Annual Review 2012-13

Alzheimer Scotland Annual Review 2012–13

Making sure no one goes through dementia on their own. Alzheimer Scotland believes that no one should go through dementia on their own. Our aims are:

• to be the national and local voice of people with dementia and their carers in Scotland • to improve public policies for the benefit of people with dementia and their carers • to provide high quality services for people with dementia • to provide high quality services for the carers of people with dementia

We are supported in these aims by over 5,000 members and many more supporters who campaign for us, volunteer, raise funds and donate their time.

From the first time we entered the building to get It has helped me information about the services to join the dots to the present day I have been so impressed by the in a fragmented welcome we have been given. world out there. Carer Carer

I enjoy the patter Some responses and reminiscing. to our annual Person with dementia customer satisfaction survey, carried out between April 2012

The advice I have received has and March 2013. helped me to understand my condition and will hopefully help me to continue to enjoy a good quality of life. I like it that carers stay Person with dementia and don’t dash off. Person with dementia Contents Our Council and Executive ...... 2 Convener’s introduction ...... 3 Working in partnership ...... 5 Our people ...... 6 How we’ve made a difference ...... 8 Policy and campaigning ...... 10 Delivering quality services ...... 12 Making self-directed support a reality ...... 17 Information and outreach ...... 18 Providing advice and support ...... 20 Raising awareness ...... 22 Fundraising ...... 23 Some facts and fi gures ...... 26 Thank you ...... 28 Looking forward ...... 30 Our fi nances ...... 33

It’s great. I can do things I like doing. Person with dementia Our Council and Executive

John Laurie Arlene Chalmers Ian Bell Findlay McQuarrie (Convener) (Secretary) (Treasurer) (Vice Convener)

Neill Anderson Barbara Barnes Gillian Boardman Rose Mary Bowes (resigned April 2013) Caroline Brown Noni Cobban Jim Fry Sheila Hardie Lynda Hogg Agnes Houston Dianne Howieson Alan Jacques Patricia Laughlin David McClements Christine McGregor Barbara Mitchelmore Patricia Payne Douglas Philips Christine Ross John Starr Kenneth Valentine

Henry Simmons, Kate Fearnley, Kevin Craik, Chief Executive Deputy Chief Executive Director of Finance & Corporate Resources

2 Convener’s introduction

Over the last year Alzheimer provided funding for a Dementia Scotland has contributed Nurse Consultant or Specialist to a wide range of policy in every NHS Board. We are achievements that are bringing continuing to work with the tangible benefits to people with University of the West of Scotland dementia, their families and to train Dementia Champions, carers. We have seen significant with over 300 champions now John Laurie, progress in the implementation working within the NHS. 200 Convener of the National Dementia Strategy, Dementia Ambassadors have National Dementia Standards also been trained, and an and the Promoting Excellence independent review of their framework. We are very proud impact is currently underway. of our contribution to these We’ve also established a achievements. Centre for Policy and Practice in partnership with the University of At a national level, Scotland the West of Scotland. has made good progress in delivering the aims of its first Dementia Awareness Week is National Dementia Strategy. The an important annual focus for introduction of the post-diagnostic us, and the awareness-raising support guarantee from April work we did around this was a 2013 is another major landmark great success. We continue to in the Strategy’s progress. be committed to providing more Alzheimer Scotland’s 5 Pillar personalised care for people model of support will be integral with dementia, and made plans to delivering the new guarantee, for our second conference as will the network of newly on self-directed support, in appointed Link Workers. September 2013.

The Second National Dementia Our initiative to draw together the Strategy will focus on providing dementia research community in “Over 300 Dementia Champions are now working within the NHS.”

ongoing support for people with Scotland continues to progress dementia and their families. Our well. The aim is to encourage 8 Pillars model of support has collaboration and capacity, and to been developed with this in mind, attract major funding. The Scottish and is currently being piloted. We Dementia Research Consortium hope to see it rolled out across will be launched later this year Scotland. and has the potential to greatly enhance social and medical In partnership with the Scottish research in Scotland. Government, we have now 3 Convener’s introduction ��

Although the economic climate contributions we could not fund has remained challenging, we’ve our objectives. As in previous continued to work successfully years the events organised by with our public sector partners. our fundraising team have been Despite budgetary constraints, outstanding and their success in several of our services have raising much-needed funds for continued to grow. I would like our work has been remarkable. to thank our staff and volunteers who provide such high quality Alzheimer Scotland is a significant services and help us deliver organisation in terms of its size excellent value for money. and complexity. We prepare regular three-year strategic Our Dementia Resource plans to make sure we meet our Centres bring dementia out of objectives. I’m happy to report that the shadows and on to local the vast majority of the objectives high streets, helping to raise included in the 2010–2013 awareness and dispel stigma. strategic plan have been met, and We now have 12 Resource later this year we will publish a Centres in operation and we new plan covering 2013–2016. have invested in a further four During the year we also drew up “I’d like to thank our staff and volunteers who provide such high quality services.”

centres (in Motherwell, Clydebank, carefully considered changes to Kilmarnock and Stranraer) that our governance arrangements. will come into operation early I wish to thank all of my next year. Our long-term goal is colleagues on our Council for their to have a centre in every large commitment and assistance, as town in Scotland. well as the senior staff.

It’s been said before, but This has been a very good fundraising is an essential part of year for Alzheimer Scotland any charity’s work. Our fundraising and I look forward to next year efforts have been many, varied with confidence. I believe that and highly innovative at times. I’d with the continued support of like to thank all those who have our members, partners and supported this: the organisers, supporters we will continue to volunteers and most of all the improve the experience of people participants, without whose with dementia and their carers.

4 finding, testing & sharing domestic products to help people with dementia living at home finding, testing & sharing domestic products to help people with dementia living at home finding, testing & sharing We believe that domestic by identifying simple products that make real differences to peoples products to help people independence and sharing these products within with dementiathe dementia living community, at home we can make real differences to the day to day lives of carers and people with dementia. (particularly in the We early believe stages) that by identifying simple products that make real differences to peoples We independencework with people and with sharing Dementia these andproducts their carerswithin to identify the dementiaand community,develop products we can that make make real a differences real difference to the to daily tasks. day to day lives of carers and people with dementia. (particularly Products are tested by families over a three month period and in the We early believe stages) that by identifying simple products feedback is shared on our website to help others make better that make real differences to peoples buying decisions. Working in partnership We work independence with people and with sharing Dementia these and products their carers within to identify the dementiaand developcommunity, products we can that make make real a differencesreal difference to the to daily tasks. We deliver feedback to manufacturers to help them improve their day to day lives of carers and people with dementia. (particularly product, packaging and instructions for those with Dementia We support the Scottish Dementia Wein the work early closelyProducts stages) with a rangeare tested of by families over a three month period and Working Group and National academic institutionsfeedback and is partners,shared on our website to help others make better Dementia Carers Action Network, ensuring that the next generationThe project is working towards a dementia friendly kite mark, We work buyingwith people decisions. with Dementia and their carers to identify enabling their members to speak of health and social carewhich staff have can be used to highlight products that are found to deliver and develop products that make a real difference to daily tasks. out on behalf of others living with the skills needed to carereal for people benefit for our testers. dementia. We’ve also built strong with dementia.We Thesedeliver include feedback the to manufacturers to help them improve their relationships with a wide range of UniversitiesProducts product,ofare Edinburgh, tested packaging by Stirling families and over instructions a three month for those period with and Dementia We also aim to display samples of the effective products, in other organisations and partners. andfeedback the West is of shared Scotland on (UWS). our website to help others make better Our Centre forThe policy project andresource practice is working is centres towards around a dementia the country. friendly These kite centres mark, will allow We work with Alzheimer Europe buying decisions. a partnershipwhich with UWS. canfamilies be used to to handle highlight and products try a range that of are product found solutions to deliver and if and Alzheimer’s Disease necessary, use the trained staff to help them set up the more International to inform and OtherWe deliver key partnersreal feedback benefit include: tofor manufacturers our testers. to help them improve their complex items such as phones. infl uence policy at a European product, packaging and instructions for those with Dementia and international level. We’ve also • Coalition Weof Care also and aim Support to display samples of the effective products, in forged strong links with colleagues TheProviders projectresource in isScotland working centresThe towards project around hasa dementia the a pilot country. website friendly These in kite operation, centres mark, will is allowmoving towards a in a range of countries, including • The Alliance (formerly Long Term which canfamilies be used to publicto handle highlight phase and productstry 2 website, a range that withof areproduct full found usability solutions to deliver testing and on if all products Norway and Ireland. Conditions Alliance Scotland) real benefitnecessary, for our totesters. use complement the trained thestaff user to helpfeedback them andset upvideo the productmore demon- • NHS Education for Scotlandstrations. (NES) We have an ongoing dialogue • Scottish Socialcomplex Services items Council such as phones. with the Scottish Government, with We(SSSC) also aim to display samples of the effective products, in whom we have helped develop • resourceNHS boards centresThe project aroundWe has are thea pilotcollaborating country. website These in withoperation, centres West will isLothian moving allow Council towards to a the National Dementia Strategy. • familiesNHS Health topublic handle Scotland phase andidentify try2 website, a rangemore with ofproducts product full usability throughsolutions testing sharing and on if all the products project with During the last year, we have • Dogs for tothe complement Disabledtheir dementiathe user feedback cafe network. and video product demon- worked with the government • necessary,Guide Dogs use for thethe Blind trained staff to help them set up the more on a range of projects including • complexGlasgow itemsstrations. School suchof Art as phones. arranging the Dementia Dialogue • The Scottish Football Museum events and co-funding the • TheThe project MemoryWe has Box are aNetwork collaboratingpilot websitewww.dementiacircle.co.uk in with operation, West Lothianis moving Council towards to a Dementia Nurse network. public phaseidentify 2 website, more withproducts full usability through testing sharing on all the products project with to complementtheir dementia the user feedback cafe network. and video product demon- Dementia Circle is an innovativestrations. project that was extended this year with additional www.dementiacircle.co.uk funding from West Lothian Council.We are collaborating with West Lothian Council to identify more products through sharing the project with nding testing sharing It fi nds and tests newtheir products dementia that can cafe help network. people with dementia stay independent for longer inwww.dementiacircle.co.uk their own homes. They’re tried out by families at home, with feedback shared on the website to help nding testing sharing others make better buying decisions.

Find out more by visiting: www.dementiacircle.co.uk nding testing sharing 5 Our people

Achieving our goals is only level (as a minimum) on the possible thanks to the dedication Promoting Excellence framework. of the many talented people who During the year we began our work for us. Our 992 employees Enhanced training programme are supported by 677 active for managers, Dementia Advisors volunteers who donate their and Link Workers. time and share their expertise. Working together means we can We’ve continued to expand maximise our impact, supporting our Staff Representative Group, more people with dementia, increasing the number of their families and carers across representatives to an average Scotland. of two per region. The group feeds back the views of staff to This year we continued to invest us, ensuring that their opinions in our people to make sure they are heard and acted on. This is have the right skills to do their job. especially important because we We want everyone who works work over such a wide area. for us to be trained to Skilled

“It is a tribute to the hard work of all our staff and volunteers that Alzheimer Scotland was the proud recipient of the 2012 SCVO Charity of the Year Award.”

Accolades

The fi rst Scottish Dementia Awards Council) and Best Community were held in September 2012 as Support Initiative (in partnership a partnership between Alzheimer with East Renfrewshire CHCP). Scotland, NHS Education for The East Renfrewshire Facing Scotland, NHS Health Scotland Dementia Together project was and the Scottish Social Services also a fi nalist in the 2012 Care Council. They attracted almost 130 Accolades. applications across six categories. Both these projects refl ect our We were honoured to receive commitment to partnership awards in two categories: Most working and our belief that Innovative Partnership (with delivering the best outcomes for NHS Highland and Argyll & Bute people with dementia involves

6 ...... Our people “We’re committed to working with volunteers. They bring invaluable experience to all areas of our work.”

building services that cross award, dedicated it to all the traditional boundaries between people with dementia, their health and social care, and bring partners, families and carers who together the public sector with Alzheimer Scotland supports, and not-for-profi t organisations. who support Alzheimer Scotland.

On 15 June 2012 Alzheimer In October 2012, we were Scotland was the proud recipient honoured when the corporate of the Scottish Council for team won the prestigious Scottish Voluntary Organisations (SCVO) Institute of Fundraising Award for Charity of the Year Award. Henry ‘Best Partnership with a Corporate’ Simmons, who accepted the for our relationship with Tesco.

“The recognition and respect for our work that these accolades represent is a refl ection of many years of committed campaigning and service provision.”

Henry Simmons

Winners at the Scottish Dementia Awards 2012: Most Innovative Partnership: Argyll & Bute Best Community Support Initiative: Facing Dementia Teams – NHS Highland, Argyll & Dementia Together Post Diagnostic Project – Bute Council & Alzheimer Scotland. Alzheimer Scotland & East Renfrewshire CHCP.

7 How we’ve made a difference

“Dementia is everyone’s business” The Brain Tissue Bank: building a research database for the future We’ve contributed to many aspects of the Government’s Scientists only have a limited understanding Dementia Demonstrator sites of how dementia affects our brains. More initiative. The three pilot sites are research is vital, and one potential avenue exploring ways of redesigning involves studying samples of brain tissue. Doing services for people with dementia this means collecting and storing thousands of to ensure resources have the samples so they can be analysed over a number maximum impact. of years to test new theories as they emerge.

In Motherwell we’ve been a We have set up a Brain Tissue Bank as part of partner in the Dementia Friendly the Alzheimer Scotland Dementia Research Communities project. Working Centre, a partnership with the University of with the health board and Edinburgh. Many people have already elected to local authority, we’ve helped provide a brain tissue sample after their death to make Motherwell town centre help scientists understand dementia better. a dementia-friendly community. Using the slogan ‘Dementia Scientifi c research takes many years to translate is everyone’s business’, we into improvements in treatment and care, but produced educational materials we believe it’s important to make this investment. for local business, and also held Alongside our core activities to support people workshops for staff. The result is with dementia, their families and carers in the much greater awareness of the present, we’re committed to supporting the challenges faced by people with research that could improve outcomes for the dementia, and a real drive within next generation of people who are diagnosed. the community to support them.

Creative dance 8 project, Dundee ...... How we’ve made a difference

Our services help people live well with A carer asked if dementia, enabling them to stay connected, I could help her or reconnect, with their communities and dad rekindle his carry on doing the love of fi shing. things they enjoy. This example was provided by Helen Smith, To begin with he was reluctant, Community Activity but I persevered gently. Organiser working from the Dumfries After six months we arranged a day to Dementia Resource go to the fi shery with a picnic. Centre. She organises group activities like Mr C caught four fi sh. He was just so overcome ‘crafty fi ngers’, knitting, and delighted. He couldn’t wait to share art and gardening, as the events of the day with his daughter. well as tailored one-to- one activities enabling a person with a special Now he travels to the interest to continue doing something that fi shery on his own by they enjoy. public transport.

He’s well known to the regulars there and they look out for him.

When I last spoke to him, he had done so much fi shing that his neighbours had more fi sh than they knew what to do with!

“Our Dundee service ran a 10-week a motorbike and combing his hair to the creative dance project for people with theme from ‘Shaft’. Another man, who had dementia in partnership with two local arts used a walking stick and was reluctant organisations. The fi nale was a celebratory to come along to begin with, discovered event with dances that the whole group he really enjoyed dancing. It helped so performed together. Then everyone much with his balance that he doesn’t use performed their own expressive dance. It his stick any more, And now he dances was the most powerful thing I’ve ever been with his wife at events like weddings – involved in. Everyone’s inhibitions faded something he’d never done before.” away and even shy people were strutting their stuff. One man’s dance involved riding Gabrielle Colston, Service Manager, Dundee 9 Policy and campaigning

Our policy work made a big action plan for acute hospitals. difference in key areas of the This will be included in the new National Dementia Strategy, Dementia Strategy. and a real contribution to better outcomes for people with Four focuses for our policy work dementia, their partners, families this year were: and carers. • strengthening our network of In a world first, the Scottish Alzheimer Scotland dementia Government’s new NHS HEAT* nurse consultants target for post-diagnostic support • supporting the Dementia came into effect in April 2013. It’s Champions programme based on our 5 Pillar model, and • using the Promoting Excellence will offer every person diagnosed framework to improve care “Our manifesto for the local elections in May made sure the views of people with dementia were heard.”

with dementia at least a year of • ensuring the Standards of support from a named link worker. Care for Dementia make a positive impact Listening to people’s experiences and opinions is really important In partnership with the Scottish to us. It’s what all our policy work Dementia Working Group is based on. Between October (SDWG) and our National and January we talked to over Dementia Carers Action Network 500 people with dementia, carers (NDCAN), we helped shape and organisations at Dementia the development of the new Dialogue events across Scotland, Dementia Strategy. in partnership with the Scottish Government. What we heard Ensuring that health and social helped inform the Government’s care services are more joined National Dementia Strategy for up is a key focus for us, and in 2013/16. September we published our 8 Pillar model of community People continued to tell us support. Called ‘Delivering about poor experiences in integrated dementia care’, this is acute hospitals so we held talks a road map for more joined up with the Cabinet Secretary and health and social care services. successfully lobbied for a 10 point We worked with the Scottish

10 ...... Policy and campaigning

The new HEAT target means everyone DEMENTIA diagnosed with dementia is now entitled HEAT to a minimum of one TARGET year’s post-diagnostic IS WORLD support from a named link worker. FIRST! It’s a world fi rst!

Government, COSLA and ADSW We shared our expertise by to shape how the 8 Pillars will be contributing to steering groups on piloted across Scotland. a wide range of topics, including self-directed support and the new It’s vital that politicians continue to national care home contract. recognise dementia as a priority, and our manifesto for the local Collectively, our policy and government elections in May campaigning work has made made sure the views of people sure that the needs of people with with dementia, their families and dementia have been recognised carers were heard. We were as widely as possible across our heartened that 342 politicians national institutions. signed our pledge to make * Health improvement, Effi ciency dementia a local priority. & governance, Access to services, Treatment appropriate to individuals

Dementia Dialogue event

Our Dementia Dialogue events enabled over 500 people to have their say on the development of the 2013–2016 National Dementia Strategy. Dementia Dialogue event, 11 Paisley, 10 January 2013 Delivering quality services

Partners in post- our local services, development, diagnostic support fundraising and policy teams.

A key focus over the last year has Maintaining and been making post-diagnostic developing services support more widely available in the run-up to the introduction of Despite the continuing squeeze the new HEAT target for the NHS. on local authority budgets, we’ve seen relatively few cuts to our The Change Fund is helping health services, and in some cases boards and local authorities we’ve even secured small funding prepare for the new post- increases. Many local authorities diagnostic support guarantee. We are looking at alternatives to were pleased that many local retendering services and we’ve authorities and NHS boards chose worked with some on more open to develop their post-diagnostic forms of negotiation. It’s a mixed work in partnership with us. picture across the country but a generally positive one that shows By the end of the year we had dementia is an important local confirmed 44 Dementia Link priority in many areas. Worker posts. Most are an integral part of local teams More personalisation alongside health and social work staff, and they are making a Our services are continuing to real impact in supporting people evolve, with a strong focus on with dementia and their carers personalisation. This means more following diagnosis. To make sure people with dementia can choose they’re appropriately trained, we and tailor the type of support they launched a specialised induction want, rather than accepting one- programme, and provide them size-fits-all services. Our one-to- with regular updates. one support was up by 6%, mostly due to people buying services The link worker posts are an from us directly. A significant 20% example of how we’re achieving of one-to-one support is now self- our goal of being a partner, commissioned, up a third rather than just a service provider. Working in partnership with Our dementia Link Workers provide local authorities, the NHS and 5 pillars of support: the government, means we can make our resources go further. • to understand and come to terms with the This has been significantly helped diagnosis and manage the symptoms through new synergies between • to meet other people with dementia and their partners and families • to keep community connections and make new ones • to plan for future decision-making 12 • to plan for future care ...... Delivering quality services

“We were delighted to see a big increase in people using self-directed support to purchase services”

from last year. We launched new our services in two areas and personalised services in several relaunched them at the start of areas as well as extending the year. In East Ayrshire, we several existing services. now provide a support service for younger people with dementia, We saw a jump of around a third community-based support and in people using their own money post-diagnostic support instead to buy services from us. And we of day care. In Moray we’re were delighted to see an even delivering an innovative dementia- bigger increase in people using specialist reablement pilot. self-directed support to purchase services. It’s now increasingly Focused on quality common for a person with dementia to be given a budget We’re proud of the quality of our by their local authority to choose services, which continue to be and buy their own support. The rated highly by both the Care amount of self-directed support Inspectorate and the people provided increased by 68% in who use them, thanks to the the last year alone. We’ve been hard work of our skilled and leaders in promoting self-directed motivated staff. Twelve of our support for people with dementia services were inspected by the for some years now, and are Care Inspectorate in 2012. Two looking forward to even greater thirds of the grades we received take-up once the new legislation were 5 (very good) and 8% were is in place. 6 (excellent). We were particularly pleased that our own customer We delivered 7% less day care satisfaction survey, which this year. With our local authority gathered the opinions of 409 partners we radically redesigned people with dementia 13 Delivering quality services ......

and 831 carers, were so positive. instance, the number of referrals Using a scale similar to the Care received by the Dementia Advisor Inspectorate’s, 96% of people in Dumfries almost doubled in the with dementia rated us ‘good or six months following the opening above’, along with 92% of carers. of the Centre.

Dementia Resource Centres Continuing to innovate

This year we’ve opened more Providing quality services means Dementia Resource Centres, not standing still, and being increasing our visibility on high willing to innovate. Over the streets across Scotland. The past 12 months we’ve launched centres provide welcoming, some exciting new creative versatile spaces that are open to collaborations. We’re currently anyone looking for information or piloting a web-based person- support about dementia. They’re centred planning tool, and in helping to raise the profi le of January we launched a project dementia and tackle stigma. with Glasgow School of Art and Glasgow Caledonian University to Over the last 12 months we’ve develop dementia-related smart bought new properties in phone apps. Motherwell, Clydebank and Kilmarnock, and converted a Dementia Circle is an exciting rented shop front in Stranraer. We new project that’s enabling ended the year with 12 Resource people with dementia and carers Centres in operation. They’re to test products that can make signifi cantly increasing our a real differences to staying prominence in local communities independent at home. New and improving access to funding from West Lothian Council information and support. is helping to extend the scope of the project. Dementia Advisors based in new Resource Centres are seeing signifi cant increases in the number of enquiries. For “We’ve opened more Dementia Resource Centres, increasing our visibility on high streets

Opening of Highland Dementia Resource 14 across Scotland.” Centre in Inverness, 8 August 2012...... Delivering quality services

At home with Oscar (far left) and Kaspa (left), who are helping pilot the Dementia Dogs project.

Dementia Dogs Sharing our expertise

The Dementia Dog research Our new external training project is an exciting partnership business continued to grow, involving Dogs for the Disabled, delivering 52 courses to 24 Guide Dogs for the Blind and customers, approximately twice Glasgow School of Art. Although as many as the previous year. still only at pilot stage, it has fi rmly We’re developing a section of our captured the public’s imagination new website for external training, and by the end of the year which will improve our reach. two dementia dogs had been matched to people with dementia. This year we delivered some The project hopes to demonstrate of the key training initiatives that trained dogs can support under the Promoting Excellence routines for people with dementia, knowledge and skills framework, as well as provide reminders with our partners. A third group of and act as emotional anchors. Dementia Champions graduated Dementia dogs also have the and are acting as change agents potential to reduce isolation and for acute care. There are now over provide support to carers. 300 trained Champions.

Knowing that I can talk to a professional at short notice can help to prevent a crisis situation developing Carer

15 Delivering quality services ��

Quality day care services

As well as developing new types When I first met of services such as self-directed support, we recognise the Helen she was anxious, importance of traditional day care services and continue to invest tearful and had heavily in these. Our day care is tailored to reflect a cross-section panic attacks. of interests, and our experience shows that even those people Her father had also had dementia and who are reserved to begin with she’d cared for him at home. This had often find an activity that they left her frightened for her own future. enjoy and find stimulating. During the year, we provided an average I helped Helen understand that she has of 970 day care sessions a week. a lot of living to do. We found ways to help her to cope with her symptoms We also offered a huge variety and the emotional challenges. of therapeutic and peer support activities right across Scotland. Helen is now a regular at the local These included dementia cafés, dementia cafés and her husband football reminiscence groups, and often goes along with her. She’s made arts and crafts groups. Many of friends there and has been able to these take place in our Dementia give very good advice to others. Resource Centres, which provide a ‘safe space’ for people with Post-diagnostic support with Helen dementia, their families and carers to relax, have fun, or is ongoing but she’s now embracing discuss worries. her future. She’s grown in confidence and her panic attacks have stopped. “Knit & Natter Good post-diagnostic support brings people living means people are better informed and better equipped to in care homes face the challenges of their illness. It puts them in control and gives together with those them choices. As the example above illustrates, our Link Workers in the community. build supportive relationships that tap into natural sources of We’ve seen many support including family, friends and community, making a real new friendships difference to how people live with develop among dementia after their diagnosis. 16 group members.” Making self-directed support a reality

We’ve long campaigned for the budget they can be specific people using services to have about exactly what they want, choice and control over those as well as asking for services at services. We previously showed, traditionally unconventional times with our innovative pilot project, like evenings and weekends. how effective this can be for people with dementia, who in ‘A lot of the support we offer is the past have rarely had this geared around recreational opportunity. We’re pleased that activities like going to groups in 2014 the new Self-Directed or sports matches. To respond Support (SDS) Act will give to that successfully we’ve put everyone this choice. a lot of effort and focus into recruiting support workers who Our own services are adapting are available and happy to work too. Our service in East unconventional hours. I think our Renfrewshire has illustrated how service today demonstrates how people can come to us direct to successful this has been. We offer commission their own services. anything from a fairly standard one-hour morning visit to assist After a local authority contract someone to get up, get dressed ended, Derek Oliver, our Project and have breakfast, to three or Worker, started letting people with four hour appointments for a dementia and their families know trip down the coast or to go and that a new type of support was watch a football or rugby match. available. He explains: ‘One man who had been a ‘Since then we’ve noticed a real keen golfer and had become transformation in service delivery. quite socially isolated following Under the local authority contract his diagnosis now purchases support was typically offered on support to enable him to play golf. weekdays between 9am and His support worker has similar 5pm, but with SDS people have interests and takes him golfing genuine choice and control over one or two times a week. It’s a the services they receive. Also, great example of the power of because they’re in control of self-directed support.’

“With SDS people have genuine choice and control over the

services they receive.” 17 Information and outreach

Providing relevant, accurate increasingly important for getting information is a vital part of our information out to the public, work. We achieve this through and as a way of enabling our our website, e-newsletters, social supporters to communicate with media and the wide range of us. By the end of the year we had printed publications we produce. over 4,000 likes on Facebook and During the year our two mobile 6,000 followers on Twitter. information vehicles also travelled widely around Scotland taking We sent out our e-newsletter our message to places we might every two months and now otherwise not have reached. circulate over 15,000 copies. People who come along to our Many more people are using our events or visit our information website to find the information stands are invited to sign up so they need, and over the last year we can stay in touch with them. the number of visits increased by a third. During the year we Our Freephone 24 hour Dementia worked on an extensive behind- Helpline continues to provide a the-scenes redevelopment of the lifeline for people with dementia site, making it easier to navigate and their partners, families and and modernising the design. The carers. Although calls were new site was launched in June down slightly to 4,889, our newly 2013. We saw a big jump in introduced E-Helpline service visitors to our Charter of Rights responded to another 168 website, also up by a third on enquiries and use of this service the previous year, and plans is growing steadily. Most callers are underway to develop a new are carers and family members website for the Scottish Dementia who accounted for three quarters Working Group. of the calls. We also advised over 250 people who had a diagnosis We’re now using social media of dementia or were worried channels like Facebook and about their memory. Almost half Twitter more and more. They’re the calls to the Dementia Helpline

“Visits to our website, www.alzscot.org were up by a 18 third this year.” ...... Information and outreach

On the road with one of our mobile information vehicles. “We’re aiming to reach 10,000 people across Scotland with our Dementia Community Roadshow by October 2014.”

came in outside offi ce hours and Dumfries and Galloway. we remain committed to offering a 24-hour service. New publications this year included a series of Carers’ As well as using new Resource Guides covering eight communication channels areas across the Highlands like social media, our printed and Argyll & Bute. They were publications continue to be in produced as part of a BIG Lottery great demand, and this year we funded research project. Our revised and updated many of former Policy Director, Jan Killeen, them. We distribute thousands produced a guide on powers of of publications from our mobile attorney and guardianship called information vehicles, and they’re ‘Dementia: making decisions’, also important resources for along with a research summary our 31 Dementia Advisors. The on the same subject. These were Dementia Nurses and Dementia funded by the Nuffi eld Foundation. Champions use them widely to We also produced or revised raise awareness in their wards ‘Useful contacts’ lists for 16 local and hospitals. authority areas being visited by our information vehicles. Our staff teams are delivering increasing numbers of Our guide to the standards of awareness raising sessions, and care for dementia in Scotland was this year we welcomed over distributed to every care home in 1,600 people aboard our mobile the country together with a poster- information vehicles, which sized copy of the Charter of Rights travelled the length and breadth for people with dementia and of the country from Shetland to their carers in Scotland. 19 Providing advice and support

Dementia Advisors They also work creatively within local communities, developing Our Dementia Advisor network is and supporting a wide range now at full scale, with 31 full and of initiatives. They’ve formed part-time posts covering 28 local partnerships with the police and authorities. fi re services, schools, housing associations and sports centres. The Dementia Advisors took 2,867 referrals last year, using a light- In our second Dementia Advisor touch approach to help people satisfaction survey, 98% rated with dementia, their families the service as good, very good or and carers access support. excellent, up from 95% last year.

Referrals double after new Dementia Advisors resource centre opens organise events When our new resource centre opened in Dumfries, Mandy including dementia Pool, the local Dementia Advisor, started getting many more calls: cafés, football ‘Most of the people I see refer themselves and either walk in off reminiscence groups, the street or give us a call looking for information. There has been knitting groups, a huge surge in enquiries since the new resource centre opened. movie groups and We’re more visible now and people know where to come for musical groups. advice.

‘Carers often contact us when there are changes in the person’s condition and they need a bit of direction or information. Work in the Sometimes people are very greenhouse: distressed because they’ve found a volunteer the caring role diffi cult, especially enables a later on, after the period of intense man who no support following diagnosis ends. longer has a garden We’re here to provide the help at home to and information they need.’ maintain his interest in gardening.

20 ��Providing advice and support

Dementia Nurses and Dementia Champions Where possible, we appoint nurses at consultant level so they have Our Dementia Nurse initiative maximum strategic influence. has seen the appointment of an Alzheimer Scotland Dementia Over the coming year, they will Nurse Consultant or Specialist in help implement the Government’s almost every NHS board. As well new 10 Point Action Plan for as working locally, the nurses dementia care in hospitals. contribute to the Government’s aim of improving the experience Our nurses work directly with local of people with dementia and Dementia Champions, supporting their families in hospitals across them to work at a local level within Scotland. individual units or departments. The Dementia Nurses work closely with the national network of over 300 Dementia Champions. The The Dementia nurses have a strategic role, while the champions promote best Champions are practice at a very local level. ‘change agents’. In addition to the Dementia Nurse network, we are also hosting a They make a commitment to national Allied Health Professional improving the experience of people (AHP) Dementia Consultant with dementia and their families. post funded by the Scottish Government. The post holder will work with the three other national AHP Dementia Consultants to develop the positive role AHPs can play in supporting people with dementia and their families. “I want to ensure that

Dementia Nurse posts were every patient with initially funded for three years, and we are working with NHS dementia and their Boards to identify ways of maintaining them after this three- family passing through year period. my unit has the best experience that we can give them.” Dementia Champion 21 Raising awareness

Over the past year we’ve worked and dementia. Our annual hard to maintain a high public conference was extremely well profile, ensuring that our voice is attended and our staff, branches, heard and those who need our shops and volunteers held over help and support know where to 100 local events across Scotland. find it. September 2012 saw the We benefited from the publicity inaugural Scotland’s Dementia surrounding major policy Awards, a partnership between developments such as the one- Alzheimer Scotland, NHS year post-diagnostic support Education for Scotland, NHS guarantee. We also generated Health Scotland and the publicity around new and exciting Scottish Social Services Council. work to support people with The awards recognised and dementia in the community. celebrated best practice and innovation in dementia care and Our successful campaign to get support. Live tweeting raised local election candidates to sign awareness during the event, and up to our Dementia Manifesto afterwards local media were “We’ve worked hard to increase our local use of social media through 2013. Several local branches now have Facebook pages.”

was supported by an intensive keen to publish photos of award Twitter campaign. This was winners from their area. one of the first times we’d used social media in a coordinated Our report ‘Delivering integrated awareness-raising programme. dementia care: the 8 pillars We obtained over 340 signatures model of community support’ and now use social media much was launched in September and more frequently to publicise our generated widespread media work and activities. interest.

In May 2012, the Dementia Dog We’ve worked hard to increase project featured in the Living Well our local use of social media with Dementia exhibition at the through 2013, mainly through Design Council in London. This Facebook pages which several of generated huge media interest our local services maintain and and prompted widespread update. These are helping to build coverage across the whole of the an online presence that is both UK. nationally and locally relevant, which is very helpful when Dementia Awareness Week 2012 promoting events, activities and 22 focused on the theme of creativity policy work. Fundraising

Our fundraising team had another A wide range of companies exciting and extremely busy year, continued to support us over the working in partnership with many year. Some gave donations, while new and existing supporters others helped with volunteering across Scotland. We focused our and awareness-raising or offered fundraising on the following four time or expertise. Alzheimer areas, signing up new donors, Scotland was a partner charity supporters and members: for the Martin Currie Rob Roy Challenge for a second • Dementia Nurses successful year and received • Dementia Advisors £60,000. We also benefi ted from • the Dementia Helpline a second year of support from • Dementia Research the staff of Standard Life, who donated £118,000. We were We were given generous delighted to be chosen – along donations by scores of charitable with our sister charity Alzheimer’s trusts and foundations, including Society – as Lloyds Banking several new supporters. They Group’s Charity of the Year for have helped to fund our core 2013 and 2014. We are also services, as well as new projects privileged to have been selected like the Dementia Dog Pilot and as Home Retail Group’s charity our Dementia Resource Centres partner for the next two years. across Scotland.

“Our fundraising team had another exciting and extremely busy year.” 23 Fundraising ��

In October we were honoured We were honoured and grateful to win a prestigious Institute of to receive over £1.9m from Fundraising Scotland Award in supporters who remembered the Corporate category for our us in their wills. We are currently successful Charity of the Year looking at ways to enable people partnership with Tesco. who leave us a legacy to choose a specific project in lasting Our Sportsman’s Dinner at memory of their donation. Hampden Park in October raised over £11,000 for the Football Many of our supporters made Memories project. 82 ladies their donations go even further had an afternoon of fun and this year using Gift Aid. This laughter at our first Ladies Lunch boosted the money we received in Glasgow in March. This raised from donations and fundraising £6,500, and during the lunch a by an incredible £121,000. Dementia Nurse and Dementia Advisor talked about their work. We were delighted that so many of our supporters chose to We worked hard to keep in touch organise their own fundraising with our generous supporters, projects. To make sure they had and during the year we organised the tools they needed, we set up appeals to raise funds for new ‘Do your own fundraising’ Dementia Nurses; Helpline and teams in Edinburgh, Glasgow, Research. These three appeals Argyll & Clyde and Highland raised over £97,500 and brought regions. 750 new supporters on board.

During the year, 1,600 participants took part in over 30 sponsored events which we helped promote.

37 runners raised an incredible £73,332 for us by competing in the London Marathon.

Our dedicated supporters raised over £58,000 by participating in the Edinburgh Marathon Festival of Running and £23,000 from Great Scottish Run.

We held a Memory Walk at Mugdock Park in partnership with Bupa Care Homes. Over 200 people took part, raising £42,000.

24 ...... Fundraising

“We were honoured and grateful to receive over £1.9m in legacy income this year.” Individual projects included a Sponsored Firewalk that everything from people knitting raised £5,500. A night at The scarves, to craft fairs and people Stand Comedy Night generated having their heads shaved. One £1,000, and £1,500 was raised brave supporter was sponsored at a Craft Night in the Glasgow to have a tattoo in memory of area. Highland also supported a her Gran who had dementia. We number of fundraisers and raised have worked with Rotaries, Round £4,500 from an annual Line Tables, clubs, schools and other Dance Marathon. groups, all raising funds and creating awareness. Our three charity shops are based in Golspie, Forres and Renfrew. Our three Regional Fundraisers They made a big contribution to worked with our services across their local communities, with over Scotland, as well as members £82,000 raised and spent on of the public, to fundraise local projects. Some of the money for Alzheimer Scotland. They raised will fund a Dementia organised several projects Advisor in Moray, as well as local throughout the year, including services in Highland and Renfrew. 25 Some facts and figures

Our work is Nearly 5,000 people supported by phoned our 24-hour over 5,000 Dementia Helpline members

We helped train the third cohort Our dedicated supporters of Dementia raised over £154,000 through Champions, various running events bringing the total number to over 300

We welcomed over 1,600 people aboard BALLOT our two mobile information vehicles BOX

During the Scottish local elections 342 politicians signed our pledge

26 to make dementia a local priority ��Some facts and figures

We provided an average of 970 day care sessions each week By the end of the year, we had established 50 football 9 7 0 reminiscence groups HIGH STREET

Our 12 Dementia Resource Centres We launched our KASPA brought information Dementia Dog and support to pilot, generating high streets significant interest across Scotland from the public

We raised over £36,000 from Christmas Card sales and an additional £5,500 from merchandise including wedding favours

Come in. Our charity shops We’re in Golspie, Forres open! and Renfrew donated £82,000 to local projects 27 Thank you

We are very grateful to everyone memory of their loved ones. We who has supported our work this are also grateful for the financial year. We have received generous support we have received from donations from individuals, the Scottish Government, health workplaces, community groups, boards and local authorities. We clubs and schools, who have would like to thank the charitable helped us by holding events, trusts and companies listed below raising sponsorship and buying which have given donations Christmas cards, among many over £500. The support we have other fundraising activities. We received this year will help us are particularly grateful to those to further our aim that no-one who have asked family and should go through dementia on friends to send us donations in their own. Companies

Thank you to all the companies who have supported Alzheimer Scotland this year including the following:

BAE Systems Jolomo Baker Tilly Kwik-Fit Insurance Services Balfour Beatty Engineering Services Ltd The Lang Cat Ltd Bank of Scotland Foundation Lifescan Scotland BEAR Scotland Ltd Lloyds Banking Group Bingo Association Lloyds TSB Foundation for Scotland BP Foundation Maclay Murray & Spens LLP British Polythene Industries plc Marks and Spencer plc Bruce Stevenson Risk Management Ltd Martin Currie Charitable Foundation bto Morrison Bowmore Distillers Ltd Bunzl Healthcare Mother India’s Cafe Bupa Nexen Campbells Shortbread Outfit Capita plc Oval Insurance Broking Ltd Carlton Bingo Limited Peak Scientific Instruments Limited Co-operative Food PKF D C Thomson & Co Ltd Raeburn Healthcare Domino’s Pizza Royal Bank of Scotland Donaldson Alexander Russell & Haddow Red Rooster Industrial (UK) Limited Dulux Decorator Centres Royal Mail Group Dundas & Wilson LLP Sainsbury’s Edrington Group Ltd ScotRail Eyelash Emporium Ltd Scottish & Southern Energy plc George Leslie Ltd Standard Life GVA Swagelining Limited Hays plc Talisman Energy (UK) Limited Head Resourcing Technip UK Ltd Home Retail Group Tesco plc HSBC Thales UK 28 Johnston Carmichael ��Thank you

Companies (continued)

Tods Murray LLP Waitrose Towers Watson Weatherseal United Biscuits William Grant & Sons Ltd V. Ships Ltd WM Thomson & Sons Virgin Media Wood-Mizer Products Inc

Charitable trusts

Thank you to all the charitable trusts and foundations who have supported Alzheimer Scotland this year including the following:

The Misses Barrie Charitable Trust John Liston Scottish Charitable Trust Big Lottery Fund The R S Macdonald Charitable Trust The Binks Trust The Ian Mactaggart Trust Miss Marion Broughton’s Charitable Trust The Mainhouse Charitable Trust The Brownlie Charitable Trust The MEB Charitable Trust Miss Mary G Burnett Trust Hugh and Mary Miller Bequest The Bute Charitable Trust The Ronald Miller Foundation The D.W.T. Cargill Fund The Morton Charitable Trust The Geoffrey Clark Charitable Trust The Nationwide Foundation The Company of Stationers of Glasgow The Netherdale Trust The Martin Connell Charitable Trust People’s Health Trust Cruden Foundation People’s Postcode Trust Darroch Charitable Trust PF Charitable Trust The DHL UK Foundation Grace Rae Trust The Evelyn Drysdale Charitable Trust The RIADA Trust ELPD Charitable Trust The Nancy Roberts Charitable Trust The Jane Margaret Errington Row Fogo Charitable Trust Charitable Trust The Russell Trust The Ian Fleming Charitable Trust SBAAT The Forte Charitable Trust ShareGift Foundation Scotland Miss M J M Smith’s Trust The Hugh Fraser Foundation The St Katharine’s Fund The Gamma Trust Stichting Teuntje Anna Garnett Charitable Trust Strathclyde Police Benevolent Fund Miss A J I Gower’s Charitable Trust Templeton Goodwill Trust The Susan H Guy Charitable Trust The Tennant Southpark Charitable Trust The James and Patricia Hamilton The Tour Trust Charitable Trust The Tulip Charitable Trust Miss I F Harvey’s Charitable Trust The Twitten Charitable Trust Health and Social Care Alliance Scotland James Weir Foundation Highland Council Common Good Fund Westwood Charitable Trust The M V Hillhouse Trust The J & J R Wilson Trust IBB Trust The J K Young Endowment Fund Inchrye Trust Zurich Community Trust The James Inglis Trust (Roll Number 29) The JTH Charitable Trust 29 Looking forward

Over the last 12 months we have Maintaining our profile and been preparing our next three ensuring we speak with a year strategic plan. This builds clear voice is vital to getting our on the successful delivery of our message across. To achieve this, 2010–13 plan and has involved we will review our brand and an in-depth review of our local our communication strategies service structures and a thorough over the coming year to ensure analysis of the key challenges we engage as many people as and opportunities we face as an possible in our work, as members, organisation. What we’ve learned volunteers or supporters. Henry Simmons, has shaped our plans for the Chief Executive coming year. Our second priority will be to maintain and develop high-quality Our first key priority is to build services in what continues to the local presence of Alzheimer be a challenging environment. Scotland and improve the We will start by reshaping our engagement we have with Development Team and by our local members, branches, introducing a new role of Practice fundraisers and supporters across Team Leader, to help support our the country. We want to ensure Service Managers to focus on the that as the integration of health quality of their practice. and social care takes shape and new partnerships emerge across Our services are central to what Scotland, people with dementia, we do, and we will continue to their partners, families and carers focus on high quality small-scale are engaged in the development dementia-specific services, as “Maintaining our profile and ensuring we speak with a clear voice is vital to getting our message across.”

of local policy and strategy. We will well as supporting our health make a significant investment in and social care partners to this by organising our policy work, meet the HEAT target for post- representation and fundraising diagnostic support. We will do this efforts on a more local basis and through our emerging network of by introducing new roles and specialist Dementia Link Workers, infrastructure to deliver this.

30 ��Looking forward

trained to Enhanced level on the Integrated Dementia Care will be Promoting Excellence Framework. a key element of the new strategy, We will also continue to help all and we will work with health and our staff attain the appropriate social care partners to help them skill level on the Promoting deliver it. We will also support Excellence framework. the proposed national dementia improvement programme, which We will continue to take dementia includes 10 key action points for to the high street. Our Dementia acute care, and will widen this Resource Centre network has focus to other areas of health and revolutionised information and social care. support about dementia in local communities across Scotland and We will continue to jointly fund the we plan to purchase and open Alzheimer Scotland Nurse Initiative three new Centres this year. in partnership with the Scottish Government, offering each NHS We will also continue investing Board three years funding for the in our network of Dementia post. As these three-year funding Advisors, enabling them to deliver commitments finish we will offer even more community-based Boards a £10,000 contribution to support and activities. A key focus sustain these positions and ensure for the coming year will be to the national work continues. provide more peer support and specialist therapeutic activities We will continue to support the through our growing network of work of our research centres skilled-level staff. We will also at the Universities of Edinburgh take part in a range of Dementia and the West of Scotland. Their Friendly Community Initiatives with expertise and research findings partners across Scotland. will inform our policy, campaigns and training agendas. We will As well as maintaining a strong fund the development of the local policy focus, we will continue Scottish Dementia Research to shape and support the delivery Consortium to encourage greater of Scotland’s second National collaboration within the dementia Dementia Strategy (launched in research community in Scotland. June 2013). Our 8 Pillars Model of This is part of our commitment “Our Dementia Resource Centre network has revolutionised information and support about dementia in local communities across Scotland.”

31 Looking forward......

to encourage a collaborative European Dementia Working approach to research across Group. the clinical, scientifi c, social, population and psychology At an international level, we will research communities. The continue to support the work consortium will formally launch in of Alzheimer Europe through the autumn. the Chief Executive’s role as a Board member. We will also We will develop a small bursary maintain our commitment to programme with the Universities international campaigns through of Edinburgh and Stirling to our membership of ADI. encourage Scottish dementia “We remain committed to building on our national and local fundraising programme.”

practitioners to undertake We remain committed to enhanced academic learning in building on our national and dementia and help build future local fundraising programme, capacity and skills. ensuring that the local communities, businesses and We will continue to support the individuals who do so much to National Dementia Carers Action support our work see a clear and Network, appointing a coordinator tangible return in their area. We to help the group build capacity. will deliver this by investing in We will also continue to make our Dementia Resource Centres, a substantial investment in the Dementia Nurses, Dementia Scottish Dementia Working Group, Advisors, Dementia Research supporting its development Centres – and crucially by locally, as well as at a European supporting our local services and level through Alzheimer Europe’s the Dementia Helpline.

Frances admires photos taken by her and other people with dementia on display at 32 Banff Castle in Aberdeenshire. Our finances

Income and Expenditure 2012-13 Consolidated Income and Expenditure Account for the year ended 31 March 2013

2013 2012 £ £ Total incoming resources from generated funds 5,971,688 5,412,588 Total incoming resources from charitable activities 12,104,759 10,576,608 Total incoming resources 18,076,447 15,989,196 Cost of generating funds (836,307) (1,070,075) Resources expended on charitable activities (15,291,854) (13,728,939) Governance costs* (38,384) (38,159) Total resources expended (16,166,545) (14,837,173) Net incoming resources before transfers 1, 909,902 1,152,023

The statement of financial activities shows that total incoming resources of £18,076,447 were up by 13% on the previous year. Expenditure rose by 9% to £16,166,545.

*Audit fees, Director’s insurance, AGM and meetings costs

Income Expenditure

Local authority grants �� 47% Care related services ��87.8% Fundraising, trusts and donations ��19% Support costs �� 4.0% Legacies ��13% Fundraising �� 3.4% Other �� 9% Involvement �� 1.5% Health board grants ��7% Awareness raising �� 1.0% Scottish Government and specific grants �� 5% Campaigning �� 1.0% Research �� 1.0% Governance �� 0.3%

33 At Alzheimer Scotland we’re committed to improving the lives and opportunities of people with dementia, their partners, families and carers. We do this through provision of direct support services, and by raising funds to provide our Dementia Helpline, our networks of Dementia Advisors and Dementia Nurses, and our Dementia Research Centre. Our work and campaigning activity is informed by our 5,000 members and delivered by our 992 staff and 677 volunteers. This annual review is a summary of the work we have been doing and our achievements over the last 12 months.

Alzheimer Scotland, 22 Drumsheugh Gardens, Edinburgh EH3 7RN Tel: 0131 243 1453. Email: [email protected]. Web: www.alzscot.org 24 hour Dementia Helpline: Freephone 0808 808 3000

Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Registered Office: 22 Drumsheugh Gardens, Edinburgh EH3 7RN. It is recognised as a charity by the Office of the Scottish Charity Regulator, no. SC022315.