Alzheimer Scotland Annual Review 2011 - 2012

Making sure no-one goes through dementia on their own

1 Council and Executive Committee Alzheimer Scotland appreciates the time, investment and dedication of our governing Council and Executive Committee:

John Laurie, Convener (appointed November2011) Noni Cobban, Convener (resigned November 2011) Arlene Chalmers, Honorary Secretary Ian Bell, Treasurer Findlay McQuarrie, Vice Convener

Neill Anderson Barbara Barnes Gillian Boardman Rose Mary Bowes Caroline Brown Margaret Cheyne (resigned Feb 2012) Jacqueline Daly (resigned Oct 2011_ Jim Fry Judith Grant (resigned Apr 2012) Sheila Hardie (appointed Nov 2011) John Heenan (resigned Nov 2011) Lynda Hogg Agnes Houston Dianne Howieson Alan Jacques Patricia Laughlin (appointed Nov 2011) David McClements Christine McGregor Janice Menzies (resigned Oct 2011) Barbara Mitchelmore Lindsay Morrison (resigned Sept 2011) Patricia Payne (appointed Nov 2011) Douglas Philips Christine Ross Sandra Ross (resigned Feb 2012)

2 Jonathan Shawcross (resigned Feb 2012) John Starr Marsha Unze (resigned Jan 2012) Kenneth Valentine

3 Convener’s remarks The past 12 months has been both a challenging and a successful time for Alzheimer Scotland. We reviewed our 2010 Strategic Plan and were pleased to see the high degree to which it had been integrated into the organisation.

The country’s economic situation has meant all organisations are pressing even harder to achieve best value for money and this has been challenging for our services. I would like to congratulate our teams on working successfully with our partners in local authorities and health boards to ensure that people with dementia and their carers continue to receive the highest levels of support.

Our objective to be the leading force for change in dementia care has been very successful. We cooperated with the Scottish Government to produce Scotland’s National Dementia Strategy in 2010. This was augmented by the Standards of Care for Dementia in Scotland (2011) and Promoting Excellence (2011). The implementation of these documents created a substantial, positive change in the levels of care that people with dementia and their carers can expect.

Some time ago, we identified the need to improve the standards of care experienced by people with dementia in acute hospitals. To achieve this, Alzheimer Scotland partnered with the Scottish Government to increase the number of Alzheimer Scotland Dementia Nurses. Our Dementia Nurse programme is making good progress towards its goal of having an Alzheimer Scotland Dementia Nurse in every Scottish health board.

Our partnership with the University of the West of Scotland to train NHS Dementia Champions has helped raise standards for people with dementia within the whole of the NHS. Together, the Dementia Champions and the Alzheimer Scotland Dementia Nurses are a powerful force for change and improvement.

4 Over the past year, we have extended our network of Dementia Resource Centres. This year, we secured additional centres in Kirkcaldy, Greenock, Dumfries and Inverness. We also opened a new high street Resource Centre in East Dunbartonshire and work is well underway to open others next year. The centres also act as a base for our local service staff and Dementia Advisors. I wish to extend my thanks to the people of each community. The centres would not be successful without their goodwill and contributions.

Our services continue to receive immense support and generosity from our volunteers and local fundraising activities. When visiting our services, I find it humbling to hear about people’s individual contributions. This year, we were also selected as Charity of the Year partner by many organisations. Fundraising is essential to the survival and growth of every charity. Given the national economic situation, our fundraising efforts have been very successful. Through them, our Council has been able to fund all of our initiatives.

Throughout the year, our staff organise many events. These range from local tea parties to the Sportsman’s Dinner at Hampden Park. All of these contribute to promoting the well- being of people with dementia and their carers.

In my first year in the role of Convener, I have learned more about the admirable qualities and dedication of my colleagues and past Conveners on Council and our staff. It has been a privilege to work with them all.

With your continuing support, I look forward to the future, confident that Alzheimer Scotland will continue to prosper and provide even better support to people with dementia and their carers.

John Laurie, Convener

5 Raising standards and expectations During the last year, we have continued to focus on delivering our two main objectives. These are:

• being the leading force for change at all levels of society, protecting and promoting the rights of people with dementia, their families and friends • being the foremost provider of support and information for people with dementia, their families and friends throughout Scotland.

We have made significant progress in being the leading force for change. This has led to better outcomes for people with dementia, their families and carers. The work we do to promote change covers the following four themes. We have included a summary of our key achievements for each theme within this review:

• campaigning and lobbying • public policy • dementia research • awareness raising.

Last year we supported more than 1,700 people a week through our specialist day care and one-to-one services, delivered by over 1,000 passionate and dedicated staff and hundreds of committed volunteers.

We also continued to use our own fundraised resources to provide vital additional support. Our contribution totals more than £10,000 a day and funds our Dementia Nurses, Dementia Advisors, 24-hour Dementia Helpline and dementia research.

6 During the last year we have increased our presence in local communities by opening more Dementia Resource Centres. These provide hubs for local services, and ensure we have a high profile locally across Scotland, enabling us to offer advice and information to anyone who needs it. This year we bought properties in Greenock, Dumfries, Inverness and Kirkcaldy. We also opened a high-street centre in Bearsden.

It would not be possible to achieve our objectives without the incredibly generous support of members of the public and the organisations we work in partnership with. The gifts of time and money we receive have enabled us to bring benefits to an even greater number of people across Scotland this year.

We also work in partnership with local authorities and continue to build positive relationships with them, despite the challenging financial climate. In addition, we self-fund a range of vital staff posts both within the NHS and in the community. Key examples of this work include our Dementia Nurses and Dementia Advisors programmes.

However, our most valuable resource is our highly trained and dedicated staff, supported by our volunteers. They work with people with dementia and their supporters on a daily basis, providing information, advice and support.

Campaigning and lobbying As a key partner in implementing Scotland’s National Dementia Strategy, we have made significant contributions to the roll-out of the Strategy over the last year. This has ensured that key aspects of the Strategy have been translated into tangible benefits for people with dementia. We are now seeing real improvements in standards of care, treatment and support for people with dementia and their families and carers.

7 Specific work around the National Dementia Strategy has included:

Defining standards of care During the last year we helped develop the Standards of Care for Dementia in Scotland. These are underpinned by the Charter of Rights for People with Dementia and their Carers. They help service providers, commissioners and inspection agencies assess and monitor services.

As well as contributing to the full standards document, we published a user-friendly summary for people with dementia and their supporters explaining what they should expect at every stage of their journey with dementia. The guide was funded by the Scottish Government.

Representing the views of people with dementia Ensuring the experiences of people with dementia and their supporters are listened to is a central part of our “Influencing change and promoting rights” action plan. The views we gather are informing how Scotland’s National Dementia Strategy is being implemented. Our ability to gather information about the experiences of people with dementia and their carers is made possible by our local networks, helpline enquiries and our day- to-day work. Improving standards of staff training Promoting Excellence is a new national framework which sets out the knowledge, skills and behaviours expected from staff who come into contact with people with dementia. It recognises that people with dementia must be cared for by well-trained, well-informed staff. Alzheimer Scotland contributed significantly to the development of Promoting Excellence, and we have worked in close partnership with our colleagues to

8 develop a range of training resources that support the goals of the framework.

Championing best practice We are a key partner in the Dementia Champions training programme. Inappropriate care of people with dementia in acute hospitals has been recognised as a major area of concern for some time. Addressing this was a key thrust of the National Dementia Strategy.

During its first phase, the programme focused on staff working in acute care settings and the first 100 Dementia Champions graduated in March. They will act as leaders in introducing change and educating colleagues, enabling them to respond to the needs of people with dementia in acute hospital settings more effectively.

9 Public policy Alzheimer Scotland celebrated a major achievement this year when the Scottish Government backed our proposal for a post-diagnostic support guarantee. We recognise the importance of working with politicians at a local and national level, and during the year we developed our manifesto for the Scottish local government elections. We also continued to gather the views of people with dementia and their supporters, ensuring these were heard during consultations on policy developments.

Supporting people after diagnosis The Scottish Government’s commitment to the one year post- diagnostic support guarantee is a major policy success for Alzheimer Scotland and a world first. Post-diagnostic support was one of the priorities of the National Dementia Strategy, but following the publication of the Strategy we were concerned about the lack of progress in this area. We worked hard to make the case for guaranteed support for everyone with dementia following diagnosis. We also lobbied for funding from the Reshaping Care for Older People Change Fund to be made available to develop this. Our pilot project in Renfrewshire and East Renfrewshire, funded by the Scottish Government, finished in June. This demonstrated a model of support now known as the Alzheimer Scotland Five Pillars of Post-diagnostic Support.

This helps people with dementia and their families: • understand the illness and manage symptoms • plan for future care • maintain community connections • plan for future decision-making • receive peer support.

The Cabinet Secretary for Health and Wellbeing listened to our concerns and, during the year, work was put in place to progress

10 a guarantee of a year’s post-diagnostic support from a named and well trained person – a world first. Although we were clear that this is a mainstream responsibility which could be delivered by a range of health or social care professionals, a number of areas have used the Change Fund to invest in post-diagnostic work delivered by Alzheimer Scotland.

Manifesto for Scottish local government elections During the year we developed our manifesto and campaign for the Scottish local government elections. The key aim of the manifesto was to seek a commitment from candidates to make dementia a priority. In March, we wrote to every candidate in the local government elections asking them to sign this commitment.

Delivering Integrated Dementia Care We started developing a policy report which will provide the evidence base for a new model of community support. This proposes a range of integrated interventions for people with dementia in the moderate to severe stages of the illness and will form the basis for our next area of policy campaigning. It will form a major focus of our work over the next 12 months and builds on what we achieved this year with the post-diagnostic support guarantee.

Listening to the voices of experience One of our greatest strengths is providing a voice for people with dementia, their families, partners and friends. Our policy work is informed by our members, through consultations, calls to our 24-hour Dementia Helpline and enquiries to our services. We also seek feedback through our Public Policy Committee, the Scottish Dementia Working Group, the recently formed

11 National Dementia Carers Action Network and our growing network of Local Dementia Action Networks.

During the year, senior managers and policy staff represented Alzheimer Scotland’s views on the self-directed support legislation, COSLA’s community care charging review, and the national care home contract review. We presented oral and written evidence to the Scottish Parliamentary Health and Sport Committee during its scrutiny of the integration of health and social care, the self-directed support bill, and the regulation of care enquiry.

The Scottish Dementia Working Group (SDWG) has been a crucial partner in developing and implementing the National Dementia Strategy. The group celebrates its 10th birthday in 2012 and has made a remarkable contribution to improving the lives of people with dementia during that time. Our ability to involve the views of people with dementia is greatly enhanced by the work of the SDWG.

In 2011, we set up the National Dementia Carers Action Network (NDCAN) to give carers of people with dementia an opportunity to influence policy.

During 2012, we will continue to further develop and support NDCAN to ensure carers have a voice at national and local levels.

At an international level, we continue to collaborate with Alzheimer Europe and Alzheimer’s Disease International to ensure that dementia receives continued political focus worldwide. We make sure the voice of people with dementia is heard in the European Parliament, the United Nations and the World Health Organization. In August 2011, Jan Killeen, our then Director of Policy, addressed a UN working group on ageing. This was organised to identify gaps in the existing international framework for older people’s human rights. Jan’s

12 address described the progress of Scotland’s National Dementia Strategy in protecting and promoting the rights of people with dementia.

Dementia research We achieved a major long-term goal with the establishment of our Dementia Research Centre in May 2011. This was officially launched on 21 September 2011, World Alzheimer’s Day. The centre is a partnership with the University of Edinburgh, where it is also based. Scotland’s Deputy First Minister Nicola Sturgeon attended the launch and gave the keynote speech.

The centre is carrying out research into a range of aspects of dementia under the leadership of its Director, Professor John Starr. The range of research projects include studies looking into: • early detection and prediction of dementia • improving standard assessments for dementia • whether statins can prevent Alzheimer-type dementia in people with Down’s syndrome.

One of the most exciting areas of the centre’s work is the establishment of a brain tissue bank which will gather and store samples of brain tissue for future analysis. Studying the physiology of dementia has the potential to increase our understanding about how the condition progresses. The brain tissue bank will enable people with dementia to donate tissue which will form a valuable resource for research. The principle is similar to the now well-established concept of organ donation. The centre is working in partnership with researchers from across the UK and worldwide to share knowledge and maximise its impact.

13 Awareness raising 2011/12 was another high-profile year for both dementia and Alzheimer Scotland. We have continued to proactively generate media interest and influence the dementia news agenda in Scotland. During the year as a whole, we generated substantial media coverage both through stories that we publicised ourselves and through the Scottish Government’s ongoing support of our initiatives.

‘Chorus’ advertising campaign Our television advert ‘Chorus’ was broadcast in June 2011. It featured many people with dementia, their carers and others with close links to dementia. Actress Siobhan Redmond provided the voiceover. Chorus recognises the loneliness and isolation many people affected by dementia experience. It also highlights what Alzheimer Scotland can do to help. The advert received its television premiere during a midweek evening broadcast of Coronation Street. Alzheimer Scotland continues to use Chorus in its dementia awareness initiatives.

Dementia Awareness Week Dementia Awareness Week generated unprecedented media coverage across television, radio and press. The Mental Welfare Commission’s report on the treatment of Mrs V at Ninewells Hospital led to widespread public concern about standards in hospitals and care homes. This highlighted the vital importance of our work to improve standards of care for people with dementia. The momentum of the topic gathered pace with Deputy First Minister Nicola Sturgeon’s address on the care of people with dementia and older people at our annual conference.

Football Memories The Football Memories website also generated significant media interest. The site, which compiles memories of fans, celebrities,

14 and players, is an online extension of Alzheimer Scotland’s Football Reminiscence Project. Nearly all of our work related to the project has generated media interest.

Information and outreach

During the year we made substantial progress in reaching out to communities across Scotland by providing information about dementia and our services. Our two mobile information vehicles travelled the length and breadth of Scotland taking our message to more than 2,000 visitors. The Dementia Helpline continued its vital work of providing 24-hour phone support to anyone with a query or concern about dementia. We added content daily to our website, posted messages on Facebook and Twitter and distributed thousands of copies of our printed publications. We were also centrally involved in delivering training to a range of audiences in different settings across Scotland.

Training We have been involved in delivering some of the key training initiatives that underpin Promoting Excellence, the four-tier framework for knowledge and skills for health and social care staff working at all levels. Informed about dementia is a DVD training resource which was launched in early 2012 at our national office in Edinburgh. Alzheimer Scotland was closely involved in making the DVD, which provides baseline knowledge for the entire health and social care workforce. It was created by NHS Education for Scotland and the Scottish Social Services Council. We also contributed to the development of ‘Dementia skilled: Improving practice, a comprehensive learning resource for managers and educators’.

With our partners, the University of the West of Scotland, we trained the first cohort of 100 Dementia Champions as change

15 agents for acute care. The Dementia Champions include existing nurses, allied health professionals and some clinical managers. The next cohort of 200 champions will also include some social care staff.

Building on the success of the palliative care training we piloted in 2009, we launched an updated edition of the training course in 2011. We delivered this to 75 people, enabling them to run their own training courses for colleagues and carers.

In March 2012, Alzheimer Scotland became the first organisation approved to deliver the new SQA Professional Development Awards in Promoting Excellence in Dementia Skilled Practice at SCQF level 7. We developed our external training business during the year, with 25 courses delivered to 11 customers.

We have extended the business’s scope to include a very successful module on self-directed support. A website is currently being planned to improve its reach. We provided a post-diagnostic support training programme for 34 multidisciplinary staff, mostly from the three dementia demonstrator sites in Scotland. This was based on our Five Pillars of Post-diagnostic Support model.

Community outreach This year, we extended our information outreach service with the launch of our new Dementia Community Roadshow vehicle in Dundee in October. Its purchase and running costs are being funded through our extremely successful Charity of the Year partnership with the Alzheimer’s Society and Tesco. The vehicle will visit Scotland’s Tesco stores for the next three years. The aim is to reach at least 10,000 people by October 2014.

16 By the end of March 2012, the roadshow vehicle had visited 45 Tesco sites, reaching 1,443 people. Many sought a private consultation with their local Dementia Advisor or another trained member of Alzheimer Scotland staff.

We continued to travel around Scotland with our Memory Bus, reaching points as far north as Shetland. As well as providing information, the Memory Bus has been a highly visible focal point for our runners, riders and supporters at national and local fundraising events. Our staff teams organised week-long regional tours and used the Memory Bus for one-off events such as local agricultural shows. It was also used at conferences as an alternative to an indoor information stand.

Contacts in New Zealand and Ireland have shown an interest in our mobile information service, with a view to setting up something similar in their countries.

Website During the year, our website, www.alzscot.org, attracted more visitors than ever before (up four per cent), providing 24-hour access to a wide range of information. Our microsite on the Charter of Rights for People with Dementia and their Carers had 60% more visits than last year. We now circulate our e- newsletter to 11,259 subscribers, a 28% increase from last year.

We are aware how many people use our website as a source of information and guidance, and have recently commissioned a redesign of the site. This will give a stronger public face to our services and fundraising activities, while continuing to provide key information to those directly affected by dementia. We expect to have the new website online in autumn 2012.

17 Publications Our publications have been in particularly strong demand this year, partly to meet the needs of our mobile information vehicles. They are also being widely used by our growing network of Dementia Advisors and at the increasing numbers of information stands and awareness-raising sessions delivered by our staff teams.

As well as reprinting several of our leaflets and booklets, we revised 11 of our information sheets and published five new ones. We also produced “Useful contacts” lists for 17 local authority areas visited by our information vehicles.

During the year, we published our easy-read guide to the Standards of Care for People with Dementia and their Carers in Scotland. We also collaborated with the national carers’ organisations to produce a DVD and related website called Essential Conversations, which addresses talking about death and end of life care.

18 The Dementia Helpline Our 24 hour freephone Dementia Helpline (0808 808 3000) has had another successful year, responding to over 5,000 calls. 38% of calls to the Helpline were made outside office hours, reinforcing the need for a 24-hour, seven-day-a-week service. We introduced an e-Helpline service for those who prefer to communicate electronically or may be caring at a distance. We receive a small number of emails each month, but this is expected to increase with awareness of the service.

“It is good to know there’s someone at the other end of a phone when you’ve never dealt with these issues before and don’t know where to begin.”

Dementia Advisors Our Dementia Advisor programme was completed with the appointment of our 30th advisor in March. The Dementia Advisors took 4,618 referrals, and used a light-touch approach to help people with dementia, their families and carers to access support and to cope with challenges. They have also worked creatively within local communities to develop initiatives including dementia cafés, singing groups, reading groups, football reminiscence groups and an allotment. Our advisors have worked with organisations from schools to the police.

Dementia Nurses On 14 March the Cabinet Secretary for Health launched the second phase of the Alzheimer Scotland Dementia Nurse Programme which we jointly fund with the Scottish Government.

Our contribution to funding a dementia nurse specialist or dementia nurse consultant in every NHS board highlights our

19 commitment to influencing changes in policy and practice. This is leading to real improvements in dementia care.

April 2011 saw the creation of a newly-funded dementia nurse post in NHS Lanarkshire. We have now agreed funding for, or have funded, Dementia Nurses in Ayrshire & Arran, Borders, Greater Glasgow & Clyde, Grampian, Lanarkshire, Lothian, Shetland and Western Isles. Appointments are in progress in the remaining health boards. Most are consultant posts, which will allow the dementia nurses to wield strategic influence across their health board.

Woodlands photography project The Woodlands photography project in Inverness has produced many fine pieces of work, primarily portraits of the people who use the centre enjoying day care activities. All the photographs have been taken by people with dementia who use the Woodlands Centre. Portraits are not the only type of photographs produced by participants. Some have been inspired by Inverness architecture, whilst others have focused on the surrounding countryside. The photographs are displayed in the Woodlands Centre and the new Inverness Dementia Resource Centre, on the walls and in albums. They are all taken with digital cameras and selected images are printed at the centre for display.

20 Making every penny count The work we do to support people with dementia is only made possible because of the incredible generosity of our supporters. Almost everyone who donates to us does so in memory of a friend or relative with dementia. We make those memories count by using our fundraised resources to deliver the best possible services for people with dementia and their carers.

Thanks to the dedication and generosity of everyone who donates to us, Alzheimer Scotland is able to spend more than £10,000 a day supporting people with dementia in Scotland. We use our fundraised income to directly finance four critical areas of our work: Dementia Nurses, Dementia Advisors, the 24-hour Dementia Helpline and dementia research.

Dementia affects a huge number of people in Scotland – not just those who are diagnosed but also their partners, family members, friends and colleagues. During the year, our fundraising team continued to sign up new supporters, building links with more people across Scotland who have been touched by dementia and who want to donate in support of a friend or relative.

The innovative ways in which our supporters continue to raise funds for Alzheimer Scotland has meant we can maintain and extend our work, despite the challenging economic climate. Alzheimer Scotland would like to thank our members, volunteers, staff, committed and new donors for all of your continued support. This is benefiting people with dementia, their families and carers every day.

Building our support base This year, we signed up almost 1,000 new supporters who responded to our postal appeals and door-to-door campaigns,

21 donating over £100,000. An incredible 5,000 new donors took part in our home money box scheme, raising over £32,000.

Maximising the value of our donations Gift Aid made a significant contribution, increasing the value of donations received by over £117,000.

Sponsored and community events Over the year, countless fundraising events took place across Scotland, ranging from sponsored events to activities organised in local communities. These raised an incredible £372,500. Some highlights include: • 75 runners who participated in Glasgow Women’s 10k, raising over £21,000 • 300 Alzheimer Scotland participants who cycled from Glasgow to Edinburgh as part of Pedal for Scotland, raising £28,500 in sponsorship • 104 Alzheimer Scotland runners who took part in the Edinburgh Marathon Festival of Running, raising over £35,000.

We organised our first Sportsman’s Dinner at the Scottish Football Museum in Hampden Park in October. The event was a big success, raising £13,000 for the Football Memories Project.

Tesco Charity of the Year 2011 The Tesco Charity of the Year 2011 partnership with Alzheimer Scotland and the Alzheimer’s Society raised a fantastic £7.5 million across the UK, including over £760,000 in Scotland. Tesco staff and customers took part in events including themed store fun days, such as Disney and Halloween theme days. Staff also took part in running, cycling and adrenaline events.

Along with funds raised, Alzheimer Scotland raised awareness among Tesco customers and in the Scottish media through in-

22 store promotion, press coverage and visits by our Dementia Community Roadshow.

As a direct result of the partnership with Tesco, a motion was raised in the Scottish Parliament in November 2011. Colin Keir MSP welcomed the introduction of our Dementia Community Roadshow and commended our commitment to people affected by dementia. We are extremely grateful to everyone who supported this partnership.

Rob Roy Challenge Alzheimer Scotland was selected as a beneficiary of the Martin Currie Rob Roy Challenge fundraising event. Intrepid supporters walked 16 miles before cycling an additional 39 miles through the Trossachs, braving rain and midges. The event raised £88,000 for Alzheimer Scotland. We are delighted to also be an event beneficiary in 2012 and 2013.

Corporate donations Alzheimer Scotland received significant donations from Standard Life, Capita, Santander, Johnston Carmichael and Burness. In addition, we received valuable in-kind donations from corporate supporters including Dundas & Wilson and Edinburgh Bicycle Co-op. Bupa Care Homes has generously supported two of our most exciting projects – Glasgow’s Forget- me-not befriending project and the Football Memories reminiscence project in conjunction with the Scottish Football Museum.

Trusts and foundations Alzheimer Scotland’s Football Memories Project was awarded £75,000 from the People’s Postcode Lottery Dream Fund. The money will help train volunteers to use historical football nostalgia to stimulate memories.

23 We continue to receive generous support from the Big Lottery Fund for projects in Aberdeen, Highland, and Argyll & Clyde. The RS Macdonald Charitable Trust gave us a significant grant towards our Dementia Nurse Specialist programme. The Voluntary Action Fund continued to support our innovative Forget-me-not befriending project in Glasgow.

Regional and community fundraising Our community fundraisers in Glasgow, Inverness and Renfrew have supported the fundraising efforts of our regional staff, supporters and volunteers, and established new links in the community. The year’s highlights included a collaborative project between Alzheimer Scotland and Scottish Opera, which culminated in a moving opera concert at Glasgow Cathedral.

Local fundraisers have worked in creative ways: from busking to belly dancing, memory walks to bike rides, classical concerts to art exhibitions.

Charity shops Our three charity shops in Golspie, Forres and Renfrew contributed a combined turnover of more than £152,000 over the last year. This is used to fund local dementia services. The charity shops have also become important hubs within their communities.

24 Our specialist services Specialist dementia support is central to what we do. Our services across Scotland support people with dementia and their families, both one-to-one and by bringing people together in day care. We offer a wide range of community support activities, from dementia cafés to singing groups to football reminiscence groups.

Maximising choice and control for people using services This year, a number of our services have been affected by retendering, a process which is potentially very distressing because families have no control over whether their service may be switched to a new provider that wins the tender.

We continue to make the case for individual commissioning of personalised services, which ensures that choice and control sit with the people using services. This avoids the pitfalls of large scale tendering.

We made good progress on the personalisation of our services. Our new Perth & Kinross Dementia Support Team, which offers only individually-commissioned support, was launched. We also established new services in Ayrshire and East Renfrewshire. We are now actively offering our personalised support services to people commissioning their own support in nine areas, and are looking to extend further in the coming year.

We are leading on the development of self-directed support for people with dementia. At our successful conference on the subject, Michael Matheson, Minister for Public Health, announced three-year funding for our national self-directed support initiative. We also received Scottish Government funding for three part-time regional posts to support people locally to obtain self-directed support.

25 This personalised approach contributed significantly to an overall growth of 12.5% in our one-to-one support. Fifteen per cent of the hours we provided were self-purchased, up from 10% last year. The majority of these (12%) continue to be purchased by people using their own resources, with self- directed support growing significantly from a low base. Day care provision remained stable, with a weekly average of 1,039 sessions.

Maintaining our quality We continued to maintain our high standards, with no Care Inspectorate grade below 4 (good). Fifty per cent of grades received were 5 (very good) and 10% were 6 (excellent).

Another key measure of quality is what people using services and their carers think. We collated responses from 417 people with dementia and 612 carers using 27 services, and these were very positive indeed. Using a scale similar to the Care Inspectorate, 95.4% of ratings from people with dementia were good or above (up from 85%). The figure for carers was 95.6% (up from 86%).

Dementia dogs Dementia dogs are on their way, thanks to product design students from Glasgow School of Art who took a fresh look at new services for people with dementia. In partnership with Dogs for the Disabled and Guide Dogs UK, the project has attracted development funding from the Scottish Government. It was one of five projects funded across the UK through the Design Council’s ‘Living with dementia’ awards.

Football reminiscence Our Football Reminiscence Project received two significant boosts. An award from the Postcode Lottery has allowed us to recruit a development/fundraiser post for a year, with

26 responsibility for rolling out the project and ensuring sustainability. In North Lanarkshire, the Council were successful in obtaining Comic Relief funding and have asked us to manage the project.

Self-directed Support Our pilot programme in Ayrshire provided access to self- directed support as an alternative to residential care. It offered greater choice to people with dementia and their families, enabling them to purchase and tailor support according to their needs.

An example is Mrs W, who lived at home with her daughter and family and initially attended a day care service five days a week. When she became too frail to continue going, her daughter started struggling with the demands of caring. She didn’t want carers coming into the family home. Mrs W required support with continence, and project staff suggested a laundry service. Mrs W’s daughter used the extra time to take her mother to visit friends and family.

Putting the family in control of their support so they could match it better to their needs enabled Mrs W to carry on living at home for another year. Alzheimer Scotland continues to prioritise self-directed support with funding from the Scottish Government.

27 Working locally across Scotland Our work across Scotland is now enabling more people to access support locally through our expanding network of Dementia Resource Centres and the work being done by our Dementia Advisors. Our teams provide vital direct specialist support services including day care and one-to-one home support, taking a therapeutic approach to helping people live well with dementia. They also continue to organise community support, ranging from dementia cafés to singing groups and golf days. The following snapshots provide examples of the range of work we are doing across Scotland.

New Dementia Resource Centres In January, staff in Kirkcaldy moved into their new Dementia Resource Centre at 12–14 Whytecauseway. Situated adjacent to the bus station, the resource centre is highly visible, accessible to disabled people, with plenty of space for a variety of activities. There are two multipurpose rooms, an information area, an activity area, a large kitchen and staff offices.

Julie Penn and her team worked diligently to make sure the building could be used as soon as possible. They opened it section by section so that the resource centre could start serving the local community before its official opening on 2 May 2012.

The community rallied around the resource centre as well. One person donated the tiles for the toilet area, others gave furnishings and decorations, and the Alzheimer Scotland fundraising department provided funding from trusts. When the former day centre in Dumfries was forced to relocate, Alzheimer Scotland decided to invest in a dedicated resource centre that would be both more prominent and spacious. Staff had several items on their wish list. The building needed to be centrally located, large enough to accommodate the diverse range of

28 services that the 10-strong staff team organise, as well as providing sufficient space for community groups.

After scouring the surrounding area, a disused social work office was found in central Dumfries. Regional Manager Julie Sinclair explains: “Despite its rundown appearance, the potential for the new resource centre was immediately clear. The building had everything we wanted, as well as a car park and a beautiful river view.” We have spent several months making the premises ready for use and look forward to its official opening later in the year. One of its most appealing features is a large balcony with a river view that provides safe access to outside space.

The Bearsden Dementia Resource Centre had its official opening in October 2011. It provides support for people with dementia and carers in East Dunbartonshire. The high-street centre provides drop-in support, a carers’ group and community activities, along with several other services. It is working locally to achieve Alzheimer Scotland’s goal of making sure that no- one goes through dementia on their own. Two very generous donations made the centre possible. Mr James Karagoza was one of the donors, as was the family of Mrs Pauline Hitchman.

Staff moved into a new resource centre at 1 Nicol Street, Greenock shortly before the start of the year, but work on the centre was held up by severe vandalism. News of the extensive damage reached local and national newspapers and led to offers of support from local people shocked by the damage done to a much needed community facility.

During the year we purchased our new resource centre in Inverness. This didn’t open until August 2012, and more details about the resource centre will be included in next year’s review.

29 Dementia cafés Alzheimer Scotland’s Dementia Advisors have continued to introduce a range of new initiatives across Scotland over the past year. In partnership with service staff, many now organise regular dementia cafés. The cafés are informal events where people with dementia and their carers are able to chat and relax. Staff are also on hand if anyone has a concern that they would like to talk about privately.

“Café culture is very much a part of our culture,” says Anne Heinrich, the coordinator of the Forres dementia café. “The informal atmosphere of the cafés draws people together and makes it easier for them to share information and talk about any worries they may have.”

The dementia café in East Glasgow meets monthly at the People’s Palace Winter Garden. The strength of the café is its friendly, welcoming atmosphere. Many people aren’t sure that they want to go to a dementia café when they first hear about it, but most are quickly won over. The conversation normally has nothing to do with dementia, and instead the café provides an opportunity for a relaxed get-together with people who often become friends. Participants feel at ease because they don’t have to explain themselves or their dementia, as one regular visitor explains: “I don’t feel I have to apologise if I talk to someone and I don’t remember what they said”.

The cafés at the Winter Garden are characterised by a relaxed atmosphere where people enjoy time with friends. Some of those who come have dementia, while others are family members and carers. Margo Sweeney, the local Dementia Advisor, organises the café with her colleague Myra Loch, assisted by Carol Bonini, a healthcare assistant from Parkview Mental Health Resource Centre.

30 One of the most popular cafés is held between Christmas and New Year, as Margo explains. “The December café is an oasis amidst the holiday rush. It takes place between Christmas and New Year, which can be a very stressful time for all of us, not just people with dementia. There are no Christmas trees or crackers. Instead, people with dementia and their carers enjoy the respite which comes from seeing friends who understand their situation.” Café-goers find this provides a much-needed break. “It makes such a difference to have somewhere to go and someone to talk to at this time of year – it’s a very difficult time for me.”

Caring for people at home and in the community Our services across Scotland offer personalised support which helps each person in the unique ways that suit them as an individual. The family of one person with dementia asked their social worker for help when their relative stopped washing and styling her hair as she had always done. An Alzheimer Scotland support worker in Lanarkshire took time to get to know her and learn about her past. They commented on photos of her, saying how good she looked with her hair styled and make-up on. The person liked this attention and saw the worker as a friend. Next, the support worker accompanied her to the hairdressers, using the support time allocated by the social work department. While at the salon she had a manicure and other pampering. She was successfully supported to re-engage with activities that were routine in the past, but which she had lost interest in. She was happier and her family was delighted.

Oban professional coffee club Ensuring that health and social care professionals have a good understanding of dementia is vital to delivering high quality services. Last year, an innovative programme for professionals ran for six months from the Oban Dementia Resource Centre.

31 This coffee club brought together GPs, nurses and care workers, and highlighted different aspects of dementia each month. Each meeting featured a different guest speaker, with topics ranging from occupational therapy and dementia to the benefits of meditation and relaxation. Another session looked at the role telecare can play in helping people with dementia to continue living safely in the community. The coffee club proved to be very successful. Each meeting was attended to capacity, and there are plans to resume the meetings for winter 2012.

Making information more widely available Each month, Alzheimer Scotland’s Glasgow Dementia Resource Centre sets up an information point at Boots on Sauchiehall Street, bringing dementia awareness to the high street. Alzheimer Scotland staff also arrange for leaflets to be available at the tills for a couple of days before and after the drop-in sessions. Boots staff have noticed that sometimes people don’t want to speak with someone face-to-face immediately, and would rather think and formulate their questions first.

“I get a lot of queries from people who are worried about either their memory or a relative’s memory but haven’t had the confidence to go to their doctor. We provide advice to a lot of people who may have the early stages of dementia. This means they’re being signposted to services at a time when they can get the maximum benefit from being diagnosed.” Says Margo Sweeney, describing the Boots partnership.

“The Alzheimer Scotland drop-in sessions have been a great success, raising awareness about dementia and memory problems amongst shoppers. Over the past year, we have provided information to more than 100 people who may not have sought help or advice otherwise,” says Shona Jeffrey, the healthcare consultant at Boots on Sauchiehall Street.

32 Day care that is effective and enjoyable Our specialist day care offers a therapeutic approach to supporting people with dementia in an enjoyable and sociable environment. Mrs A had been extremely independent until the onset of vascular dementia. Each day she left the complex where she lived to catch a bus or hitchhike to nearby towns, often getting lost. Her family were distraught and social services suggested that she should be admitted to long-term care. Our Stirling & Clackmannanshire day care team realised that Mrs A was leaving the house because she was lonely, bored and looking for company. They arranged day care for her, plus one- to-one home support on a Saturday, enabling her to get out and about. Mrs A has many skills and has absolutely thrived at day care, contributing significantly to the group.

Inverurie reading group Planning for the Inverurie reading group began in early 2012 when Susanna Paterson and the Inverurie librarians started discussing how to launch the group. Its aim is to keep people with dementia reading and enjoying books. The group was inspired by two things. Susanna had talked to people with dementia who said things like, “I really used to enjoy reading, but I can’t concentrate any more”. The second was a Reading Aloud workshop in Aberdeen where a facilitator from the Reader Organisation read a poem out loud. These illustrated the benefits of helping people with dementia continue to enjoy books and reading.

The reading group differs slightly from a traditional book group. Rather than participants reading a book at home, the librarian reads a chapter or poem aloud, then everyone discusses it. The readings are supplemented with books of photography and paintings, allowing for a more in-depth experience.

33 The way ahead This has been a tremendously successful year for Alzheimer Scotland in every area, and this is due entirely to the dedication and commitment of all our staff, volunteers, partners and colleagues.

Without this commitment and the support of people with dementia, the Scottish Dementia Working Group and the many active carers involved with the organisation, we would not have made the significant progress outlined in this report, and we are very grateful to everyone who is committed to supporting our mission.

Each year, however, our challenge grows as the number of people being diagnosed with the illness and the number of families, friends and partners coping with dementia continues to rise dramatically. At the same time resources and support are becoming more difficult to access. We face a very difficult future that will mean services are stretched to the limit and funding will be more difficult to access. Thankfully, based on the evidence of this year, professional colleagues and policy makers at all levels are beginning to understand the issues facing people with dementia and are working in close collaboration with us at a national and local level to meet this challenge.

Our contribution to this is only possible because of the ongoing support we receive from our members and from the Scottish public and businesses who support our work and our efforts each and every day. It is because of this support that we are able to look forward to next year and continue to face dementia together and make sure that no-one, anywhere in Scotland, goes through this illness on their own.

Next year we will: • continue to collaborate with the Scottish Government, NHS, local authorities and independent sector partners to ensure we

34 meet the commitments and objectives of the National Dementia Strategy • continue to work with the Scottish Government and NHS partners to complete the recruitment of an Alzheimer Scotland Dementia Nurse Consultant in every NHS Board • build on our partnership with the University of the West of Scotland and continue to train a further 200 Dementia Champions. We will also develop an Alzheimer Scotland Policy and Practice Unit within the University, led by an Alzheimer Scotland Professor who will ensure that best practice and emerging dementia policy is translated into education and practice much more effectively and quickly continue to build on our Alzheimer Scotland Dementia Research Centre at Edinburgh University and work with all our University partners to develop further research partnerships and opportunities • continue our quest to tackle stigma and take dementia into our high streets and communities across Scotland by investing in a further four new Dementia Resource Centres • work with our partners in NHS NES, SSSC and NHS Health Scotland to introduce the first ever national Scottish Dementia Awards • work with our partners in NHS NES and SSSC to continue to implement Promoting Excellence • work with our partners in Government to build on the Post- diagnostic Guarantee, developing and implementing a new HEAT Target • produce a new policy report that will provide a framework for supporting people with dementia beyond the post-diagnostic period; we will seek to ensure that this influences the focus of the next Dementia Strategy in 2013 and becomes a blueprint for dementia care in a new integrated health and social care environment • employ an Allied Health Professional Consultant, a post funded by the Scottish Government that will aim to bring the skills, talents and commitment of AHPs in both health and social care to the forefront of dementia practice

35 • continue to develop the National Dementia Carers Action Group and continue to fund and support the growth of the Scottish Dementia Working Group • develop and implement an ambitious new training programme that will ensure that, by 2014, every one of our support staff is trained as a minimum to Dementia Skilled level of the Promoting Excellence Framework • undertake a full review of our governance arrangements and prepare a report for the AGM in November.

We cannot achieve any of this on our own and without the support of our members, branches and partners and, perhaps most of all, without the trust that people with dementia and their families, partners and friends place in us every day. We must make sure we never let them down and that no-one ever faces dementia on their own.

Henry Simmons Chief Executive

36 Thanks to our generous supporters

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

Charitable trust supporters The Misses Barrie Charitable Trust Big Lottery Fund The Binks Trust The Bottomley Charitable Trust Miss Marion Broughton’s Charitable Trust The Brownlie Charitable Trust Miss Mary G Burnett Trust Callendar Charitable Trust Chillag Family Charitable Trust The Geoffrey Clark Charitable Trust Community Food and Health Scotland The Diageo Foundation The Evelyn Drysdale Charitable Trust W G Edwards Charitable Foundation ELPD Charitable Trust The Jane Margaret Errington Charitable Trust The Ian Fleming Charitable Trust

37 The Gamma Trust Garnett Charitable Trust Miss A J I Gower’s Charitable Trust The James and Patricia Hamilton Charitable Trust Miss I F Harvey’s Charitable Trust The Christina Mary Hendrie Trust Miss E C Hendry’s Charitable Trust The M V Hillhouse Trust IBB Trust Inchrye Trust The JTH Charitable Trust Kinburn St Andrews Charitable Trust R J Larg Family Trust Health and Social Care Alliance Scotland J Macdonald Menzies Charitable Trust The R S Macdonald Charitable Trust The New Maclay Murray & Spens Charitable Trust The Mainhouse Charitable Trust The Annie McLean Trust for the Elderly Hugh and Mary Miller Bequest The Ronald Miller Foundation The Elizabeth Frankland Moore and Star Foundation The Morton Charitable Trust Margaret Murdoch Charitable Trust The Netherdale Trust Northwood Charitable Trust The Nuffield Foundation People’s Health Trust People’s Postcode Trust The Pixel Fund Grace Rae Trust The Robertson Trust Row Fogo Charitable Trust Souter Charitable Trust The St Katharine’s Fund Stichting Teuntje Anna Strathclyde Police Benevolent Fund

38 Talteg Limited Templeton Goodwill Trust The Tour Trust The Tulip Charitable Trust The Tweedie Miller Charitable Trust The Twitten Charitable Trust Voluntary Action Fund Westwood Charitable Trust The J & J R Wilson Trust The John Younger Trust

Corporate donors Aggreko UK Ltd Aviagen Ltd BAE Systems Bank of Scotland Foundation Barclays Bank plc Barclays Stockbrokers Beam Global Spirits & Wine Bupa Care Homes Burness Capita plc DHL Dulux Decorator Centres Ensco Offshore UK Ltd Ernst & Young Festival Theatre Finglas Consulting Ltd Hall’s of Broxburn HSBC Bank plc Ignis Asset Management James Kingan & Sons Ltd Johnston Carmichael Macphie of Glenbervie Ltd Martin Currie Charitable Foundation McGrigors

39 Meallmore Ltd Miller Beckett & Jackson Mitchells & Butlers Leisure Retail Ltd Mother India’s Café Nestlé Network Rail Nexen Royal Bank of Scotland Group Sainsbury’s Santander Scottish Building Society Ship Hotel Standard Life Tesco Bank Tesco plc The Times Virgin Media Walter Gerrard & Co Yorkshire Building Society

We have endeavoured to ensure this information is accurate but we apologise for any accidental omissions, misspellings or oversights.

40 Income and expenditure 2011–12

The statement of financial activities shows that total resources of £15,989,196 were up by 17% on the previous year. Expenditure rose by 11.70% to £14,837,173.

Consolidated Income and Expenditure Account For the year ended 31 March 2012

41 2012 (£) 2011 (£)

Total incoming resources from generated funds 5,412,588 3,795,324

Total incoming resources from charitable activities 10,576,608 9,867,515

Total incoming resources 15,989,196 13,662,839

Costs of generating funds (1,070,075) (600,072)

Resources expended on charitable (13,728,939) (12,649,389) activities

Governance costs (38,159) (32,786)

Total resources expended (14,837,173) (13,282,247)

Net incoming resources before 1,152,023 380,592 transfers

42 43 Income Local authority grants 36% Fundraising, trusts and donations 24% Other 23% Legacies 9% Health boards grants 5% Scottish Government and specific grants 3%

Expenditure Care related services 87.8% Support costs 4.0% Fundraising 3.4% Involvement 1.5% Awareness raising 1.0% Campaigning 1.0% Research 1.0% Governance 0.3%

44 Visit us at www.alzscot.org for news, information, help, events, campaigns and more.

The information in this Annual Review is also available in regular print on our website, or call 0131 243 1453 for a free copy. Our full audited accounts for the year ending 31 March 2011 are available on our website at www.alzscot.org/accounts2012

Where we are National Office: 22 Drumsheugh Gardens, Edinburgh EH3 7RN, Tel: 0131 243 1453

Highland, the Western Isles & Orkney Regional Office Regional Manager: Maxine Johnston Dementia Resource Centre, Unit 2, Strothers Lane, Inverness IV1 1LR; Tel: 01463 711707.

Glasgow, East Dunbartonshire & Lanarkshire Regional Office Regional Manager: Sarah Burgess Dementia Resource Centre, 81 Oxford Street, Glasgow G5 9EP; Tel: 0141 418 3930.

Argyll & Clyde Regional Office Regional Manager: Jan Johnston 32 Riccartsbar Avenue, Paisley, PA2 6BG; Tel: 0141 887 4902.

Grampian, Tayside & Shetland Regional Office Regional Manager: Fiona Roberts 492 Union Street, Aberdeen, AB10 1TS; Tel: 01224 644077.

45 South East & Central Regional Office (covering Borders, Fife, Forth Valley & Lothians) Regional Manager: Helen Hay Unit 114/115 Stadium House, Alderstone Road, Livingston, EH54 7DN; Tel: 01506 533108.

Ayrshire and Dumfries & Galloway Regional Office Regional Manager: Julie Sinclair Dementia Resource Centre, 8 Gordon Street, Dumfries, DG1 1EG; Tel: 01387 261303.

www.alzscot.org © 2012

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.

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