Autumn 2012
Transcription
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: 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.