Winter 2012/13 - Issue 77 £1.50 (Free to members)

Inside - Understanding the work of the Care Inspectorate

Benefit Delivering changes nurses integrated coming in leading by dementia 2013 example care – a new model Chief Executive’s comment

On behalf of everyone at Alzheimer our partners in the Dementia Dog I would like to wish all initiative. We have also witnessed our readers and members the the evolution of very many new very best for 2013. I hope you partners and supporters as part of enjoyed the festive season and I the large number of exciting new look forward to sharing our news Dementia Friendly Community with you as we continue to make initiatives that are developing progress in our quest to improve across the country. These new the lives of people with dementia, partnerships build on the long- their partners, families and friends standing relationships that we throughout 2013. have with our local authority and NHS partners and our colleagues So much happened in 2012. across the Third and Independent One real achievement was that Sectors. we opened up new Dementia Resource Centres in , These new partnerships and the Greenock, Inverness and Dumfries, desire for people in communities each of them helping to bring and organisations to help our us and our cause closer to local cause has been both overwhelming communities. Taking dementia ‘to and inspiring, and I look forward the High Street’ in this way also to building on them this year. helps to diminish the stigma and Dementia is becoming everyone’s fear that too many people have business; and I truly hope this had to live with for too long. The makes a huge difference to the Centres have all been extremely sense of belonging and security well supported by local people that people living with dementia and received significant financial enjoy in our communities. contributions from various local fundraised initiatives. Without this We believe that these many support it would not have been creative and constructive possible to open so many new partnerships demonstrate that resources and I would like to pass Scotland is beginning to truly face on my sincere thanks to every dementia together. This year we person, business and Trust that has must build on this. The work of helped make this possible. our closest partners, the Scottish Dementia Working Group and the You will also see in this edition National Dementia Carers Action that we recently launched two Network, will be vital in ensuring major initiatives in partnership. we fully achieve the changes we all We opened a new Alzheimer want to see. Scotland Policy and Practice Centre with the University of the West Together with all our partners, of Scotland; and we launched a with our many thousands of new Football Reminiscence Hub members, our army of volunteers, at Hampden Stadium with our our many supporters and our partners at the Football Museum dedicated staff we are an immense and support from BUPA and the force for change. And together People’s Postcode Lottery. This we can make 2013 as historic and year we have also enjoyed new successful as 2012. partnerships with organisations such as School of Art, Henry Simmons Dogs for the Disabled and RNIB, Chief Executive, Alzheimer Scotland

2 Alzheimer Scotland News

Centre for Dementia the problem facing us in Scotland Policy and Practice launched and beyond. UWS is stepping at University of the West of forward and taking up this Scotland challenge and we are extremely pleased to work in partnership Monday 10 December saw the with them. We hope others will launch of Alzheimer Scotland’s follow this lead so that we can fully new Centre for Dementia Policy address one of Scotland’s most and Practice, which will operate pressing public health issues”. within the University of the West of Scotland’s Institute for Older The UWS Institute of Older Persons’ Persons’ Health and Wellbeing, Health and Wellbeing aims to launched on the same day. establish a centre of excellence, advancing knowledge relating to The Centre will be led by Debbie ageing, with a view to improving Tolson, Alzheimer Scotland the health and quality of life of Professor of Dementia and Director Professor Debbie Tolson older people. It brings together the of the Centre. She will work skills and knowledge of staff within alongside the recently appointed Chief Executive of Alzheimer higher education institutions, the Alzheimer Scotland Professor Scotland, Henry Simmons, said NHS, local authorities, businesses, of Dementia Care, Dr Graham “We are delighted to launch and not-for-profit organisations, in Jackson, and an Alzheimer Scotland this new Centre in partnership order to promote the development Reader/Senior Lecturer in Dementia with UWS. No-one should of policy and practice relating to Care (yet to be appointed). underestimate the size and scale of older people.

Alzheimer Scotland Nurse now in each NHS Board

Following our successful with Kay and some of strategic and professional national fundraising appeal (spearheaded Scotland’s Allied Health Professional leadership and advice for this key by the Dowager Duchess of (AHP) Consultants, including group of staff in Scotland. The Hamilton) and with the support of Elaine Hunter, National Allied next issue of Dementia in Scotland the Scottish Government, there is Health Professionals Consultant, will include an article on the role now an Alzheimer Scotland Nurse who is seconded to Alzheimer of the Allied Health Professional in Consultant/Specialist in every Scotland for two years to provide dementia care. Scottish NHS Board.

This is a huge achievement in terms of improving standards of hospital care for people with dementia in Scotland. Our Dementia Nurses will work closely with their NHS colleagues, particularly the Dementia Champions, to implement key strategic targets for dementia care in our acute hospitals.

Many of our Nurse Consultants were able to attend the launch of our Centre for Dementia Policy and Practice. They are pictured here

3 Alzheimer Scotland opens Hampden Hub and launches Football Memories League

be the base for the Football The Football Memories League Memories League – the latest has Divisions based on geography, development in our Football with 30 teams across Scotland. Memories Project. The people taking part in the groups have all chosen their team Former footballers Peter Cormack, name and their team colours, Billy Hunter, Alan Anderson, Colin giving a sense of belonging and Jackson and the legendary Lawrie provide an identity. The Hampden Kenny Valentine (Bupa), Clara Govier (People’s Reilly were on hand to celebrate. Hub provides access to an image Postcode Lottery) and John Laurie (Alzheimer None of this would have been collection which is unique in Scotland) officially open the new Hampden Hub possible without the tremendous football and will cater for the wide At the end of November we were support from players of People’s range of teams which our people delighted to officially open our Postcode Lottery, Bupa Care Homes support. Hub staff will co-ordinate brand new resource at Scotland’s and the generosity of countless the national project and support national football stadium, the groups and individuals across for the staff and volunteers who are Hampden Hub. This will also Scotland. involved.

New Dementia Resource Centre for Dumfries

same situation. It will also display volunteering opportunities and be a resource for other organisations and Alzheimer Scotland services in the region.

Move for Stranraer Services

Not to be outdone, our Stranraer and Wigtown Service has also been on the move. After a few hiccups and delays, our Stranraer Resource Centre is now up and Our latest Dementia Resource ways to increase the local support running at 67 Hanover Street. The Centre officially opened on 18 opportunities available to people first event to be held in the new October at an event attended by with dementia. It will run day facility was the Forget me Not local MSP Elaine Murray, Alzheimer and evening care services, Café, which was a huge success Scotland’s Convener John Laurie and therapeutic activities, carer support and feedback from all those who Chief Executive Henry Simmons, and education, peer support attended was very positive. We along with major donors towards groups, self-management courses will also be running support groups the centre, local volunteers and staff. and training for staff and health and our Football Reminiscence care workers. It will also provide an group at the new premises. The move to the new premises advice and information service. at 8 Street, Dumfries was The Centre will also be used We now have two new posts to the shortest move in our history, to develop new activities such add to our existing staff team of from our previous address at 1 as exercise groups, football Lynne McGhie, Project Worker; Gordon Street but represented a reminiscence activities, singing Judi Shaw, Dementia Advisor and huge amount of work for our staff groups, a café and baking/ Caron Kennedy-Stewart, Service team getting the beautiful new cooking groups. Such activities Administrator. Shona Sneddon centre fitted out while keeping our are vital in reducing the social takes on the role of Community services going. But all the hard isolation of people affected by Post Diagnostic Worker and work was worthwhile. dementia; providing a relaxed social Kirsty Ashbridge is now Community environment and an opportunity Activities Organiser in addition The new Dementia Resource for people with dementia and to her existing duties at Stranraer Centre will be used in a variety of their carers to meet others in the Day Care.

4 use of drama to explore experiences Town Centre – aiming to of early onset dementia and priorities for developing specialist be a Dementia-friendly community support services. Part of the project will include the creation of professionally acted video-vignettes, co-directed by service users, which will serve as tools for future research and dissemination activities.

Nicholas will be working with service users and staff at our Early Onset Support Service (LEOSS). This project represents the initial stages of a long-term research and knowledge exchange relationship with staff and families at LEOSS.

First Jim Jackson Essay On World Alzheimer’s Day on how they can get involved. prizewinner 2012, Alzheimer Scotland, NHS This is a work in progress, so watch Lanarkshire, this space! In September 2011 when we Council, and VOX (Voice of launched the Alzheimer Scotland Experience) got together to launch New Branch in Dementia Research Centre, based Motherwell as the first dementia- within (and in partnership with) friendly town centre in Scotland. Our new Inverclyde Branch held its The University of Edinburgh, we Fifteen businesses agreed to sign first AGM in October following a also launched the Jim Jackson Essay up to action plans on the day, busy year which involved attending Prize, which commemorates the including Asda, Boots, conferences, raising funds through late Jim Jackson OBE, former Chief Fire & Rescue and Funtastica various activities, taking part in Executive of Alzheimer Scotland, Homestyle. Their commitment will several representative groups, who provided the vision for the lead to dementia-friendly status holding two awareness raising founding of the research centre. being achieved when their action events and starting up a social/ plans are completed and evaluated. activities group in Gamble Halls, The first winner of this prize is Gourock (every Monday 1.30- Edinburgh University 4th year The sorts of issues in the action 4pm), to name but a few. The aims medical student, Liana Romanuik plans include staff being given of the Branch are to campaign on who received a very welcome hints and tips guides to carry with behalf of people with a diagnosis cheque for £500 for her moving them, staff awareness sessions and and their carers, respond to public essay entitled “Painting on torn support with signage. consultations, raise awareness of canvas”. Jim’s widow Jennie and dementia, and organise activities their daughter Fiona were among Those attending the launch event to help those with a diagnosis and those present to see Liana receive heard representatives from the their carers. her award from Professor John various organisations involved but Starr and Alzheimer Scotland Chief also from Agnes Houston from the Branch members meet on the 2nd Executive, Henry Simmons. Scottish Dementia Working Group Tuesday of every month (1.30- who spoke passionately about her 3pm) in “Your Voice” premises, 12 need to keep well and active and Clyde Square, Greenock. For more what helps and hinders that aim in information, contact Rose Mary her community. Bowes, Branch Chair, Your Voice, 12 Clyde Square, Greenock, PA15 1NB. The Dementia Friendly Community working group is now tasked Research Centre news with supporting each of the 15 businesses with their plans and Alzheimer Scotland’s Dementia Liana, centre, with Professor Starr and Jennie Jackson developing sessions and other tools Research Centre has awarded for support. It will then follow funding to Nicholas Jenkins, You can read Liana’s essay on up on the remaining 280-plus Chancellor’s Fellow at the School of the research centre website at businesses in the Town Centre who Health in Social Science, University www.alzscotdrc.ed.ac.uk/images/ have already received information of Edinburgh for a study piloting the liana%20romaniuk%20essay.pdf

5 Maintaining How does the Care I see our role as not just regulatory Inspectorate’s work impact but providing advice and support. standards across on people with dementia? This involves helping all services that provide care for people with Scotland’s We monitor standards in Scotland’s dementia gain the skills to provide 900 care homes, as well as the highest quality care. Equally, care services: inspecting care services in the if at any time standards fall below community. Our most recent care what we consider to be acceptable, understanding the home census showed that half of we take immediate steps to protect all residents in Scotland’s care anyone who is receiving care, work of the Care homes have some degree of whoever and wherever they are. Inspectorate dementia. Just over 8% of care homes said they considered As well as being responsible for dementia care to be their main care homes, we also inspect The Care Inspectorate regulates area of provision. That’s a hugely community-based services which and inspects care services across important group of people are widely used by people with Scotland. As well as ensuring that we’re serving. As well as carrying dementia. As self-directed support services are delivered to a high out a yearly census, we collect becomes established we will standard, the Inspectorate is playing information through a more inspect this too. an increasingly important role in detailed annual return. On the promoting best practice. Dementia most recent return, 73% of care How do you ensure your in Scotland spoke to Annette home services said that they were inspectors have the specialist Bruton, the Care Inspectorate’s equipped to care for people with skills needed to capture Chief Executive, to discover how dementia. That implies the other the views of people with the organisation is responding to 27% don’t feel equipped. It’s a dementia? the changing needs of people with significant statistic and shows dementia receiving care in Scotland. there is a lot more work to be We use a range of approaches to done to ensure that people with make sure our inspection teams dementia receive the highest can gather the views of people with standards of care. dementia and understand their care needs.

6 We currently use Talking Mats * managing falls and fractures in care very active and important Involving as a communication tool, both homes for older people. People Group. Its members are for people with dementia and volunteers who play a vital role in other people who may have How have the Dementia acting as a sounding board and communication difficulties. This is Standards influenced the watchdog, ensuring the work we a very effective way of gathering way inspections are carried do encompasses all the issues that information directly from people out? Are you seeing an are important to them. The group who use services. improvement in practice as a includes people with dementia and result of the standards? their carers. We see the group as In addition, we are working with a vital resource for understanding the Care and Social Services The Dementia Standards have been what people with dementia and Inspectorate Wales to introduce tremendously helpful and we have their carers think we should be the Short Observational Framework been doing intensive training with doing, rather than the other way for Inspection 2 (SOFI 2). This our staff so they know what to round. was developed by the Bradford look for and what represents best Dementia Group and the Care practice. We apply the standards We recently published Involving Quality Commission. It is based during inspections and measure People, Improving Services, our on Dementia Care Mapping and is performance against them. three-year plan for involving the designed to help inspectors capture public in the work we do. This was the experiences of people who use co-produced with the Involving services, but who may not be able People Group and our lay assessors. to express their views themselves. It was the group themselves who SOFI 1 was already being used by presented it to the board, and I colleagues who joined us from the think this illustrates how integrally Social Work Inspection Agency, so they were involved in developing it. we already have some experience of using SOFI within the Care Lay assessors play a vital role in Inspectorate. the inspection process. They are current or former users of services We are developing a toolkit for We don’t yet know what impact – or their carers – who volunteer to our inspectors that uses SOFI 2, the standards have had because take part in inspections. Between and with the help of colleagues in there isn’t a sufficient body of now and next Easter we will be Wales are currently looking at evidence. We estimate that we will running three pilot projects looking how it works in practice. It’s need two years of inspection data at broadening our inspection teams intended to supplement talking to see how much of a difference further. to individuals, rather than being they are making. However, from an alternative to this. Observable our perspective there are already The Care Inspectorate has standards are useful, but actually clear advantages. Inspectors a commitment to helping hearing what service users work in a much more fine-tuned people remain in their and carers say is vital. Used in way thanks to the existence of communities for longer. How combination, Talking Mats and the standards. And because they is it achieving this? SOFI 2 are a powerful set of tools receive more specialist training, for unlocking what people who use they are able to highlight aspects The current health and social care services think. of services that fall below the agenda places a strong emphasis guidance set out in the standards. on enabling people to remain We have also been training within their communities where Dementia Champions within the How is the Care Inspectorate possible, with the provision of organisation. They have time involving the wider public in long-term care when they need it. within their roles to stay up-to-date the work it does? Our contribution – strengthened and put out bulletins about best by the new self-directed support practice to all colleagues. We have a legal duty to listen to legislation – is in developing a feedback from the public and I new model for inspection. This As well as dementia-specific think we have come a long way in will reflect the entire health and work, we publish self-assessment achieving this. Our goal is to bring social care agenda and will involve tools promoting best practice more voices to a regulatory regime us working jointly with Healthcare that will benefit all older people that has been set up on the public’s Improvement Scotland. receiving care, including people behalf. with dementia. These have a strong Initially this joint work will focus emphasis on prevention The board of the Care Inspectorate on care at home, enabling us to and learning by example. An includes people who use services develop a methodology that looks example is our new guide on and their carers, and we also have a at the whole care journey, rather

7 than focusing on isolated episodes, understanding that we will refine more intensive and longer-term such as an admission to a care the process as we go along. Instead care often provided latterly. home. Viewing the whole journey of inspecting ‘the service’, we are will enable us to understand the inspecting ‘the outcome for people We would like to develop this periods when people may only who use the service’. information so that as well as need a low level of support and measuring quality, the public appreciate how their needs change How about self-directed can use it to understand how over time. It will also enhance our support? care services can be of maximum understanding of what precedes a benefit to them. Historically our care home admission, and help find The self-directed support reports have not been written from out whether the care home system legislation hasn’t been enacted the public’s perspective and we are is flexible enough to allow short yet so this isn’t an area we are working on reshaping these so that admissions. This ‘whole journey’ inspecting yet. Everyone is they tell a story about the quality approach will shed light on the behind self-directed support, and impact of care that is useful relationship between different although we are aware it won’t and relevant to the public. This of agencies and how they work be an easy area to inspect – for course will supplement our core together. Families become very example we don’t have the right to work of ensuring that services are frustrated when agencies don’t talk go into people’s homes. Our goal is safe and delivered to the highest to each other. to try and set up local forums that standards. will bring people using self-directed How will the post-diagnostic support together. This ties in with Can you describe the Care support guarantee help our wider work on involving the Inspectorate’s role in improve care in the longer public as much as possible. Tapping promoting best practice? term? into good local knowledge will be key to the success of inspecting Next year we are planning The one-year post-diagnostic self-directed support services. on introducing best practice support period should be the time We will also receive information conferences targeted at when someone with a diagnosis through the complaints system. In practitioners, as well as people of dementia has truly integrated terms of how they are delivered, using care services and their support put in place. As we assess care at home and self-directed families. The idea is to bring people the care delivered during this support have a lot in common and together to showcase examples critical period, we will be able to it’s likely the inspection tools used of good practice. We felt it was discover how it improves long- for both will converge. It may not important for us to provide the term outcomes for people with be a straightforward and easy task, public and professionals with dementia. For instance, we will but it’s hugely important and feedback following the introduction be able to monitor whether care exciting. of the Dementia Standards. By the packages are suitably flexible. time the conference takes place Our role will be to capture the the standards will have been in How does inspecting care best processes for describing effect for around 18 months, so at home services work in the impact of these new services their impact should be becoming practice? so that we can describe their clearer. We also plan to run events outcomes. This will help build an on listening to people and shaping This is a challenge, but the evidence-base for how effective services based on the needs of information we can gain from they are. It’s complex and certainly users. In addition, from next year these kinds of inspections is very not frivolous, but I think it’s a great we will start showcasing the good valuable. The starting point is to prize if we can describe the factors practice that we encounter by select enough people who are that have a positive impact on adding it to our website at receiving care at home to provide people’s lives. www.scswis.com results that give a meaningful overview of the services. We begin How is the Care Inspectorate * For more on Talking Mats, visit by reading case notes and tracking raising awareness of best www.talkingmats.com the supporting evidence. Then practice? we visit people and see if what’s written in the case history reflects The information we are capturing is what’s happening in practice. beginning to track the experiences We are taking a developmental of people throughout their entire approach to how these services journey through the care system. are inspected because this is a At the early stages we are now new area. Health boards, local evaluating community-based care. authorities and the private sector Over time we will continue to see are supportive and there is an personal journeys progress with

8 in Airdrie (Monklands), Lanarkshire nurses leading (Hairmyres) and Wishaw, as well as associated hospitals. by example All Band 6 staff now have monthly OPAC (Older People in Acute Care) meetings where they discuss good practice, sharing what works and what doesn’t, and supporting each other in older people’s care in whichever department they work in - acute medicine, orthopaedics, accident and emergency or outpatients, for example.

Assessing patients for possible cognitive impairment

Lynn Hogg is a Charge Nurse in the pre-admission assessment department at Monklands Hospital working with patients coming in for elective (planned) surgery. She was particularly interested in Front Row (L to R): Lynn Hogg, Alan Somerville, Donna Marie McRoarty, Norah McCluckie Back Row (L to R): Maureen Taggart, Joan James, Dominique Docharty, Susan Wilson, Veronica McGuigan. looking at the Abbreviated Mental Test (AMT) which uses four simple questions to flag up potential Improvements to the care delivered for nurse uniforms. The nurses cognitive impairment and the need to people with dementia and felt this had an effect on how they for further assessment: their families in acute hospitals is, were perceived by others – they as readers will know, a key aim were often the ones leading on • How old are you? of Scotland’s national dementia care delivery on a daily basis but • What is your date of birth? strategy. However, the media often very little was being invested • What is this place? pick up on the negative aspects in them especially in relation to • What year is it? of patient care and a lot of the training, and now their familiar improvements and good ideas being uniform was being changed to A score of 3 or less would lead to introduced by the people actually boot!. a referral for further investigation. delivering care fail to be recognised. Lynn has a standard letter which Joan and her senior nurse she sends to the person’s GP or I travelled to Monklands Hospital colleagues picked up the training consultant saying what the AMT in Airdrie, at the invitation of Joan challenge, which has led to score was. This may be the first James, Divisional Nurse Director more than 60 charge nurses time that the GP becomes aware of for acute services within NHS receiving training in delirium a possible problem. Lanarkshire, to meet with a group and dementia – delivered by the of Band 6 nurses (Charge Nurses Practice Development Centre in (An AMT should be carried out and Deputy Charge Nurses) who NHS Lanarkshire and supported by with any older person coming have been coming up with their own the Alzheimer Scotland Dementia in to hospital but it is not always ideas for improving the experience Nurse Consultant, Maureen done, as some inspections of acute of people with dementia and their Taggart. This was followed by five hospitals have shown). families in hospitals. days’ training at the University of the West of Scotland on their Lynn realised that the best way to Before hearing from the nurses Older People’s Programme – all implement changes or procedures themselves, Joan gave a bit of of them graduated. The interest is through staff understanding not background leading up to some of and enthusiasm engendered only what to do but why they are the changes that have been made by this training meant that the doing it – this makes them more in acute hospitals in Lanarkshire. nurses wanted to take the lead on aware and more focussed. Having Surprising to me (until it was developing new initiatives in their implemented a staff awareness explained) was that a catalyst own wards and departments. This package, Lynn has audited on for these developments was the enthusiasm was replicated across a weekly basis whether or not introduction of a change of colour the three main acute hospital sites staff are carrying out the AMT as

9 required. They are, with 100% compliance recorded in the few weeks leading up to my visit.

Lynn also gives out a form called Getting to know me to individuals or carers for them to complete giving information about the person’s life, likes and dislikes, key relationships, etc, so this information can be incorporated into the person’s care while in hospital.

Intentional rounding

Alan Somerville works in the Renal Unit, both in the ward and in the dialysis unit. Like Lynn and the other nurses I spoke to, he also uses the Getting to know me form to help deliver good personalised care. Surprisingly, he also applies AMT screening in his work. As he says, some chronic dialysis patients as well as helping to understand test of change together with the often don’t go to their GP as they patients better. In one example, name or names of those responsible are seen so regularly in hospital – a younger person with dementia for carrying out the task, when the AMT screen in the renal unit needed to have a CT scan but and where it is to be done. The may be the first sign of a possible was very agitated and staff were Do section describes what actually cognitive impairment which needs considering sedation. His form happened when the test for change to be flagged up to the GP. suggested that he would settle well was conducted. The Study section if given a cup of coffee, so that was describes the results and how they Alan spoke about the introduction what staff did and the patient was may be improved; while the Act of intentional rounding in his then happy to get the scan. section describes what modifications ward. This is not some arithmetic need to be made to the plan for the calculation, but the practice of Testing change next cycle of change. taking time to specifically ask patients on a regular basis if Donna Marie also showed me Outpatient clinic record they need to go to the toilet or if examples of the range of work sheet they need anything else, rather sheets for testing change that she than waiting for the patient to has introduced in her ward, as Norah McCluckie is Deputy call for assistance. This sounds well as a sample treatment plan Charge Nurse in the Orthopaedic like an obvious thing to do, but form she is piloting for testing and Outpatient Department where anyone who has visited a relative treating patients for infections, they can often see 70 patients per in hospital knows that sometimes under the Adults with Incapacity clinic with sometimes 2-4 clinics the call for assistance comes too (Scotland) Act. The pilot grew out all going on at the same time. late and there is an “accident” of a realisation that there was Although they try hard to fast – unpleasant for everyone and poor compliance with AMT track people over 60, some days it certainly not dignified for the screening and consideration of is easier than others. Norah had patient. the Adults with Incapacity Act as observed that patients coming in a routine part of hospital alone or even those with a relative “Getting to know me” in admission and development of often couldn’t remember what practice treatment plans. had happened or been said at the clinic. So she devised a very simple Donna Marie McRoarty is Charge Each work sheet gives a form which is given to the patient Nurse in Ward 2 - Infectious description of the situation, the and records the date attended, Diseases, and a Dementia background, an assessment of who the nurse and doctor were, Champion. She gave some what needs to be done and a set of what the doctor said and whether very good examples of how the recommendations. It then follows or not the person has to return to information in Getting to know me a cyclical Plan, Do, Study and Act the clinic and when. It also gives a had been used to develop good format. A Plan is drawn up listing contact number for the clinic and relationships with patients’ families the tasks needed to set up each for ambulance transport.

10 This simple but effective form is ability was of concern. She had treatment, the green box is now being rolled out to other introduced orientation boards in completely coloured in, indicating departments; patients and their each ward which display visiting that that the required certificate families are happy to have a written times, meal times and what of consent to treatment and record and Norah has noticed a happens during the day, which associated treatment plan has been drop in follow up calls from family patients and relatives seem to put in place. members and care home staff who appreciate. She has also trialled now have a better idea of what clutter boxes where patients can Within two months of introducing happened at the outpatient clinic. put their odds and ends out of the this new system, Susan says there way during meal times so their was 100% compliance. There Changes in Accident & trays aren’t cluttered and they have been some dips but to no Emergency can concentrate on eating. lower than 90% - and there has Speaking about her role as a been a reduction in psychogeriatric Veronica McGuigan works in A&E Dementia Champion, Dominique referrals at the same time. where they see over 200 patients says she is now being asked to on a normal day, about a quarter help staff on other wards who are Dementia friendly of them aged over 65. A&E caring for people with dementia. environments can be a very noisy, frightening The local psychogeriatrician had place, particularly for someone also experienced fewer referrals Joan and her colleagues are with dementia, so Veronica and from other parts of the hospital – making a huge effort to create a colleagues have been working staff seem to be problem solving better experience for people with hard to change that. A room in for themselves and are becoming dementia and their families. Staff a quieter part of A&E has been more knowledgeable, using are working in partnership with identified giving a more relaxed Dementia Champions for advice the Estates Department to produce friendly environment where as required. and implement a specification family members can be with their for dementia friendly wards and relative. Staff triage those over 65 Green boxes departments; better signage and to get them seen quicker and each clocks have been introduced to patient undergoes an AMT screen Several of the nurses and the help orientate patients; coloured as well as being assessed for risk of sample paperwork they showed crockery has been introduced; carer falls. Signage has been improved me mentioned green boxes. This is coordinators have been introduced and commodes with contrasting a system to highlight and identify at each of the three main hospitals coloured seats purchased. Relatives where capacity assessments are and carers champions are being are asked to fill in theGetting to required. Green boxes are drawn recruited for each ward. know me form in A&E too. Veronica on the patient whiteboard and explained that it’s important to act as a prompt for staff to ensure Hospital inspections get things right from the start – patients’ capacity for consent to the patient’s experience in A&E treatment is considered. They Each of the 3 acute hospitals can affect the rest of their stay in also act as a communication aid in Lanarkshire have undergone hospital and it’s also important to between nursing and medical inspections by Healthcare get the paperwork right – if not, it staff. Susan Wilson, Charge Nurse Improvement Scotland – can cause problems for staff in the in Orthopaedic Trauma and a announced and unannounced. wards. Dementia Champion explained I asked Joan James if that was more. daunting experience? Food is now being delivered to A&E – often people get hungry Nursing staff draw a green box While Joan agreed that inspections waiting. Giving someone a on the whiteboard next to a can be pretty scary at the time, sandwich and something to drink patient’s name when they believe they can be a force for good – can help bring down anxiety levels. a capacity assessment is required. identifying the strengths in services A blank green box indicates that and giving credit where it is due. Dementia Champions – an assessment has not been Where weaknesses are identified spreading the word completed. If medical staff have they can act as an incentive to carried out a capacity assessment improve further and a justification Dominique Docharty works at and determined that the patient for more resources or funding Hairmyres Hospital where she is has capacity to make decisions for additional staff training, for also a Dementia Champion. She about some or all aspects of his example. said she had been inspired by her or her treatment a line is scored colleagues at Monklands to put through the box. Where an Maureen Thom similar changes in place, including assessment establishes that the Editor, Dementia in Scotland the use of a red triangle to patient does not have capacity indicate a patient whose cognitive to make decisions about their

11 Delivering Integrated Dementia Care: new model of community support from Alzheimer Scotland

Scotland has made significant Alzheimer Scotland has developed of the way we deliver community progress in addressing the key a new integrated model of care for care services for people with priority areas set out in the Dementia people with moderate to severe dementia, their carers, partners Strategy in 2010, and in the dementia living in the community, and families. This is the first major Scottish Government’s commitment which is described below. The public health report to demonstrate to a guaranteed one year’s post- Scottish Government’s plans to the real difference that could be diagnostic support from a named integrate health and social care made to people’s lives through the and trained person, based on provide an ideal opportunity for integration of health and social care Alzheimer Scotland’s 5 Pillars model. changing how services and support in Scotland. However, the present lack of cohesion are delivered to people with between health and social care dementia, their partners and families. The report presents a blueprint services means that there is still much for the future: a model that will to be done to ensure that all people Alzheimer Scotland’s new report, enable health care interventions affected by dementia have access to Delivering Integrated Dementia Care: to work hand-in-hand with social consistent, therapeutic, high quality, the 8 Pillars Model of Community care interventions. It shows that personalised support services. Support, calls for a radical reform dementia is an illness with many

12 social implications, one which can Who is the Model for? Interventions to support the carer be tackled most effectively through must meet their specific needs a model that integrates and The one year’s post-diagnostic and circumstances in order to be co-ordinates health and social guarantee will provide those effective. care to best meet the needs of newly diagnosed with early stage the person with dementia and the dementia with support with Keeping the status quo? people supporting them. adjusting and managing the likely impact of the illness, both Demographic changes and This new model builds on key emotionally and practically. The financial challenges mean that developments in relation to post- 8 Pillars Model will then provide a current models of care are not diagnostic support by providing a coordinated approach when people sustainable in the longer term. The vision of how the care of people need more support to live in the integration of health and social care with dementia living at home with community. provides an opportunity to create moderate to severe dementia can a structured, coordinated and be similarly transformed. There will, of course, be some strategic approach to community people who are diagnosed at a support for people with dementia Aim of the 8 Pillars Model later stage or whose dementia and their carers. progresses more rapidly who may The key aim is to build the not be able to benefit from the The 8 Pillars Model provides resilience of people with dementia post-diagnostic support model; local authorities and NHS boards and their partners, families and for them, the 8 Pillars Model will with a blueprint for restructuring carers to enable them to live in the be needed immediately after integrated dementia care so that community for as long as possible. diagnosis. resources are used to greatest It also aims to build on the one effect. year post-diagnostic support A bio-psychosocial model guarantee to ensure the impact of For further information on the the investment in early intervention Dementia is the interrelationship report and the 8 Pillars model is not lost. of neurological damage and contact: psychosocial factors ; the Each factor of the illness influences experience of the illness is Lindsay Kinnaird every other factor, and impacts on subjective and unique to each Policy & Research Officer the overall health and wellbeing of individual. A bio-psychosocial [email protected] the person and his or her carer. model of dementia brings together what is true in the When people with dementia do medical and social models of the not receive appropriate care and illness. It provides a framework treatment for the symptoms of for understanding the range of their illness, they become more factors that determine the nature of disabled than they should more dementia, progression of the illness quickly. Without the right support, and appropriate interventions. there is a gap between how people actually function and how they Effectively tackling the symptoms could potentially function. It is and consequences of dementia important to see the potential to requires a coordinated range of improve the lives of people with health and social care interventions. moderate to severe dementia living The main intervention for dementia at home. is human care and treatment; this encompasses a range of The 8 Pillars Model combines the therapeutic, psychosocial and health and social care interventions psychological treatments. required to respond to each aspect of the illness and provide Supporting the carer support to the carer. It promotes independence, citizenship and The experience of caring is also the right to participate as fully as unique to each individual; it is possible in society. influenced by a range of objective factors (relating to the tasks or activities of caring) and subjective factors (representing how the carer feels about their role).

13 New benefit changes could affect people with dementia

between individual and state. There is likely to be more emphasis on the individual to demonstrate their entitlement to a benefit, and benefits will come with more conditions attached.

Who will be affected?

People aged between 16 and 64 will be most affected. Although only a minority of people with dementia fall into this age group (around 3,000 in Scotland) the impact on them could be significant. For example, a person currently receiving DLA will be invited to make a claim for the new Personal Independence Payment. Also, a person who is diagnosed during the earlier stages of the illness may find it more difficult to demonstrate that they qualify for In 2013, some major changes to Disability Living Allowance (DLA) disability-related benefits. benefits will be introduced across will be phased out and replaced the UK. If you have dementia and with the Personal Independence People aged 65 and under often are aged 64 or under, or if you Payment. The aim is to cut the still have a mortgage and may still care for a person with dementia DLA bill by 20%, and one of the have dependent children living at and receive benefits, you may be lower rates of DLA will be abolished home. As a result, any financial loss affected. altogether. As a result of these can have a significant impact on cuts, some people will receive them and their family. What are the main changes? less money and fewer people will qualify under the new rules for PIP. Many people who care for a The two main changes will be the person with dementia are under introduction of universal credit What is the background to 65 and may have given up work and the replacement of disability the changes? or reduced their working hours living allowance with a new to provide care. If they receive personal independence payment The changes are being introduced benefits, they may be affected by (PIP). by the Westminster government to the changes. This could have a try and make the benefits system significant impact on the support Universal Credit is a single benefit less complex, and to encourage networks around people with that will replace lots of other more benefit claimants into work. dementia, whatever their age. separate benefits. These include: The current financial climate also • income support means the government is looking What will the impact be? • income-based job seekers for ways to reduce costs. The allowance reforms represent the biggest One of the biggest changes of • income-related employment and overhaul of the welfare state since the benefits shake-up will be support allowance it was introduced in 1948. the way people are assessed. • housing benefit Currently, claiming benefits such • child tax credit In future, payment of benefits will as DLA involves completing a self- • working tax credit. be based on a stronger contract assessment form. Although this is

14 long and complicated, the person support them in using this new this will safeguard entitlements filling it in can take their time and way of claiming benefits. to things like “passport benefits”. get specialist help and advice. These are benefits that are received The new Personal Independence Because the benefits changes automatically by people who Payment will involve a face-to-face are so wide-ranging and many already qualify for another benefit. assessment carried out by a private of the details have not yet been For example, if you already receive company called Atos. announced, it is difficult to provide higher rate DLA because of mobility a summary of their impact at the issues, you are entitled to a blue In 2008, when the Employment moment. We will publish additional badge as a ‘passport’ benefit. This Support Allowance was introduced, articles looking at the impact of right will continue in Scotland. new claimants had to have a face- the changes in detail as more to-face work capability assessment. information becomes available. Will the changes have any We know from this process that benefits for people with some people with dementia didn’t Coping with the changes dementia? have their needs or circumstances and making sure you get the accurately assessed during their right benefits Some aspects of the changes interviews. Assessors require may be beneficial for people specialist knowledge of dementia in The benefits system has always with dementia. For example, order to understand the capabilities been complex, and it is a good the element of the Personal of a person with dementia. It is not idea to seek advice about what Independence Payment that certain that all assessors have this you are entitled to claim and how relates to daily needs (formerly specialist knowledge. to go about claiming. If you need personal care) now makes provision advice, you can talk to a welfare for people who have difficulties A face-to-face assessment can be rights advisor. Arrangements vary dealing with money or planning difficult for a person with dementia, in different parts of the country, their finances. This is an area that particularly if the assessor doesn’t but you can normally speak to an is potentially very helpful for some understand their needs. Some advisor who is employed by your people with dementia. people may lose out because local authority, or by contacting an they will struggle with the new organisation such as the Citizens Also, it is currently very difficult assessment. The Department for Advice Bureau. They can provide for a person with dementia to get Work and Pensions has said that help with existing benefits or advise higher rate mobility benefit, but a relative or carer can be present you if you are making a claim for the new assessment will take both during the assessment. This is likely the first time. mobility and the person’s ability to be very helpful for a person with to plan and follow a journey into dementia, particularly if they wish Although the new benefits will account. Although it is not clear to challenge its outcome. Under involve a face-to-face assessment, how much weight will be given to exceptional circumstances, it may the outcome of this can be the journey planning element, this be possible for the assessment to challenged, and everyone has the could be helpful for a person with take place at the person’s home. right to ask for the findings to be dementia. looked at again. You can also ask For those who are assessed to appeal the assessment. Where Where can I get further correctly, many aspects of the new things go wrong, a welfare rights advice and information? benefits will be managed online, advisor will be able to help you such as reporting changes of through the process of challenging If you are concerned about the circumstances. Although there is a those decisions. proposed changes, you can phone lack of detail at this stage, an online our free 24 hour Dementia Helpline system may also be challenging Are there any differences in (0808 808 3000) or contact a local for people with dementia. The Scotland? advice agency such as the Citizens Scottish government has just Advice Bureau (www.cas.org.uk). published research which shows The Scottish Parliament has no Your local authority may provide a that not all people who will be influence over most of the welfare welfare rights service and contact claiming Universal Credit have changes. However, some aspects details should be available on their access to the internet. Even those of the changes have been devolved website. who could go online (at their to Scotland, such as council tax local library, for example) may feel benefit and parts of the social fund. unable to do so because of a lack of skills or confidence. Ministers are In August 2012, the Scottish looking at ways to help mitigate Government introduced new the impact of welfare reforms in legislation which will lessen the Scotland, including dedicating impact of some of the welfare funds to prepare claimants and reforms in Scotland. In particular,

15 Forget-me-not project goes from strength to strength

Alzheimer Scotland’s Forget-me-not project, based in Glasgow, is now four years old. The project has recruited and trained over 320 volunteers who offer emotional support to people with dementia who are living in care homes or hospitals. Volunteers might visit a particular individual regularly or take part in group events.

Staff at Bupa’s Quayside Care Home having raised funds by holding a Memory Walk

The volunteers get involved for different reasons. Some have family or friends who have dementia; others want to volunteer to develop new skills.

“My friend’s Gran was recently diagnosed with dementia…. I have been trying to support her. This brought back memories of my own Gran who had dementia later in life….more recently I have become aware of people affected by dementia earlier in life and I want to do something to help people and their supporters.” Forget-me-not volunteer

People with dementia benefit in different ways from the service. It’s a chance for some to get out more and continue taking part in activities; others look forward to a good blether.

16 “I feel that I become a Care homes are recognising the “I’m learning a lot about person again, we go on benefits too. Staff from a small being a volunteer and care home in Glasgow, Bellisle walks together, we talk House, and from Bupa Care caring for people with about the trees and she Homes contributed to the early dementia. When I first met describes them to me. She development of the project and with Sally [all names have in some care homes, Forget-me- is exceptionally nice and not volunteers are involved in been changed], her vision very patient.” reviewing care plans for residents. was very much intact; this Person with dementia Bupa Care Homes have also has deteriorated within generously donated to the project’s weeks and she is now running costs. Our Forget-me-not volunteers have practically blind. Learning supported people with dementia Darren Kelly, Manager of Bupa’s how to adapt, how to to carry on doing the things they Quayside Care Home, explains how change your methods of enjoy. These include activities the service has benefited residents: such as trips to the golf club to communicating, and how re-establish old friendships; visits to really tune in with the to Frasers for a make over; a night “The volunteer’s dedication at the opera; singing together; person is proving to be a has been very impressive. very interesting journey for reading poetry; talking about past Her kindness, compassion experiences in foreign lands; shared me. I think that my journey interest in music and films as well and ability to listen to as a volunteer and caring as past places and people of great the lady she visits has for people with dementia importance. Family members have undoubtedly had a positive also welcomed the project. is helping me understand impact on her frame of the real transition that can mind. The fact that she has “Having one to one time take place. The women I a friend who visits and chats for my Mum from the met originally no longer with her - and probably volunteer was appreciated look the same, respond the more importantly - listens by her and by the home. same, feel the same...every to her, is something she At the time the support single time I visit Sally or clearly cherishes during the started my Mum was very Mary , I have to be creative visit and impacts upon her demanding of staff time … with how I care for them, outlook way beyond her she was also jealous and how I communicate with memory of the visits. The suspicious when staff gave them, how I help them Forget-me-not project is an time to other residents enjoy the moments we invaluable resource for our … having the volunteer spent together.” resident and one which has provided respite for the Heather, one of our Forget- a hugely positive impact on staff and gave Mum the me-not volunteers her mental and emotional one to one time and well-being.” attention she very much The Forget-me-not project shows how much can be achieved by craved. This service was a Alzheimer Scotland depends on committed and caring volunteers. If Godsend.” volunteers to carry out our vital you are based in the Glasgow area Family member work. Forget-me-not volunteers and are interested in volunteering have also given time to other for the Forget-me-not project services including day care in visit www.alzscot.org or call Fay Glasgow and East Dunbartonshire; McCormick on 0141 418 3930 to the Scottish Dementia Working learn more. Group; our supported living accommodation service at Croftspar Place; our walking groups and Football Memories groups; and Glasgow Younger Persons’ service as well as assisting with Forget-me- not Project administration.

17 Fundraising News

Scottish Fundraising Awards success

Alzheimer Scotland was delighted to receive a trophy at the Scottish Fundraising Awards, beating off stiff competition from Cancer Research and NSPCC.

The award, in the Corporate and Trusts category, recognised the success of our recent partnership with Tesco and Alzheimer’s Society, and was accepted by Corporate Fundraiser Gillian Messelink and Gloria Coats from Tesco.

The partnership with Tesco raised £7.5million across the UK. The money raised is enabling Alzheimer Scotland to fund the Dementia Community Roadshow, new Dementia Advisor posts, our e-Helpline and dementia research.

Football Memories Project The partnership meant we would chosen as Weatherseal SPL benefit from a bucket collection charity partner at the six Scottish Premier League matches on December 8th and We were absolutely delighted to 9th. Despite the cold and dreich win the Weatherseal SPL Charity weather, Weatherseal staff and Weekend award for 2012. Celtic helpers and some of our own legend Danny McGrain helped volunteers were out in force at announce that Football Memories Inverness, Kilmarnock, St.Mirren, had won, thanks to so many of Motherwell and Tynecastle with the our volunteers and Alzheimer buckets on Saturday. On Sunday it Scotland supporters and football was the Dundee derby and there fans voting for us, so our gratitude was a great turn out. Sky TV filmed to all of you! a session in the Board Room at Dens Park with Football Memories supporters, staff and team members, and it was shown in the lead up to the game on Sunday on Sky Sports News. The final amount raised will be officially announced after Christmas.

18 Coast to Coast challenge success for Andrew Diary Dates continued from back page

Conference – Dementia research in the UK: nations & generations

The Scottish Dementia Clinical Research Network is holding its annual 2-day conference on 21 & 22 March at Management Centre.

Day 1 Research updates from across the UK The first day is for health professionals and researchers. Confirmed speakers include Prof. John O’Brien (Cambridge), Prof. Peter Passmore (Belfast), Dr Patrick Kehoe (Bristol) and Prof. Robert Woods (Bangor).

Day 2 How dementia affects the whole family The second day is for the public, especially people with dementia Andrew Forrest, who once Andrew said afterwards: and their carers. Speakers include lived and attended school in “Completing the 105 mile Coast Prof. Pauline Banks (University of Helensburgh, has just raised to Coast was both gruelling and the West of Scotland), Dr Gary more than £5000 for Alzheimer rewarding. In total it took 18 Stevenson (Stratheden Hospital), Scotland, the biggest donation hours and 28 minutes and with the Dr Maggie Robertson (Perth from any individual received by the tremendous generosity of friends, College) and Tommy ‘on tour’ Helensburgh Branch since it was family and supporters, the final Whitelaw. formed in 2008. total raised was in excess of £5000. This money will go to help fund Booking is now online at He did it by successfully competing local services in the Helensburgh http://www.sdcrn.org.uk/ in the gruelling coast-to-coast area and help raise awareness of resources/conference-2013 or challenge, a race that involves this illness. Alzheimer Scotland phone 01738 562 322. running, cycling and kayaking from needs the support of local people Nairn in the east to Balluchulish in as befrienders and helpers to add the West – a distance of 105 miles. to the excellent services already provided to those diagnosed with The man for whom he took up the illness.” the challenge, Ian King, a local businessman, watched proudly as Mr King and his wife, Grace, Andrew presented the money to expressed their pride in their son- Findlay McQuarrie, Branch in-law’s achievement as well as Chairman, in the Dementia their appreciation of the support Resource Centre, 16 East Clyde given by friends and supporters Street, Helensburgh. in the Helensburgh community. Donations in recognition of Andrew’s success can still be left at the Dementia Resource Centre.

Findlay McQuarrie Helensburgh & District Branch

19 Dates for your diary

Dementia Awareness Week 3-9 June 2013 Antiques Valuation Day The 2013 Dementia Awareness Week will have the theme of 25 April 2013 ‘Community Connections’. Our national conference will take place Chatelherault, Hamilton on Monday 3 June at a location still to be confirmed and will focus (10am – 2pm) specifically on health and social care integration. The week will give us an opportunity to showcase best practice in local communities, ways Do you have any hidden gems of overcoming isolation, dementia-friendly communities, community lying around the house? Always fundraising, awareness raising and a whole host of other activities. wanted to know if your great granny’s vase is Meissen or Ming? Fundraising events Bring along your treasures and the Why not start 2013 with training for one of our running, cycling or experts will reveal their secrets. walking events? Contact our Events Team on 0845 260 0789 or email [email protected] . New events are added or confirmed throughout the year – see the Fundraising section of our website at www.alzscot.org for the latest information…

Our services in Ayrshire are benefiting from a generous cheque for £1,000 from Marcello Baldassarra – a local businessman who ran the Glasgow half marathon in memory of his father. He was sponsored by many of his customers at his chip shop in Auchinleck.

Saturday 23 March Zipslide across the Clyde Sunday, 14 April Rock ‘n Roll Edinburgh Half Marathon Anita Manning (expert from TV’s Saturday 25 May & Edinburgh Marathon Festival of Running Flog It, Bargain Hunt and Antiques Sunday 26 May 5k & 10k on 25 May Roadtrip) and her team from Great Marathon, Relay Marathon and Western Auctions Ltd are working Half-marathon on 26 May alongside Alzheimer Scotland Saturday 22 June Martin Currie Rob Roy Challenge to help raise money for our new www.robroychallenge.com Lanarkshire Dementia Resource Centre. If you prefer a more leisurely way of raising funds for our work, there is something for you too. A £10 entry fee includes evaluation for three items and the opportunity Ladies’ Lunch 1 March, Glasgow to meet Anita Manning and her team on the day. Our first ever Ladies’ Lunch will take place at the Grand Central Hotel, Glasgow. Why not gather the Purchase tickets in advance girls together for an afternoon of bubbly, a delicious (call our Events Team on 2 course lunch, entertainment, auction and lots of 0845 260 0789; chances to treat yourself to something new with stalls email [email protected]) including handbags, jewellery and scarves. or on the day.

Tickets are priced at £50 per person or £480 for a More Diary Dates on page 19... table of 10 and are available now. However we have a special Early Bird Offer of £45 per person or £430 for a table of 10 if you book before 25th January 2013, so don’t delay, book your tickets today by calling our Events Team on 0845 260 0789; email [email protected]

Dementia in Scotland is published by Alzheimer Scotland 22 Drumsheugh Gardens, Edinburgh EH3 7RN. Telephone: 0131 243 1453 • Fax: 0131 243 1450 Email: [email protected] • Website: www.alzscot.org • Dementia Helpline: 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.