Dementia in Scotland Winter 2017 – Issue 94

Prof. Craig Ritchie takes the reins at the Scottish Dementia Research Consortium 2 Dementia in Scotland

Contents

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The Little Art School Trust has gone from strength to strength since their big win at Scotland’s Dementia Awards 2016. p14 We wantFind out more about to how youkeep can stay in touch talking with us. to you The way we keep you informed about Alzheimer Scotland and dementia-related news is changing. If you want to continue to be a part of our life-changing work, you must give us your permission to keep in touch with you. Why we need your permission p12–13 In the past, you’ve joined us in making sure that nobody faces dementia alone. We need you to continue to stand with us. You’re an essential part of our network – whether you’re sharing news and information, supporting our awareness and policy campaigns or taking Balmore Ward at Leverndale Hospitalpart in fundraising activities. is one of 60 specialist dementiaYour support changes lives, and we’d love to keep you posted with our news, activities units in Scotland. and appeals. Why are you asking me to reconfirm my support? In spring 2018, the laws around how we contact you will change. We want to make sure our supporters have made a positive choice to hear from us. This means, in future, you’ll only hear about our vital work if you’ve chosen to. How we use your information Your details will only be used by Alzheimer Scotland – we will never give your information to other companies. You can also choose how you want to be contacted - whether by post, email, phone or text message. You are free to change your mind or unsubscribe at any time. p21 p4–5 Can we still talk to you? We partnered with the Lens for a ThisVisit September, www.alzscot.org/imin we launched Purple Alert, to whichgive helpsus your people permission with dementia one-of-a-kind competition. who have lost their way. Welcome Issue 94 – Winter 2017 3

Welcome!

Looking back on this year, we have Since then we have increased our we can no longer contact you to seen a variety of innovative ideas, engagement in research even further offer advice and support. For more unique fundraising events, and new and are thrilled to have links with some information on staying in touch, see policies, which have all worked of the top universities in Scotland. Find the information on page 14 or call towards improving the lives of people out about our engagement in research, our helpline. with dementia. I cannot thank you and how you can support this work, Finally, this Christmas we’re all enough for your help in making on pages 9–11. emphasising how important our 2017 such a success – whether you On pages 12–13 we visit Balmore Dementia Advisors are to people with were helping us ‘Challenge Dementia’ Ward at Leverndale Hospital – one of dementia, their families and carers. On in the New Year; hosting Tea and 60 specialist dementia care units in pages 26–27, we hear from Mandy Pool Blether events during Dementia Scotland. Although many people with about her role as Dementia Advisor in Awareness Week; or if you were one dementia can stay in their community Dumfries and talk to the people in the of our wonderful Memory Walkers throughout their illness, some people area who rely on her. We would really this September. may have more complex needs which appreciate any support which can help Alongside our Memory Walk series, require specialist care in a dedicated us continue to fund this vital work. this September we launched the Purple setting. The team at Balmore Ward are Once again, I would like to express Alert app for World Alzheimer’s Day. dedicated to improving the wellbeing my most heartfelt gratitude to everyone The app encourages users to join a of patients and helping them return who has contributed to making 2017 community that assists people with to a traditional care environment another great year. I hope you enjoy dementia if they lose their way. Find out when possible. reading about all more about the app, how to download If you take one thing away from of the fantastic it and how to make a profile for your this edition of Dementia in Scotland, it activities and loved one on pages 4–5. is to ensure that you continue giving achievements. In 2013, Alzheimer Scotland formed us permission to contact you. The the Scottish Dementia Research laws surrounding data protection are Consortium, in the hope of encouraging changing, which means you must let Henry Simmons, collaborative research between the us know that you still want to hear Chief Executive most talented researchers in Scotland. from us. Without expressed permission, Alzheimer Scotland

p24 p26–27 p29

Nobody should feel alone during We hear from Mandy Pool, Dementia The fantastic Kayla McGeorge the festive period. Our Helpline Advisor for Dumfries and Galloway, climbed Ben Nevis to raise money for is open 24/7. and the people who rely on her. Alzheimer Scotland. Purple Alert 4 Dementia in Scotland

Purple Alert Assisting communities to find people with dementia

By Nicola Cooper, Senior It turned out Hugh hadn’t gone How does Purple Alert work? Technology Coordinator far at first. He tells us: “I initially went into another shop but I wasn’t sure y find the app – search for ‘Purple Staying involved and independent if I’d missed Ann and she came out, Alert’ in Google Play or in the App within a community is very important didn’t see me and took the bus home. I Store on your smartphone or tablet for the wellbeing of people with decided to walk home because I didn’t y install the app – tap the ‘install’ dementia. However, this freedom have my bus pass or money on me.” button and the app will download. sometimes comes with risks. Bustling When they couldn’t find each other, Once complete, the Purple Alert icon high streets, shopping centres, parks both Ann and Hugh independently will appear on your home screen and street festivals can quickly become decided to return home. Thankfully, y create an account – read and agree to overwhelming for some people with they both made the same decision the terms and conditions of use. Enter dementia and they might want to get and were reunited after a very worrying your basic contact information and hit away from the high noise levels or couple of hours. However, the incident ‘sign up’. A confirmation email will be overcrowding. That’s why we launched left both Ann and Hugh shaken. Ann sent to the email address provided. the Purple Alert – a free app which explained: “Hugh was sick that whole Open this email and click the link to notifies members of the community night. He came down the stairs activate your account that a person with dementia has lost and said: ‘I should never have done y set up your profile – add some their way nearby. that, should I?’ and I said: ‘No, you profile information, including a We spoke to Ann and Hugh shouldn’t have.’” photo. Make sure your contact details from Pollok about their experience If they ever find themselves in similar are correct and up-to-date; these will of being separated in the busy circumstances again, Ann thinks that be essential for people getting in Silverburn shopping centre and how Purple Alert will reassure her that touch if they find the missing person the new Purple Alert app could have people are looking for Hugh and that y create a profile for the person with helped them. he will be found quickly. “It would have dementia – you will be prompted been terrific that day if we’d had Purple for information about the person Sitting side-by-side in their cosy living Alert because I wouldn’t have worried with dementia such as: a recent room, Hugh and Ann are a picture of as much. It’s a great thing – as long as photograph; physical description; happiness. Their 51-year-long marriage people sign up to it.” and examples of places of interest has been a close partnership – full of Ann is right. For Purple Alert to really to the person. You should fill this fun and family. Four years ago, Hugh make a difference, people need to information in as soon as possible was diagnosed with dementia but download the app. As more people sign so that the details can be called up they’re making sure it doesn’t stop them up, there will be more eyes and ears in the event that the person goes from getting on with life and doing the on the ground looking if someone with missing. You should also involve the things they enjoy. dementia goes missing. person with dementia throughout Hugh and Ann are an outgoing Karen Lau is another carer who the decision-making process. You pair who enjoy getting out and about. thinks Purple Alert will be a useful tool can find guidance on how to do this One day, they were visiting the local to help find people with dementia who at: www.dementiacircle.org/images/ shopping centre when they got are lost. Karen said: “When I was young PDFs/Purple_Alert_-guidelines_ separated. Ann explains: “We were in we lived in the tenements. You couldn’t for_consent.pdf Silverburn and Hugh for some reason go anywhere, or do anything without took the huff and said ‘Why am I in this someone knowing. Everyone looked out shop?’ and walked away. By the time I for each other. I think this app is the got downstairs to get him, I couldn’t find modern-day equivalent.” him and I thought ‘Where could he be?’” Alzheimer Scotland has developed Anyone who has been separated from this app with the help of people living a family member or friend in a shopping with dementia and their carers; Police centre will know how confusing the Scotland; and Health and Social Care experience can be. Should you stay put providers. To support people living with and hopefully spot them on their way dementia in your area, join the Purple past? Or should you search for them and Alert community and download the app risk missing each other in the process? for free today. Purple Alert Issue 94 – Winter 2017 5

How to send an alert Helping to look for a person

If you think the person you’re caring for When you have signed up, you will has lost their way, follow the guidelines receive a Purple Alert when anyone on confirming their absence and raising within 30 miles of your location is an alert with the police. Once these reported as ‘missing’. By tapping on the initial steps have been taken, you can ‘missing profile’, you can see details of send out a Purple Alert. the person with dementia. It’s simple to send the alert. Go If you join the search for this person, to the ‘person with dementia’ screen, you can ask questions and leave select their profile and change comments by tapping the ‘comment’ their status to ‘missing’. Add some button. You can also select ‘receive details about: updates’ to ensure you’re kept posted. If you think you have seen the person, yy when and where they were last seen scroll down the ‘missing person’ profile yy what they were wearing and tap ‘I have seen this person’. You yy any other information that will be asked the date, time and might be useful location of your sighting and there will be space for any other useful or This information will now be sent out relevant information. to everyone who uses the app within Be mindful that the person with a 30 mile radius of where the person dementia may not realise that they was last seen. are missing. If you decide to approach Once the person has been found, them, do your best to avoid creating make sure you update the Purple a stressful situation. If possible, we Alert community. In the ‘person with recommend phoning the carer and dementia’ screen, select their profile offering them the opportunity to speak and change their status to ‘found’. to the person and verify their identity. section 6 Little Art School Trust Dementia in Scotland

A year in the life of the Little Art School Trust

inning ‘Best Innovation in Continuing Care’ at Alzheimer WScotland’s Dementia Awards in 2016 was a huge accolade for the Little Art School Trust. Their work delivering ‘structured art classes’ demonstrates that, with the right kind of support for them, people with dementia can develop new skills and harness a sense of self and personal wellbeing. Since winning the award in 2016, the Trust has expanded into both East Ayrshire and East Renfrewshire while continuing to integrate itself into the local community in South Ayrshire. This has involved working with local dementia support groups, local authority Health & Social Care Partnerships and local Alzheimer Scotland services. Drawing Together These studio-based classes bring people living with dementia and their carers together with drawing from the photographs, the artists are and painting. Classes provide an delighted with their work ­­– all mounted opportunity for people to connect with and ready for display. one another and share an enriching The Trust’s belief in their work saw experience which is enjoyable and them seeking scientific validation and, encourages social interaction. in January 2017, the University of St Andrews began a pioneering study of Art in a Suitcase the unique structured lesson design. The findings are due to be published For this class, all art materials are later this year in the Journal of packed into a bright and shiny suitcase, Dementia Care, and initial indications and lessons are delivered in care are overwhelmingly positive. Susan homes and community settings. ‘Art Webb, Development Coordinator of the in a Suitcase’ has had a tremendous Trust comments: “These findings show impact. Participating care homes now the positive impact that we see time boast their own fabulous art galleries, and time again when people return which bring great pride to those living to our classes. Having this validation and working there and provide a will hopefully mean access to greater wonderful talking-point for visitors. funding opportunities and an ability to deliver the classes to even more The art classes allow participants people living with dementia.” Participants and their artwork to immerse themselves for an hour in drawing and painting. At the same time, cognition is stimulated More info through reinforced sequencing; For further information or to find out more about joining the Little Art School Trust classes, social interaction is encouraged; and please email Susan Webb at [email protected] wellbeing is nurtured. As you can see sectionNews Issue 94 – Winter 2017 7

Alzheimer vs. Alzheimer’s – What’s in an apostrophe?

By Nicole Nayar, Information Manager During his presentation, he described the value of Alzheimer’s discovery. a 51-year-old woman, Auguste Deter, Despite the unenthusiastic response There are several dementia whose case he had followed from from fellow scientists, Kraepelin named organisations worldwide, most of admission until her death. Deter had this particular collection of symptoms which have ‘Alzheimer’s’ or ‘dementia’ been admitted to hospital for paranoia, ‘Alzheimer’s disease’ and described rd in their title. However, here at sleep and memory disturbance, them as such in the 3 edition of his Alzheimer Scotland, we have dropped aggression, and confusion. Alzheimer text ‘Psychiatrie’ in 1910. was particularly fascinated by distinctive Nowadays, Alzheimer’s disease is the apostrophe and chosen to name plaques and neurofibrillary tangles diagnosed largely in the same way as ourselves after Mr Alzheimer himself. which he discovered in her brain. it was in the early 20th century. Alois Who was Alois Alzheimer? Alzheimer supported Deter throughout Alzheimer’s discovery paved the way for her stay in hospital, going the extra mile the diagnosis and, subsequently, the In November 1906, clinical psychiatrist, to ensure she could stay there as long treatment of Alzheimer’s disease. And Alois Alzheimer presented his landmark as possible. by losing the apostrophe in ‘Alzheimer discovery of ‘an unusual disease of Unfortunately, when he presented Scotland’, we pay tribute to the man, the human cortex’ at the 37th Meeting these findings to his peers, the rather than the disease. of South-West German Psychiatrists response was disappointing. But his in Tubingen. supervisor, Emil Kraepelin, recognised

Celebrating the life of a beloved founding member and 25th anniversary

Bob Robertson, founding member of to volunteer his time to help with the Falkirk branch sadly passed away collections and branch events and on 11 July 2017. Bob was 93 years old never, ever, missed a branch meeting. and died in his sleep at home. He was a true gentleman and will be much missed.” Bob began his voluntary career at Alzheimer Scotland when he joined the Falkirk branch in 1992 at its launch “He was a true gentleman meeting. He was an active member until his passing this year. He initially and will be much missed.” joined because of his keen interest in raising awareness and supporting This year, the Falkirk branch individuals with dementia. He went is celebrating its 25th anniversary. on to run a dementia-friendly club During this time, and with the help at his local church, Grahamston of dedicated members like Bob United, in Falkirk. Robertson, the branch has supported a More info Bob is remembered fondly by other number of people living with dementia; members of the branch. Fay Godfrey, campaigned for their rights; and worked For more information on the Falkirk the Service Manager in Falkirk, paid with the Falkirk service in their day-to- branch, or services in your local area, visit www.alzscot.org tribute: “He was always the first person day activities.

We want to stay in touch! Data protection law is changing and we need your permission to keep the conversation going. See page  for more details. section 8 Around the world Dementia in Scotland

Dementia restaurant in Tokyo serves up joy and laughter

This September, to mark World Alzheimer’s Month, a very special pop-up restaurant opened its doors in Tokyo. ‘The Restaurant of Order Mistakes’ was a huge success and welcomed more than 300 guests over 3 days. So what made this sold-out diner stand out from the crowd? The waiting staff was made up entirely of people with dementia. Mr Shiro Oguni, a television producer in Tokyo, came up with the concept because he wanted to increase awareness of dementia and challenge misconceptions about the condition. The waiting staff was made up restaurant, had a great experience Speaking to Kyodo News, Mr Oguni of 17 people with dementia who and said he especially enjoyed talking explained: “The diner shows that worked on rotation. When asked about to a waitress who briefly forgot her there is so much more to living with volunteering in the restaurant, 82-year- role and sat down across from him to dementia than the stereotype that old Ms Hideko Maruyama said: “The have a chat. it is scary, worrisome and dangerous. whole experience was great fun.” The pop-up restaurant might have The feedback I often hear from And it wasn’t just the waiting been short-lived, but it has made a diners is very positive – ‘cute’, ‘funny’, staff who benefited from this unique lasting impression. ‘The Restaurant ‘happy to be there,’ and ‘comfortable.’ restaurant. Customers were curious to of Order Mistakes’ has changed Dementia is an extremely grave find out more about dementia directly preconceptions about dementia for issue so it is reassuring to hear such from people living with the condition. many people, and its legacy will live on positive comments.” Makoto Ichikawa, a customer at the for a while to come.

New study set to strengthen responses to dementia in developing countries

The London School of Economics and Political Science (LSE) is ready STRiDE aims to: to launch an incredible £7.9 million project which will increase research yy improve dementia care, treatment, yy ensure that family members and capacity and provide much-needed and support in seven countries other carers do not face excessive evidence regarding dementia including India, Indonesia, Kenya, costs which could put financial care in seven low- and middle- Mexico and South Africa strain on them or compromise income countries. yy strengthen the capacity of those their health The number of people living with countries to develop and sustain yy understand the impact of dementia across the world is growing effective care dementia in various cultural, social rapidly. In order to combat global yy provide direct support for people and economic contexts issues, the LSE is launching STRiDE – with dementia and their families yy support development, financing, Strengthening responses to dementia yy examine current practice planning, implementation in developing countries. at a national level and for and evaluation of National Funding has been awarded by the individual families Dementia Plans Research Council UK (RCUK) through its Global Research Challenges Fund. This The research will be conducted in fund aims to ensure that research in partnership with the Universities of More info the UK takes a leading role in Sussex and Cape Town, Alzheimer’s addressing challenges faced by Disease International and Dementia Find out more at www.stride-dementia.org developing countries. Alliance International. Researchsection Issue 94 – Winter 2017 9

Care today, cure tomorrow An insight into ongoing research supported by Alzheimer Scotland

lzheimer Scotland has a history dementia researchers across a range of of engaging with research, from disciplines and promote collaborative Ahosting events to funding clinical research in Scotland. studies. Through this research, we This autumn, the SDRC appointed aim to: identify causes; search for a Craig Ritchie as their new Chairperson, potential cure; discover ways to prevent and said a heartfelt goodbye and a or delay the illness; and support people massive thank you to Emma Reynish, living with dementia today. who had previously held the position. We work hand-in-hand with Prof. Ritchie is currently Director of researchers in several ways. We invest the Centre for Dementia Prevention Prof. Craig Ritchie in research; form partnerships with at the University of Edinburgh. He academic institutions; and encourage has over 20 years of experience with Dementia (EPAD) project. EPAD is the and facilitate collaboration in clinical trials, looking at new treatments largest global study to develop a much research. Some of the ways we do for dementia, and improving our clearer understanding of Alzheimer’s this is through the Scottish Dementia understanding of disease progression Disease in its preclinical phase. It Research Consortium, our two Research in the years before the symptoms of does so by informing the embedded Centres and our schedule of events dementia emerge. This expertise has clinical trial of numerous interventions throughout the year. culminated in his leadership of the for the secondary prevention of PREVENT Dementia Program. PREVENT Alzheimer’s dementia. Scottish Dementia will recruit 700 people, aged between Research Consortium 40 and 59, from across the UK and follow them closely using detailed More info In 2013, Alzheimer Scotland launched clinical and biological assessments. For more information on the SDRC visit the Scottish Dementia Research In addition, Craig also leads the scottishdementiaresearchconsortium.org Consortium (SDRC) to bring together European Prevention of Alzheimer’s Policy and practice

The Alzheimer Scotland Centre for Policy and Practice at the University of the West of Scotland (UWS) provides a high-quality environment for applied research, education and enterprise to take place. It has been named a Centre of Excellence because of the role it plays in advancing dementia policy and practice through education and applied research in Scotland and beyond. The Centre is led by Prof. Debbie Tolson alongside a team of researchers and it supports a number of PhD students. The Dementia Champions Prof. Debbie Tolson programme – a key part of the Scottish Government’s National Dementia Strategy – is led by the Centre in It forms a major part of the Centre’s the practical skills they need to care partnership with NES Education national workforce development. for and support people with dementia. for Scotland. By creating Dementia Dementia care is an integral feature Champions, this programme can of the University’s nursing courses improve the quality of care provided for where every aspect of the students’ people with dementia and their carers. training is career-focused. They learn

CONTENTS

WhaT iS a GradE POiNT avEraGE (GPa)? 1 Why iS UWS iNTrOdUCiNG GPa? 1 iS GPa rEPlaCiNG ThE dEGrEE ClaSSifiCaTiON SySTEm? 2 hOW Will my GPa bE WOrkEd OUT? 2 CaN yOU TEll mE mOrE abOUT hOW GPa iS CalCUlaTEd? 2 Will all STUdENTS STarT GETTiNG GPas STraiGhT aWay? 3 Will my GPa affECT my dEGrEE ClaSSifiCaTiON? 3 Will my firST yEar (lEvEl 7) mOdUlES COUNT TOWardS ThE GPa? 3 arE SOmE mOdUlES GivEN mOrE WEiGhT iN ThE GPa? 3 Will failEd mOdUlES COUNT TOWardS my GPa? 4 Will aNy mOdUlES bE ExClUdEd frOm ThE GPa CalCUlaTiON? 4 WhErE CaN i SEE my GPa? 4 dO i NEEd TO aChiEvE a CErTaiN GPa iN OrdEr TO PrOGrESS WiThiN my PrOGrammE Or TO GradUaTE? 5 WhO ShOUld i SPEak TO if i havE mOrE qUESTiONS abOUT my GPa? 5

GRADE POINT AVERAGE AT UWS: INFORMATION FOR STUDENTS Researchsection 10 Dementia in Scotland

Alzheimer Scotland Dementia Research Centre and the brain tissue bank In partnership with the University of Scientific research into Edinburgh, the Alzheimer Scotland dementia – making a Dementia Research Centre provides difference in the future a high-quality research environment for investigations into the causes and A variety of scientific research treatment of dementia, and into care investigations are currently provided by relatives and friends. The being conducted to improve our facility is led by its Director, Prof. John understanding of what causes Starr, and Co-Director, Dr Tom Russ dementia and what links symptoms and aims to commission and build a and changes in the brain. Scientific balanced portfolio of scientific and research also looks at developing clinical research, and develop and methods for detecting very early signs maintain a dementia brain tissue bank. of dementia. This could help us find a way to stop the illness progressing further, reverse its damage to the brain, and could possibly even prevent it altogether.

Brain tissue bank

Much of our current understanding of Alzheimer’s disease, other types of dementia, and advances in treatment Prof. John Starr Dr Tom Russ have come through the analysis of brain tissue generously donated by Clinical research into individuals and their families. Brain dementia – making a tissue donation is an incredibly valuable source for finding better difference now treatments for the diseases which Clinical research tests the effectiveness cause dementia, such as Alzheimer’s of a variety of treatments designed disease. Until recently, however, to improve the lives of people Scotland has had few facilities to with dementia and slow down the carry out this research. The Scottish progression of the illness. There is Dementia brain tissue bank, based currently a very limited range of drugs at the Alzheimer Scotland Dementia available to people with dementia Research Centre, can process brain and not everyone benefits from them. tissue donations from people with Finding new treatments would have a dementia, which will assist research major impact on the quality of life of now and in the future. those affected by dementia. More info

To find out more about brain tissue “Finding new treatments would have a major impact donation, please call our Dementia Helpline on 0808 808 3000 or visit on the quality of life of those affected by dementia.” www.alzscotdrc.ed.ac.uk

We want to stay in touch! Data protection law is changing and we need your permission to keep the conversation going. See page  for more details. Researchsection Issue 94 – Winter 2017 11

Don’t miss our Christmas lecture!

t Alzheimer they have developed innovative Scotland, optical technology which allows the What? we run a manipulation and imaging of cells of A Alzheimer Scotland number of events the nervous system. This technology throughout overcomes the inherent problems and annual Christmas lecture the year. This complexities associated with working When? Christmas we have with these types of cell. invited Professor Prof. Gunn-Moore is currently 4pm–6pm, Frank Gunn-Moore Prof. Gunn-Moore the Deputy Director of the Scottish Thursday 14 December 2017 from the University Universities Life Sciences Alliance, Where? of St Andrews to give our Christmas which has helped secure funding lecture. This year’s theme will be ‘Why for a variety of projects, including The Hub, Edinburgh is it that only humans get dementia?’. the European Lead Factory and the Prof. Gunn-Moore’s research group National Phenotypic Screening Centre. disease and dementia. He’ll ask, ‘What at the University of St Andrews He also established – and initially have we got right?’, and give the has made several major discoveries chaired – the Alzheimer’s Research audience the chance to pose their regarding the early stages of UK network for Scotland, and the own questions. Alzheimer’s disease. The research Biophotonics Theme for the Stanford– Attendees will have the opportunity group has identified potential Scottish Universities Partnership. to network with colleagues after the therapeutic targets and pioneered new He currently sits on the Alzheimer’s lecture whilst enjoying festive nibbles. models for treating the early stages Society funding board, and has sat on of this disease. Using both molecular boards for funding agencies such as and novel biophysical techniques, the BBSRC and EPSRC. they have also discovered new In this year’s Christmas lecture, More info signalling pathways that are involved Prof. Frank Gunn-Moore will explore For more information, and to book your in the growth and development of new ideas and approaches for trying tickets, visit www.alzscot.org/xmas_lecture mammalian neurons. In addition, to understand and treat Alzheimer’s

Tartan online

All of the money raised from the sales of our beautiful tartan products goes towards funding vital research in Scotland. The tartan is available to buy from www.tartanonline.com. Specialistsection dementia units 12 Dementia in Scotland

Improving practice in specialist dementia units

By Kirsty Yanik, to severe and persistent stress and Communications Manager distress, as well as behaviour requiring “It’s a real privilege specialist input that cannot be provided almore Ward is one of sixty in most care settings, even if additional working with these specialist dementia care units support is provided. People with guys – the patients and Bin Scotland. A small number dementia who require specialist care of these units – including Balmore are often under 65, are still physically the team. This work Ward – are Specialist Dementia Unit active, and may have other acute Demonstrator sites, which work with mental health conditions or physical means more to me than Focus on Dementia to develop and roll health care needs. I can really explain.” out improved practice. Christine Murphy, Services Manager With access to appropriate care for Older People and Primary Care at and support, the majority of people Glasgow City Health and Social Care care from medical staff, patients have with dementia can live and be cared Partnership (South Locality), explains access to physiotherapy, psychological for within the community. However, that the decision to admit a patient support, occupational therapy, a small percentage of people with to Balmore Ward is not made lightly. dietetic support, and speech and dementia will have, at any given time, “When people first come to Balmore, it language therapy. more complex needs which require can often be a very stressful time. It’s As of early 2017, patients at specialist care in a dedicated setting. common for patients to come to us as Balmore Ward now have access to These needs are most commonly linked emergency admissions from their own their own private, specially-landscaped home or another care setting.” garden. Christine described how Balmore may be seen as the last invaluable this resource has been. “It “It means a lot to us to opportunity to provide appropriate took three and a half years and a lot of be able to make someone care for some of the most vulnerable funding to give Balmore Ward a garden. people with dementia. However, the But the happiness of the patients who more content and relaxed, multi-disciplinary ward team see it are able to go outside safely and enjoy very much as one of the many steps the sunshine is absolutely priceless.” and it means a lot to on a journey to improved wellbeing Ultimately, the aim of Balmore Ward their families too.” – one where the Balmore staff can is to support patients, their partners make a huge difference. In addition to and their families so that the person Specialist dementiasection units Issue 94 – Winter 2017 13

with dementia can move on to a more traditional care setting. The team is trained to respond to and manage high-risk or challenging situations and take time to understand the triggers which may lie behind difficult behaviours. Another special feature of Balmore is that family members and friends are encouraged to visit throughout the day. Regular visits allow loved ones and care staff to build meaningful relationships, which in turn enhance everyone’s understanding of a patient’s unique needs. Delivering care to patients with challenging needs is neither straightforward nor easy but by Balmore. Not everybody likes this sort de-escalating stressful situations, the of work; some days can be tough and team can often avoid confrontations not everyone can cope. But the staff and help patients progress in their care. who stay are dedicated to what we do Jane Owen, one of the two Charge and work well together as a team. It’d Nurses at Balmore Ward, gets her be great for more nursing students greatest sense of satisfaction from to think about going into specialist seeing patients progress. “A lot of our dementia care.” patients are here for between three and six months. That means you get to know them a lot more than in your “The happiness of the usual hospital ward. Someone can patients who are able arrive in really upsetting circumstances, but by getting to know them and to go outside safely and finding out what matters to them – what makes them happy or sad or enjoy the sunshine is content or angry – we can make a big absolutely priceless.” difference here. It means a lot to us to be able to make someone more content and relaxed, and it means a lot to their families too.” Charge Nurse Hazel Stevenson agrees with this sentiment. “I enjoy working here. I feel we’re able to empower our patients and their carers and give them support and understanding from the perspective of being dementia-trained and focused. “I’ve been on rotation in other wards, but I always want to come back to

We want to stay in touch! Data protection law is changing and we need your permission to keep the conversation going. See page  for more details. section 14 Dementia in Scotland

Sorry, we can’t talk to you!

….Unless you give us your permission.

In spring 2018, the laws around how we contact you will change.

You’re a big part of what we do and we’d love to keep talking to you about Alzheimer Scotland and dementia-related news.

If you want to continue to be a part of our life-changing work, you must give us your permission to keep in touch with you.

Let’s keep talking!

Visit www.alzscot.org/talk to give us your permission Reviewssection Issue 94 – Winter 2017 15

‘Intellectual Disabilities and Dementia’ by Karen Watchman

By Laura emphasises that everyone has the right another care setting. People with Finnan-Cowan, to a good life and the right support – learning disabilities and their families Self-Directed whether they have dementia or not. need access to resources like this book Support Manager This perspective is hugely important to arm them with vital information. The for families who are often more used more information people have, the Intellectual to hearing about the deficits and less likely they are to feel uncertain or Disabilities and disadvantages of their family member. anxious about what lies ahead. Dementia by I think books like this and the Reading this book is also a good Karen Watchman information they contain are crucial. launch-pad for families to start having is a reassuring Important health and social care difficult conversations and to plan for and supportive needs can often be overlooked when their future together. Not only is the guide for family members of adults someone with a learning disability is information about dementia useful, the with learning disabilities, who are being supported at home or within details about other prevalent conditions beginning to consider what a diagnosis for older people with learning disabilities of dementia might mean for them. The are also eye-opening. book is well-balanced and includes “People with learning It is essential that we raise awareness important medical facts where necessary, disabilities and their of the potential links between dementia without being too overwhelming. and learning disabilities so that people This book takes a positive stance families need access to and their families get the information on the lives of people with learning resources like this book.” and support they need. This book is an disabilities and their rights. It excellent example of how to do this.

‘The Dementia Whisperer: Scenes from the Frontline of Caring’ by Agnes B. Juhasz

By Nicole Nayar, 90s who had a diagnosis of dementia. Information Agnes cared for the woman for four “Her unfaltering honesty Manager years and writes about this time in a clear and engaging way. She reflects on about being a live-in In The Dementia her own experiences; is honest about Whisperer, Agnes the frustrations of caring for a person carer will resonate B. Juhasz discusses with dementia; and offers practical with many people in life as a live-in carer advice for fellow carers. for people with Her unfaltering honesty about the same situation.” dementia. Agnes the highs and lows of being a live-in was originally carer will resonate with many people a journalist in her native Hungary in the same situation. It shows that More info before she went on to study nursing in caring can be incredibly rewarding Australia. She now provides specialist, despite the difficulties you may Have you read a great dementia-related one-to-one homecare for people with experience. Overall, the book is a book recently? Would you like to share dementia in the UK. great resource for anyone affected by your thoughts with our readers? Email [email protected] for more information on The book describes Agnes’ dementia and emphasises the true how to become a guest reviewer. experience of caring for a woman in her resilience of carers.

We want to stay in touch! Data protection law is changing and we need your permission to keep the conversation going. See page  for more details. Localsection engagement 16 Dementia in Scotland

National strategy, local action

By Amy Dalrymple, Head of Policy of the previous two strategies, the reality is that the gap between policy “Alzheimer Scotland is The Scottish Government launched and people’s experience remains too their 3rd National Dementia Strategy wide. For example, the need for quality dedicated to making on 28 June 2017. Here’s how post-diagnostic support has featured the voices of people Alzheimer Scotland is using it to in all three strategies since 2010. Yet campaign for change… many people diagnosed with dementia with dementia and are still waiting too long for their post- The 3rd National Dementia Strategy diagnostic support and don’t get the their carers heard.” outlines 21 commitments to help quality of service they should. In some provide better support and services scenarios, people don’t get any post- people with dementia and carers need for people with dementia and diagnostic support at all. across Scotland. their carers and to continue taking Scotland’s 31 Health and Social Local engagement events are now research forward. All of Alzheimer Care partnerships, each overseen rolling out across Scotland, increasing Scotland’s key priorities regarding post- by an Integrated Joint Board, are the volume and empowering the diagnostic support, integrated care in responsible for delivering most of this voices that Alzheimer Scotland hears the community, advanced dementia, new national strategy. The strategy was every day. We’ll make sure that local dementia-friendly communities and a collaborative effort – developed by decision-makers listen, and we’ll care in hospitals are included in the professionals, people with dementia, take it to the Government and to the strategy. And we are glad that the carers and campaigners acting at a organisations who support the delivery Scottish Government agree with local level. It has been translated into of dementia policies. We’ll work as hard us on these. a national document and is now back as we can to narrow that gap between in the hands of local partnerships, who policy and delivery, and advocate will put the plans into action. the views and needs of people with “We’ll make sure that local Alzheimer Scotland is dedicated dementia and their carers. to making the voices of people with decision-makers listen.” dementia and their carers heard. We’re now using the national strategy More info However, it’s important to bear in and our extensive experience as a mind that this is the third national basis to campaign for better support, For more information on the strategy go to: www.alzscot.org/campaigning/ strategy in Scotland. While there has improved care, proper investment, and national_dementia_strategy been progress made over the lifespan true partnership in delivering what Local engagementsection Issue 94 – Winter 2017 17

Developing local campaigns: West Dunbartonshire

By Fiona Kane, Dementia Advisor Health Professionals. One man, who was diagnosed with dementia after Our first local engagement event a stroke which affected his mobility, took place in West Dunbartonshire on described his loss of confidence in Thursday 31 August. Alzheimer Scotland carrying out simple tasks such as staff, including the Director for Policy making a cup of tea. An Occupational and Research, Jim Pearson, were joined Therapist worked with him to help by people with dementia and carers him regain his confidence in the to discuss the 3rd National Dementia kitchen and a physiotherapist helped Strategy. This was a chance for them to him improve his mobility. As part of have their voices heard on issues that his post-diagnostic support, he was affect them in their local community. introduced to other people with they felt that they should be given To kick off the meeting, Jim dementia in a group setting and is information at the time of diagnosis presented the group with a now involved in a variety of activities which tells them what to expect, when comprehensive overview of the strategy. such as the community choir and a to expect it and who to contact in He highlighted the importance of dementia-friendly community project. the meantime. In terms of care needs involving people with dementia and The overall message from the event assessments, self-directed support is carers in the development of local was that early diagnosis and post- something which many carers want to policies to ensure that the services and diagnostic support have helped people know more about. This was identified support meet their needs. with dementia come to terms with their as an area for improvement as many Participants were then invited to diagnosis and maintain their place carers who have been involved in care engage in round-table discussions within the community. The peer- needs assessments were never offered within facilitated groups, giving support aspect of post-diagnostic this option. everyone the opportunity to express support has really helped them feel Everyone agreed that having a single their ideas and concerns. The that they are not only helping point of contact to provide support and main themes for discussion were: themselves but also supporting co-ordination throughout the dementia post-diagnostic support; ongoing each other. journey, from diagnosis onwards, would support for people with dementia help reduce stress and avoid crisis and carers; hospital care; power of situations, which many of those present attorney; welfare rights; and self- “The overall message was had experienced. directed support. that early diagnosis and Overall the event was well-attended One participant commented that and enjoyed by those who got involved. her family ‘wrapped her in cotton post-diagnostic support One man who attended emailed the wool’ as soon as she was diagnosed Dementia Advisor to say: ‘I thought and she no longer felt like she had have helped people with the meeting last night was one of the control over her own life. Through dementia come to terms best yet, as both my wife and myself post-diagnostic support, her family enjoyed it immensely’ have gained a better understanding of with their diagnosis.” Information from this engagement dementia and she now feels listened meeting will be collated and the staff to, has regained her independence and Carers also felt disappointed in West Dunbartonshire will invite feels much more able to do the things about their experience of post- members of the local integrated that are important to her. She is now a diagnostic support. Many people caring joint board to meet with people with member of a community choir and part for someone with dementia were dementia and carers to discuss ways in of an involvement group for people not offered support at the point of which they can address their priorities. with dementia. Most importantly, she diagnosis. And carers who were given can continue doing the activities information about support said they she enjoyed before her diagnosis, experienced a period of uncertainty More info such as helping to clean the local following diagnosis. Whilst people church every week. understood that there is a waiting If you want to get involved, email [email protected] and we’ll put you People with dementia also period between receiving a diagnosis in touch with your local organisers. commented on the work of Allied and starting post-diagnostic support, sectionSDWG 18 Dementia in Scotland

My experience as a campaigner Two Alzheimer Scotland activists share their stories

Richard Fairbairns, Scottish Dementia Working Group Richard Fairbairns is 74 and lives on meeting, Richard also met committee the Isle of Mull. He joined the Scottish members, Henry and Peter, who were Dementia Working Group (SDWG) able to share their experiences of in early 2015, shortly after he was the group. “The staff encouraged me diagnosed with dementia. He became a enormously. In those days after my Committee Member at the end of 2016. post-diagnostic support I really needed Since joining he has been involved in that encouragement and everyone was a number of SDWG projects, including very good at that.” working with Occupational Therapy Richard was first attracted to SDWG Interns on a photography project, because of the opportunity to help and feeding into the development of other people in the same situation as Scotland’s third National Dementia him. “It’s very important to meet other Strategy (page 16). In addition to his work people with the same experiences. Any Richard keeps in touch with SDWG members with SDWG, Richard previously worked way that I can help them and discuss and staff using Skype and other technology as a skipper and he still enjoys sailing as the important issues helps us all. It well as bee-keeping. reminds you that there are so many Although he enjoys island life on Richard was originally referred to good people out there.” Mull, Richard is aware that being so far the SDWG by his health link worker, away from where a lot of events and who suggested he research the group. group meetings take place can be very “I got involved with the group in 2015, “Richard enjoys island isolating. However, he has made great not long after I was diagnosed. After life on Mull but it can use of technology this year, joining being advised to check out the website meetings remotely by Skype or phone and find out more, I met with (National be very isolating.” and using email to keep in touch with Development Officer) Fiona Gordon the group and staff. “Everything takes a during a visit to Stirling”. During this “One of the things I have been lot more organisation” he explains. “But involved in recently was working with it is worth it; for instance we have been About SDWG the Occupational Therapy Interns this arranging for a member of staff to come summer, which was excellent,” Richard and meet me in Oban which I’m really The SDWG has a wide membership notes. For this project, interns work with looking forward to.” who participate and campaign in a group members to photograph their day- As part of the group, Richard variety of ways. We are involved in to-day activities in order to challenge the is a committed and successful many projects and pieces of work at stereotype that people with dementia campaigner on behalf of people any one time, such as: no longer live ordinary lives. “It was with dementia. Ultimately, he says, great to work with future professionals his biggest motivation is to keep on ›› presenting at national and who were so understanding and very challenging the stigma that still exists international conferences knowledgeable about dementia.” around dementia. ›› producing and reviewing resources for people with dementia and professionals ›› being involved in teaching and training for the future dementia workforce ›› meeting with and lobbying relevant politicians around particular issues ›› participating in external working groups and committees around a variety of dementia- related issues The Isle of Mull NDCANsectionNews Issue 94 – Winter 2017 19

Myra Lamont, National Dementia Carers Action Network

Many dementia carers, like me, have Scotland. We discussed early-onset turned to activism because of the dementia, and he invited me to join challenges associated with dementia the National Dementia Carers Action care. We all have our own experiences Network (NDCAN). and each of us has a story to tell. As carers for people with dementia, we know our rights and the rights of the “I have been an active people we care for; but sometimes NDCAN member through knowledge is not enough. That’s why we become activists. We need to have two national dementia our voices heard and we want to make strategies and now the a difference in the lives of people with dementia and their carers. start of a third.” I cared for my late husband Archie, who had a rare form of semantic My first meeting at NDCAN was I have been an active NDCAN dementia. His determination to live inspiring. It gave me the chance to member through two national with this devastating condition gave meet a wonderful group of like-minded dementia strategies and now the start me – and continues to give me – the people, who had different experiences of a third. Although we have seen strength and drive to campaign to get but were just as passionate about improvement, there is a lot of work still rarer dementias recognised and get the change as I was. to do. Strategists and policy-makers support he deserved. To be an activist, you must have need to hear new voices of active I started this campaign on my own, passion, real-life experience, and carers and ask themselves if existing using contacts I had from my long and the drive to make your voice heard. strategies have made a difference. successful nursing career in Glasgow, Campaigning alongside your role Are people with dementia and carers which had ended abruptly following as a carer can be difficult but the better supported? What’s changed? Archie’s diagnosis. On a chance meeting challenges you face give you the And most importantly, what still at a conference, I spoke to Henry motivation to keep campaigning for needs to change? Simmons, Chief Executive of Alzheimer improvement. As we approach the second Personally, in my campaigning role, anniversary of my late husband’s About NDCAN I feel I have made a positive change in passing, I take time to think of about many different ways: raising awareness what’s important in my life – is it Members of NDCAN carry out of rarer dementias; combating remote still campaigning? I don’t have that a number of important tasks. and rural issues; and shaping the answer yet, but I like to think that my This includes: network by taking a leadership role. campaigns have made a positive change Have I done enough? I’m not sure. Did it in the lives of people with dementia ›› developing training resources make me feel better? Yes! and carers across Scotland. for health and social care professionals ›› speaking at national and international conferences ›› meeting with Scottish Government Ministers ›› responding to the Scottish Government’s consultation on carers legislation ›› helping to develop and implement Scotland’s National Dementia Strategies A busy NDCAN steering group meeting Call-blockingsection technology 20 Dementia in Scotland

Blocking scam callers

By Laura Jamieson, Policy and devices are easy-to-use and have been person. In some Improvement Manager at COSLA found to block over 95% of nuisance cases, people and scam calls. have lost In August 2015, a Unwanted calls present a potential thousands of study by Trading danger to elderly and vulnerable pounds to these Standards people as they can greatly increase con artists. By Scotland (TSS) the risk of financial harm. Scam preventing found that calls offering lucrative returns on nuisance calls and reducing the fake investments, including fine wine number of doorstep criminals showing older and more and precious jewels, are designed up at a person’s house, this technology vulnerable to deceive people into parting with has the potential to reduce fear of people in Scotland received around large sums of cash – with no intention crime and the fear that someone is 60 nuisance and scam calls per of ever rewarding the ‘investor’ at watching their home, which can be month – this equates to more than a later date. intensified if a cold call is followed up half of all calls they receive. Doorstep criminals are also with a visit. beginning to move into cold calling People involved in the study, TSS has received funding from the before turning up at someone’s home. their families and their professional Scottish Government to provide older Call-blocking technology can help stop carers reported that call-blocking and vulnerable people across Scotland the initial call from getting through, technology can help people live with call-blocking devices. These which could prevent a follow-up visit in independently for longer.

“People involved in the study, their families and their professional carers reported that call-blocking technology can help people live independently for longer.” News Issue 94 – Winter 2017 21

Changing perspectives – the Lens programme

By Jan Beattie, Deputy Director of chance to win a share of a £20,000 immediately began using in my role, Workforce Development investment (with financial support from and it has been the same for every the Scottish Government) to bring their workshop. I have taken what I have In·tra·pre·neur·ship (n) 1) Successful concept to life. learned from the project and put it adaptation of entrepreneurial In June 2017, a shortlisted group to good use in my work. It has also attitudes and strategies inside of intrapreneurs were invited to been exciting to see our ideas grow of a bureaucratic organisation. Alzheimer Scotland’s offices to pitch and develop, and I can’t wait to see 2) Implementation of start-up their initiatives and compete for funding. everyone’s project up and running and Their ideas ranged from: using virtual the difference they will make to the practices within a large organisation, reality to support people with dementia people we support.’ producing valued innovation. and their carers; to ‘Beer with Buddies’, ‘The Lens has been the best The Lens programme is a unique a proposition to transform a room opportunity for professional partnership between charities, grant in our Dementia Resource Centre in development I have ever had! The makers, businesses and the Scottish Paisley into a traditional (alcohol-free) learning from workshops, the delivery of Government. As its name suggests, the pub setting. these and the impact they have had on Lens is designed to change perspectives The programme has received me both personally and professionally and encourage people to see things great feedback, and the quality and has been enormous.’ differently. It aims to: creativity of the proposals submitted ‘Lens was completely different from was inspiring. But the real value anything I had previously experienced. yy create a culture of intrapreneurship of participating in the Lens is best The series of workshops helped us and innovation described by participants themselves: hone our ideas; look at them critically; yy help people develop their ‘The Lens was so much more than and focus on their core strengths. ideas and skills I expected! The workshops were This really helped us understand yy integrate investment, competition extremely educational as well as and refine our pitches. Don’t worry and coaching enjoyable. The camaraderie between all about not having a polished, finished yy deliver greater impact across of the contestants was so encouraging application; that’s what the Lens communities through sustainable, and supportive; I wanted everyone to process does. Submit your idea and personalised services win with their idea. I’m very excited to take it from there.’ see how the winners are progressing. Alzheimer Scotland recently partnered For anyone thinking of doing it next with the Lens programme and asked year I’d say: don’t think, just do!’ More info staff to enter a competition to ‘I not only enjoyed the Lens project, I make their ideas a reality. A number feel as though I have really benefited For more information about the Lens projects, and our fabulous winners, get in of people applied and submitted from it as well. There were techniques touch at [email protected] countless fantastic ideas for the from the very first workshop which I

Panel of judges The lucky winners Relativesection values 22 Dementia in Scotland

Relative values Jim Sykes wants the people of the Borders to talk about dementia

By Nicole Nayar, Information Manager hasn’t spoken for the last few years, “I run the dementia café down here. It but communicates with noises and takes place on the last Thursday of “I’ll do anything I can to help,” repeats gestures,” Jim explains. “You can every month, 1.30pm–3pm, and it has Jim when I catch him on the phone always tell when she’s happy, she great attendance.” on the way back from dropping off his perks right up.” wife, Donna, at day care. Jim and Donna Jim and Donna have a close family: have been married for 48 years after two children, two grandchildren and “Life since Donna’s meeting at a dance in the Borders town one great-grandson. “Since Hayden, our of Selkirk: “I’m from Hawick and Donna great-grandson, has started moving diagnosis has been full of is from Selkirk. Every weekend there around more, Donna has loved spending would be a party at the local hall in time with him. I’ll say, ‘Go give your ups and downs, but Jim Selkirk on a Friday and then another granny a kiss’ and he’ll run over to her chooses to stay positive.” in Hawick on a Saturday, and that’s and she is so happy spending time with where we met.” him. He’s given her a new lease of life.” Donna was diagnosed with Life since Donna’s diagnosis has This September, I got the chance to frontotemporal dementia when she been full of ups and downs, but Jim visit the dementia café in Hawick and was 58. She has been living with chooses to stay positive. He ensures caught up with Jim, Donna and the rest dementia for around 9 years with that they both remain active members of the attendees. It had a wonderful Jim as her primary carer: “Donna of their close-knit community in Hawick: turnout this month. I was greeted by

Jim and Donna with their great-grandson Hayden Relativesection values Issue 94 – Winter 2017 23

around 25 people with dementia and a handful of their carers. They were all sitting around horse-shoe shaped tables, snacking on pies from the local bakery and sipping cups of tea. Unbeknown to me, I had come on a very exciting day – The Golden Girls, a local singing group, were putting on a performance for the patrons. “It’s such a relaxed atmosphere,” Jim explains. “Everyone here has been touched by dementia and this is a safe space for them to share their experiences without feeling forced. The best part about it is that they never feel pressured to explain that they have dementia because we’re all in the same boat.”

“The most important thing I want to share with other people in the community is that it’s okay to talk about dementia. People shouldn’t have to go through this alone.”

When the ladies start singing, reciting poetry and telling old stories, I immediately understand why this is Iceland, where he took part in a store- so important to Jim and Donna. Sat based bucket shake. Jim also took at the end of one of the tables, they part in the Border’s Memory Walk in are hand-in-hand dancing and singing September, raising around £840 for along to the old Scottish and Irish Alzheimer Scotland. songs. “Donna has always been a fan of “I think the most important thing I country music,” says Jim, “I used to play want to share with other people in the the same tracks over and over again community is that it’s okay to talk about in the house and in the car because it dementia. People shouldn’t have to go made her so happy.” through this alone.” Jim is a keen supporter and volunteer for Alzheimer Scotland. Not only More info does he run the dementia café, he also supports the local community at Do you know a family who would like to events and fundraisers. Recently, Jim share their story? Get in touch with us at [email protected] or call the Dementia was involved in a nationwide fundraiser Helpline on 0808 808 3000 to find out more with one of our corporate partners, section 24 Dementia in Scotland

Alzheimer Scotland’s Dementia Helpline will be open as usual, 24 hours a day, every day throughout the festive period. If you need information or emotional support call 0808 808 3000 or email [email protected] at any time, day or night. Thanks to the Dementia Helpline team, nobody has to face dementia alone this Christmas. Fundraisingsection Issue 94 – Winter 2017 25

Fundraising Anna Devine, Director of Fundraising and Marketing

his Christmas opened 18 Dementia Resource Centres I want to in recent years. The centres provide a Tsay a huge well-designed and welcoming space THANK YOU to where people with dementia can access every one of our information and support in their own amazing supporters community. We also partially fund the and volunteers Alzheimer Scotland Nurse Consultants who have been in NHS Boards to work strategically to walking, running, improve acute hospital dementia care. jumping, sailing, golfing, singing, knitting, Research is another area in which dressing up, dressing down, shaking we’re invested. We are focused on cans, getting muddy, getting silly, giving finding a cure through clinical and so generously and doing so much scientific-based research and on for Alzheimer Scotland. Without their improving care through practice and incredible effort and support, we simply social-based research. Service Administrators from North Ayrshire and couldn’t continue to make a difference We also explore technology and Inverclyde services raised £1200 when they to the lives of people with dementia, products which support people with took on the mighty West Highland Way their families and carers. We promise dementia. Most recently, we developed that every penny we raise in Scotland an assistive app called Purple Alert. It stays in Scotland. And as the number brings communities together to help of people living with dementia in the people living with dementia return country continues to rise, we will remain home safely if they lose their way. committed to making sure that nobody We also fund the Scottish Dementia faces dementia alone. Working Group – a group of over 150 At the very core of our work is our individuals with dementia – and the 24/7 Dementia Helpline. Very often, National Dementia Carers Action it is the first place people go when Network. Both groups make a huge they need support, advice and an difference to the lives of people with understanding voice. The Helpline dementia and their carers. They play refers many callers on to our network a key role in helping us enhance our of Dementia Advisors who work understanding of the experience and face-to-face with people living with issues faced by people affected by dementia, their families, friends and dementia on a day-to-day basis. carers. Our Dementia Advisors offer Please help us create a better future practical support and help people stay for people and families living with Tea & Blether at Woodend Hospital, Aberdeen connected to their communities and dementia in Scotland by continuing to continue doing the things they enjoy for support Alzheimer Scotland in whatever as long as possible. way you can. We work creatively within local communities to develop activities and support initiatives. Our projects are diverse, including: dementia cafés, football reminiscence groups, knitting groups, movie groups, and musical groups. Our work is wide-ranging and includes the delivery of ‘Dementia Friends’ learning sessions to groups, organisations, businesses and the public sector. We’re tackling discrimination and stigma by taking dementia straight to Guy Strachan trekked across the Camino Buddy the Dog met with local police officers the heart of the high street. We have Ingles, with his wife and dad on Buchanan Street in Glasgow Supportsection 26 Dementia in Scotland

Making sure nobody faces dementia alone

lzheimer Scotland introduced the role of the Dementia Advisor in 2009 and since then they have cemented themselves as a lifeline to the people with dementia and their families in their local communities. We currently Ahave 38 Dementia Advisors working throughout Scotland to ensure nobody faces dementia alone. Our Dementia Advisors rely solely on income from fundraising, so this Christmas we’re asking you to give what you can to support their incredible work. We spoke to some lovely ladies at our Dumfries Dementia Resource Centre to find out how much Mandy means to them. Mandy Pool – Dementia Advisor

Mandy has been working with they’re being supported within their Alzheimer Scotland for 15 years, half community. The service I provide gives of which have been spent working me the opportunity to ‘dip in and out’ when information or support is as the Dementia Advisor at the most needed. Dumfries Dementia Resource Centre. The Dementia Advisor role is so A large part of my role as a Dementia varied, you never get two days which Advisor is to provide one-on-one are quite the same. From facilitating support, advice and information to support groups and carers courses; to people with dementia. I also point raising awareness through talks and them to other services available across workshops; supporting fundraising the region – covering Annandale and events; representing Alzheimer Mandy Poole Eskdale, Nithsdale, Upper Nithsdale Scotland as part of joint working and the Stewartry. groups and Dementia Forums; I support around 50 people affected and, most importantly, supporting “The Dementia Advisor by dementia at any one time, and individuals with dementia and role is so varied, you work regularly with families to ensure their loved ones. never get two days which are quite the same.” Sheelagh Nash – Carer

Sheelagh cares for her husband Clive, understand what dementia is or how who has a diagnosis of dementia, at it affects people. We started going their home in Dumfries. to the Resource Centre in March this year, following a referral from the local When Clive first received his diagnosis, carers centre, and I’ve seen such a he was incredibly anxious that he change in him ever since. would be judged by people that didn’t When we first learned about what the centre had to offer, Mandy suggested several groups that we “We really can’t thank might benefit from. It was a struggle Mandy and the rest of to get Clive motivated to try them. His response was always: “that would make Sheelagh Nash the team at the Resource me squirm”. However, with Mandy’s help, we started attending a few groups Initially, I struggled to come to terms Centre enough. Without at the Resource Centre, and now we with the changes in Clive. I couldn’t their support and advice, attend lots of them: Forget-Me-Not understand why it took him so long lunches, Musical Minds, bowling, and to do anything and why he did certain I really don’t know Movie Memories. I also attend the things. Mandy has worked with me to if we could cope.” carers support group, where I can speak help me understand these changes and confidentially with other carers. why he sees things differently. Supportsection Issue 94 – Winter 2017 27

Vicky Lynn – Living with dementia

Vicky and her husband, John, live families, which John and I really enjoy together in Kelloholm. Vicky is using attending. Mandy and her colleague her personal experience to help will split us up into two groups where we can have a chat about our others understand dementia. experiences. It’s really reassuring to My husband, John, and I are in a hear how other people have dealt particularly unique situation where with situations or challenges which we care for one another. John lives we’re facing now. with Parkinson’s disease and I have Following my diagnosis, I found dementia. So I help him with his body that a couple of people I had known and he helps me with my brain. I go for years started avoiding me – some with him to the physiotherapist or the even crossed the street when they saw Vicky Lynn speech and language therapist and me because they just didn’t know what he comes to the ‘Down Memory Lane’ to say to me anymore. Obviously, this café with me. was very upsetting at the time so I decided to confront it head-on by marching over and chatting “It’s really reassuring to to them about it. Seeing people struggle hear how other people with my diagnosis have dealt with situations has motivated me to help other or challenges which people understand we’re facing now.” dementia better, which Mandy has supported me My Link Worker referred me to with. When Mandy at the end of my post-diagnostic Mandy was asked support. Mandy called me about a to visit a local month after and asked me if there was housing association to anything she could do to help, or if I speak to them about was interested in getting involved in dementia, she asked me any activities or projects. This was great if I fancied going along with for me. I am very social and I wanted her. Of course I did! I enjoy to stay involved in as much as possible. speaking openly about We absolutely love attending the dementia and helping other support group together and going to people understand it. In the ‘coffee and chat’ group, where we places like Dumfries, everyone reminisce with other people over old knows everyone, so it’s great when pictures of Dumfries. local businesses want to learn more There is a fantastic support group about dementia because it helps Dumfries and for people with dementia and their spread the word. Galloway

We want to stay in touch! Data protection law is changing and we need your permission to keep the conversation going. See page  for more details. section 28 Dementia in Scotland

The number of people in Scotland living with dementia is on the rise. Will you help us make sure nobody faces dementia alone?

To donate £5 to Alzheimer Scotland text WISH29 £5 to 70070 Text service provided by Vodaphone UK. For full T&C’s please visit www.vodaphone.co.uk Fundraising Issue 94 – Winter 2017 29

Reaching new heights

12-year-old Kayla McGeorge from We stopped briefly to enjoy the of all nationalities – Swedish, Indian, Lockerbie put on her walking boots amazing views. When the clouds broke, African. We met two lovely Australians this summer to raise money for you could see mountain ranges and the on our way up and lots of walkers with Alzheimer Scotland. Scottish coast. On a good day, some their dogs for company. people say you can even see Ireland – Kayla challenged dementia by hiking but you can’t stop long enough to check 5pm – We returned to base just to the summit of Ben Nevis together as midges might attack you. before 5pm where I was surprised by with her mum, Abbie, and family friend, We walked through waterfalls some of my family who had come to Calum. Kayla’s great-grandfather has a and along cliff edges, some steeper support me – and even treated me diagnosis of Alzheimer’s disease, and than others, and as we approached to a McDonalds. It didn’t seem like she wanted to do something to raise the top, we saw two giant crevices we had been away for eight hours money for people with dementia. which dropped down as far as the because we were so busy taking eye could see. in the views. It’s amazing to think Kayla’s climb that I had just climbed the highest 1.30pm – We reached the top of Ben mountain in the UK! 9am – We were lucky to get good Nevis four and a half hours after setting My goal was to raise £500 for weather and set off at 9am. There is off. Hundreds of people were there, Alzheimer Scotland and within one a path most of the way to the top but although the mist made visibility poor week of finishing my climb, I had with rocks, loose stones and slippery and the temperature had dropped raised £650 – with final donations conditions underfoot, walking can be considerably. But despite the harsh still coming in. I would very much like difficult – even more so coming down. conditions, I was so proud of our to thank everyone who donated and I With stories of fatal accidents just achievement. would highly recommend Ben Nevis to weeks before, safety was vital so my It was time to start our descent. On everyone. It was for a great cause but I mum and Calum were with me every our way down, we saw planes flying in would say the climb was worth doing The number of step of the way. the valleys below and passed people for the views and scenery alone. people in Scotland living with dementia is on the rise. Will you help us make sure nobody faces dementia alone?

To donate £5 to Alzheimer Scotland text WISH29 £5 to 70070 Text service provided by Vodaphone UK. For full T&C’s please visit www.vodaphone.co.uk sectionDiary 30 Dementia in Scotland

Fundraising events

January 2018

Sat 13 January BUPA Great Winter Run – Holyrood Park, Edinburgh

March 2018

Sat 3 March The Mighty Deerstalker – Innerleithen Sun 11 March Inverness Half Marathon – Inverness TBC Zipslide across the Clyde – Pacific Quay, Glasgow

April 2018

21–22 April *New for 2018* Run Balmoral – Balmoral Sun 22 April London Marathon – London Mon 23 April Great Edinburgh Run – Edinburgh

More info

You can browse all of our events at www. alzscot.org/sponsored_events. To turn any event into a challenge that raises money for Alzheimer Scotland, just get in touch at [email protected]. sectionDiary Issue 94 – Winter 2017 31

Dates for your diary Our events

November 2017

Mon 20 November Open Door Event – Dumfries

Alzheimer Scotland Dementia Resource Centre, 8 Gordon Street, Dumfries, DG1 1EG Join us to share your experiences of dementia care and support in the local community. Meet your local team and find out more about our local activities. Tell us what additional support you would like to experience in the local community, as well as hear from our Chief Executive about Alzheimer Scotland’s future plans.

December 2017

Thurs 14 December Alzheimer Scotland Annual Christmas Lecture 2017 – Edinburgh

The Hub, Castlehill, Edinburgh, EH1 2NE In this year’s Christmas lecture Prof. Frank Gunn-Moore will explore new ideas and approaches in trying to understand and treat Alzheimer’s disease and dementia. He’ll ask “what have we got right?” and give the audience the chance to pose their own questions. Book your ticket at www.alzscot.org/xmas_lecture

June 2018

Fri 8 June Alzheimer Scotland Annual Conference 2018 – Edinburgh

EICC, The Exchange, Edinburgh, EH3 8EE How can we all ensure that no one faces dementia alone? Join us at our annual conference to find out more.

For more information on our events visit www.alzscot.org/conferences. Giving hope in every thread

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The Alzheimer Tartan is dedicated to dementia research. And it’s made in Scotland, with love. Available exclusively from www.tartanonline.com