Transcript: Promoting Excellence in Dementia Education Conference

The Promoting Excellence in Dementia Education conference was held on 18 September 2013 at the Stirling Management Centre. It was organised by NHS Education for Scotland (NES) and Scottish Social Services Council (SSSC).

Podcast Episode: Promoting Excellence in Dementia Education Conference

Category: Mental health 


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
HS - Henry Simmons
PM - Peter McLaughlin
MR - Mairead Rae
PM - Pamela Mackay

MD The Promoting Excellence in Dementia Education conference was held on the 18th of September 2013 at the Stirling Management Centre. attended to capture some of the presentations and to get a flavour of the workshops. Henry Simmons, Chief Executive of Alzheimer Scotland, opened the conference and was subject to the Second Dementia Strategy for Scotland, he speaks about achievements in dementia care to date and some of the challenges.

HS Good morning everyone, and Suzanne, thanks for that very warm welcome. It’s an absolute pleasure and a privilege for me to be here today, as it has been an absolute pleasure and privilege to be involved in the development of promoting excellence, the team that have pulled this together I think have done a remarkable job, and looking around this room, the number of people who have been involved in delivery, is simply superb. So what I want to try and do today really is to give you a sense of some of the, I think some of the achievements, but some of the big issues that we feel still remain to be tackled by all of us, and then look at some more specific work that’s happening as part of the dementia strategy.

Now, it is a diverse audience that we have got and I just wanted to start by maybe highlighting some of the facts that we know. So we know that there are 86,000 people living with dementia, estimated to be living with dementia in Scotland just now, and just some of the more harder data that’s come out of the demonstrator sites as part of this strategy. So up to a quarter of hospital beds are occupied by people over the age of 65 years with dementia. 97% of nursing staff are saying that they have always or sometimes cared with someone with dementia. And this is a big stat, I think, for the broad group of people here, over 1/3 of the people with dementia who go into the hospital, from their own homes, are discharged to a care home setting, that’s a huge stat. And there are some other figures there about what nurse managers in particular feel people are being challenged with. And also this issue that we all, I am sure, are concerned about how we tackle the problem with the older use of anti-psychotic medication and indeed the alternatives to that. Something that, colleagues, we have to work through together, there is no one person, one group, one profession that can solve any of these issues, we have got to stand on this together and face it together and work with people with dementia and their families and carers to try and overcome some of these difficulties and problems. And indeed, I genuinely believe that’s what we sought to go and achieve in the first dementia strategy. Just to remind you that strategy set out these five key challenges and within that, the 2 key areas of post diagnostic support and acute general healthcare. Now, I am perfectly aware that we could have tried to deal with every single issue in dementia care in one strategy and it would have been a strategy that would have taken us ten to 15 years to make any progress. I am also perfectly satisfied that trying to work with three years strategies, delivering focused inputs with key targets is a sensible way to tackle the size and scale of this problem. And therefore I think that the work that was produced as a result of the strategy, the ‘gearing’, if you like of change as I would like to describe it. Things like the standards of care, things like promoting excellence, these documents, these tools and these resources have been the real sort of lever of change, I think, that will give us a strong basis to move forward from.

What I’d like to say about the Standards of Care. In Scotland, in terms of dementia care, has put a human rights agenda on the face of everything that we do. The standards and promoting excellence can all be traced back to the very early work done prior to the strategy in terms of the Charter of Rights for people with dementia. Sometimes it’s difficult for people to see the connection between all of that, but I actually believe that we, as a society and as a group of practitioners in Scotland, have actually done something pretty special by saying that we will take this from a rights based perspective and build every policy from that viewpoint. And that gives us a very clear sense of direction and purpose. I think that for those managers in the room, they will know that form should always follow function. So you only building something when you know what you want to do with it and I think that the function and the principles of human rights give us guidance that we then can deliver everything behind and I think we have achieved that really well, and everyone should be very rightly proud of that.

Promoting Excellence you are going to hear a lot about, but I actually think that the framework, the alignment of the framework to the Charter of Rights, the alignment and the engagement of people with dementia and their families and carers within the development of this programme has set a tone that is pretty easy to see and set a sense of direction that we can all follow. So I do believe that we are on the right track and these infrastructure developments are going to help us and assist us with some of the challenges that we still have to face and that are coming our way. But just, some of the key achievements, we develop Promoting Excellence, if anyone has ever looked at the Manage Knowledge Network and the extensive training and education materials, you can’t but be impressed, there is an immense amount of hard learning data there that we can utilise. We have developed and implemented, at the highest level of government, the Standards of Care for Dementia in Scotland, it was driven directly by Cabinet Secretary, committed to ensuring these are put in place and the Chief Nurse and her team ensuring that delivery is going to take place, and working with partners to achieve that. We have managed to fund an Alzheimer Scotland Nurse Consultant in every NHS board, I think that’s a great piece of progress and indeed partnership. And I would say to those practitioners, we might not have fourteen nurse consultants in position, but what other area of practice just now has seen such a significant investment in the high level of skill practitioner such as a Nurse Consultant be spread? Very few. So dementia is now, in my view, moving into an area that practitioners coming forward can see a good career in, which is very important, very important that people actually believe that they can commit to dementia from the earliest day that they start in practice to a long term career.

I see many Dementia Champions in this room, we have got 320 of them now. A wonderful, wonderful programme and a wonderful process of change. And I also would add in that the 200 dementia ambassadors we have now got is a huge and immense workforce. It’s not the solution to everything but strategically, if we have got people operating at Consultant level and people operating in the Champions level and people operating as Ambassadors, we have got a good opportunity here to change high level processing policy combined with on the ground commitment demonstration that actually can be done, and we have seen that, and tomorrow we are going to celebrate some of that at the Dementia Awards, which I hope to see many of you at too.

We have also seen huge investments in Cognitive Stimulation Therapy, Psychological Interventions, Stress and De-stress, these numbers at the back reflect the number of people that have been trained. Acceptance Commitment Therapy, Palliative Care Post Diagnostic support, Supporting Change. Hundreds of people have been touched by this programme and training and investments made in that, and al very strategically driven.

I don’t think we can talk about reducing anti psychotic medication use or psycho active medication use without talking about how we build alternative forms of therapy and engagement, without talking about how we resource people with the skills and equipment to deal with people who are in stress and de-stress situations. So I am very pleased at what we have achieved over the past three years, we can continue to build on, but I believe that we have so much more to do and so much more to really tackle the full system change that we are facing.

I think, colleagues, some of you may have heard me mention this before, but I do think that one of the big challenges is that we have got a whole raft of frontline staff out there that we haven’t touched yet. Lots of people who are working with people with dementia on a day to day basis, that we really need to get engaged in this debate and this dialogue. There are people here from the whole sort of like, independent sector, which is a huge workforce that we have got to make sure feel ready and equipped and feel ready, people from the social care services third sector, as well as the health service … we have still a massive job to do to make sure that people can be committed to rising up to that challenge.

But one of the things that I really believe that, certainly we have learnt about, this issue of having to place dementia as a unique and individual priority in the workforce in all different sectors, so acute care, right through to sort of like, you know, social care, brings with it a challenge of changing peoples psychological contract of what they think their job is about. So many people who work in acute care for an example, never expected that the three most common things that they would face on a day to day basis would be dementia, delirium and depression in an age group above 65. And they have never really been equipped and trained to understand that that is the world that they will be working in from now on into the future, and that that will become more and more common. And I think that it’s wrong of us to look at those individuals in any judgemental way and say they are doing a really bad job, because I don’t believe that they are. I think what they are doing is, they are doing a very difficult job to the best of their ability without necessarily having the equipment and skills to enable them to do a better job. And I truly believe that that is the culture and that is the ethos of the partnership that’s involved with promoting excellence. And I think that that is how we will really win people over. We will win people over by accepting that the psychological platform and contract that they have seen their work been about has changed, the paradigm has considerably moved, and it’s done it rather quickly, it’s not happened just sort of like, it’s all of a sudden people now see this massive issue. Although it’s been gradually building and building and building, for them it’s a shock and then all of a sudden, the strength of change that we have brought to the table makes this a big issue for people. So in all the change processes and in all the educational processes and in all the workforce development, we have to subtly remember, in my view, that there are people here who are going through a process of personal change and professional development change and going through an absolute reconfiguration in their mind about what they are going to be doing with their career and their future.

And I will leave that with you to think on today, because part of today is about thinking through the challenge of the future, and I personally believe unless we start to adopt some better understanding of human resource commitment theory, understand why people are engaged in work and give them chance to repair some of that change, and maybe damage for some people, because let me ask you this, how many people have heard someone say, “I didn’t sign up for this, this is not what I started out to do”. Lots and nods around the room. Now we mustn’t judge people for that because that is a statement that we can begin to work with and change and I think that our colleagues at UWS have managed to really, in the Dementia Champions Programme, really work that psychological change contract, I think they have really helped people come out, go through that process and develop and become a much better practitioner as a result of that.

I just want to touch on the two key areas, because the two key areas I think we’ve achieved immense progress in, now the first area in terms of Post Diagnostic Support, we have this wonderful thing, an NHS Heat Target, and that’s the target there, but fundamentally it asks you this as a guarantee that every person who is diagnosed with dementia will get a minimum of one years post diagnostic support. And I think that that’s a tremendous commitment from Scottish government because that is the first time in the world that anyone has really put a strong level of resource and commitment and real determination to support people at the point of diagnosis. And I know what we are learning from this is that many people do not get an early diagnosis. Scotland has got a high level of success in terms of meeting the target, we are ahead of most other countries in the UK, and it would be wrong to assume that because of that we think we are getting people diagnosed early, we still have many problems with that. Not least the problem of the individual and their family go through that difficult process of trying to go along to the GP to get help, to even use the words ‘dementia’. These challenges are huge and again we mustn’t try and pinpoint one group of practitioners and say the fault lies here, it doesn’t, the issue lies with all of us because we are still tarnished with a stigma, a fear, people don’t know what will make a difference in their life if they have a diagnosis, they still don’t know that actually we could confidently support people in a much better way, but the earlier we see people, the better. The earlier we see people, the better they will live with dementia, so we, together, all of the resources of Alzheimer Scotland, all of the resources of the NHS and Social Services and all the independent sector together need to work on continuously changing peoples belief that there is something you can do about dementia, don’t think there is nothing you can do, there is something you can do. And we are working with general practice and colleagues across the whole sector to make sure that they can feel as committed to that believe as possible. But that is the thing, that’s the thing, colleagues, that we must change, there is something you can do. And we think this model, which many of you know about, is a good starting point. It’s not perfect, nothing is ever perfect, but it’s a good starting point, and by guaranteeing people that when you get a diagnosis, that we will work with them and go through these five key areas, and we will help them by the end of that year be more robust, more able to live well with the illness, more able to maintain connections to the communities, and families feeling that they have been part of that process. Now I believe we will truly see a transformation five, 6 years down the line, when we know what people have wanted for their care and their journey and they have been in control of that early on. I equally understand this isn’t working for everyone just now because it’s a bit further down the road when they are getting a diagnosis and we have got to just figure that out and work through it, but it doesn’t mean to say that isn’t right and it is in the right intention.

And that includes another area, you probably all know this, there are … maybe not everyone, but we now have an absolute commitment in this National Commitment Strategy to these ten improvement actions in Acute Care. Every board will be responsible for delivering on this, it’s a huge task and I think that the government have rather wisely said that they can’t do this and the other stuff in the strategy without putting together a national improvement programme for dementia, and that team are already working flat out to think through the best way of achieving the changes within these ten points. But this to me, is as an important guarantee as the post diagnostic work, this gives us a platform, so all the work that’s been done by many people in this room now has a sort of platform to really be judged by and be supported by, and also to hold people to account by, and I think it’s taken a little bit of time for chief executives and people on boards to understand the problem to understand the issues. And again, I could understand that because they are not seeing the scale of dementia coming through the system, they don’t hear about that until we produce reports and show them that, they are seeing other things like delayed discharge and they are seeing other things that … and dementia is hidden within all that, but now I believe we have their attention and we have their commitment and we have got a platform to build on which is wonderful.

So in those two fronts, I think that … if that was all that was achieved by the last dementia strategy, they are huge achievements, but much more has been achieved and I can’t go into that just now but in itself I think that’s great progress and we should be really pleased about that.

But this next strategy, I think, brings with it some additional challenges. Extending some of the work that we have done in terms of Champions and Nurse Consultants into the sort of like, you know, the more mental health and continuing care settings for example, I don’t believe we can simply replicate what we have done, I think we need to go into that environment, understand what the challenges are and then start to work out a new methodology and a new process. That, to me, will be a key to success in these areas, and again, not making any judgements, but try to understand what it is that people need and what’s missing, and then ensuring that we build programmes of support, training and development to help people go through that change. I think developing the whole community based social care workforce to a level that is appropriate, I mean we absolutely know that we cannot have every member of staff out there becoming a dementia expert. But being dementia informed and dementia skilled, if that’s the main task, something we should be asking for and we should expect, and I am sure we can deliver that, and I am certain we have got the commitment of everyone in that sector to achieve that change.

We are seeing huge progress in, I see many AHP’s in the room today, and Elaine here, in terms of developing AHP interventions, and making sure that that group of professionals are central to the lives of people with dementia. And I already touched on the National Improvement Programme. I will talk in a moment a bit more about the ‘Eight Pillar Model’ but I do want to just touch on this issue about anti psychotic medication and I think that we are really looking forward to seeing the targets that are produced as a result of the current working group on this, because it’s been a long time coming but I do think we all need to have a close analysis of how many people are actually only receiving psychoactive medication as the mainstay of their therapeutic engagement, and challenge maybe the system about what resources are going in, in terms of alternatives, you know, how much do people understand what other alternatives can be brought to bear in some of the mental health environments and perhaps residential care environments. And if there’s gaps in that, we need to know about that and we need to campaign to have these gaps filled, but together I think we have got to really face this one a bit more seriously and the strategy. And then we have the model that we took a long time to build and I am really sorry that we weren’t creative enough to come up with a whole new different set of names but we thought, well if we have got five pillars for post diagnostic support, why don’t we go for eight pillars in terms of people from the mid stages to the later stages. And we did have some rationale behind that which was that we would end up with this type of arrangement … okay, l and the sort of idea that we have tried to put into the system is that if you get people early and you provide them with good diagnostic support, you can expect that many people will live well and better with dementia and you can expect what we describe as a period of self management, but if in that early stage you produce a strong, clear person centred plan, that becomes the pivot that can direct and govern the support the person receives when they begin to eventually lose capacity and lose the ability to really direct their support, and when that transition becomes one where the family have actually been involved in discussing the plan and know what the persons hopes and aspirations were, and when we have had all the difficult conversations about things like residential care, you know, like what’s your hopes, what do you think about that, these discussions are not easy discussions but you have got to have them and you have got to have them before the person loses the ability to have them. And that’s a big challenge we are putting on these link workers and workforce out there to have these difficult discussions, but it’s a crucial one. So that’s where we then think that as the person makes the progression towards needing more community support, our argument in terms of this model is that we have got lots of interventions, skills, resources, people, that includes therapeutic interventions, GP’s, mental health, environment, community, connections, personal support and carer support. And the truth is, is that we never really use them, except in some brilliant areas and there are some brilliant areas in Scotland, but we never really use them together and say this is actually all the resources that we have got in order to tackle the persons dementia and to help them live well. And if we could just get everything working a bit more in tandem and get the support staff, who are crucial out there, telling the psychiatrist a little bit more about what’s happening and the psychiatrist maybe advising the support staff and everybody talking to each other a little bit more clearly about that and working in such a way that we don’t end up with situations like Janette, who’s here, had a hundred carers in a short period of time, none of them did anything wrong, but none of them had been utilised to the potential that they had to tackle the persons dementia. Now that to me is what this model is about, it’s everything working together and it’s a great time to be talking about this, because we are talking about integration, we are talking about health and social care integration, whatever way that goes, I think that it’s irrelevant in some cases, but from our perspective, we need one practitioner with the power to coordinate all this, and I see that role as a CPN, a Social Worker, an Allied health Professional, I see it as people already in the system and the new strategy will test this model, it will test it in four or five areas, it will check what works, what doesn’t work and it will be adapted and it will be changed, and I hope that does happen, but ultimately, colleagues, I think our biggest challenge is let’s achieve this platform, because if we get this platform right, I think the dementia strategies, all our efforts, everything that we’ve done will soon change the way that people with dementia experience their journey and indeed will support their families and carers much better for far longer. Thank you so much, it’s been a pleasure speaking to you.

MD Peter McLaughlin, Vice Chair of Scottish Dementia Working Group, speaks about the role of the group in promoting excellence in dementia education. We apologise for the poor sound quality in some of this recording.

PM Preparation for talks takes up a substantial amount of personal time. Constructing a speech, learning to deliver it within the allotted timeframe and rehearsing it often enough to feel confident in front of an audience is very challenging. However, we feel that the effort it takes, it’s very worthwhile and we take into account all the positive spin offs it has for our members. Delivering a training session to professionals helps us rebuild our confidence and helps us realise we can develop these skills, such as public speaking, speech writing and presentation skills. It gives us a sense of purpose, we feel really listened to and it empowers us to influence both policy and practice. It gives us a sense in pride that we can contribute something worthwhile in spite of diagnosis. We get a lot of positive feedback and members are frequently told that hearing someone with a diagnosis talk about living with dementia is much more powerful than reading it from books or hearing it from lecturers.

Recently five members of our group were giving a talk to nursing students and each member had a different type of dementia. There was someone with Alzheimer’s disease, Hicks Disease, Louie Body Dementia, Vascular Dementia and Korsakoff. All were knowledgeable, articulate and happy to answer questions. They like to challenge people’s perceptions of dementia too and many professionals are surprised how articulate and professional they are. It also gives us the opportunity to speak for some people with the diagnosis who are not as articulate or who may be at a different place in their dementia journey. So we see it as a win, win situation, we put in a big effort in order to be involved in training and education and we get quite a lot out in return as well.

All service users benefit from the good training of the professionals who help them. In discussions among members of our group, we also become aware of the importance of services working together and the effects of poor partnership working. Professionals who are not well trained or well informed have a very negative impact on people with dementia and their families. Services should be organised around the needs of patients rather than patients around the needs of the services. That means teams of doctors, nurses, social workers and therapists all working together more coherently and in partnership with the patient. After being diagnosed the individual has to deal with a flurry of appointments with different professionals who don’t seem to have any contact with one another and don’t seem to be trained in working with people with a diagnosis of dementia. Then, once the appointments have been completed, contact with all these services suddenly stops and drops like a tonne of bricks. At a time when so much is changing in a person’s life, contact with services that are not collectively dementia aware only increases his or her confusion.

Personally I have experienced a system, or more accurately the systems from two different perspectives. Firstly from the point of view of a carer when my father was diagnosed with Vascular Dementia about 16 years ago and secondly on my own behalf when I was diagnosed 2 ½ years ago. In the first case I started to assist my father with everyday things like shopping and cooking, I had a good job and as his condition worsened, my employer helped by changing me to part time hours. Eventually I had to leave work completely and move in to live with him as it became a full time occupation. There was help available, but I wasn’t aware of it, and why would I be? Over the 6 years of his illness, we were in regular contact with his GP and in the beginning with a therapist at a resource centre and a consultant at a general hospital. At no time did anyone mention what help may be available for us. It would never have occurred to me to make contact with social services myself, I was only vaguely aware they existed at all and had no idea what they were for. I was aware of the fears surrounding dementia, I couldn’t help noticing people we knew avoiding us in the supermarket and fewer visitors to our house, and eventually nobody at all came to see us for a couple of years. In principle, people are sympathetic to others living with dementia but in practice you will tend to avoid them. Depictions of dementia on television are invariably frightening, leading to widely held negative stereotypes, people are wary, they don’t know what to expect or what to say. The fear and stigma in the test people talking to those agencies that could help them always assuming that they are aware that helps exists in the first place. This too often means that families try to cover up the fact that the person with dementia has any problems at all. Much of the emotional and physical hardship this causes could be avoided. Inevitably I had a crisis, it was a year towards the end of my fathers life when I had to lift him in and out of the bath and in and out of his bed, when I became ill myself, I had to call my own GP, who alerted the social work department. A young woman social worker paid us a visit, she arranged help for us and life became so much easier for the last few months. She also told me that we would be entitled to benefits and helped me to apply, I had known nothing about this either. At the Scottish Dementia Working Group, we are pleased with the Promoting Excellence programmes which covers both health and social work staff. People with dementia often have other illnesses as well and too often find the lack of communication between organisations also exists within them. Anyone with multiple needs can find themselves having to go with half a dozen different agencies or different individuals within an agency and departments. And by definition, these are not the people with the articulacy, the determination and the sharp elbows to navigate their way to get the help they’re entitled to. In my own case I have to deal with a CPN, a Consultant Psychiatrist, a GP, a Practice Nurse, GP’s Receptionist, a Podiatrist, and Ophthalmologist and a Pharmacist, and that’s just the ones I can remember. I have to explain myself over and over again, I often find this really embarrassing as many of these posts are filled with several personnel and I never seem to see the same person twice in a row. It can be daunting because the lack of dementia awareness also unfortunately extends to many of the people I have to explain myself to. I am occasionally spoken to as if I am 5 years old and I regret to say I find this a great incentive to avoid appointments and I have no doubt many others do too. I sometimes feel like saying, “look, I am not daft, I do have one or two wee difficulties sometimes and I am afraid you are one of them”.

To conclude, in order to provide the best service possible to those living with dementia and their carers, all the agencies involved must be dementia friendly and the professionals within them must be dementia aware. The Scottish Dementia Working Group members are passionate about how we can improve professional practice and it has always been one of our priority areas of work. Many members have been actively involved in the work of Promoting Excellence in Dementia programme since its inception and are delighted that our authentic insights continue to contribute to this good work. Thank you very much.

MD Workshops are held throughout the day, captured Mairead Rae describe the initial work undertaken by three Social Work Occupational Therapists from Aberdeen City Council as part of the Dementia Champions Programme.

MR My name is Mairead and this is Nicola Scott, we came down this morning from Aberdeen. So we are just going to talk around basically it starts off about the Dementia Champions Programme and how it all interlinked with the Learning Development Team and how it came together.

So the name of the abstract was Changing Status Quo, Putting Service Providers in the Know. So we came across the Dementia Champions Programme, 3 Occupational Therapists from Aberdeen City Council were put forward to attend Cohort 3 for the Dementia Champions and it was looking at areas for change and improving the experience, care, treatment, support and outcomes for people with dementia, their families and their carers. There were 3 assignments that were called for in order to become a graduate of Dementia Champions Course. There was a Community Reflection, Clinical Evaluation and a Change Assignment. Each assignment informed the one that was leading up to it, so the first one, Community Reflection, we attended a placement, we decided to take it without our working area, so outside of the city, so we went out to the Shire, I attended a dementia library group and it was ran actually by one Dementia nurse and all the rest was done by library staff, so it was very socially inclusive, people were trained and supportive in how to support people with dementia that come into the library. So it was information collected on all the assignments. So the information was collected in an informal setting, so it was basically, I suppose I was running around with treats from M&S and saying, “come into the room, I want to ask you a few questions”, so that was our incentive, it was very much a working lunch. The timing of the assignments, it took a lot of time management because it was over the Christmas period, we were busy within the OT service in the community looking at discharges and everything, so I was very appreciative of the people who would come in and do a bit of the work with me. So, those who were interviewed, there was a mix of skills and experiences, we had a couple of Occupational Therapists, we had an OT, a trained OT working as an Occupational Therapy Assistant, and a Community Care Coordinator who was recently hired as an OT Assistant, so we had a great mix of skills and great mix of experiences. Information was collected and put into themes, based on the first indicators of quality of life, so indicators 1 to 4. We initially found this quite hard to work with when we first saw it, because we felt it was very much, I suppose maybe health focus, but we were coming from a community social work point of view, but the more we looked at it, the more we just had points of practice that were very relevant to us in our everyday … so the talks were quite positive and they had lots of, I suppose experience from service users giving their almost like direct quotations, so when it comes to working with people with dementia, a big theme that came through was we’d get a referral, it would just say ‘a diagnosis’ or a post it with a name on, and then you are immediately thinking what do I do here, how do I communicate, how do I give a fair and comprehensive assessment, getting cross everyone’s point of view? We had one comment where an OT went out, we had asked to do a kitchen assessment or a meal prep assessment and the person was like, “are you going to tell me I can’t cook properly?”, so things like that, so you are trying to give the right impression of why you are there and it’s not, you know, you wouldn’t say, “have I passed the test?” you often hear that one, but it’s just to see how we can help or make it a little bit easier.

So staff identified that we were meeting a lot of the good elements of practice and moreso than they realised, so for when it came up, they felt we have the skills, it’s just maybe getting the confidence to say how we apply this, what is and isn’t taboo, you know they are very keen and very motivated but it’s just knowing where do I go from here, how can I be supported to do this? So training opportunities, so in relation to dementia and the impact it has on daily routines in lives of the families and carers, so being aware of the impact, being aware of taking all the daily activities into account and seeing how we can maybe adjust or adapt or support. So again, they felt ill equipped to address the issues of recognising cognitive concerns and further assessment, so it may be that people aren’t ready to discuss that they are having difficulty in some areas of either memory recall or processing or something as simple as making a cup of tea, getting the steps a bit muddled, people aren’t ready, maybe, to talk about it. Does the staff member have the confidence to say, “it seems to be that you are finding some things difficult, how would you like to go forward with this?” and it’s just having, like I said, the confidence to do so.

So we came up with Partnership Working, we were quite lucky at the time that myself and the 2 other OT’s graduated was the time that new staff came into the service and also with all the agendas and everything coming up. It worked well that the Learning Development Team came together with the OT service and Dementia Champions to look at a way forward. So we had the outcome, the call was for more training, how can we now implement it? So like I said, 2 representatives from the Learning Development Team and 3 Dementia Champions, each level within the framework was discussed and an OT was applied to each one, a Dementia Champion took each level and then we’d work it jointly with 2 representatives, it was Nicola and Claire and provide the training within the Frederick Street Training Centre. The opportunity for social work staff to be equipped with necessary skills and knowledge, so it’s giving people the chance to come along to the training and take what they can back from it. So the 4 levels of the framework were in response to the individuals role and responsibility in dementia care, treatment and support. So we sent out, and the Learning Development Team sent out, we are going to tackle each level and ask staff members to screen themselves and say where they felt they were happy to lie within that training, so it was like a self screening to begin with and whether they were people working in a domestic capacity but came across people with dementia all the time or whether they were more clinical management and only saw them a handful of the time. It didn’t matter on a hierarchy where you were, it just depended on how often you worked with people. And the first session was held 2 months ago at the end of July.

MD Pamela Mackay, Development Officer for Dementia Care with Crossreach, speaks about their dementia staff learning programmes which have been rolled out across Scotland.

PM Thank you for inviting me here today, and just to give you a wee bit of background. Crossreach is, well myself first of all, I am Pamela Mackay, obviously I am the Development Officer for Dementia Care with Crossreach. Crossreach invested in this post about 7 years ago now, firstly on a seconded basis and then on a permanent basis and I was fortunate enough to become the Dementia Development Officer. My background is nursing, I am a Registered General Nurse, but not an RMN, who worked in the acute setting, in orthopaedics and also accident and emergency, so I do know the whole scale before I came to be a team leader in a care home, then a care home manager and then into the job I am in at present, so I do know the difficulties within every setting. Just a wee bit of my background, I will go through this quickly because I know we are pushed for time, as I said already with the voluntary sector, we have got 32 services to older people, 22 of these services are residential care homes and the other 10 services are supported living and day care. That’s really just a wee background of how we do our care, the 2 at the bottom are things that we are looking at at the moment, which is Step Up and Step Down, for people coming out of hospital when they need a bit more care, to avoid them going into care homes, although that’s my main job, and also re-enablement for people as well.

Firstly to talk about the different things, what always helps us, we were very positive as an organisation when the Promoting Excellence Framework came out, I thought it was very easy to understand and we found it very relevant to person centred care that we were already providing and also very user friendly, and the skills and the knowledge required were very clear and very structured. However as many of you here today in the care home sector know, it’s easy for all the new resources to get swallowed up and not acted on because of such like statutory training, like moving and handling, control and restraint, all these kinds of things, control of infection … so we had to make the training very interesting and also deliver it in an adaptable way to suit all the services and all the shifts, for example, I don’t know about the rest of you, we have a lot of difficulty getting night care workers to come to training, so what we did was, we maybe did an hour before they were due to go on shift, but did it over a 3 week period to make sure they could go through the training too. So we had to develop the training packages, that was the first thing we had to do, and the Promoting Excellence, we really just pulled it out of the framework itself. What we did was, we looked at the Quality of Life Indicators that you will find on page 10 of the Promoting Excellence document, we studied the criteria in each of the 4 knowledge levels which were Informed, Skilled, Enhanced and Expertise, and then we also looked at the stages of dementia journey which were Keeping Well, Prevention and Finding out it’s Dementia, Living Well and Living Well with Increased Help and Support and End of Life and Dying.

Finally we used the 2 columns that are throughout the framework which was about what the workers know, their knowledge and then their capabilities and abilities of what they need to do, and this really formed the basis of the whole content of both the Informed and Skilled Training Packages.

The other thing that we did as well, we looked at the different learning skills, I have got an attention span of about 20 minutes before I start thinking about what’s for tea tonight and what I need to do shopping wise, so we had to try and include all the different learning skills, for the reflectors, the activists, theorists, and pragmatists, so we did have lots of things that people would take away and study, we had exercises that allowed people to reflect on their practice, for me, as an activist, I needed something that I could use and then put into practice to make care better and the same with the pragmatists as well, so we did develop all that from the different types of way people learn.

We agreed quite quickly that people needed to be at Skilled Level Training, we did feel that our staff were quite confident and familiar with Person Centred Care, however we had identified some things that we needed to do, some gaps in it, and so we developed 2 general packs that have been developed, one Informed, which is a 1 day pack and also a Skilled 2 day pack as well. With that, what I would say is we looked at the gaps, one of the gaps we found in particular that our staff don’t get at the moment is people are coming into residential care at a much later stage, now I think that’s a really good thing, you know I am not going to say that that’s not a good thing, it’s an excellent thing, however one of the main difficulties we have is that people are seeing folk at a lot later stage, so when we developed the packs, one of the things that we were keen to do was actually ask our relatives groups and also our residents groups what they thought we weren’t very good at, and that’s what we did, so that actually went into the package as well, so relatives and residents said “yes, you are really good at that, but you’re not so good at that”, and that went into the pack as well, and that was really key for us.

Now some of the other difficulties that we have are logistics, for me I am the only person, as a Development Officer for Dementia Care, so we have 22 units all together, these are our residential units, so you can see that they are quite wide spread throughout Scotland, including the Shetland Islands, and then these are our specialist dementia units, and there’s one down in Campbeltown which I just love going to, it’s a lovely unit, but certainly it’s quite a distance away, so I have to get a fair amount of staff to go do that. So what we had looked at was that we had to spread this out to other trainers, so we have now got 3 trainers from each geographic area, which for us is the North, East and Central Belt, and we use, as I have already said, a mixture of delivery within the care homes to external venues, sometimes within the unit depending on what the staff want and what the resident group, including time of day and split into half days. And what we have also done is we have asked relatives to come to the training as well. Now I have to say I am going to be honest, it’s not been a great uptake, we maybe have 1 or 2 relatives within the training packages that we do on the day courses and the 2 day courses, but I have to say they have been a huge, huge influence in what we provide and they have given us an awful lot of feedback. One of the things I do want to say is that within the training packages, this has been one of our best resources, it’s ‘Through our Eyes, A Life With Dementia from the Scottish Dementia Working Group’, and it’s been absolutely excellent in getting staff to think about how the person with dementia feels.

Now the reality of training was our next thing which was Embedding Change, the reality is, I know from our organisation, I will just speak about us, I won’t say about anybody else, but a large proportion of the training knowledge is lost, after staff are trained, they go out of your training really enthusiastic, wanting to change things, and within a few months that training is lost, and very little of that training actually impacts on practice unless it’s supported by environmental factors, and I do include that with managers and things like that as well.

To try to improve that, we put a Learning into Practice exercise at the end of each training package, assessing the staff members understanding of the Quality of Life Outcomes, which I had spoken about earlier, from the Promoting Excellence document, and staff can also assess their own workplace on these and again we involve relatives and our residents to do that also. They have practical exercises to undertake within their own work environment and they take away that package, for example one of the main things that we are not really involved in is early diagnosis, but because that was a key element within the dementia strategy, the exercise that they are given in the Informed Level Training to do is that they go away, that they get packs with the dementia helpline number about dementia, the mental health teams in each area for each unit, because we cover the whole of Scotland and that pack is in our residential care home, so if somebody comes and knocks the door, the key element for me was that they weren’t told, well actually we only do 24 hour care, we don’t know about that, that they are given a pack away, so that that person might have taken a year to come to our door because of the stigma attached to dementia, because they feel isolated, but at least we will give them something away that will help them to signpost to other services.

The key point for me is that staff need to own their own care. I think somebody already said that managers are saturated and I think that’s true, I think managers are saturated with things that come in, and what I really want to look for is staff owning their own care, so they can problem solve, they can do things themselves. The resource folder will be in each of our units now and that’s come from the Promoting Excellence, and the key point to all of this Embedding Change, is the Dementia Ambassadors. We are going to have 1 Dementia Ambassador per unit, we were very fortunate that we had a recruitment drive last year which we put 1 senior care worker into each of our residential homes, our specialist homes have 3 senior care workers as well as a manager and a depute, so on the recruitment drive at the interview process the key element would be that they would be a dementia lead, so all our senior care workers will be one of the ambassadors, however there are managers that are ambassadors as well as a Senior Care Worker and also Care Workers as well. We also have 1 domestic member of staff, that is a Dementia Champion also because again if you work in a care home, you realise a lot of the domestic staff have very good ideas how to keep people occupied, to give them meaning back to their life, so that’s really important for me.

The Ambassadors role is varied, the first thing that they will do within 2 weeks of joining the organisation, they will use the Dementia Informed Level DVD and also the Resource Pack and they will do the Induction into Dementia Care for any new member of staff starting. Following that they will now have a direct link obviously with NESS and FFFC to get all the information that comes out so that we don’t miss out, because we had exactly the same difficulty as well of missing some of the information. This will enable staff to access the knowledge network, we are going to have our first Dementia Day on the 24th … Ambassadors Day on the 24th of September, we have got 45 Ambassadors in our organisation and Kerry has been great at FFFC, I have found them so supportive, but she is going to set up a community of knowledge, so all our Ambassadors will be able to contact each other through that. There will also be a model of good practice within the unit and again that’s going back to staff for me owning their own care, because what I want is staff to problem solve themselves, it can’t all come from the manager dictating how care is supposed to be within the unit, although obviously they are responsible for the care that’s given, but staff really need to own their own care and get back some credit and some reward for the difficult and complicated job that they do. As an organisation, we will also commit to having a Dementia Ambassadors conference every year, I have already a bit of criticism because we are having it at our regional office in Perth this year, because I thought it was central for the whole of Scotland, but they felt that we should really be having it at a hotel and I think that’s a fair point, so I think we will have to fundraise to make sure that our conference is at a nice area, nice meal and things like that, for these people that are taking on the extra work, and also as I say, the website will have, so that from a geographical way, the ambassadors can meet each other.

Now evaluation is a key point as well, post training we obviously have evaluation sheets and they are linked to the staff knowledge and skills from Promoting Excellence. Assessment of Services using the Quality of Life indicators as I have mentioned, and I have mentioned them quite a bit because I think they are an excellent way of assessing how you are doing and your understanding of staff, and 6 further indicators are assessed, that’s activities within the unit, I know there’s a bit of debate about this word ‘activities’ or meaning for life, but anyway people shouldn’t go into a care home and just do nothing or structured activities, there should be meaning that’s individual. Continence, because that is a major issue within units, as is nutrition. Behaviour Management, I have to say again talking about my own organisation, I do still get phone calls unfortunately, people say they are not managing, and when I say, “well what’s your ABC chart showing?” they will say “eh, we haven’t used that”, you know and I say, “well these are …” somebody could be up at night time … again like care homes we give the big meal at lunch time, we give a snack at tea time, I will tell you now if I am up at 2 in the morning, I am looking for a sandwich, okay so it could be as easy as that, as dealing with behaviour management … and another big one that I feel that we need to improve on is pain management, I don’t think we are great at picking up people with dementia who are in pain. And again these indicators will be assessed and in that assessment will also be staff, relatives, residents, so it will be a mixture of people assessing our ability in that.

The future for us, I heard somebody saying I am a big believer, everybody does informed level, there’s no get out clause in that, it doesn’t matter what stage you are at in the organisation, we start at informed level, it’s a building block, it goes onto skilled level training, I am passionate the domestic staff, handyman, admin come to our skills level training as well, so that’s important. With enhanced and expertise level, we are not quite sure how we are going to do that, our managers do the PDA in dementia care and also the DMD 91, it’s hoped that all our staff will do the PDA in dementia care, we are registered, as a body for doing that with SQA, but they will do that following skilled level, that will be difficult to mark and assess but we are working on that at present. But certainly what I would quite look forward to is the fact that perhaps our staff could pick the area that they are interested in, so if I have a particular interest in continence, then I would go up to expertise level in continence. If I was interested in activities, I would go up to expertise in activities, but I wouldn’t be an expert at all the different roles. And then within each unit what would happen is, we would have a group that were the continence group, a group that were the nutrition group etc, etc, so at staff meetings, instead again of it all coming from the manager, because I have been in that situation, is that I would say can we hear from the group dealing with continence and they would give the feedback to the staff group, activities, they would give the feedback to the staff group. So that’s what I am hoping will happen in the future.

And just because Ann talked about it as well, I really thought that was a really nice story about her husband as well, is that one of our newest kind of innovations is art therapy for people with dementia because the creative side remains, and this is our Heart for Art Group, which we have 4 at the moment but are hoping to have 8 by the end of the year throughout Scotland, and these are people doing painting, we have taken them out of the care home into the community, they mix people with dementia from the care homes into the community, people with dementia from the community come to the group, people without dementia come to the group, so it’s a real mixture of people and the next painting I think says it all for me, these are 2 paintings done, both with people at the same stage of dementia believe it or not, that’s Rab’s drawing, he does sketches and then uses watercolours, and he has moderate dementia but he is still able to achieve, which I think is a beautiful picture, there’s so much depth in it, I struggle to draw a stick man, but it’s a beautiful picture. And on the other side there’s another lady who is coming to the group, perhaps people will say that achievement is not as much, but for me that’s equally as good. 2 very different pictures by 2 people thoroughly enjoying being out in the community and I think the possibilities are endless.

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