who were
meant to continue with donepezil actually completed
the one-year study. This suggests that many patients
may perceive that continuing drug treatment is not
necessary or helpful. The findings suggest that stopping
drug treatment should only happen after careful thought
and discussion as whilst some people may stop without
any noticeable ill-effects, for others it may be necessary
to restart treatment and continue for a longer period of
time.
We are very grateful to all of the patients and their families
who helped RICE with this study. Our research depends
on such help – if you or someone you know is interested
in being involved in any of our research, please contact
us and we will try and involve you as soon as there is a
suitable research study for you.
Research
Volunteers Needed
RICE has been involved in Clinical Trials looking at new
treatments for Alzheimer’s for many years. The 1990s was
an exciting time as we could see that the drugs people
were taking in the trials were definitely helping their
memory and thinking problems. These people had the
benefit of having a treatment long before it was generally
available. The drugs - namely donepezil, galantamine,
rivastigmine and memantine - have now become
standard treatment. However, these medications only
give a modest benefit and do not treat the underlying
causes of Alzheimer’s.
RICE continues to have an exciting research programme
looking at treatments that may work more effectively
than the current drugs and, in some cases, may modify
the disease process itself. Most of our trials involve a new
drug being given in addition to the standard treatment,
for a period of 6 months to a year.
Our current trials need people with Alzheimer’s disease
who are generally in good health and live with or see a
relative several days a week. We need both the person
with Alzheimer’s and the relative to attend regular visits
usually every 2-4 weeks for 1 to 2 hours so that we can
carry out tests to monitor progress. We can provide
transport as well as tea and biscuits and usually people
enjoy an opportunity to chat to RICE staff and have
their problems and concerns listened to on an ongoing
basis. The main benefit, however, is that they have the
opportunity to try a new treatment that may be better
than what we already have, years before it is generally
available. Volunteering to participate in a study is one of
the greatest ways someone can help move Alzheimer’s
research forward, as we need to find better treatments.
If you would like to know more and perhaps be involved,
please contact RICE and ask to speak to one of the research
staff. Unfortunately some people are not suitable for
various medical reasons but there may be other ways of
helping with our research programme, so please feel free
to ask.
s
r
a
e
20 Y Anniversary
The Friends of RICE are celebrating 20 years of raising
funds for research. A celebration lunch is taking place
on Monday 22nd October, where local dignitaries will be
mingling with current Friends, looking at what has been
achieved over the years and the plans for the future.
There are still a few places left if you’d like to learn more
about being a Friend and see the RICE Centre. Please
phone Friends Chairman, Dr Bruno Bubna-Kasteliz, for
timings on 01225 312092.
Watch the BBC TV Lifeline Appeal
Sunday 16th December 2012
RICE is being featured in the December BBC Lifeline Appeal, broadcast
nationally on BBC1 on Sunday afternoon and repeated on BBC2 on
Wednesday the 19th December. This is a fantastic opportunity to raise
awareness of RICE, find out more about us and understand the devastating
effects dementia can have for everyone.
Please spread the word and help us raise much needed funding
The Dementia Challenge
In July a cross-party report on dementia was published. The ′All-Party Parliamentary Group on Dementia – Unlocking
Diagnosis′, is a result of The Dementia Challenge launched in March 2012 by Prime Minister David Cameron. The aim is
to tackle one of the most important issues we face as the population ages; that of making a real difference to the lives
of people with dementia and their families and carers. The key aims of the challenge are to:



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give a boost to dementia research
address the quality of dementia care
increase public understanding of dementia
make communities more dementia friendly
The cross-party report comments on the huge variations across the UK in the time it takes to get a diagnosis for dementia
- ranging from a few weeks to over a year. One of the main priorities in the Prime Minister’s Challenge for England is to
improve diagnosis times, but a leading expert told the MPs that in most places “nothing much” was happening.
RICE Director Professor Roy Jones was asked to comment on BBC Radio Bristol about dementia diagnosis in the South
West. He confirmed that the RICE Memory Clinic in Bath had an obligation to see everyone within four weeks of being
referred, with most being seen sooner; however in other areas the wait can be much longer. His concern is that the
report is a little simplistic regarding the complexity of diagnosing dementia.
“It isn’t as if one day you don’t have dementia and the next day you do; there is a grey area from
when minor changes are first noticed, to more significant changes. Often individuals and their
families are not aware of what is happening and it’s very difficult for a doctor to identify during one
visit what can be quite subtle developments. Also the problems are not always due to dementia;
there could be some other medical reason such as depression and it’s important that we don’t tell
people they have dementia until we’re sure. Diagnosis is a case of putting together the pattern of
the problems over a period of time: there is no quick test”
The relief of receiving a diagnosis is highlighted in a letter recently received at RICE. It comes from the daughter of a
patient and expresses her thanks that finally they all know what the problem is.
“I’m sure the medication can’t have kicked in this quickly but I want to say how different things are already for
us. Mum is so much more relaxed and although we don’t mention the word ‘Alzheimer’s’ we are now able to talk
very openly about her memory problems with her for the first time in two years. It’s almost as if it’s a relief for her
too and she doesn’t have to pretend everything is OK anymore.
As her family, we feel we can now learn how to do our best for her and plan ahead, as having a diagnosis has
helped us all to accept the problem and prepare for whatever may lie ahead. Mum is trying to adapt to the
tablets and she understands the need to continue with them and her visits to the Memory Clinic. The past 5 to 6
days with her have been the best I have had with her in a long time. I just wanted to say thank you.”
Order your Christmas cards today
This year’s order form is enclosed
LOCAL CHARITIES WORKING TOGETHER
Something for carers at the Memory Clinic
A collaboration between RICE and the Radstock-based Carers’ Centre has led to new support for carers. An advisor from
the Centre is now available to meet with carers who are accompanying anyone with an appointment at the Tuesday
morning Memory Clinic in the RICE Centre.
During their appointment families and carers can talk confidentially about their caring role and any problems they
may be having, such as employment or their own health issues. We all know that receiving a diagnosis of dementia is
challenging for everyone. Sometimes it’s overlooked that it can be as upsetting and life changing for both the family and
the carer. It is important for carers to be able to access timely support and the Carers’ Centre welcomed the opportunity
to help and advise. Carers’ Officer Neil Drinkwater explained,
“We can help carers by signposting to services, such as replacement care services or day centres. We advise
and help them to plan regular breaks and can book an assessment of their own needs, all during their visit
to RICE. “
Carers can be registered with the Carers' Centre during their visit and begin accessing free services such as Give Us A
Break, support groups, specialist advice, employment and training workshops among many other services within days
of their visit to the memory clinic.
NEWS FLASH - the next Carers’ Course starts on 19 October.
Call 01225 476420 for details.
End of life planning
RICE and local hospice Dorothy House have been working together to find ways of supporting people with dementia
and their families with planning for future care.
Many people with a life threatening illness such as dementia find it helpful to talk about what they would like to happen
to them in the future. It can increase confidence that they will be cared for in accordance with their wishes, whilst
reducing anxiety and creating a greater sense of control.
These conversations can be difficult and no one should feel pressurised into taking part in them. However, it may be
possible to find a gentle way of introducing the topic which allows these sensitive issues to be discussed. This can
give the person and their family peace of mind about the future so that they
can then concentrate on living. This may be particularly important for people
with dementia who are concerned that they will lose the ability to make their
own decisions about care and treatment.
Two organisations are working towards helping us understand what can be
done. The Dying Matters Coalition leaflet, ‘Time to talk’, encourages people
to start conversations with people affected by dementia. In addition, the
National Council for Palliative Care leaflet ‘Planning for Your Future Care’ is a
guide to the process of planning ahead and is useful for everyone.
Time to Talk is available at www.dyingmatters.org or
call Freephone 08000 21 44 66
Planning for Your Future Care is available at www.ncpc.org.uk or
http:// www.endoflifecareforadults.nhs.uk/publications/planningforyourfuturecare
Sweet Treat
If you have a sweet tooth and wonder what to do with your empty Smarties box, then
follow the lead of the Mullins family. Twice a year they hand out boxes of Smarties, eat
them, and then fill them up with spare 20p and £1 coins. Over the year they collect around
£150 which they then bring in to RICE. Please note, we also accept unopened boxes and
any other chocolates...
Relearning lost skills
Cognitive Stimulation Therapy (CST) is a treatment for people with mild to moderate dementia aimed at improving and
maintaining mental functioning and encouraging social interaction. The programme runs over 7 weeks. Each week, two
therapy sessions cover a range of tasks and activities to stimulate the use of language, memory and reasoning skills, using
situations that are common to everyday life and hence highly transferable.
CST is starting to be used in community, care home and hospital settings and was strongly endorsed by the latest World
Alzheimer’s Report. Recognised as a group intervention for people with dementia, CST is recommended by the UK NICE
guidelines. In clinical trials, CST has been shown to improve cognition and quality of life and matched the impact of the
current anti-dementia medication.
At RICE we hold three programmes a year, delivered
by the Memory Clinic nurses and psychologists. The
techniques used do not aim to test factual answers but
encourage participants to give their opinions and to
actively stimulate them in a fun and non-challenging way.
Sessions cover activities such as going shopping, and
memory tests such as identifying celebrities.
Combining this with the social benefits of a group helps
maintain independence and enhances the quality of life
for both the person with dementia and their family and
friends. All courses are free to participants and all funding is raised by RICE. Each course costs us £1,880.
Here are participants in the
September CST group showing their
creative skills. By the end of the 7
week course, strangers had become
friends.
The equipment used during the three
courses run this year was purchased
from a grant given by The Friend’s of
St. Martin’s Hospital.
Tony, Brian & Harry get creative
Harry’s excellent sketches
24 Hour Phone Helpline
Another charity working to provide support for anybody affected by dementia in BANES is Guideposts Trust.
They have been working in partnership with RICE and other dementia service providers, to produce After
Diagnosis – A Handy Guide. It is a rich resource of information about living with dementia and the support
services in B&NES and is given to anyone newly diagnosed at the RICE Memory Clinic.
Guideposts Trust also host a local dementia website, www.dementiawebbath.org.uk, providing up-to-date,
impartial, appropriate and timely information about support in our area – including information about RICE.
For people who would rather speak to somebody about dementia, or who do not have access to the internet,
they have a 24 hour helpline which enables you to talk in confidence 24 hours a day: 365 days a year. If you’re
unsure about anything then give them a ring.
Sunday 3rd March
Do you know anyone, either friend, family or work colleague who would like to run for RICE?
We have 20 Golden Bond places available.
If you think you could raise £250 then contact us right away to book your place.
Email [email protected] for details.
It’s magic...
The 19th Memory Trail
On Friday 14th September an unusual fundraising event
took place in Bath, performed by specialist entertainers
from the Bath Circle of Magicians. It was THE Magic Show,
a fantastical evening of illusion and fun for all the family.
The incredible close-up magic performed right under our
noses by a team of expert Magicians was spellbinding.
The sleights of hand and zany illusions were delivered
with non-stop comedic patter, entertaining everyone at
this great family show. Many
thanks to everyone who
gave their time and to those
who were entertained!
Friend of RICE Geoff Lee (left)
laughs on as Paul Preager
forces a knife through his
jacket - magically of course!
took place on Sunday 16th September with the largest
number of walkers for many years. 132 people of all
ages turned up on the day for the walk around Newton
St Loe, many accompanied by their four-legged friends.
We’re still waiting to see how much sponsorship has been
raised. Many thanks to Celia Gay at the Newton St Loe
Farm Shop and Café for sponsoring the day.
Our youngest walker baby Fisher with mum & dad
Cooling down after the walk
Freefall for cash
Five Bath Spa University students jumped to raise money for RICE in April. Lucy Mitchell, a student volunteer at RICE,
persuaded five of her fellow Bath Spa University students to face their fears and do a tandem skydive. The students taking the
plunge were Ben Perrett, Samantha Tagell, Emma Deacon, Jack Heard and Matt Lochrie and together they raised over £1,200.
Jack, Lucy, Ben, Emma, Matt & Sam – suited and booted and ready to jump
The Spring
2013 RICE
Photography
Competition
In the air
We’ve had great community support this year,
especially from the local Lions and Rotary Clubs.
Anyone for golf?
It’s been an excellent year for golf tournaments - in spite of the horrendous weather.
Many thanks to the Cumberwell Park Golf Club Seniors and the Rotary
Club of Bath for donating the proceeds of their May Golf Tournament
to RICE. Together they raised a fantastic £2,500. Seniors’ Captain Dave
Larcombe chose to support RICE because:
“I feel we are the lucky ones being able to enjoy playing golf at our
time of life so I wanted to do something for those less fortunate
than ourselves and, as someone born and bred in Bath, something
locally based. So RICE was an obvious choice.”
Pictured left to right: Dave with Malcolm Blower and Henri Collin, the
winners of a very competitive pairs ¾ handicap Stableford event with a
fantastic score of 44 points.
Keynsham Lions Club
The Lions Club of Bath
The Partners of Keynsham Lions Club have also been busy
fundraising. They collected £675 during the 2011-2012
year and decided to donate it to RICE. Many thanks to
everyone who gave their time to help.
held their first ever golf tournament at the Bath City Golf
Club in June. Despite the challenging weather they had a
great day and raised £1,500 which they donated to RICE.
After a tour of the RICE Centre to see how their support
will help, outgoing President Sue Harris and new President
Peter Brewer presented a cheque to RICE Director Professor
Roy Jones.
Pictured left to right: Janet Worlock, Immediate Past President’s
wife presenting the cheque to Gina Caddick, RICE Fundraiser,
with Lions Partners Phyllis Seymour and Pauline Hawker
Boost our funds and recycle your unwanted items!
By post:
Recycle and turn your unwanted
items into a donation for us by
using the enclosed enevlopes.
PLEASE ONLY PUT IN ITEMS LISTED
ON THE ENVELOPE - NOT ANY
OTHER CORRESPONDENCE
FOR RICE
At the RICE Centre
Please donate any unwanted items
into our RECYCLING BOX on your
next visit;
 JEWELLERY – GOLD OR SILVER
 COSTUME JEWELLERY
 WATCHES
 OLD & NEW FOREIGN NOTES
 MOBILE PHONES
 STAMPS
RICE
Challenging Dementia:
Through Research, Treatment and Care
THE RESEARCH INSTITUTE
FOR THE CARE OF OLDER PEOPLE
The RICE Autumn Appeal
Our last direct approach to our supporters for funds was in the early 2000s as we attempted to raise £2million to
relocate from St Martins Hospital to our new centre near the RUH. Your generosity was amazing. The result was The
RICE Centre; a first class environment where we continue to challenge dementia through research and by providing
the best treatment and care possible.
We are now asking for your help again, this time to raise £11,000. As
a totally independent charity we need to find funding not just for
research projects and community services, but for this wonderful
Centre from which these services are delivered. To maintain the
building and equipment is a yearly challenge; as is ensuring we
have the best people to carry out our important research and
community projects.
Occasionally a need comes along which requires its own funding
drive, and our current high priority is to update our computer
systems. The technology used in medical research evolves quickly
and we need to ensure we keep pace with our research partners.
This will help us perform at the level we need, so we always deliver
our very best service.
Many of you send in donations after receiving the Newsletter and this time we’re asking for even more of you to
help support us to get this vital equipment. If you’d like to make a donation, please complete the form on the
back of the Supporters Letter and send it to RICE in the Freepost envelope enclosed. Alternatively you can donate online via the RICE website www.rice.org.uk, by clicking the Donate Now button. Please add ‘Computer Appeal’ in the
message box at the end of your on-line donation.
If you’d like to help but do not want your donation to be used for technology, just tick the exclusion box on the
donation form.
Dementia Tsar visits RICE
Professor Alistair Burns, National Clinical Director for Dementia, visited Bath on 2nd October at the invite of Dr Chris Dyer,
Consultant Geriatrician and Clinical Lead of the Older People’s Unit at the RUH. Prof Burns had earlier expressed interest in
seeing the extensive work being done in the area to support older people with dementia. He started his visit at the RICE
Centre, where he met RICE Director Prof Roy Jones and Dr Dyer in his other role of Chairman of the RICE Trustees.
Read Prof. Burns comments on the Department of Health dementia awareness campaign ‘A Day to Remember’ which started
in September. http://www.guardian.co.uk/healthcare-network/2012/sep/24/primary-care-raising-quality-dementia
A BIG Thank You
RICE would like to thank the following for their support:
The Rotary Club of Bath; Mendip Branch of the Farm Women’s Club; The Friends of St Martin’s Hospital; MOD
Care; The Smith Charitable Trust; The Verdon-Smith Charitable Trust; The Friendly Brothers of St Patrick;
Keynsham Council; The Essex Trust; The Raven Pub; The Bath Multi Racial Club; Open Fundraising; Curo,
Bath; The Cunning Artificer; Reginald & Olive Curtis; Tricia Mugridge and Giveacar.
The Research Institute for the Care of Older People
The RICE Centre, Building 8, Royal United Hospital, Bath BA1 3NG.
Tel: 01225 476420 Email: [email protected] Website: www.rice.org.uk
The Institute is a Registered Charity No. 1042559 and not part of the NHS.
Company limited by guarantee, registered in England No. 2979617. Reg Office as above.