March 2010 newsletter
Transcription
March 2010 newsletter
Memento Issue 22 Spring 2010 Station Approach, Trowbridge, Wiltshire, BA14 8HW Tel: 01225 776481 E-mail: [email protected] Website: www.alzheimerswiltshire.org.uk Singing for the Brain groups to start in west Wiltshire Alzheimer’s Support has joined forces with a national charity to bring Singing for the Brain© to west Wiltshire. The acclaimed singing groups were started by The Alzheimer’s Society five years ago and have been enthusiastically received by people with dementia and their carers, who attend the groups together. They have also been praised by health professionals who say they provide a perfect therapy for those with memory problems. Stephany Bardzil, who is leading the project for Alzheimer’s Support, said: “The groups are carefully planned to meet the needs of people who often remember song words and melodies after other memories have faded. Our teacher will use vocal warm-up exercises and present challenges to the Singing for the Brain in Bristol. Picture courtesy of BBC brain such as singing in rounds and harmonies.” Our first group will meet at the Wiltshire Music Centre in Bradford on Avon on April 19, with others to follow in East Wiltshire later in the year. The project is supported by Wiltshire Council. For more information call Stephany on 01225 776481. Alzheimer’s Support celebrates 20 years A YEAR of fundraising and special events is underway to mark the 20th anniversary of Alzheimer’s Support. The charity was set up in a oneroom office and now employs more than 60 people across East and West Wiltshire. Anna Littlechild, who still leads the charity as Principal Manager, was the organisation’s first and only employee back in 1990. She said: “ Twenty years on we are still calling for better services for people with dementia and speedier diagnosis. But much has changed for the better. Personcentred care is now the norm. “Perhaps the biggest Company Limited by Guarantee development has been the National Dementia Strategy last year. After years in the shadows as an illness no-one wanted to talk about, dementia has at last become more high profile.” The anniversary will be marked by a series of fundraising events including an envelope collection during National Dementia Week in July. Members of staff and as many supporters as wish to join in will each be asked to deliver and collect envelopes to 20 homes in their neighbourhood. Our AGM In September will be a special celebratory event with a tea dance. Registered in England No 3082546 £20 for 20 Years We are asking our supporters to help us secure our future for the next 20 years (and beyond!) by each pledging to raise £20 for our funds. You could organise a sponsored event, arrange a sale, dream up an original fundraising idea or just send in a donation. Look out for our pledge form on the back of his newsletter. You can pick up extra forms from the office or download them from our website Registered Charity No 1048314 2 Memento Inside New projects 3 Fundraising news 4-5 Day club and service news 6-7 Mainly for carers 8-9 Local initiatives 10 National campaigns 11 Diary Dates 12 Thank Yous 12 Alzheimer’s Support exists to enhance the well-being of families with dementia throughout West Wiltshire and Kennet. We have offices in Trowbridge and Devizes where clients and members of the public can get advice and information on all aspects of the illness. We run activity-based day clubs, a home and community support service where a specialist worker takes over caring duties for a time, and a range of support for carers. Contact us on: 01225 776481 (Trowbridge) 01380 739055 (Devizes) or visit our website: www.alzheimerswiltshire.org.uk Spring 2010 Alzheimer’s Support joins group to improve hospital’s dementia care ALZHEIMER’S Support has joined a Dementia Strategy group that is hoping to transform the way patients with dementia are cared for in the Royal United Hospital in Bath. The move follows our campaign to highlight cases where AS clients received poor care in the hospital. Development Manager Stephany Bardzil, who is attending the bi-monthly meetings on behalf of the charity said: “It is encouraging that this group exists. Its members are aware of problems in the hospital such as poor nutrition among patients with dementia and not enough understanding by staff of how to communicate with patients with memory loss. What is now important is the ideas being developed are put into practice on the wards.” One part of the RUH where changes are already underway is Combe Ward, a geriatric surgical ward. Measures introduced here include better signage, activity sessions to prevent boredom and dementia-friendly tableware, including coloured food trays to identify at a glance patients who need assistance at mealtimes. The group hopes to use this as a pilot for others and is introducing a system of charter marks for all wards to work towards which set down clear standards for how dementia patients should be treated. Alzheimer’s Support has also been asked to help train existing ward volunteers in dementia awareness so that they feel more able to interract with patients. Former carer Shirley Rhys, whose late husband Glyn died after an eight-week stay at the RUH last year, has welcomed the moves and is planning to meet the hospital Board of Trustees to tell her story. If anyone would like to volunteer to help patients with dementia at mealtimes in the RUH please contact Stephany on 01225 776481. WELCOME to our Spring newsletter, although it doesn’t feel very spring-like as I write this on a wintry day at the end of March. Looking ahead, 2010 going to be an exciting year for Alzheimer’s Support as we celebrate our 20th anniversary. We are hoping to use the occasion to raise awareness of the illness and of our services, as well as to raise some much-needed funds. We are so pleased to be launching our first Singing for the Brain group! We aim to roll out more groups later this year and next, so don’t worry if there isn’t one near you yet. Another positive step is our inclusion on the Royal United Hospital’s Dementia Strategy group. It is going to be a long road and financial constraints are ever-present in the NHS, so our advice to families is to remain vigilant, make a fuss if you need to and let us know your experience so we can feed it back. Many thanks to the carers who have contributed to this issue. Bill Elliott’s review of Still Alice is on page 8 and Bev Thompson has written a lively account of our Training Course for Carers on page 9. Finally, please take the time to fill in the questionnaire on using the internet that is included with the newsletter. Your responses will help us to redesign our website later in the year. Enjoy the Spring, Stephany Memento 3 Spring 2010 Handbook to help younger people with dementia YOUNGER people with dementia will benefit from a pioneering handbook produced by Alzheimer’s Support. The handbook is the first of its kind in Wiltshire and was funded by the Royal College of Nursing. Project leader Anna Spear, who is a care-coordinator for the charity, said: “People often think of dementia as affecting older people, which it usually does, but younger people can develop it too. There are far fewer resources for them as most of the services in place are designed for older people and may not always meet their needs.” Former chef Alan Welfare was diagnosed with CJD-related dementia at the age of 40. He is a member at Polebarn and Sidmouth clubs, where his cooking skills are often called upon. His wife Caroline said: “There was nothing like this handbook when Alan was diagnosed six years ago. I think people will find it very useful. “Alzheimer’s Support has been an absolute godsend to Alan and to me as a carer and I don’t think we would be where we are today without that support.” As well as creating the handbook, the project researched the needs of younger people with dementia. Anna said: “It was a good process for us to go through as a staff team to build our expertise in this area.” Anna Spear above, and left with Alan Welfare The 60-page handbook contains information on the different types of dementia, symptoms of early onset dementia, and explains the process of diagnosis and treatment available. It has a major section on where to get help and plenty of information on financial and practical matters, including employment issues. If you would like a copy please call 01225 776481 or download it from www.alzheimerswiltshire.org.uk Taking our message on the road… We have linked up with Wiltshire Council’s mobile libraries to take information about our services to rural communities. A representative of Alzheimer’ Support will be aboard the mobile bus for a day each month for the rest of the year, answering queries from library users and handing out leaflets about how we can help families living with memory loss. The routes cover the villages around Warminster, Devizes, Pewsey and Marlborough. See our website for routes and dates. Alzheimer café launched in Marlborough MORE than 40 people attended our first Alzheimer Café in Marlborough in February. The café meets on the first Monday of every month, offering a homemade tea and top speakers on a range of issues of interest to families living with dementia. The event is held at the Castle and Ball hotel in Market Place. If you would like to come along, please contact 01225 766481 or 01672 517435. Our evening café in Westbury, which will be a year old in July, was runner-up in the mental health category of Wiltshire Assembly’s Health and Wellbeing awards. For details of future topics at both cafés, please see the diary dates on the back page. Do join us for Sunday lunch People with dementia and their families will be able to join our new Sunday lunch club from September. The club will meet in a different pub or restaurant each month, so people can come along to an event near them, or attend regularly if they prefer. Anna Littlechild said: “As well as provide a pleasant social occasion at the weekend, the events will be run by staff experienced in dementia care, who will be able to offer an understanding ear and good quality information.” 4 4 Memento Memento Poignant ceremony at Colin’s golf club It was a poignant moment when members of Erlestoke Golf Club handed over a cheque for £2,000. The money had been raised for Alzheimer’s Support at the suggestion of club member Colin Smith who died suddenly from a heart attack in November at the age of 72. Mr Smith’s partner Jeanie Arkell, (left) and Suzanne with Bernie Maltby Mr Smith, of Southwick, had been a tireless fundraiser for the charity which he started to support when his wife Patricia was ill with the condition. When she died in 2005 he became a trustee. His daughter Suzanne Leigh said: “He had a wonderful life and was involved in so many things and so many causes, but it was Alzheimer’s Support that he was most involved in.” Outgoing Lady Captain Bernie Maltby said : “Colin often came to the club with an Alzheimer’s patient to play just a few holes. It was the way he lived his life, helping other people all the time.” Spring 2010 November 2009 A record year for fundraising OUR fantastic team of fundraisers and supporters have raised a record £80,000 this year, bringing our total fundraising income to £164,000 including grants from trusts and foundations. Fundraising manager Lesley Crawford said: “It is amazing that despite the recession, community groups and individuals have given more than they ever have before. We are grateful for every donation, large or small.” Songways choir in Trowbridge gave £150 towards the running costs of our new Singing for the Brain groups Hester and Mike Henebury ( left) ) raised £125 by running the Bath HalfMarathon Icy February may not be the obvious time to go for a dip, but our intrepid supporters braved the waters at Devizes Pool, raising Melksham Lions donated £200 around £400. after a hearing a talk on the work of Alzheimers Support The Rotary Club of Wessex raised £617 at a Bavarian A quiz night at the Prince of Evening in March Wales pub raised £124, while Bath’s Wednesday Girls lunch £2,000 was donated by local club sent in £150 company NECSol, in memory of Mr Fred Elliott Thanks to The Lamb in the Strand pub in Trowbridge which Carewatch donated £500 to has chosen Alzheimer’s Support buy a new cooker for Polebarn as its charity of the Year for 2010 club See p12 for a full list of donors Legacies allow the good work to live on Alzheimer’s Support was given an unexpected financial boost thanks to a legacy from a generous benefactor. We were left nearly £25,000 in the will of the late George Hubert Hey of Semington. As well as family bequests, he left money to six other charities. Fundraising manager Lesley Crawford said: “This is a great boost to us. Of course people must remember their own family first, but nowadays more and more people who support a charity decide they want that good work to carry on after they have died. We would be very grateful if more people thought about helping us in this way.” One man who has already decided to do that is Mr Jan Brand of Heytesbury. He has included a legacy to Alzheimer’s Support in his will after the charity supported his mother during the last years of her life. He said: “I will never forget how much I appreciated the help Alzheimer’s Support gave my mother. When you go to a solicitor and write a will there is an opportunity to leave a legacy and for me Alzheimer’s Support was the obvious choice.” Alzheimer’s Support is a member of the national Remember a Charity Campaign. Find out more at www.rememberacharity.co.uk Memento 5 Spring 2010 Team AS train for the big run STAFF at Alzheimer’s Support’s head office in Trowbridge are in training for the prestigious Asics 10-kilometre charity run in London. Emer Worth, Maria Apps, Stephany Bardzil and Lesley Crawford hope to raise more than £800 between them in the event on July 11. Also taking part are Louise Spear, daughter of care coordinator Anna Spear, and James Bishop, son of trustee Priscilla Bishop. If you would like to sponsor Team AS, please go to www.justgiving.co.uk/Team AS New fundraising group gets going in Marlborough WHEN Teri Snape’s mother died of dementia she wanted to do something to help others coping with the disease. She contacted Alzheimer’s Support and, when she discovered there was no fundraising group in Marlborough, offered to start one herself. Teri, a registrar whose job involves marrying people throughout Wiltshire, said: “I wanted to get involved because I wanted to make sense of what had happened to me and what is happening to other people. Somebody has to do something to help make things better for so many people who are coping with this on their own.” Teri’s fundraising plans include a summer party with a grand raffle and hog roast at Lockeridge in June, a ’cross-channel’ swim in Marlborough and taking part in the Pewsey carnival in September. She said: “I want to do things that are fun and different and will get younger people involved as well. My son and his friends are brilliant swimmers so for them a 21-mile swim is a really good challenge. It is also good for them to think about the Our Current Goal £130,000 Teri pictured with her late mother, Yvonne Grew needs of older people, but have some fun whilst they are doing it.” Fundraising Manager Lesley Crawford said: “We are delighted to have Teri on board and she has some excellent fundraising ideas and bags of enthusiasm. “It is a lot for one person to take on so it would be great if there are other people in the area who would like to get involved. “ If you would like to join Teri to form a fundraising group for the Marlborough area, please contact Lesley on 01225 776481. Thank you to everyone who has helped to raise funds for us. Your time and your donations are invaluable to our work. Coming up A UNIQUE collection of memorabilia is going on show on May 30 with proceeds going jointly to Alzheimer’s Support and Wessex Cancer Trust. The Nostalgic Get-Together, an annual event in Petersfield, Hants, has received national publicity thanks to a double page spread in the Daily Mail. This year the event is being held in memory of Betty White, who died of Alzheimer’s disease in January. Her daughter Liz Storey said her family were friends of the owner of the collection, John Digby Lovell, and always helped out at the show. She said: “John is the most genuine, kind man. His first thought when Mum died is what could he do to help.” Family and friends of Mrs White have already raised £1,500 in memoriam. WILTSHIRE musician Chris Stone is planning to release a song about his mother who had dementia. All proceeds from the sale of the CD will go to Alzheimer’s Support. Chris’s concert in November raised £1,000 for the charity. SWIMMERS are needed for a cross channel attempt — in Marlborough Leisure Pool. We have exclusive use of the pool for two hours on May 16 and 24 swimmers are needed to clock up the 21 miles. Call Lesley if you can help. 6 Memento Spring 2010 Reflexology, knitting and singing at Sidmouth Club MEMBERS and carers at the Sidmouth Club got a handson demonstration of the benefits of reflexology. They were visited at the club by experienced reflexologist Karen Newton who talked about the benefits of the therapy before some hands-on work with carers and members. Karen, who is the wife of club manager Grant Newton, has practiced reflexology for 25 years. She has her own practice and clinics in Bradford on Avon and Melksham. She said gentle massage and touch was relaxing and therapeutic, but also a good form of non-verbal communication. “It was a great atmosphere with carers and staff partnering with club members to try some of the techniques,” she said. The workshop was just one in a series of special events at the club. Earlier in the year carer Wendy Hiscocks delighted members with a lively singing session, and events coming up include a reminiscence day with Wiltshire Heritage, a show by Devizes Theatre, prose and poetry sessions with Wiltshire Libraries and even a belly dancing event. Grant said: “We are trying to do something different every month, to involve the local community in the life of the club as much as possible and to bring carers in to take part in the various things that we do here.” Above: Connie Thorne enjoys reflexology with Karen Newton and left, Pam Nazer with the blanket she knitted at the club. It, and several others, have been donated to the RSPCA’s Cats and Dogs Home in Bath Aiming high to make Frank’s dream come true Our Home and Community Support Workers aim to offer clients the chance to do what they want to do. So when Frank McKim decided what he really wanted was see an A380 land at Heathrow airport, Philip Horton knew what he had to do IT SEEMED like Mission Impossible. “Can we get to see an A380?” Frank, a plane buff, asked. So what's an A380 ? It's the largest passenger aircraft in the world, a double-decker capable of seating up to 850 passengers, and there aren't many of them in service yet. And it was mid-winter; not ideal for plane spotting. Consulting Google resulted in consulting PlaneMad.com – the website for plane enthusiasts. Research revealed a couple of long haul flights on Mondays, Wednesdays and Fridays, leaving around noon and 1pm from Heathrow. However, the observation lounge there was closed after 9/11, and many other spotting places around the perimeter were patrolled by airport security who discourage parking to watch. A grassy triangle at the end of ‘Myrtle Avenue’ was given as the only place for enthusiasts to observe long haul take-off and landing. Setting off from Wiltshire on a wet mid-February morning the omens seemed poor. Amazingly the weather cleared to bright sunshine en-route, Myrtle Avenue and the grassy patch were where they should have been, and there was room to park. Walking across the grass with Spotted: the elusive plane chair, sandwiches and binoculars we joined a serious enthusiast and asked if there were any A380s about. “Yes, just over the fence and it's manoeuvring.” That one whooshed overhead, en-route to Singapore, to be followed by another, going to Dubai, ten minutes later. Only two fly per day and we saw them both. Now Frank would like a trip to see them landing, undercarriage down, coming in lower and slower. Mission really impossible. By Philip Horton Memento 7 Spring 2010 Artist Clare Brown (right) with deputy manager Helen Stimpson and club members Picturecourtesy The Wiltshire Times Club discovers the wonders of wool MEMBERS of Polebarn Club got creative with wool in a series of workshops over the winter. The Wonders of Wool project was funded by Wiltshire Council as part of its Participatory Arts Workshop programme (PAWS). Jenny Mayne, who manages the day club, said: “The Friday group members here found the sessions very stimulating and working with the textures and bright colours is therapeutic as well as enjoyable. “The staff have also enjoyed learning new skills which they will be able to use with other members during the week.” The sessions with textile artist Clare Brown included the traditional skills of felt-making, weaving, knitting and crochet. The group rounded off the project by creating a large wall hanging incorporating all their work. Thanks to our community-minded taxi drivers TAXI drivers in Trowbridge and Devizes have provided great support — in very different ways. Drivers for Textacab in Trowbridge proved invaluable when a gentleman they knew from Polebarn Club went missing from his home in Trowbridge. When told that he may be trying to make his own way to the club they alerted all their drivers and found him safe and well in Trowbridge. When the same thing happened later the same week they brought him home for a second time. Meanwhile drivers for Devizes Taxis are carrying collection envelopes in their cars, so customers can make a donation to the charity if they wish. Above: Devizes Taxis’ Marcus Hopgood, Annette Harrison, club member Pam Nazer and manager Grant Newton picture Wiltshire Times Support workers brave snow and ice to see clients ALZHEIMER’S Support workers struggled on through January’s snowy weather to make sure no-one was left alone in their homes during the icy snap. Day clubs in Devizes and Trowbridge were forced to close because of the dangers of bringing members in by car, but staff went to great lengths to ensure people were visited in their own homes. Brenda McDonald, who is in her 70s, travelled more than seven miles into Melksham to visit a client whose husband had run out of essentials, while Susan Dixon was one of the few to get through to a virtually cut-off village on the outskirts of Devizes. Services Manager Gill FrereSmith said: “We phoned everyone who was due a visit to make sure they were alright. Quite a few visits were cancelled and of course we were careful not to put our own staff at risk, but we managed to get out to everyone who was on their own or particularly vulnerable. “We have a fantastic team of support workers here who were determined to make sure everyone was okay.” One client wrote: “Just a note to say thank-you for maintaining an excellent service through the appalling weather we have had recently. Much appreciated” 8 Memento Specially for carers... CARERS groups have welcomed a new Carer’s Credit which promises to protect state pension rights for more people. From April this year people caring for a total of 20 hours or more per week will be able to apply for Carer's Credit. It replaces the Home Responsibilities Protection (HRP) which was only given to those caring for 35 hours or more. It will also benefit carers who look after someone who refuses to claim disability benefits or who finds it extremely difficult because of their condition eg people with a mental illness. Carole Cochrane, chief executive of the Princess Royal Trust for Carers, said: “We are delighted that more carers will be able to build up full pension entitlements.” Spring 2010 Join the carers panel and have your say CARERS in Wiltshire are invited to take part in the Carer’s Voice project run by Wiltshire Council. The aim of Carer’s Voice is to enable a representative group of carers to share their views and experiences on services and issues, in order for agencies to improve their services. The panel includes men and women who care for adults and children with a range of caring needs. Some members are in paid employment, others care for someone all day every day, and the majority of those on the panel spend more than 40 hours a week on caring duties. The panel works by asking participants to fill in questionnaires about the services they receive. Sarah Pearce, new co-ordinator of the panel, is looking for more people to take part. To find out more contact Sarah on 01225 718315 or email her on [email protected] Book Review Still Alice by Lisa Genova WE HAVE three free bed and breakfast mini-breaks available for people with dementia and their carers. Several of our clients have already stayed at the bungalow (pictured above) overlooking the estuary in Topsham, Devon. Owner Sallie Rutledge, who has a great deal of experience in dementia care, provides three hours of care to give the carer a break, and can act as a guide to the area. There is a two-night stay available on April 20-22, and two more three night stays to be arranged later in the year. The breaks are funded by Wiltshire Council. If you would like to book a break, or for more information, call 01225 776481. This is the first book I have read with dementia as its theme, writes Bill Elliott. Alice is a 50-year-old professor of psychology at Harvard University when she starts to have memory lapses. Highly educated and successful, with a husband who is a biologist at Harvard Medical School, she is surrounded by friends who can contact eminent doctors and specialists for opinions and treatment. This environment allows Alice’s early onset Alzheimer’s to be recognized at an early stage. As the illness takes its terrible course we follow Alice’s initial confusion, her internal struggles to deny, deal with and finally accept the situation, as well as the effects on her family and on her hard-won career and personal status. Alice had the advantage of knowing the people and ways to get immediate help. This makes her story more poignant but contrasts with my personal experience of medical almost disinterest and lack of knowledge that can result in the loss of important time before diagnosis. What makes this book different, is that it is written from the point of view of the person with dementia. The reader is inside Alice’s mind, thinking her thoughts, yet with an awareness and detachment which allows us to see the mistakes and lapses she doesn’t. What she does see, heartbreakingly, is other people’s reaction to her condition. First-time author Lisa Genova has a PhD in neuro-science and her scientific knowledge underpins the book. Yet what really stays with you is the emotional journey which is conveyed subtly and effectively. I would recommend this book to all. It will have an added poignancy for those, like me, who care for someone with dementia. Still Alice is published by Simon And Schuster and is available in paperback at £8.99. We have a copy to borrow in our head off ice in Trowbridge Memento 9 Spring 2010 Carers groups launched in Trowbridge/BoA and Melksham A fledgling carers group is underway in the Trowbridge and Bradford on Avon area. The group has been set up by care co-ordinator Jackie Ransome to meet the needs of existing carers. It will meet on the same day as the wellestablished ex-carers group, so both groups can get together to share experiences and socialise. Jackie said: “The new group will have a speaker one month and a social occasion the next, and we will get together with the ex-carers from time to time as everyone knows each other.” The ex-carers group, which meets for lunch once a month, is now being co-ordinated by Chris White. Both groups meet on the first Wednesday of each month, and venues vary. A new group is also being set up in Melksham, as a spin-off from the training course for carers described below. Ex-course members will be invited to monthly events with speakers on alternate months. ‘Sharing experiences made us feel less alone’ Carer Bev Thompson attended Alzheimer’s Support’s recent Training Course for Carers at the Leigh Park Hotel in Bradford on Avon. Here she gives her verdict on the course CARING is the one job for which there is no formal training. So a training course for carers two hours a week for six weeks seemed a good way of finding out more about what has become my full-time job. At the first session consultant Dr Jill Emerson explained the different types of dementia and what to expect from each. She also answered questions about the methods of diagnosis and procedures used locally. On week 2 dementia consultant Elizabeth Bartlett gave useful tips on dealing with unusual behaviour. We all had our own examples! She stressed that people behaved differently according to their personalities and the type and extent of the dementia. As well as responding to individual queries her general advice included not to confront or criticise the person, to maintain eye contact, to keep calm, reduce demands and focus on positive behaviour and achievements. On week 3 solicitor Elizabeth Webbe explained some of the financial and legal aspects of caring, including powers of attorney and the importance of wording in wills. Earlier, Rhian Bennett from Wiltshire Council did her best to explain the complex world of carer’s entitlements, including carers assessments and direct payments. The following week clinical psychologist Paul Whitby showed us a relaxation exercise which had the required effect as we nearly fell asleep! He also explained the importance of keeping fit and well as a carer, keeping stress levels low and above all not trying to be perfect. Safer Moving and Assisting on week 5 turned out to be an unexpected highlight of the course. Trainer Chris Brownfield explained how to move people without injuring ourselves in the process. His humorous delivery made for an entertaining and informative afternoon. On Week 6 a longer meeting opened with Sue Hunt from Wiltshire Farm Foods who let us taste some sample menus. Next, Gill Frere-Smith, services manager of Alzheimer’s The Leigh Park Hotel Support, explained the many forms of support the organisation provides before the final speaker of the course, Jill Mitchener, of the Order of St John’s Trust care homes. She is leading a push to make the trust’s homes in Wiltshire more dementia-friendly, with innovations including a dementia conference for staff and outward bound holidays for residents with dementia. At the end of the course we were all presented with a certificate. None of us knew what to expect when we walked into the course on that first afternoon. But it was so welcoming. We all made some good friends and sharing information and experiences made us feel less alone. Due to high demand we are running another course from June 10 to July 15. For details please contact 01225 776481. Our Carers’ Training Courses are funded by Wiltshire Council. 10 Memento Help to come home from hospital HOME From Hospital is a pilot project set up by Ridgeway Care and Repair and Wiltshire Council. The aim is to stop people staying in hospital longer than they need to just because they haven't got the right care and support at home. Under the scheme, which is free, a hospital discharge caseworker liaises with patients and hospitals, including the Great Western Hospital in Swindon and the RUH in Bath, to make sure people have everything they need to return home. For instance, the worker will : ♦ Make sure homes are clean and safe to return to ♦ Stock up with basic food supplies ♦ Organise home heating and safety checks ♦ Organise home care to help with washing, dressing, housekeeping, shopping, collecting prescriptions etc ♦ Help with benefit claims or grant applications ♦ Organise minor home improvements and repairs, such as fitting Lifeline alarms, grab rails, level-access showers and stair lifts. Patients must be 60 or over, or 18 if they have a disability. For more information about the scheme or for a referral form, call Natalie Milburn on 01380 73 55 55. Spring 2010 Your chance to take part in clinical trials PEOPLE with Alzheimer’s disease in Wiltshire may be able to help research into the condition by joining local NHS research trials. The trials are being supported by the South West Dementia and Neurodegenerative Diseases Network, (DeNDroN) which is hosted by Avon and Wiltshire Mental Health Partnership and in turn supports research sites in the South West including Bath, Bristol, Devon, Gloucester, Swindon. The trials help to develop new treatments, or to build evidence about the safety and efficiency of existing treatments. Most involve checking the effects of a specific medication, but some look at other types of therapy or quality of life issues for people with a diagnosis and family members. Taking part in a research trial could involve a visit to a clinic or being visited at home, medical examinations, sometimes including a blood sample, and questionnaires for the individual and family members. It will always involve giving written consent which can be withdrawn at any time, although there are procedures in place so that individuals who cannot consent for themselves can still take part in a trial if it is of benefit to them. Trials that you may be able to contribute to include: DeNDRoN 037 Dependence in Alzheimer’s disease in England (DADE) A study of the impact of patient dependence on others on costs and caregiver burden. This trial involves one-off questionnaires. DeNDRoN 031 A year-long safety and efficacy study evaluating a medication called Dimebon in patients with mild-to-moderate Alzheimer’s disease on donepezil. DeNDRoN 038 A study to assess the usefulness of an injection called Flutemetamol for identifying subjects with Amnesic Mild Cognitive Impairment who will convert to probable Alzheimer's disease. For further information about any of the studies or general information about research contact: Kudzai Mugweni or Abi Wright on 01225 476430 or email [email protected] Telecare project ‘changes lives’ PEOPLE with dementia in Wiltshire have benefited from a Telecare pilot project which has been run by Selwood Housing (West Wiltshire) and Ridgeway Housing (Devizes) on behalf of Wiltshire Council. Telecare offers a wide range of sensors and hi-tech gadgets which allow people to live independently in their own homes. The equipment is fitted free of charge up to a total cost of £1,000, and most homes can be kitted out well within this budget. Nicky Kinge, who leads the project for Selwood Housing, told a dementia conference organised by Wiltshire Council that the scheme had transformed the lives of many people who were now able to remain living independently at home. To find out more about the Telecare project contact Nicky on 01225 715715. Memento 11 Spring 2010 Study shows dementia is still the ‘poor relation’ RESEARCH by the Alzheimer’s Research Trust shows that dementia is still the ‘poor relation’ to other conditions when it comes to spending on both treatment and research. According to the figures published in February, for every pound spent on research into dementia, £12 is spent investigating cancer and £3 on heart disease. It showed that while £590m (or £295 per patient) is spent on cancer research each year, just £50m (£61 per patient) is spent on dementia research. The report, which was prepared with experts from Oxford University, said that 822,000 people were suffering from the condition in the UK. That is 17 per cent more than previous estimates. It also estimated that the annual cost to the economy is around £23bn, much of that in social care costs and unpaid care costs. Rebecca Wood, chief executive of the Research Trust said: “The true impact of dementia has been ignored for too long. This report shows that dementia is the greatest medical challenge of the 21st century.” The report also revealed the diagnosis gap between the expected number of people with dementia and the numbers on GP registers. In England it is believed only 31 per cent of people with dementia have a diagnosis. National campaign to raise awareness CARERS in Wiltshire have welcomed a national media campaign to raise public awareness of dementia. The campaign by the Department of Health has included TV advertisements featuring people with dementia declaring: “I have dementia. I also have a life.” The campaign follows a MORI poll which found one in three people would avoid someone with the condition, and more than half said they did not know enough about dementia to help someone who has it. Anna Littlechild said: “The tone of this campaign is spot on. Dementia doesn’t discriminate and neither should we. “We would not wish to play down the difficulties of living with dementia. But many people with a diagnosis can still do so much and the more they are accepted and understood by others in society, the fuller their lives can be.” Carer Phyllis Filmore whose husband Maurice has vascular dementia, said raising awareness of dementia was long overdue. She said: “It is a good thing to educate people. We have not experienced any discrimination as such as Maurice comes across as a cheerful happy man who says hello to people, and it is not until you talk to him for a while that you start to realise there is something wrong.” Mr Filmore is a member at Sidmouth Club in Devizes. A former structural engineer who discovered a talent for art in retirement, he spends most of his time at the club painting. Mrs Filmore said: “It is something he loves to do and he is very proud of his work. It is an area that he can still achieve in and that gives him a real boost.” Online petition calls for national debate COMMUNITY Care magazine has launched an online petition calling for the issues surrounding dementia to be a major part of the General Election campaign. The Dementia Declaration reads: “We demand a full debate on the issue of dementia during the General Election campaign, recognising the increasing numbers of people with the disorder and the need to make improving their care an explicit priority when allocating resources in future.” If you would like to add your name to Community Care’s petition, go to www.ipetitions.com/petition/ dementia-declaration/ 12 Memento Spring 2010 Dates for your diary . ALZHEIMER CAFÉ WESTBURY second Thursday of each month from 7pm to 8.30pm at Fullingbridge Farm £20 for 20 Years Pledge Form Name ________________________________________ Address: ______________________________________ _______________________________________________ Telephone: ____________________________________ I pledge to raise £20 for Alzheimer’s Support in 2010 I will raise the money by: …………………………………………………………… …………………………………………………………… …………………………………………………………… Signed ________________________ Date __________________________ If you are a UK taxpayer, the value of your donation can be increased at no cost to you. This enables us to do more with your donation. Gift Aid mandate (please tick) This is to confirm that I wish Alzheimer’s Support to treat all donations I have made for the past six years as Gift Aid donations. I understand that I must pay an amount of income tax or capital gains tax reclaimed by the charity. Please return this form to Station Approach, Trowbridge, BA14 8HW May 13 Help for Carers with Mary Platten, Carers Support West Wiltshire June 10 A Financial Healthcheck with Hazel Brown, Wiltshire FAB Team July 8 The Future—what Research has to Offer with Prof Roy Jones, Director of RICE ALZHEIMER CAFÉ MARLBOROUGH first Monday of each month from 2pm to 3.30pm at the Castle and Ball May 10 Living Healthily with Lorraine Conduit, Memory Clinic Nurse June 7 Creating a Life Story, with Paul Batson, Drama Therapist AWP July 5 Assisted Living and Telecare with Gill Roberts of Ridgeway Housing FUNDRAISING EVENTS May 1 May Fair, Trowbridge May 3 May Fair, Devizes May 15 Bric a Brac sale, Devizes May 16 Channel Swim, Marlborough Leisure Pool May 22 Store Collection, Devizes Sainsbury’s June 12 Bric a brac sale, Devizes June 26 Summer Party Lockeridge village hall July 4 — 11 - Envelope Collection CARERS’ SUPPORT GROUPS (venues vary) Westbury/Warminster, fourth Friday of each month Devizes Melksham Carers Group, third Monday Kennet Carers Group, third Thursday Trowbridge/Bradford on Avon, first Wednesday Thank You to all our friends for grants and donations gratefully received Wiltshire Council, Wiltshire PCT, Royal Airforce Benevolent Fund, Henry Smith Charity, Rank Foundation, Dunhill Medical Trust, Sobell Foundation, Albert Hunt, Childwick Trust, Steele Charitable Trust, Westlon Trust, Devizes Town Council, The Friends of Warminster Hospital, Westbury and District Hospital League, Friends of Trowbridge Hospital, Community Foundation for Wiltshire and Swindon, Great Hinton Ladies Club, Kobler Trust, Co-operative Community Fund, Garfield Weston, Royal College of Nursing, Fulmer Charitable Trust, Bradford on Avon Town Council, Marlborough Town Council, Westbury Town Council, Devizes Town Council, One Stop Stores, Lions Club Devizes, Company Limited by Guarantee Mr & Mrs Ritchings, Mrs Dawson, Chris Pope (Scouts group), Trowbridge Town Council, Provincial Grand Lodge of Wiltshire, Moonraker Lodge Devizes, St Mary’s School Calne, Mrs Ewan Hilleary, Mrs Hilary Anderson, Joyce Rodgers (Wednesday Girls), Chris Stone, Mrs Anthea Blackford, Clive Burrows, Marlene Jones, Margaret Fitch, Stuart Brown, Mrs Hughes, Mr White, Miss Tucker, Daphne Ruddle, Housekeeping E Team at Center Parcs, Hilary Spellar, Gaiger Bros Ltd, Avon Valley Runners, Prince of Wales Dilton Marsh, Peggy Grey, Broade Forde Lodge, Mr Boult, Lions Club Melksham, Rowdeford School, Albatros Group Holdings Ltd, Susan Mortimer, Erlestoke Golf Club, Steeple Ashton Shop, Samantha Woolford. Registered in England No 3082546 Registered Charity No 1048314
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Park House, 1 Park Road, Trowbridge, Wiltshire, BA14 8AQ Tel: 01225 776481 E-mail: [email protected] Website: www.alzheimerswiltshire.org.uk Company Limited by Guarantee
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