Dementia in Scotland Winter 2014/15 – Issue 85
Membership: spread the word! 2 Dementia in Scotland
Dumfries and Galloway 21st anniversary Tea Dance, page 27 Sally Magnusson interview, page 20
Maureen Taggart’s career, page 7
Dementia Assistance Dogs appeal, page 28
Forget-me-not Ball, page 30 Bonnyrigg Day Centre opens, page 24 New AHP reports, page 4 www.publishingbureau.co.uk by: Designed and produced
Front cover image: Jim McEwan / Dumfries Front page Issue 85 – Winter 2014/15 3
Welcome!
2015 will be a busy year for Alzheimer Our spring fundraising appeal focuses Scotland, with many exciting projects in on the innovative Dementia Assistance the pipeline. This edition of Dementia Dogs pilot. You can read more in the in Scotland looks back at some of the magazine, and will receive additional highlights of the last few months, as well information in the post very soon. It is as forward to some key initiatives for the becoming quite clear from our research coming year. and pilot work that Dementia Assistance Shortly before Christmas, we celebrated Dogs have huge potential to improve the launch of three new reports featuring quality of life for people with dementia the innovative work that allied health and their carers. We are excited to professionals (AHPs) are doing to support be pioneering this novel approach to people with dementia. These showcase dementia care in Scotland. the invaluable contribution AHPs make at In October we jointly organised every stage of the dementia journey. We Alzheimer Europe’s annual conference, look forward to continuing to champion which took place in Glasgow. One of the the role that the AHP community can play high points was the launch of the Glasgow in the lives of people with dementia and Declaration, calling on the European Dementia Down Under, page 26 their families in 2015. Commission to develop a European 2014 finished on a high note with our Dementia Strategy and for all member inaugural Christmas lecture, presented states to commit to fully promoting the by Baroness Susan Greenfield. This rights, dignity and autonomy of people provided a fascinating insight into new living with dementia. Scotland has led the approaches to understanding dementia, way in promoting a rights-based approach and was a wonderful opportunity to meet to dementia policy, and we were very with friends and supporters in the festive pleased that the Cabinet Secretary Alex atmosphere of The Hub on the Royal Mile. Neil was the first European Minister to sign In the middle of this magazine, you the declaration and support it. will find a feature on our new campaign We held our staff and volunteer to improve the early diagnosis of awards on 7 November as part of our dementia. The earlier we are able to AGM and staff, members’ and volunteers’ support someone with a diagnosis, the conference. The awards recognise some more we can do to help them maintain of the wonderful work being done a good quality of life and put support across Scotland by so many dedicated strategies and self-management plans colleagues and volunteers. You can in place. We believe that now is the right read more and see photos from the time to promote this, given the Scottish event inside. I would like to thank and Government’s commitment that anyone congratulate everyone involved. The AGM and Staff Conference, page 22 diagnosed with dementia will receive a main message from the conference was minimum of one year’s post-diagnostic just how many extraordinary staff and support from a named link worker. Please volunteers we have throughout Scotland consider supporting the campaign. The who every day help support people with article provides more information and dementia lead ordinary lives. explains how you can get involved. Thank you for your continued support. Our Christmas fundraising campaign and best wishes for 2015. was a great success, and I would like to personally thank everyone who contributed. Hundreds of you sent Christmas decorations back to us with details of the person with dementia you were thinking of. These were used to decorate our Christmas tree and created a Henry Simmons beautiful and moving tribute to everyone Chief Executive Alzheimer Europe conference, page 10 named on the decorations. Alzheimer Scotland 4 Dementia in Scotland
New reports showcase the work of AHPs
On 15 December, Alzheimer It features case studies on the National Allied Health what a great way they were Scotland launched three new AHPs who have trained as Professions Consultant, who to celebrate the work of reports showcasing the work Dementia Champions and is based within Alzheimer AHPs. She added that they of allied health professionals the work they are doing to Scotland. Her role focuses on demonstrated the strength (AHPs). AHPs play a key role share their knowledge and bringing the skills of AHPs of leadership within the in supporting people with spread good practice. The to the forefront of dementia profession, and featured many dementia and their families second report focuses on how practice and linking these examples of innovative and and carers. They work in AHPs are helping to deliver skills to the needs of people high quality services. hospitals and care settings, the Scottish Government’s with dementia, their carers, Elaine Hunter asked all as well as in the community. commitment to at least one partners and families. Across the AHPs at the launch to The AHP disciplines include year’s post-diagnostic support Scotland, there are also three make a New Year’s resolution arts therapists, dietitians, for anyone who is diagnosed AHP consultants working to share the reports with occupational therapists, with dementia. The final within individual health boards: colleagues and to spread paramedics, podiatrists, report looks at ways in which Sandra Shafii (NHS Lanarkshire), the word about how they too physiotherapists and speech AHPs are enabling people Jenny Reid (NHS Lothian) and could implement some of and language therapists. with dementia to live well Christine Steel (NHS Greater the ideas that they featured. The new reports highlight within their communities. This Glasgow and Clyde). Henry Simmons congratulated the different ways that AHPs work is based on Alzheimer Professor Maggie Nicol from everyone on the reports, are supporting people with Scotland’s 8 Pillars Model of Queen Margaret University highlighting how the work of dementia across Scotland. Community Support. launched the reports at the AHPs was focused on the
The first one focuses on Nationaltheir identity The– dual versionreports were National identityAlzheimer – dual version Scotland’s National outcomes that really matter An English/Gaelic version of the identity is also available. This is for use An English/Gaelic version of the identity is also available. This is for use role as agents of change.on communications aimedcommissioned at the Gaelic community. Use of thisby version Elaine Hunter,on communications aimedOffice at the Gaelic in community. Edinburgh, Use of this version saying to people with dementia. of the identity is at the discretion of the creator of the communication. of the identity is at the discretion of the creator of the communication.
Dual SG Stacked Positive Colour Dual SG Stacked Positive Mono Dual SG Stacked Reversed Colour Dual SG Stacked Reversed Mono Dual SG Stacked Positive Colour Dual SG Stacked Positive Mono Dual SG Stacked Reversed Colour Dual SG Stacked Reversed Mono
Allied Health Professionals Allied Health ProfessionalsCore Elements 3 Allied Health ProfessionalsCore Elements 3 Dementia Champions: DementiaDelivering Champions:Post-Diagnostic Support: Delivering Integrated Dementia Care: Agents of Change AgentsLiving Well of Change with Dementia Living Well with Community Support More info
You can download copies of the reports by visiting: www.alzscot.org/ahps News Issue 85 – Winter 2014/15 5
Baroness Greenfield speaks at Christmas Lecture Alzheimer Scotland's inaugural therapies for Alzheimer’s, Christmas lecture took place Parkinson’s disease and motor at The Hub in Edinburgh on 15 neuron disease. December. The sell-out event Following an introduction attracted over 300 people on by Henry Simmons, Baroness what was a crisp winter evening Greenfield began by explaining shortly before Christmas. that her team at Neuro-Bio Baroness Susan Greenfield were taking 'a novel approach gave the lecture, which to neurodegeneration'. She explored the theme 'Dementia: described how current current and future prospects'. approaches to understanding Susan Greenfield is a highly and treating Alzheimer’s respected scientist whose disease didn't strike at the academic career began at heart of the problem and didn't Oxford University. She is Chief explain what causes cells to die. Scientific Officer and Founder Susan Greenfield explained of Neuro-Bio, a biotech that she was interested in an company that is researching 'anticipatory approach' and degeneration starting in the Although technical in parts, triggers for neurodegeneration, acknowledged there may well brain and the person receiving Susan Greenfield's lecture was with the goal of developing be a 20-30 year gap between a diagnosis of dementia. If riveting and prompted many a biological marker can be questions from the audience identified that indicates this afterwards. It described early degeneration, there may fascinating new avenues for be scope to identify people research that may help us with dementia when they are understand – and potentially pre-symptomatic. Furthermore, treat and prevent – dementia if a drug for stopping further in the future. Baroness cell degeneration could Greenfield concluded by be identified at this early saying that new models like stage, this would raise the the ones being pioneered by tantalising possibility of her team were vital to 'rethink' permanently preventing the the mechanisms behind onset of symptoms. dementia and gain meaningful The Neuro-Bio team is understanding of how it works. looking at how the damage After the lecture, guests that causes neurodegenerative enjoyed festive refreshments illnesses – including those in the beautiful setting of The Below: John Laurie, Baroness Susan Greenfield, and Henry Simmons. associated with dementia – Hub, decked with Christmas relates to a particular area of decorations, and there was a the brain they call the 'hub'. real sense of excitement in the Neurons in the hub behave in a air as discussions continued different way to those in other about this exciting scientific parts of the brain, sending work and its potential. their messages more widely. These have been labelled 'global' neurons. Her team has made exciting progress in identifying other notable characteristics of these neurons, including a particular More info sensitivity to substances called 'trophic factors' that aid and www.susangreenfield.com sustain growth. www.neuro-bio.com Members 6 Dementia in Scotland
Members share their thoughts at advisory forum
Our second Members’ Advisory thoughts and ideas and which placed a new emphasis Forum was held on 30 reported these back to the on dementia research. September at the Highland room at the end of the session. The thoughts and ideas Hotel in Stirling (pictured, The first session was about which members shared in this right). 44 members came early diagnosis, and members forum have been compiled along and had the chance to talked about how to encourage into an internal Alzheimer take part in sessions which people with dementia to Scotland document. This explored important topics in come forward and discuss the has been distributed to our dementia care. illness with family. The second board and members of staff The meeting took the session looked at the cost of to inform future policy and same format as the first care and how to pay for it. In care. We would like to thank forum in April 2014. Each Scotland, care costs would everyone who attended the session featured a 15 minute double if the contribution Members’ Advisory Forum, and presentation by a speaker, half made by unpaid carers had are looking forward to our next an hour of discussion, and to be met through formal event in Glasgow in April. then 15 minutes of feedback services. A third, final session from the groups. There was an discussed research priorities Alzheimer Scotland member of in dementia. This has become staff or trustee at each table a hot topic in the wake of the who recorded the members’ 2014 G7 Dementia Summit,
Spring Members’ Advisory Forum
We are holding our third Members’ Programme for 28 April 2015 Advisory Forum on Tuesday 28 April Arrival tea, coffee and a chance to 2015 at The Trade Halls in Glasgow. 09:30-10:00 meet other Alzheimer Scotland members The forum will enable Alzheimer Scotland members, stakeholders and advisers to explore and better understand current issues and 10:00-10:15 Welcome remarks to test new ideas. We aim to capture key thoughts, discussion and First session: themes emerging on the day to feed into future planning. 10:15-11:15 Volunteer Strategy Alzheimer Scotland To book your place (members only), go to www.alzscot.org/maf. If 11:15-11:30 Comfort break. you do not have internet access, contact Laura Gallagher, Events & Marketing Administrator, on 0141 410 1072 or write to her at 81 Second session: Advanced illness model Oxford Street, Glasgow, G5 9EP. 11:30-13:00 Anticipatory care planning & decision We had a wonderful response to our previous two forums making in Edinburgh and Stirling last year. Places are limited so we Sandwich lunch and networking with 13:00-13:45 recommend that you book early. other Alzheimer Scotland Members Third session: Design & Dementia 13:45-14:45 How design can help people with dementia stay independent for longer 14:45-15:00 Closing remarks Looking back Issue 85 – Winter 2014/15 7
Maureen Taggart reflects on a career in dementia care
Since 1976, Maureen Taggart has been a driving force in dementia care in Lanarkshire, and until recently she was the local Alzheimer Scotland Dementia Nurse Consultant. In December 2014, she retired from NHS Lanarkshire, and in January took on the role of National Dementia Nurse Consultant with the Scottish Government and Alzheimer Scotland.
My 38-year career in nursing for, as consultancy represents across NHS Lanarkshire, and and carers engaged every step began with a temporary the pinnacle of a nursing another eight graduated of the way. It has been an summer job. I’m from career. The role was funded in January. They have been honour and a privilege to be an Shotts, a rural town in North by the Scottish Government remarkable: they are our real Alzheimer Scotland Dementia Lanarkshire, and when I and Alzheimer Scotland, with agents of change in dementia Nurse Consultant, and I look joined NHS Lanarkshire as a very specific key objectives and care. They do so much forward to continuing my work nursing assistant in Hartwood focused areas for improvement exciting work, from driving as National Dementia Nurse Hospital, I enjoyed it so much in dementia care. I’m incredibly environmental improvements, Consultant. I immediately applied to stay proud to have reached this to piloting exercise and on! That’s the reason I’ve been level in my time with the NHS mobility groups, to providing working in older adult mental and am pleased with what reminiscence or stimulation ‘I’m so proud of health care for so long: I I achieved, though there is therapy. They have helped simply love doing it and feel always more to do! personalise dementia care our work and I love like I still have a lot to give. I was the fourth Dementia through projects like ‘Getting doing it’. ‘Working For the vast majority of my Nurse Consultant in Scotland, To Know Me’, the document we career I have worked with older and our goal was to improve produced in NHS Lanarkshire with our Dementia adults who have a mental the quality of care for people to help hospital staff get to illness, including dementia. with dementia coming into know the people they care Champions has From day one I found it our acute general hospitals. I for, ensuring the delivery of been a highlight especially rewarding and worked at a local and national person-centred care. fulfilling to help older adults, level in a very strategic sense. In January I took on a new of my career’ their families and carers. I Dementia care was already role: National Dementia Nurse believe we need to be involved a priority in NHS Lanarkshire, Consultant. This involves taking My family are all proud of in their care from the word ‘go’, so I worked to maintain my overview and expertise me and how much I love my as it is crucial to get the right professional leadership to a new national level, and work. In fact, as I leave the outcome at the right time and in caring for people with I am incredibly excited about organisation, my daughter in the right place. dementia by introducing this new role. There is a still a Lorraine has joined it: as This ideal stood me in good new policies to achieve best long way to go in our journey NHS Lanarkshire’s Head of stead as my career became practice in our care. This to improve dementia care. Information Management. increasingly centred on included supporting the local Ultimately we want to ensure Although I’m moving on to new dementia. In 2011, I took on Alzheimer Scotland Dementia that every single person with pastures, I have loved my time the role of Dementia Nurse Champions – which has been dementia is treated with the with the NHS, and look forward Consultant for NHS Lanarkshire: the highlight of my career. We utmost dignity, respect, and to watching the bright future a position which I am grateful have 30 Dementia Champions compassion, with their family of dementia care. 8 Dementia in Scotland
Dementia Friends in Scotland
A group of students from Coatbridge College are among the latest to become Dementia Friends
Dementia Friends Scotland There are two ways to You can also become a Dementia Friends Scotland is now fully up and running, become a Dementia Friend: Dementia Friend by taking is rapidly building up steam, with training underway online and face-to-face. part in hour-long, fun, face- and plans are underway to across Scotland. The project Online training is based to-face information sessions. work more widely with schools is helping a wide range of around a series of videos The aim of these is to help all and other organisations to people develop practical on the Dementia Friends of us think about the impact spread the word. Anne adds: skills to support people with Scotland website (www. of dementia and the negative ‘We have been approached dementia. Participants begin by dementiafriendsscotland. perceptions which can surround by numerous businesses and gaining a basic understanding org), which should only take the illness. The sessions organisations across Scotland, of dementia, then learn how a few minutes to watch. feature tips on supporting including British Red Cross they can use this to support These provide an insight into people with dementia who and Bank of Scotland, which people with the illness in their the difficulties people with may be struggling with day- are interested in participating. local communities. Dementia dementia can experience in to-day activities. An example So whether you’re a member Friends Scotland is being led their daily lives, with themes might be helping someone of the public, or want to get by Anne McWhinnie, and our including ‘On the phone’, in a supermarket to pay for involved as part of a group, we team of Dementia Advisors are ‘Getting around’, ‘Paying their shopping, or encouraging would love to hear from you!’ enrolling and training groups for things’, and ‘Reading others to have patience We have been overwhelmed in your neighbourhood! and writing’. with them. by the interest from schools
Thank you You are now a Dementia Friend Wear your badge and raise awareness within your community www.dementiafriendsscotland.org
The first Dementia Friends Scotland video shows how Dementia Friends can help people with dementia in important, everyday ways. Community Issue 85 – Winter 2014/15 9
and their enthusiasm to get involved. Pupils are You can also encouraging their friends to become Dementia Friends become a through social media. A large group of students at Dementia Friend Uddingston Grammar School by taking part held a 1950s-themed day which raised £1,000 for in fun, face-to- our work. They also jointly participated in a Dementia face information Friends information session, sessions, featuring which led to a total of 490 pupils becoming Dementia tips on supporting Friends. A young volunteer from the Centrepoint Community Centre in people with Wishaw takes part in a Dementia Friends session dementia. Alzheimer Scotland tartan takes shape
Professor Paul Rodgers creative process. The aims of of Northumbria University the Design Research Fellowship School of Design is helping to include changing people’s develop an Alzheimer Scotland perceptions surrounding tartan, with the input of many conditions such as dementia. people with dementia from Taking ownership of projects, across Scotland. The project like the tartan design project, is a collaboration between illustrates how people with Northumbria University School dementia can fully participate of Design and Alzheimer in the creative process. Scotland, and is part of a Scores of tartan designs larger Arts and Humanities have been developed during Research Council (AHRC) the workshops, and one Design Research Fellowship of these will be selected, that runs from November 2014 officially registered, and used to November 2015. in a range of products. In Between November and coming months, details of February, Paul ran tartan design the selected tartan will be workshops with people who announced and the related have a diagnosis of dementia. products will be available to The workshops took place at buy across the world. Alzheimer Scotland Dementia Resource Centres and dementia cafés, and involved explaining the tartan design process to More info participants, and helping each of them create a design. You can see the designs which One of the benefits of the have been created so far on the tartan design project is that it tartan project’s blog: https:// is enabling people living with alzheimerscotlandtartan. dementia to contribute to the wordpress.com/ 10 Dementia in Scotland
Glasgow hosts Alzheimer Europe conference
Left: Members of the European Working Group of People with Dementia. Below: Agnes Houston Alzheimer Europe’s 24th everyone’s business’ and Both groups campaign to raise annual conference took ‘Creating a rights-based standards of care and improve place in Glasgow from 20–22 National Dementia Strategy’. quality of life for people living October. More than 800 Among other topics, speakers with dementia. delegates made the journey from Alzheimer Scotland, NHS to Scotland from across the Scotland, and the Scottish world, including 44 people Government presented on More than 800 with dementia. The theme of the importance of dementia- the conference was ‘Dignity friendly communities in care, delegates made and autonomy in dementia’. and the role of Dementia the journey to Alzheimer Scotland was Champions in hospitals. They honoured to play a significant also discussed the current Scotland from role in the conference, progress of Scotland’s presenting sessions and innovative National Dementia across the world helping with practical aspects. Strategy. The main presentations covered topics including Agnes Houston ‘Promoting a rights-based elected to European approach to dementia’ and Working Group ‘Innovation and care in dementia’. There was also During the conference, Agnes a round-table discussion Houston was elected as one of on dementia strategies and the vice-chairs of the European policies across Europe. In Working Group of People with addition, delegates could Dementia (EWGPWD). Agnes choose from a selection of 28 was diagnosed with dementia parallel sessions, including in 2006 at the age of 57 and four dedicated to Alzheimer has been an active member of Scotland’s activities, which the Scottish Dementia Working included ‘Making dementia Group (SDWG) ever since. Alzheimersection Europe Issue 85 – Winter 2014/15 11
‘Glasgow Declaration’ with dementia in recent years, Jim Pearson it is widely accepted that calls for European there is still a long way to elected to AE strategy go. The Glasgow Declaration Board of Directors emphasises the key role that One of the highlights of human rights legislation, such During Alzheimer Europe’s the conference was the as the European Convention annual general meeting, Jim launch and signing of an on Human Rights, must Pearson, Deputy Director of influential new international play in upholding the basic Policy at Alzheimer Scotland, policy statement. Called the human rights of people was elected to Alzheimer ‘Glasgow Declaration’, the with dementia. During the Europe’s board of directors, landmark document commits conference the declaration along with several others. everyone who signs it to fully was signed by more than The new board members promoting the rights, dignity 120 people, including senior will complete a two year and autonomy of people figures from the Scottish term, and were elected by living with dementia. While Government, people with representatives from Alzheimer Below: Amy Dalrymple, Head of enormous progress has been dementia, and representatives Europe’s member associations. Policy, Alzheimer Scotland. made in the quality of care from Alzheimer Scotland. The new board held its first Bottom: Jim Pearson, Director of and treatment for people meeting in December 2014. Policy, Alzheimer Scotland.
Left: Geoff Huggins signing the Glasgow Declaration accompanied by (left to right) John Laurie, Jeanette Maitland, Henry Simmons and Heike von Lützau-Hohlbein. 12 Dementia in Scotland
‘I worked for almost five years with dementia’
Stewart and Megan Black have been married for 25 years, and in 2010 Stewart was diagnosed with vascular dementia. Despite this, he has continued to stay active, remaining in work for several years and supporting Alzheimer Scotland however he can. Here, the couple tell us their story.
STEWART
’ve had diabetes since I was fourteen, and have had complications with my Ikidneys for many years. However, five years ago I started to get more unusual symptoms. I began starting sentences and not being able to finish them, and I became more frustrated and irritable than before – I started snapping back at people. jet engines. I had been in the role for 18 started using their local services and even My wife Megan noticed that the changes years, so I knew the machinery like the helping out on interview panels. This gave were getting worse, so I went to the back of my hand, but four years after my me a sense of purpose and helped keep doctor, who referred me to a psychiatrist. I diagnosis I started having to keep a little my mind active. Alzheimer Scotland’s received a brain scan and was diagnosed notebook to remind myself of the most staff are great and I try to support the with young onset dementia at 51 years simple things. organisation in any way I can. old in 2010. Immediately after I received my I sit on the interview panel for Looking back, I’m surprised we didn’t diagnosis, I contacted my online manager Alzheimer Scotland’s services in North realise it was dementia. I was always and informed him of my condition. He was Lanarkshire. Whenever they are recruiting getting confused in little ways. For example incredibly understanding and supportive new staff, I’m invited along to sit in on the I would run into a room to get my mobile from day one, and helped me stay in interview. Afterwards we discuss whether phone and come back with the TV remote. work. As my kidney complications got the candidate is someone a person with One time I got into the shower in the worse it exacerbated my dementia and dementia would be likely to relate to as morning, and after a minute or two I looked my employers moved me to slightly less support staff. This means I’m playing an down and noticed I had my socks on! demanding roles, and changed my shift active role in helping choose who would At the time of my diagnosis, I wasn’t pattern to help reduce stress. I continued be best to employ for these roles. actually too bothered by it. It didn’t really to do high precision tasks, manufacturing I also go to a lot of Alzheimer worry me – maybe I was being naive. I felt to thousandths of a millimetre, and Scotland events, for example their staff like I should just get on with my life, and I still felt like I was contributing a lot. conference and AGM. These are fantastic didn’t even tell my family, except for Megan. Unfortunately at the beginning of 2014 I and make a huge difference to a person My dementia didn’t significantly impact experienced more health problems and with dementia like myself. NHS Fife’s on my work for several years. I used to had to take early retirement from work. Dementia In Younger Adults conference in work with Rolls Royce, where I had to After I retired I became increasingly October was brilliant and very informative, accurately manufacture rotor blades for involved with Alzheimer Scotland. I and I wouldn’t have known about this Relative values Issue 85 – Winter 2014/15 13
without my connections to Alzheimer Scotland. One of the lectures was about how head trauma as a young person can potentially increase the risk of dementia later in life. When we heard this, Megan and I looked at each other in amazement. This was a real bolt from the blue, as I was assaulted by a gang when I was 21, and was concussed badly. We thought this may have contributed to my early onset dementia more than my kidney complications. After the lecture I even enquired about donating my brain to Alzheimer Scotland for medical research. Being involved with Alzheimer Scotland has improved my wellbeing and helped me to live well with dementia. I have made many good friends in the organisation who I meet up with at lots Stewart and Megan with Ruadh of events. This year I am also one of the faces of the Dementia Friends appeal: Stewart and I had been managing for We also have our dog Ruadh, who keep an eye out for me in the appeal’s two or three years, just continuing as we is wonderful. He gets Stewart out and film later this year! were, but Lorna changed everything for us. about on a daily basis. Although Stewart’s She helped us understand that we were mobility is poor he tries to take the dog MEGAN only just coming to terms with Stewart’s out for a short walk, but often ends up diagnosis and, after much persuasion, being out for ages, chatting to everyone his year is Stewart and my 25th talked him into going to a dementia he meets or other dog walkers. wedding anniversary. We started café. It took a further year or two before The message we want to get across Tdating 36 years ago when I was only Stewart actually went – but he loved it, is that younger adults can get dementia 15 and Stewart was 19. Although Stewart despite worrying about the age gap. too, and it is vital to diagnose and treat has had type 1 diabetes for over 42 years After I met Lorna, we began taking the illness early. Dementia cafés and he only started having complications with Stewart’s dementia more seriously. I other services like those run by Alzheimer his health seven years ago. I first noticed reduced my hours with the NHS to two Scotland are great, and we’d like to see he was struggling with his memory about days and moved my private practice into more people with young onset dementia five years ago, and I thought this might be our home. This really helped. We also told at them. So far, we’re managing well linked to his kidney problems. He began Stewart’s mother, brother and aunt, who with Stewart’s diagnosis, and are keen to forgetting to take his medication, which were very supportive – when Stewart’s continue supporting Alzheimer Scotland caused his kidneys to get worse, which health is poor his brother comes and sees in the future. They’ve really helped us would cause his memory to get worse – it him in the daytimes to help him out. build a new support network since Stewart was a vicious circle. has retired from his job. I work part time for the NHS and also practise privately as a podiatrist. When ‘Staying active since Stewart was diagnosed in 2010, I was working with someone called Lorna my diagnosis has Hart, who is now Alzheimer Scotland’s really helped me’ Dementia Advisor for North Lanarkshire. Lorna moved on to another job, but We live in Glenboig and the people we stayed in touch. A couple of years here are really supportive. If the later, we met for lunch, and at that time ambulance has been over, seeing to Stewart was very sick with his kidneys and Stewart if he’s been unwell, we’ll get kind dementia. I was upset and told her all notes through the door and things like about it – then remembered that Lorna that. There’s a network of friends and worked for Alzheimer Scotland! neighbours here who help us. 14 Dementia in Scotland
Winners of Scotland’s Dementia Awards 2014 announced
1 On 25 September, the winners of Scotland’s Dementia Awards were announced at a ceremony at the Marriott Hotel in Glasgow. The awards linked in with World Alzheimer’s Day, which took place earlier in the week. Winners were chosen from over 90 applications, with awards in six categories. These recognise and celebrate the work of professionals and community groups who are committed to helping people with dementia and their families. We would
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1. Winners in the ‘Best dementia-friendly 3 community initiative’ category: Dumbarton Dementia Café.
2. Winners in the ‘Best Innovation in Continuing Care’ category: CrossReach, Inverness: - Cameron House Gaelic Initiative.
3. Winners in the ‘Best acute care initiative’ category: NHS Ayrshire and Arran: - Pocket Ideas… for a moment in time. SDAs 2014 Issue 85 – Winter 2014/15 15
like to thank everyone who 4 submitted an application and all those who attended the event. The awards are a partnership between Alzheimer Scotland, NHS Education for Scotland, NHS Health Scotland and the Scottish Social Services Council.
More info
To find out more about Scotland’s Dementia Awards 2015 visit: sda.dementiascotland.org
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4. Winners in the ‘Best community support initiative’ category: NHS Dumfries & Galloway, Mental Health Occupational Therapy: - OT Home Based Memory Rehabilitation Programme.
6 5. Winners in the ‘Best educational initiative’ category: Alzheimer Scotland in West Dunbartonshire: - Alzheimer Scotland Education Initiative..
6. Winners in the ‘Most innovative partnership’ category: Alzheimer Scotland, NHS Shetland and Shetland Museum & Archives: - When I Paint I Remember. 16 Dementia in Scotland
Let’s Talk about Dementia – having difficult conversations tarting in February, Why are we running it can mean that other, Look out for the Let’s Talk Alzheimer Scotland’s unrelated, health conditions about Dementia campaign in this campaign? Scampaign, Let’s Talk which may be causing the the Sunday Mail on Sunday 1 about Dementia, is asking Each day, our 24-hour symptoms go untreated. It February and on Scotland’s the public to have difficult Dementia Helpline, Post can also prevent people who major commercial radio conversations. Diagnostic Support Link might have dementia from stations (Clyde 2, Forth 2, The worry that someone, Workers, Dementia Advisors and getting an earlier diagnosis Northsound2, West Sound AM, perhaps even you, might have the staff in our services across and accessing the post Tay AM and Moray Forth Radio dementia is one of the hardest Scotland speak with hundreds diagnostic support which 2) for the first two weeks issues any of us will have to of people who have dementia, can help them to live well in February: particularly the face. However, having difficult are caring for someone with with the illness for longer, Scotland’s Talk In at 11am on conversations about dementia dementia, or who are worried reduce unplanned hospital Sunday 8 February. – with partners, with family that they or someone else may admissions, and unnecessarily As well as the media and friends, or with medical have dementia. early moves to care homes. campaign, we will have professionals – can make a One of the most common Our ‘Let’s Talk about case studies, information, huge difference to someone’s things people tell us is how Dementia’ campaign will and hints and tips on our future quality of life. difficult it can be to talk about provide tips to help start those website, which we will also Talking about dementia their concerns that someone difficult conversations and is share through Facebook and makes it more likely that they care about may have intended to : Twitter. We will also have an someone will get a diagnosis, dementia. People tell us that yy encourage families and information leaflet which can which can open doors to a raising their worries with the friends to talk more be requested by calling our variety of support from the person or with other family openly about dementia Dementia Helpline. NHS, social services and members is very difficult. yy break down some of the organisations like Alzheimer Often the person, or other barriers such as the fear Scotland. This is especially family members, will deny that of dementia, stigma, and relevant now as there is a there is anything wrong, refuse the worry that nothing guaranteed minimum of a to talk, or agree to seek advice can be done to help year’s post-diagnostic support from a doctor. yy encourage people from a named link worker. Not only can this be very to seek help physically and emotionally yy raise better awareness and draining for all concerned, understanding of dementia. Difficult conversations Issue 85 – Winter 2014/15 17
How you can help ‘As well as the
One of the best ways that Alzheimer Scotland members and supporters can help media campaign, this campaign is by writing to local newspapers. Letters pages in local papers are we will have widely read, so this is a great way to reach people who may not hear about the campaign in other ways. case studies,
What you can do: information, and hints and tips Please write a short letter for the letters page of your local newspaper, covering the following points, to make it helpful and interesting for readers: on social media
1. Describe, briefly, why this is important to you: and our website’ yy Have you been in a situation with a family member or friend where it was difficult to have a conversation about getting a dementia diagnosis? yy Did you find a technique or a source of support that was particularly helpful? yy Remember not to mention anyone by name unless you have asked them if they’re happy with that.
2. Say that Alzheimer Scotland know that this situation is far too common, and that this is why the ‘Let’s talk about dementia’ campaign is so important.
3. Finish by saying that if others are experiencing similar difficulties, they can call the Alzheimer Scotland Helpline on 0808 808 3000.
Pointers to make it more likely that your letter will be published: yy Keep it short! yy Use your own words about why this is important
To find out where to write to, either visit the website of your local paper, or check their letters page – either will tell you both an email address and a postal address to send letters for publication. Or, see our website to find out which local papers Join the there are in your area. Visit www.alzscot.org/conversation. conversation As well as writing to your local paper, please talk about the campaign in your local online community - at your church, pub, walking group, choir, evening class - and get more people having a conversation about dementia. /alzheimerscotland Thanks for your help with this important campaign – it could really make things better for someone with dementia or their friends and family in your area. @alzscot 18 Dementia in Scotland
Case studies
Some people have already kindly shared their stories about their own difficult conversations and we will be gathering more as the campaign progresses, as well as providing suggestions for getting those conversations started.
my mum. My parents are very ‘We didn’t have a private people and we didn’t ‘I knew there was something wrong want to interfere. It wasn’t until family discussion her symptoms became much with me and I kept asking questions about it. We worse that we realised it wasn’t just depression or stress. She until I found out what it was’ should have done.’ would go out and get lost; going to the corner shop and I was glad to get my diagnosis. It’s not that I was glad to If I had the chance to do this not know why she was there. have dementia. I was just so relieved to finally know what all again, I would definitely Or leave the house in her bare was wrong. It meant I could start doing something about it. have done things differently. feet. She would phone me Everyone with dementia should have that right I would have talked more repeatedly – 10 or 15 times a I started to notice memory problems in 2010, when I was openly with my parents day – and I admit I got angry 51. I was struggling to find words and had problems with my about what was happening, and short-tempered with her. vision. I also had problems with numbers and calculations. especially in the early stages. Something I am not proud of. At that time I was in a really stressful job and for I while I It might have meant that my We didn’t have a family thought I was experiencing symptoms of stress. mum got a diagnosis earlier, discussion about it. We should It took a long time for me to get a diagnosis; I had a lot of or that my dad would have have done. It would have tests and saw a lot of specialists before dementia was even considered and accepted help. been a difficult conversation, mentioned. I have Posterior Cortical Atrophy (an atypical My mother was 48 when but a really important one. variant of Alzheimer’s disease) and its unusual symptoms, we started to notice that Eventually I went to the GP along with my age, meant that I wasn’t diagnosed until something wasn’t quite with my mum and dad to mid-2013. right. She worked fulltime get some answers. My dad Looking back, I don’t think I would have done anything in telesales and was always wasn’t happy about it, but differently. I knew there was something wrong with me and I highly competent; good at we had to find out what was kept asking questions until I found out what it was. My family thinking on her feet. Then we going on. Eventually, and with and friends have been wonderful – they support me in so saw that she was starting to some reluctance from her GP, many ways and I’m glad I can talk openly to them. Nobody struggle. She was very house my mum received a formal should have to face dementia alone. Never be afraid to ask: proud; always ran a tight ship. diagnosis of Alzheimer’s ask people, ask questions and ask for help. That was the mum we were disease at the age of 54. used to, especially my dad. Families have their own Anne When things first began to ways of doing things; rules slip, we got a bit frustrated and we’ve always lived by, things impatient with her. At first we we don’t talk about. Dementia thought it might be anxiety, overwhelms all of that. You depression or stress. So did have to make time to listen her GP. and ensure others listen to you, My brother and I didn’t see as a family, to cope with it. it at the time, but my dad was really struggling to look after Diane Goldberg Difficult conversations Issue 85 – Winter 2014/15 19
I’m the youngest in a big family on holiday. I went to see Dad and the only boy. Even though to find him in a state because ‘Dad was worried I’m in my 40’s now with my he’d burnt the bottom out of own kids, my older sisters can the electric kettle by putting but hadn’t said still treat me like I’m their wee it on the cooker and then he’d anything. He brother. We’ve never really burnt his hand trying to tidy up been the kind of family to talk the mess. didn’t want me about problems. I didn’t find So I took him to the doctor out my mum had cancer until to get his hand seen to and and my sisters she had to go for an operation, took the chance to explain to to worry.’ although my oldest sister knew. the doctor some of the things So when I started noticing I was concerned about. It turns changes in my dad and tried to out Dad was worried too but talk to them about getting him hadn’t liked to say anything to go to the doctor, they said as he didn’t want me and my he was just getting older and sisters to worry. That started missing mum who’d died the the ball rolling and we found year before. out that Dad had been having Day to day, they have wee strokes which was what more to do with him than was causing his problems. me, especially my sister Moira He’s on medication to try and – getting his shopping and stop that happening again making meals for his freezer, but I wish I’d trusted my own tidying the house – that kind of instincts earlier and got us thing. I thought they probably to sit down as a family and had a better picture of how he discuss it openly. If I had the was than me, so I left it for a chance again, that’s what I’d do. while. I tried getting them to talk about it a few more times Ian but nobody wanted to listen and we were starting to fall out over it. But there was still More info something niggling in the back of my mind that things For more information, visit our weren’t right and it came to website at a head when Moira was away www.alzscot.org/conversation 20 Dementia in Scotland
Preserving memories through music
Sally Magnusson spoke to Alex Shedlock, reflecting on the impact of her book, Where Memories Go, a year after its publication
My mother was diagnosed try and hold on to my mother, night and day to engage all we can to continue this with dementia in 2009, and all the words would just her and help her memory trend. Where we go wrong although we noticed pour out. Eventually I realised as the dementia progressed. with everything in life is when problems with her memory that what I was writing – our She knew all the words far we stop seeing people as as early as 2001. Last year I story – had become more better than we ever did, even individuals and instead see published Where Memories than just about my mother at the end of her life. Music them as labels. See the person Go, a personal account of the or our family. The narrative was key to her care. After as a person and the right care impact of dementia on my I was writing could easily publishing Where Memories will follow on from there. family, and an examination of have been the narrative of so Go I found a lot of research what the illness means in our many others who have had showing that music that is Photo: Sally Magnusson, left, with society today. the same experience: trying personal to someone can be her mother and sisters. The reaction to the book to understand the disease, highly effective in recovering has been phenomenal. I dealing with health and care lucidity, memory, focus and wrote it in the hope that my services, and being with their communication. Following experience would resonate loved one right to the end. the model of the Music and with other people whose All of our inboxes have been Memory project in New York, families have been touched by overwhelmed with responses I set up Playlist for Life, to dementia – it actually opened from readers, and I am very help people with dementia the floodgates. Everyone has proud of this. engage with their families and their own unique story, but Perhaps the most tangible memories by using technology Where Memories Go provided outcome of publishing like iPods. More info a voice for people who may Where Memories Go is the The way people think not always be able to find the UK charity I founded: Playlist about dementia has started words for their own experience. for Life. Through my mother’s to shift in recent years. We Visit www.playlistforlife.org.uk Where Memories Go began dementia journey, my family are beginning to look at what as a private diary, almost as a discovered that music can be people with dementia can do, therapy for myself. I would sit very important in dementia not what they can’t. I’d like down alone and use words to care. My mother needed songs to see us, as a society, doing Where Memories Go Issue 85 – Winter 2014/15 21
Tell us about your ‘good read’ and win a copy of Where Memories Go!
If you were asked to By email: [email protected] recommend a book about By letter: I realised that what Membership Officer. Alzheimer dementia that you found Scotland, 22 Drumsheugh I was writing – our helpful or moving, what Gardens, Edinburgh, EH3 7RN would it be? story – had become Closing date for entries is 27 more than just Send us your recommendation February 2015. Winners will be to enter a draw for one of five selected based on their book about my mother paperback copies of Sally recommendation and prizes or our family. Magnusson’s book, ‘Where will be posted on the week Memories Go’! commencing 30 March 2015. It’s easy to enter the competition: just tell us about ‘Brave, compassionate, tender a book you read on dementia, and honest portrait’ - Metro whether you thought it was a good read or you found ‘I was bowled over by this book. it informative. Send your Intensely moving and inspiring’ recommendation, plus your – Joanna Lumley name and address, by post or email. Title your message ‘My ‘Moving, funny, warm’ – Mail on book recommendation’. Sunday Book review: Elizabeth Is Missing
A new mystery novel written disappearance is combined described on the book jacket. in the voice of a person with flashbacks to Maud’s I realised early on what had teenage years during World happened to Elizabeth and, with dementia War II, when her older sister although I wanted to know Author Emma Healey wrote Sukey also disappeared what had happened to Sukey, Elizabeth Is Missing based without a trace. the denoument was pretty on her personal experience Healey’s portrayal of Maud unbelievable. of dementia – both her as a person with dementia Healey recently won the grandmothers had the illness. is very convincing. Maud Costa first novel award 2014 She got the idea for the book constantly writes reminders, is for Elizabeth Is Missing, which from a conversation with her obsessed with buying tinned is available in hardback and paternal grandmother, who peaches and eating toast – paperback, and is published by announced one day that her while denying doing either Viking. friend was missing, when – and often has forgotten Healey knew she wasn’t. memories triggered by things Maureen Thom The story is told in the first in the present. Helen’s struggle Information Manager, person by Maud, a widow in to be patient with her mother, Alzheimer Scotland her 80s who lives alone with her frustration and worry, and the support of paid carers the sometimes humorous and her daughter Helen. exchanges between them is Maud is worried about her very believable. good friend Elizabeth who As an avid reader of has gone missing from her crime fiction, I found the home, and everyone gets ending disappointing and a irritated by Maud’s insistence bit predictable. It wasn’t the that Elizabeth has vanished. ‘riveting psychological thriller’ The mystery of Elizabeth’s or ‘gripping detective yarn’ 22 Dementia in Scotland
Alzheimer Scotland volunteers recognised at awards ceremony
On 7 November, the Alzheimer 1 2 Scotland Staff, Members’ and Volunteers’ Conference and Awards Ceremony took place at the Radisson Blu Hotel in Glasgow. The day-long event also included our annual general meeting. Around 250 people took part in the action-packed conference, which included a selection of workshops. The annual awards ceremony was a highlight of the day that provided an opportunity for us to recognise an array of initiatives from across the organisation. We were particularly pleased to 3 celebrate the work of the many volunteers who put in so much effort over the last year, helping ensure nobody goes through dementia alone. We have included a small selection of photos featuring our award- winning volunteers opposite.
1. Volunteer individual award – William Barr.
2. Staff individual – Catherine McKenzie
3. Volunteer team – South Aberdeenshire volunteer 4 5 team.
4. Volunteer team – Musical Memories volunteers.
5. Volunteer individual award – Lorna Walker.
6. Staff team - Dementia Advisors and Community Activity Organisers - Lanarkshire, Glasgow and East Dunbartonshire Services AGM 2014 Issue 85 – Winter 2014/15 23
6
Save the date! Alzheimer Scotland Annual Conference 1 June 2015 Crowne Plaza, Glasgow
Global progress; Local Impact
We are anticipating a full house for an excellent programme of International, UK and Scottish speakers.
For further event details, including online booking, visit www.alzscot.org/daw2015 from mid-February.
Making sure nobody faces dementia alone. News 24 Dementia in Scotland
New day centre opens in Bonnyrigg
In 2014, The Bungalow, our standards of care throughout. new day centre for people People with dementia were with dementia, opened involved at every stage of in Midlothian. Alzheimer the design process. This even Scotland has been providing included going on an outing day care services in nearby to Ikea to test out what size Eskbank since 1994, and our and shape of dining table they previous Service Manager, would like, which colours they Hazel Johnson, always had a would prefer for surfaces, and dream to relocate the service whether seats were low or to a bungalow. She searched high. We incorporated many tirelessly when our previous dementia-friendly ideas into lease expired, and found a the design, and our dream Staff, service users and guests at the opening. perfect location in Bonnyrigg. vision of the day care centre The Bungalow was has now been turned into a purchased in July 2013, and reality. The service operates six over the following six months days a week, and it is a delight we renovated it to create large to see the positive benefits a and small community rooms, dementia-friendly environment a kitchen, office, walk-in can bring. shower and conservatory. It was January 2014 by the time we moved in, and although the transition took a long time, our day care staff worked extra hard to maintain the highest Joining the dots for dementia care local dementia care is as aspect of this initiative is that interconnected as possible. We it’s not simply clinical. Many of want to join the dots for our the problems faced are social. GPs, so that when a person After diagnosis, we want to with dementia is in their ensure we can help the person consulting room, they have the and their family get the care confidence to point them in and support that they need. the direction of all available Before now, team-members support. These might include might have been unsure about local Alzheimer Scotland what’s available in their local services, social work support area for people with dementia. or a referral to a psychiatrist. ‘Dementia’ used to be a vague Building confidence is key, term, even at diagnosis. Now Henry Simmons at the Protected Learning Time event at so that everyone has all the we have the confidence to Murrayfield Stadium. information about a person be open about it, and not be In November, over 300 staff improve dementia care and with dementia and can draw embarrassed to push ahead from North West Edinburgh GP engagement independently, from the same pool of support.’ with offering support.’ practices met at Murrayfield while working collectively to Susan Duncan has been Tricia Donald added: Stadium to discuss ways of achieve better outcomes for the practice manager at ‘Everybody we speak to improving care for people with people with dementia. Stockbridge Health Centre’s about the programme has dementia. The 17 practices Dr Tricia Donald is a GP Blue Practice for 18 years. been incredibly proactive which participated are involved in Cramond, and the lead She chairs the network of and engaged, and we are in a unique contract which for the project: ‘A key goal practice managers involved looking forward to reviewing enables each of them to of the initiative is to ensure in the project: ‘An important the results.’ Fundraising toolkit Issue 85 – Winter 2014/15 25
Organise your own fundraising event. It’s as easy as 1, 2, 3!
Fundraising for Alzheimer Scotland has never been easier with our range of ‘create your own’ event posters, flyers and leaflets. Go online or contact our fundraising team, and we will provide you with everything you need to organise an event. You can personalise great-looking posters like the ones below with the date and details of your event, then print them to publicise your event!
Step 1 Step 2 Step 3
Choose what type of event Organise your event Hold the event and follow up you would like to run Create a master plan! This Prepare as much as possible Our website provides a lot may include assembling a beforehand, and enjoy the day! of options for events. Want team, finding a location, and Remember the last stages are to run a sporting day out? setting a date for the event. key: keep cash donations safe, A dance? A bake off? See our 10-step event plan track your fundraising, and online for more ideas. thank everyone who took part.
Back of the Come dine with us Karaoke net! night!
##date## ##title## ##date## ##title## ##date## ##title## ##time## ##description## ##time## ##description## ##time## ##description## ##location## ##location## ##location##
Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Recognised as a charity by the Office of the Scottish Charity Regulator, Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Recognised as a charity by the Office of the Scottish Charity Regulator, Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Recognised as a charity by the Office of the Scottish Charity Regulator, no. SC02231522 Drumsheugh Gardens, Edinburgh, EH3 7RN, 0131 243 1453, www.alzscot.org no. SC02231522 Drumsheugh Gardens, Edinburgh, EH3 7RN, 0131 243 1453, www.alzscot.org no. SC02231522 Drumsheugh Gardens, Edinburgh, EH3 7RN, 0131 243 1453, www.alzscot.org
To get started organising your own fundraising event, and for further hints and tips, visit my.alzscot.org. Our fundraising team are always happy to help. You can email [email protected] or call 0300 303 7777 World 26 Dementia in Scotland
Dementia Down Under Dementia news from Western Australia
Creating an them in a sensory garden, and if they would like to create a indigenous mosaic for the display. The sensory garden convention centre has great significance for the Noongar Alzheimer’s Australia’s people as it has a clear western service (WA) recently view to Perth’s Swan River. invited staff and club The demonstration garden members of the Moorditj will be a key exhibit at the Mia Day Centre in Western conference and the ladies Australia to participate in the who attend the service are development of an indigenous also making handmade clay sensory garden display. The bowls as sensory items. The display will be finished in time indigenous sensory garden for April’s ADI Conference will follow the principles of in Perth. The people with dementia-friendly design dementia who attend the and will include space for Moorditj Mia service were workshops during the ADI asked which images would conference, which will focus have the most meaning for on dementia-friendly design.
30th Alzheimer’s Disease International Conference
Perth, Australia will host the meeting will discuss: ‘Care, cure 30th Alzheimer’s Disease and the dementia experience – International conference a global challenge’. Early bird between 15 and 18 April. More registration ends on 7 February than a thousand delegates – be sure to plan your trip soon! – from health professionals and academics to people with More info dementia – are expected to attend the event, travelling For more information visit: World’s largest from over 60 countries. The www.adi2015.org dementia research centre announced New app aids communication The Queensland Brain Institute Alzheimer’s Australia WA is gesture-based communication. person-centred and can be (QBI), based at the University currently developing a touch- Research carried out in tailored to each individual user. of Queensland, has joined screen app for people with 2012 found that touch screen CommunicAid can be used in forces with the Chinese later stage dementia called tablets can be effective any environment, comes with Academy of Sciences’ Institute CommunicAid. The app communication tools for older simple step-by-step video of Biophysics (IBP) to create will help people who have adults. The new CommunicAid guides, and features a calendar the world’s largest dementia communication difficulties to App will enable users to create for medicines or important research centre. The centre will use a tablet to convey needs unique interactive prompting appointments. work to understand the causes or problems, such as indicating tools to communicate their of dementia in the ageing they are in pain. The app is needs and choices to others. population, and will use these an evolution of a 2010 paper- Trials in 2014 found the findings to inform dementia based kit called CommunicAid, app to be a success among diagnosis and therapy. The which enabled people with people with dementia in More info aim of this new international dementia and their carers community and residential partnership is to drive forward to create their own album care. CommunicAid has been For more information visit: new discoveries and develop of pictures and captions for designed to be completely www.communicaid.com.au new treatments for dementia. Anniversary Issue 85 – Winter 2014/15 27
Dumfries and Galloway tea dance celebrates 21 years’ success
On 5 November, our Dumfries became home to the region’s and Galloway service held a first Dementia Resource tea dance to celebrate its 21st Centre in Gordon Street, anniversary. 90 people put on Dumfries. their dancing shoes for the Julie Sinclair said, ‘I’d like event at the Cairndale Hotel. to thank all of the skilled Regional Manager Julie staff and volunteers who Sinclair has worked at the have contributed to our work service for all of the last 21 over the years. I would like years. During that time, it to mention two volunteers has supported and helped in particular: Mary Hairstains to improve the quality of and Jane Rafferty, who have life for many people with supported the service since dementia, their carers and 1995 and 1996 respectively. families. There are now 43 We’ve come a long way since volunteers supporting the the service opened. We know service, which brings together the number of people with day care, community activities, dementia will rise dramatically Dementia Advisors, and many and we’re here to ensure other elements. In 2013, it nobody faces dementia alone.’ Volunteers Jane Rafferty and Mary Hairstains photographed at the dance.
Put your best foot forward for Alzheimer Scotland!
We need brave-hearted runners to sign up for the Edinburgh Marathon Festival of Running and support our work helping the 88,000 people with dementia in Scotland, as well as their carers, partners and families. We want to make sure nobody faces dementia alone.
The Edinburgh Marathon Festival takes place on Saturday 30 and Sunday 31 May 2015.
To find out more and to join team Alzheimer Scotland, email [email protected] or call 0300 303 7777. 28 Dementia in Scotland
Help raise funds for our Dementia Assistance Dogs!
his spring we are life-changing experience for or 20 minutes, to make sure launching a new appeal the couples involved. he’s alright. Tto raise £30,000 to Kaspa often brings a small complete the pilot for our bag containing either medicine Dementia Assistance Dogs ‘Kaspa is like Ken’s or a bottle of water to Ken. project. The face of the appeal This will be useful as Ken’s is Alex 4Paws: the black-coated shadow – he’s dementia progresses, to remind dog with a very big heart. Alex never far away’ him to drink regularly through introduces the other two dogs, the day. Glenys says, ‘Kaspa’s Kaspa and Oscar, and shares Glenys is Ken’s carer, like two different dogs: he’s the fantastic support they and has watched the bond friendly and boisterous with provide for their owners. between Ken and Kaspa grow most people, but with Ken he’s Kaspa and Oscar have been since they were partnered a so gentle and patient.’ working as full-time Dementia year and a half ago. Kaspa Oscar helps Maureen in Assistance Dogs since mid- has become more and more many ways on a daily basis: 2013. They receive special attuned to Ken’s welfare, and waking her up every morning training to support people who Ken’s confidence has also and ensuring she takes her have a diagnosis of dementia grown. Kaspa’s presence makes medication. Maureen’s carer, and their carers. They assist him comfortable being at Frank, says, ‘Oscar is a very people with dementia to home on his own. playful dog, but he knows stay safe, remember things Kaspa has been trained to when he has his jacket on he is and feel more confident. bring Ken his medication and working. He reassures Maureen Dementia Assistance Dogs are to nudge Ken in response to and makes her feel more good company for carers too, certain alarms which remind comfortable – especially when ensuring they feel less isolated him to make food or put the we’re out and about.’ Oscar and have help at hand when kettle on. However, Kaspa is a watchful and comforting they need it. now also does lots of things presence by Maureen’s side Dementia Assistance for Ken that he was never when they leave the house. Dogs also encourage people trained to do! He brings his It’s not been all plain living with dementia and paper through from the hall sailing with Oscar, who can their carers to be more when it’s delivered every be mischievous. He chews active: to get out for walks, morning. When Ken’s walking his way through a new tennis visit the shops or go to down the stairs, Kaspa won’t ball every fortnight and has the hairdresser – everyday follow him until he’s reached been known to jump on fresh things that many of us take the bottom, so he won’t bed sheets with muddy paws! for granted. The pilot is knock Ken over on the way However, Frank is adamant that scheduled to end in spring down. If Ken takes a nap, he wouldn’t be able to manage 2015 and it has been a truly Kaspa will nudge him after 15 without Oscar in the home. Dementia Assistance Dogs Issue 85 – Winter 2014/15 29
‘Kaspa’s like two different dogs: he’s friendly and boisterous with most people, but with Ken he’s so gentle and patient.’
‘When Oscar More info Many of our readers will have has his jacket already received our appeal mailing from Alex 4Paws. If on, Maureen’s you haven’t, please donate at www.DementiaDog.org. You might wellbeing is first also have seen our fundraising and foremost’ on Facebook or Twitter: send us a Join the Dementia picture of your dog, tell us what Dog project on they’re thinking, and donate by Facebook texting ALEX04 £4 to 70070. We’ll Above: Maureen and Oscar be having a Dog of the Day for Far left and centre: Kaspa each day of the appeal, plus a Follow us on Twitter Left and right: Alex vote for the Top Dog at the end. @Dementiadog Fundraising 30 Dementia in Scotland
Target-smashing partnership with Lloyds Banking Group comes to an end
In January, Alzheimer Scotland celebrated two years of target- smashing partnership work with Lloyds Banking Group as their Charity of the Year. Staff and customers raised an incredible £6.3 million for Alzheimer’s Society and Alzheimer Scotland. Thanks to their incredible efforts, our Live Well partnership has been the most successful Lloyds Banking Group partnership to date, more than trebling the initial £2 million target. We also worked to raise awareness of dementia among Lloyds Banking Group dementia-friendly bank. Kamel continued to go above and proud of all they have achieved staff and customers, promoting Hothi, Head of Responsible beyond to make a difference together for such a deserving the Dementia Friends campaign Business Projects at Lloyds in our communities for people cause.’ Thank you to everyone and helping Bank of Scotland Banking Group, said: ‘Over the living with dementia and their at Lloyds Banking Group for become Scotland’s first last two years, colleagues have families. I hope colleagues feel your amazing support!
Thousands walk for dementia Last autumn, more than 2,500 nearly £29,000 raised by 439 carers, families and people walkers. Smaller but no less with dementia took part in 22 successful walks took place Alzheimer Scotland Memory across the length and breadth Walks across the country. Over of Scotland, from Dundee £100,000 was raised, and this to Loch Ness, and Glasgow incredible total will be boosted to Stornoway. We would like by a further £25,000 thanks to thank the thousands of to Gift Aid. Dalkeith Country people and their families who Park hosted the flagship supported the walks and made Memory Walk, which saw every event special Laughter and tears at Forget-me-not Ball
On 15 November, around Henry was diagnosed with 170 guests graced the vascular dementia four years George Hotel in Edinburgh ago. They received a standing for Alzheimer Scotland’s ovation from guests who were second Forget-me-not Ball. moved to tears. The evening’s In total, the glamorous event entertainment included Radio raised more than £5,000. Scotland DJ Bryan Burnett, The highlight was a moving the Singing Waiters, and speech by Henry Rankin, chair the band Big Night Out. We of the Scottish Dementia would like to thank generous Working Group, and his sponsors including Enterprise daughter Kirsty. They spoke Rent-A-Car, Baillie Gifford, very emotionally about how and the Publishing Bureau. they have managed to store Everyone who came along said up their memories and how it was a wonderful evening they have tried to enjoy every and they would love to attend moment of their lives since again next year! Western Isles Issue 85 – Winter 2014/15 31
News from the Western Isles
On New Year’s Day, 13 people including Alzheimer On New Year’s Scotland staff, volunteers and fundraisers ran into the waters Day, members of at Gress Beach on Lewis for staff, volunteers the annual dementia dip. Participants in the freezing and fundraisers dip included Marion MacInnes, Service Manager, and Sonja ran into the MacLeod, Branch Secretary. waters at Gress The event exceeded its £1,000 target, raising enough cash Beach on Lewis to fund the island’s dementia café for another year! One lady for the annual at the café said: ‘I heard all dementia dip. about it and I think you are all very brave to go in the sea at this time of year!’
Lewis man receives WWII campaign medals
Alexander Campbell from During World War II, Stornoway was recently Sandy served on ships which awarded the new Arctic Convoy transported essential wartime Star medal, along with several supplies through U-boat- other medals, for his service infested seas. The dangerous during World War II. 92-year- convoy routes included the old Alexander, known as Sandy, North Sea routes to allied is a regular at the Solas Centre. North Russia and voyages His medals were presented across the Atlantic with food by Lord Lieutenant Alexander and goods from America. These Matheson at a small ceremony ships were highly vulnerable to attended by his family. attack by German U-boats.
Providing day care improvement techniques and reminiscence therapy. There on the Isle of Lewis is also an innovative place- The Solas Day Centre is the priority list, whereby free Isle of Lewis’s dementia- spaces on any given day are specific day care service based automatically circulated to in Stornoway. It is run by people on a priority waiting list. Alzheimer Scotland staff and Marion MacInnes, Service funded by the local authority. Manager, said: ‘We work very The service currently supports closely with our colleagues 24 people with dementia and in health and social care to operates six days a week. maximise the support available Staff at the Solas Day to people living with dementia Centre enable local people and their carers, partners and to live well with dementia, as families.’ The Care Inspectorate well as supporting their carers recently gave the Solas Day and families. They provide Centre grade 5 and 6 for named ‘key workers’ and offer quality standards – the two activities including memory highest possible scores. Dates for your diary
Dates for your diary
Whether you are interested in dancing the night away, taking part in a 5k run, listening to some excellent music, or attending a conference, there is an event coming up to suit you over the next few months. Visit our website www.alzscot.org for more information or call our Events Hotline on 0300 303 7777 if you would like to know more about any of our physical fundraising events.
March 2015 July 2015
Sun 15 March Adidas Silverstone Half Marathon 3–5 July West Highland Way Trek
April 2015 August 2015
Sun 12 April Ladies Lunch, Alona Sun 30 August Women’s Running 10k, Strathclyde Hotel, Strathclyde Park (www.alzscot.org/lunch) Sat 18 April Zipslide across the Clyde September 2015 Sun 19 April Great Edinburgh Run Sun 26 April Virgin London Marathon Sun 6 Sept Pedal for Scotland Tues 28 April Members’ Advisory Forum, Glasgow Sun 13 Sept Bupa Great North Run (see p.6) Sat 19 Sept Scottish Half Marathon, Edinburgh Mon 21 Sept World Alzheimer’s Day Sun 27 Sept Berlin Marathon May 2015 Sun 27 Sept Loch Ness Marathon Festival
Sat 9 May Colour Me Rad 5k, Edinburgh Sun 17 May Great Women’s 10K, Glasgow October 2015 Sun 17 May City of Aberdeen Baker Hughes 10k 20–24 May London to Paris Bike Ride Sun 4 October Bank of Scotland Great Scottish Run, Sun 25 May Bupa London 10k Glasgow 30–31 May Edinburgh Marathon Festival (EMF) Sat 10 October Big Fun Run 5k, Glasgow of Running Sun 11 October Big Fun Run 5k, Edinburgh Sun 18 October Forth Rail Abseil June 2015
Mon 1 June Dementia Awareness Week Conference (see p.23) Sat 6 June Colour Me Rad 5k, Aberdeen Sun 7 June Rotary Club of South Queensferry Forth Rail Abseil Alzheimer Scotland – Action on Dementia is a company limited Sat 13 June Isle of Skye Half Marathon by guarantee, registered in Scotland 149069. Registered Office: 22 19–21 June Ben Nevis Trek Drumsheugh Gardens, Edinburgh EH3 7RN. It is recognised as a charity by the Office of the Scottish Charity Regulator, no. SC022315. 20–21 June Tough Mudder, Drumlanrig Castle 20–21 June Edinburgh Night Ride TBC Challenge Scotland (Summer) Dementia in Scotland is Events - published by: Walk for Scotland Phone: 0131 243 1453 Alzheimer Scotland Email: [email protected] Run for Scotland 22 Drumsheugh Gardens Website: www.alzscot.org Toddle for Scotland Edinburgh Facebook: AlzheimerScotland EH3 7RN Twitter: @alzscot