Introducing the resource
Informing and Promoting
Supporting Wellbeing
Rights, support and protection
Working with the SSSC
Heather - Over the last two years we have been working with the Scottish Social Services Council and staff within our own organisation to really develop a resource that would fit our needs, really looking within the Promoting Excellence framework to see where our Inspectors and staff need to be with regards to their skills and knowledge in relation to dementia care and support. If we are asking providers to provide a knowledgeable workforce, then we have to then do the same. Thinking around dementia and practice is constantly evolving and we have to be a part of that. Some people will look at the resource and be very familiar with the contents, it will be the case of maybe a refresher, looking over it , seeing where the gaps in their knowledge are, but it might be a really good opportunity to sit down with colleagues and have a bit of a discussion.
Our role in improvement
Heather - Within the Care Inspectorate, we have a role for improvement, which I know surprises some people, so as part of the inspection, the inspection will happen, people will go out, they will observe what is happening within a service, whether that is a care home or a day centre or housing support for example. From that really good evidence is gathered, evidence to support the really good practice that we see, but also areas for improvement. What we want to do within the Care Inspectorate is look at some of these areas of improvement and support providers to take them further, to really develop and I think what we are seeing again is a shift, a real shift towards quality of life, a meaningful life for people living with dementia.
Heather - Last year 2014, saw the Care Inspectorate introduce the Short Observational framework for Inspection (SOFI). This is a really useful tool because it is one of those tools that really aid us within our improvement role because it captures and highlights the experience of people living with dementia that maybe can't verbalise, maybe can't communicate effectively their experience of receiving services. We are able to capture that lived experience of living with dementia, to see how it can promote wellbeing, person centred care and really those quality of life indicators that are outlined within the Dementia Strategy.
Joe - One of the quite simplistic models that we use for regulatory theory is called direct, detect and effect. Lots of people think that the care inspectorate and Healthcare Improvement Scotland are all about inspection and we go out there and we do an inspection and we find things out. But fundamentally our job is a lot more than that. So for example one of the things that we are getting much better at doing is directing services to excellent practice, and good practice. And if we do this in a helpful, meaningful way, a lot of services will actually be proactive and will be doing these things. So that when we go out to inspect they will already understand what it is that we are expecting them to be doing. So direct is important, to direct services to resources and evidence based practice to help them improve. The Detect part of our work is very often associated with inspection and I've already talked about tools like SOFI that help us to detect things. But probably the most important thing for a regulator is the effect that we have. And the effect that we want to have is to improve care outcomes for people using services. For people that have dementia we want to improve the care that they receive. And that's the effect that we are having. And ultimately we can direct services and we can go out and do inspections, but if we are not enabling and helping and working with them we are not having the effect that we are want to have.
Using regulation to promote excellence in dementia practice
Joe - The principles of the Public Service Reform (Scotland) Act which brought about the Care Inspectorate and Healthcare Improvement Scotland require us to promote things like health and welfare, but also independence of people. Independence is an interesting principle. It's one that we all take for granted. But I think when you have dementia perhaps you feel less independent than you should. But inspectors have a duty to promote that independence. So when they are out inspecting there are some key things that they have to have. That's good understanding of how to regulate, and the theory of regulation supports that. But two other things that are really essential are good interpersonal skills, and that's not just about interacting with services but it's also how to interact with people in the services. Linked to that is a really good experience and expertise in what it is that they are regulating. So for example if you are an inspector, inspecting a care home for people who have dementia, then you need to have a really good understanding and ability to communicate with people...
This is what some inspectors had to say
Marie - Through Promoting Excellence and online learning, we can keep ourselves up to date but it's also important as well as doing online learning to meet as groups and discuss our understandings. And Promoting Excellence training with the DVDs, case studies etc is the way we can explore some of the theory about working with people with dementia but more importantly we can support services to move forward. And through us learning of some of the materials out there, of the resources out there, we can signpost services to best practice and help things improve in Scotland for people living with dementia.
Clive - When as an inspector you are out working with management staff in care services and observing staff practice, what we try to do is promote the Promoting Excellence regarding dementia care. It gives staff up to date information of how they should be providing care and gives them a whole host of resources that they can link into to ensure that their practice is as up to date as possible.
Susan - A lot of the work that I have done in inspection has been for older people, and that has been Care Home Services but also Care at Home Services, and Day Care Services too. For Promoting Excellence, one of my favourite things about it is that it is the Scottish Executive, or Scottish Government, who are setting out the standards that are there and it works alongside the dementia standards. And if clarifies for services what our expectations are; what staff should be doing, how people are best supported. I think a lot of the inspecting that has been done in the past has been around physical care needs, and they are important as well - Maslow's hierarchy is very useful. Physical care needs are important but equally important are the social and the wellbeing care, and certainly the older I get that brings into focus what good care is about and how as a regulator I need to look for how individuals are being supported through the staff and Promoting Excellence guides them.
Working in partnership to create your resource
We have been really fortunate within this resource to have the experiences of people living with dementia, hear the voice of people within the Scottish Dementia Working group and also the carers from National Dementia Carers Action Network, so the resource really captures that lived experience of what it means to live with and really care for people with dementia.
We have also had the opportunity to meet with many members of staff from across the Care Inspectorate, Health Improvement Scotland through the focus groups that we did, really capturing some of the key themes, some of the issues that you face in your everyday work.
I'm really looking forward to hearing how this resource is used. It can be used individually, it can be used on line, and you can come together as teams, which I think is very valuable to hear your peer discussions of some of the issues.
Sometimes there is no right or wrong answer, so having these discussions is really what is going to enhance your practice.
So please keep in touch with us, get back to us and I will be looking forward to hearing how you got on with it.
Heather - I think the way we view people with dementia is one of the key areas we want to look at and it's about raising expectations. When you go into a service, we want to see absolutely somebody's health and wellbeing needs being met, but we want to see beyond that. We want to see more about quality of life and the kind of meaning we are having for that person. It is looking at their personal outcomes, their goals. That diagnosis of dementia shouldn't be an end to having personal hopes and dreams and wanting to attain things. So it is shifting that and we are saying how that person can actively participate in their own care planning as an equal partner, not as an afterthought. Not when the case review has been done and somebody gets invited in at the end and told 'this is what we have decided for you', but actually right at the beginning. What do you need to make your life have more meaning for you? Have some quality to you? So the outcomes that we are looking for are those that really make a difference to people. Not outcomes for the service, but outcomes for the people who are actually living with that diagnosis of dementia.
Marie - A key area of inspection is looking at participation and how people are involved in their own care. And when people with dementia don't have capacity that can be an issue about how much they can be involved, and how we can promote choice. And sometimes we go to services and people say well I can't have service user meetings because they all have dementia and they wouldn't remember or they make everyone go to a service user meeting. But actually participation is about small, every day choices: would you like to get up now? Would you like a hand with that? It's about getting services to understand that participation isn't just about care plans, or taking part in meetings ... it's about making every day choices and being spoken to in a participative language that allows you to say yes or no that you would like to take part in that.
Marie - An example to me that really brought it home about how important that is, is that one time in a care home I was interviewing a relative. It was a daughter of a service user, and she was an only child. She told me for the first time in her life she hadn't had a birthday card from her mother that year. And that just brought it home to me what it means to be person centred. Her mother had dementia and could not send the card, however if people had thought about her what was important to her and found out what important days for her were, they could have assisted her to have sent a card to her daughter. And its things like that that is really important that we look for in having good outcomes.
Clive - Another scenario that can come along quite often is when someone living with dementia is unable to walk well themselves and they may be forgetting that they cannot walk or that they need their walking aid to walk so that they are not going to fall down if they do get up. Again the care home the service use and relatives need to look at how they can help the person to keep their dependence but at the same time give the care home and the service user the ability to be able to walk or in some cases not. So it all comes back down to good care planning and outcomes planning for the service user with regards to what needs to be in place to protect the service user but at the same time give the staff and give the family the confidence that the person is not going to come to any harm because they do get up, and fall over unfortunately.
Susan - For individual service users, the length of time they are living in care homes and the experience of their life as well is really important. There are lots of ways we can assist and we've had Make every moment count and Make every movement count... we're looking to be living more in care homes and not just existing in care homes. So a lot of the independent living skills promoted by Scottish Government are ones that we would promote as well. And what people can do rather than what they can't do is important for inspectors. When we are present in services we are busy all the time, we are looking and seeing. One of the interesting things for me is that for some staff we're looking at the same things but we are seeing different things within in. And I think the dementia skilled learning resource will highlight what we are looking at and what we actually are seeing. So someone going for a walk- how that can benefit their bone health, their psychological wellbeing, their purposefulness - there are whole elements in there that we can help staff to see so that they can enhance someone's life so that people don't move to a care home to sit in a corner and have a TV in front of them, even if they are not watching it. These subtle bits can make such a difference in someone's live; being able to get out and about, being able to get through doorways, being able to access fresh air in the garden or go out to the shops. Things I take for granted now, and which I'm hoping to take for granted in 10 years' time when I may well be receiving a care home service. And building on all these bits just now will enhance the quality of life for people living in care homes, and who may be living there for quite some time.
Shirley - Oh thanks Caroline. As I was saying to you yesterday, I find it really helps me to get a better all-round picture if I can spend some time on my own with the carer. I also wanted to speak with you because I wondered how you were coping being a carer and living your own busy life.
Caroline - It has been very hard to see her going downhill, and to hear that my mum has been upset and difficult at the day centre. That's not like my mum. And I wonder what the future holds.
Shirley - You are going through a very difficult time right now and your responses are absolutely natural. Now it's my job to support you to be the best carer for your mum that you can be, and you are being. It's also important that you take some time for yourself.
Caroline - That doesn't seem to be possible. I can't abandon her when she needs me so much.
Shirley - Caroline, can I ask; what information have you been given about your mum's dementia and how it might progress from here?
Caroline - None really, the Doctor told me she had dementia. He said that it wasn't curable and that I needed to think about power of attorney.
Shirley - Well power of attorney can be very helpful. It allows your mum to choose who she wants to make decisions on her behalf when she cannot make her own decisions anymore. I noticed when we were chatting yesterday that she often turns her head round to you to look for reassurance. Have you already arranged a power of attorney with your mum?
Caroline - Yes, we did that last year.
Shirley - Oh that's good. I have brought a leaflet for you Caroline that I thought you might find helpful. It's based on the Standards of Care for People with Dementia and their Carers, and what they can expect. If you look at this section here, what it does is that it outlines that carers like yourself are entitled to information and support, and that you are allowed to take time off from looking after your mum.
Caroline - I didn't know that, thank you.
Shirley - I'll just leave this here for you and you can have a look at it in your own time. Now, if I was to ask you; what's important to you in relation to your mum?
Caroline - Just the simple things really, that she is healthy and well fed. That she is comfortable. That she has company.
Shirley - You are trying to meet all of those needs yourself.
Caroline - I suppose so. That's why the day centre has been so important. It gives me a break so that I can go to work.
Shirley - I can see that. What about if I asked you; what's important to you in your own life?
Caroline - No one has asked me that before. I think really it's just the people I care about. My mum. My kids. My husband. Work too, that's important to me.
Shirley - I noticed that your mum was top of your list there. Is that how it's been for you recently?
Caroline - Yes.
Shirley - How does your husband feel about that?
Caroline - He feels like he is less important. But he also understands. I know he wonders when it will all end. He says it has taken too much out of me.
Shirley - Is he right?
Caroline - Probably, but what choice do I have?
Archie Latta, Scottish Dementia Working Group
Sometimes you just get really down, you know? It's people, places and things. I've always had problems with people, places and things all my life because of my low self-esteem.
I'm now enjoying coming to the working group. I've just been to Warsaw. We did a talk over there. I think it's basically people understanding the illness you suffer from. It's not a cop out, it's an illness, a mental illness that's centred in the brain.
I enjoy coming to the working group and being part of it rather than the isolation that this illness causes you as well, you can feel so alone at times.
Agnes Houston, Scottish Dementia Working Group
If I want something badly enough I can't expect professionals to provide it. I have to sometimes say to my friends or to the people there: I am struggling. I would really like to keep going, but can you help me? Is there a way round this? Can we think outside the box, for want of a better way to make this happen and that's what it is. So I don't have carers in my life but I certainly have lots of dementia 'angels' if you like, helping me...
...at the beginning when I was diagnosed there was a lot I could do, but without being supported, without that constant egging on for want of a better word... my confidence isn't that great so I need these people in my life to be able to live. I did think six months ago that I would go into the house and shut the door and just be safe, because I need to feel safe and secure. If I don't feel safe and secure, that's a big frightening world out there even without dementia. Add dementia into that and it's really scary.
I walked up to the Coatbridge College this morning and my daughter had been on the phone last night, now I was all prepared for going and I woke up this morning and I didn't know what day it was. I wasn't quite sure if it was today I had to do the College and I wasn't sure of anything. And that's a scary place to waken up to in the morning.
But I had to take that giant leap of faith and that's what my daughter says I do a lot. I have to trust that the things are in place, everything is going to be secure. I have locked the door. I don't have to go back for a sixth time. I have to have a tremendous faith that I'm safe and secure and what have you, but I did think that I was going to go into the house and not come out because the big world was too dangerous for me and I could no longer cope with it. But I'm still out and about (laughs). Well my gym is a supportive environment. It's not the professionals that made it that way; it's the girl that will say 'good morning Agnes, it's a lovely day isn't it?'
Greeting you by your name makes me feel safe and secure. People who look out for you, that's just genuine niceness. But a supportive environment- because I have vision problems, and I have balance issues and hyperacusis with my hearing with my dementia, I'm now needing a bit more extra support - to see properly, to be able to identify and make the place safe for me. So good signage... Just before we came in here they were admiring a beautiful cup and saucer - fine bone china, made to be dementia friendly - and they said to me 'isn't that lovely Agnes?' and I said 'well it wouldn't work for me' and they said 'why? Two handles, absolutely stunning'. I said 'well there's no contrast' and they said 'I'll have to let them know.Because they don't have dementia. I mean, it's so blatant to me. How do they not know? Because they don't have dementia. Because it's not a constant living reminder that they have.
I remember when I was sitting in a taxi, a black cab with black seats and when I landed on the floor the man thought I was drunk. I couldn't see the seat, black on black -are you kidding me? And I explained to him and he said I'll get a tartan rug and any time I see you I'll put the tartan rug on the seat so you don't fall down. So it's letting people know and explaining things, and giving them your solution if you like. It doesn't cost lots of money to make things that wee bit easier, so when you see the challenge you look for a happy humorous solution.
Caroline, National Dementia Carers Action Network
The important relationships in my mum's life have changed quite dramatically since we lost my dad, because she saw my dad every day. I visit every day. I've visited every day since things happened and life changed.
I can't honestly say she has any friendships, in the real sense of the word. There are twenty nine other residents in the care home where she is, but I can't say hand on heart that she has any friendships.
The friends that she had are ten miles away and she doesn't see them. I understand their reasons why and I'm not criticising because life is busy.
Essentially it's her family. My sister and I visit. My children were always involved in my parents' lives on a day to day basis. We went to see her yesterday for mother's day and that spark is still there with her grandchildren... so in terms of relationships, it has shrunk big time.
Environmental support is something that is really important to me, both from a personal and professional perspective. Part of my background and my career, I worked around environments: lighting, colour contrasting. There's lots of similarities with people who had sight problems but the parallels are very close for people who have dementia as well.
We need to make it simple. We need to make the environment something that a person understands as opposed to trying to teach them something that's new.
My dad actually, before he died, inspired me to do something about dementia friendly communities. I live in Bishopbriggs. We were brought up catholic and my parents went to church every day.
As a result I spoke to the parish priest and spoke at all the masses one weekend in November, in fact it was ten days before my dad died. And I believe it was his legacy. It was essentially saying to the church community that there is potentially somebody sitting beside you who is really struggling. You might not know it. So we need to help people become more aware of this illness because more and more people are going to be affected.
I spoke to the local hairdresser, the school became involved. We got the memory bus from Alzheimer's Scotland. They had the highest number of people going onto the bus asking for information. It's really simple, and since then there been one of the reminders - the 'dementia tips' - in the church newsletter.
People are still approaching me since my dad died saying this has really helped me and it's really simple. Now all the schools have joined in. It's one of my passions to make Bishopbriggs a dementia friendly village and that's my dad's legacy.
James, Scottish Dementia Working Group
Well I think the biggest factor was the way I was being treated by people. From being a capable adult, you got a diagnosis of dementia and suddenly you were written off, you couldn't do things for yourself anymore. I think I was programmed to accept that. But then I began to rebel and think I can still do things for myself and I can still give back to society. So it was just a process of re-discovering myself.
There was one time there was a dementia conference and I wasn't allowed in because I had dementia. At that time I had a support worker called Brenda and she backed me up. To cut a long story short, the next year I was back at the same conference presenting at it.
Again I thought, doctors, nurses, journalists have all got there unions. Carers have got their groups. But there are no groups for people with dementia anywhere in the world and I thought that was wrong. What did people fear if we got together, what did they think would happen?
So with the help of Brenda and Heather the three of us got together and set up the Scottish Dementia Working Group. I was the only member at one point but now it's mushroomed to over 100 members I believe.
But it was basically because I was driven into it by the way people were acting. They just don't understand that if you've got dementia you can still have some sort of life.
Everybody loses their confidence when they get a diagnosis of dementia. I was no exception. But through support from social work I got on a programme where I got person centred help and through that I got my confidence back up. I was able to do things. There's things I can't do now, like counting change and things like that, but there's still so much that I can do. And others: it's not just me, we've all got something to give back and that's why we're in the group. We're giving back to society for the help that we've been given.
Caroline, National Dementia Carers Action Network
Generally my experience is that when many people go into care homes their very rarely taken out doors and the importance of having fresh air and sunlight for vitamin D and all of the things that are linked to being outdoors is just one of the other things that can be taken away. I became an assessor with the Care Inspectorate and so I see things in other care homes, and I'm a great believer in if one care home is doing something really well, tell another care home share good practice because again most of these things are really simple, one of the big issues you hear from staff is we don't have enough staff, you have an activities coordinator in a care home they often one person out at a time, there's a garden at the back, why wait for the good weather so you're really hitting on things that I think are really crucial and need to be identified and highlighted much more, lets involve the communities if people can't access their communities bring the communities to the people in care homes, and the very specific's then could you spend an hour a week taking somebody or going for a walk with somebody, whatever the weather might be cause to me that sense of connectedness both with the person and with the environment to me its madness not to do that.
Diane, National Dementia Carers Action Network
I think the most important thing is just to remember that you might be new to this, but we are all new to this as well. It's not like this is the third time round that we can all learn from experiences with other family members.
For most of us this is the first time it has happened to us. We're like rabbits in headlights. We kind of need that emotional support, but we don't know we need it until we start to get it.
And we don't know what we need because we never experienced it before. And I felt we were quite lost. And even when social work did rock up to help us, we had no clue what they were there to do. So even if they can just be specific about what they can and cannot help us with, and just empathise with people like my dad that are just a wee bit too proud... even when they know what you're there for. Just reassure my dad that you're not going to take over his life, he's not going to become a statistic. But actually that you're thinking about him as a person and about my mum as a person.
Agnes, Scottish Dementia Working Group
I now have a Power of Attorney which took me five years to attend to because there wasn't enough, in my opinion, simplified information about it and it was quite a big complicated thing that I think could have been simplified better. Then once I had got it done, got the lawyer and got it signed I felt much better about it. But while it was hanging over my head it was like one of those kind of doom and gloom things, and I was giving talks by this time in the working group about power of attorney and yet when someone says 'have you done it?', I would say no, I'm in the process of doing it. So I think we need more trained people to take... I'm going to say take control because at that time, and still do... I'm not great at making decisions. I'm not sure of myself. I need someone to not sit back and say 'well it's really your decision' because it took me five years to make the decision because nobody was helping me to that step through fear.
Well I think, just treating me like a human being is so precious. Professionals are so busy that sometimes they don't have time to be that caring person that you know they are. Because they maybe only have ten minutes to get a certain act done and they are pushing you forward. So I think it would be good just to remind professionals that they do have rights. Why is it that they expect the person with dementia not to have a life, and to always be available when they want them to be available? And then they look at you quite crossly when you say 'I'm sorry I'm not available. I'm coming to do filming today, to do training'.
I mean, you're not supposed to have a life when you've got dementia and I wonder where they get that from, because when you've got a diagnosis of dementia your life is different. It might be you're not able to do as much (which I certainly can't do) but I like to fill my life: as the government, as the doctors, and the professionals are telling me. But once you start to do that, the professionals frown because you're out! 'When you're supposed to be sitting depressed at home, waiting on me calling you'. And I just think it's horrific!
So start realising, and don't come and say 'well I can put you in on a Wednesday'. Well I'm sorry, but I'm busy on Wednesday. You know. So why should I be any different from anybody else? The thing I want to say, to the people with dementia more so, is just to get on with your life and do what you can do and let the professionals fit in with you... you know
Susan - One of the important aspects of supporting people who are living with dementia in care homes is how their medication is used. For some people when they can be distressed then sometimes the medication can feel like first port of call. But that's not our expectation; our expectation is that it would be the last port of call. So one of the aspects that inspectors can pay a lot of attention to is how much medication someone is one, how it's used and how staff use alternative ways of supporting someone. For example, we have in the past looked at life history as a guide to someone's wellbeing. Over the last while there has been more detailed emphasis on if someone is distressed, and what might be causing that- it can be smells, sights, it can be voices, it can be music- playlist for life is there, sometimes local accents can help. There are lots of strategies that we look to see in care plans, because they are just as important ways of supporting someone who is distressed as medication is. The drawbacks of medication of course are all the side effects it can have, how someone can become sleepy, and how that can lead to the physical problems someone can experience. So the pharmacological aspects are important, but just want to reinforce again that they are the last resort and not the first resort and we would look to support staff to follow that through.
Clive - Another area that we come across during inspection with regard to service users' outcomes can be that perhaps a service user that is living with dementia has forgotten that they cannot walk or that their mobility is reduced and they may be prone to having falls. And this causes a challenge obviously for the service user and for the care homes trying to keep the service user safe and also the family obviously not wanting their loved one to get hurt when they try to walk ... So the care home can work clearly with the service user and the family, and try to promote a positive outcome for the resident to ensure that they are able to maintain their life and have positive outcomes, but at the same time are safe. So they can look at information from the Mental Welfare Commission; Rights, Risks and Limits to Freedom, that gives the care home guidance about how to work with people and this can be by risk assessment, or risk benefit analysis, which is looking at the outcomes of the person and how you can try to maintain that person's independence whilst at the same time keep them safe... A way can be, where does the person sit in the daytime? Are they sat so that they can see other people around so that they have reassurance that they are not by themselves, they are not trying to get up if they do then someone can see that they are getting up. Another way is using a pressure area mat so that if this person does get up it sets a call alarm off so staff are aware that the person is moving and again that relates back to having someone there as soon as possible so that the person isn't coming up to any risk of harm but they are still trying to create their own independence.
Susan - For me the benefits of Promoting Excellence is that it highlights for staff that physical care is there in module 3 in the Skilled resource, and it goes on to look at the psychological care and how best to support people. One of the issues for me is that when we are told that people have challenging behaviour, and getting staff to understand that it may be challenging for them but actually it's quite distressing for the service users. It's good that Promoting Excellence is a tool that I can use then to explain that to people, and that brings about better care then I think for the individuals. I think as well for families to understand that if someone's behaviour seems difficult then there is a reason for that, and through complaints but also through inspection we can highlight that for people and use them as tools for explaining. Because a lot of the work we do as regulators is persuading people, it is the interpersonal stuff. All the relationship centred care, that Kitwood talks about and that we've used in systems like SOFI. Brings all that together and helps us with communication, which is one of the main skills a regulator needs. Just to explain to people in different ways how they are working; what the good bits are, but what the bits that aren't so good to us and explaining to them that if they are not good enough for us then why they aren't good enough for the people receiving care, is more important. But we are a conduit that works through all these bits. And again Promoting Excellence has all the guidance that is there, all the signposts and ways to direct people to how they can improve their practice.
[Ellen is looking concerned and frowning in the direction of the corner of the room. She becomes distressed and starts shouting and pointing.]
Ellen - That's my dressing gown! Why has she got my dressing gown?! Give it back! Now!
[Ellen tries to climb out of bed but a nurse arrives to settle Ellen.]
Ellen - What sort of a place is this? What is she like?
Nurse one - Ellen...
Ellen - The thief! Someone's got to help me!
Nurse one - You've got to stay in bed or you're going to pull that out [points at monitor system].
[The nurse helps Ellen settle back in bed. Ellen is still upset.]
Nurse one - Nobody's got your dressing gown. There IS no dressing gown.
[Nurse two enters and approaches the bed.]
Nurse two - Ellen you need to stay in bed or you'll pull this out.
[Ellen looks down at her drip and tries to pull at it.]
Ellen - Who put that there? That's not mine!
Nurse one - [to nurse two] we are going to have to get the doctor to get something to get her settled.
[Ellen is looking concerned and frowning in the direction of the corner of the room. She becomes distressed and starts shouting and pointing.]
Ellen - that's my dressing gown! Why has she got my dressing gown?! Give it back! Now!
[Ellen tries to climb out of bed but two nurses appear to settle Ellen.]
Ellen - What sort of a place is this? What is she like?
Nurse one - Ellen...
Ellen - The thief! Someone's got to help me!
Nurse one - It's ok; we'll get this sorted for you. Come on, into bed.
Nurse two - I think this may be the problem. [She points to the corner of the room and approaches it.]
Nurse one - [to Ellen] I think it's a bit dark in here and difficult to see. We'll get the light switched on.
Nurse two - is in the background moving the drip stand. This is what Ellen has been confusing with a woman and her dressing down.
[Nurse two switches on the lights.]
Nurse one - Ah! Ellen. Is that better? Can you see? There is no dressing gown.
[Ellen still looks confused.]
Ellen - But it's my dressing gown. Where is it?
Nurse two - Ellen, I'll get your dressing gown. It's just down here.
Nurse two - Looks in bedside cabinet for dressing gown.
Ellen - Why am I upstairs? I never sleep upstairs.
Nurse one - Ellen it's ok. You're in the hospital. Caroline's just gone for a bite to eat. She'll be back in a few minutes.
[Ellen appears to have settled now.]
Ellen - She needs a rest. She never stops.
James, Scottish Dementia Working Group
Well I think it's very important. Remember that I spend about a year sitting at home doing nothing, not going out the house. And I thought I'm not going back to that. Going outside gives you a new lease of life, you can go places, you can meet people, you can do your outdoor activities and you can help others by giving presentations. Dementia, whether it's a deadly disease, it may not be the end of the world immediately. You can still have a good quality of life until dementia takes over and you're not able to do things. Being outdoors is good for your sense of wellbeing. I love reading but I wouldn't want to sit and read all day, whereas if I go out and have a fruitful day I can go in at night time and enjoy reading.
Well I've met an awful lot of people with dementia. What I've noticed is that the ones that keep a sense of humour are the ones that seem to do better. People who moan and groan tend to deteriorate that wee bit quicker. Sometimes people say 'have I got any regrets?' Well, I've forgotten how to do dishes. I stand and I look and I think 'I don't know what to do' and my wife shoves me and says 'get out of my road'.
So it's a big loss in my life, forgetting how to do that.
And the hoover, oh! Complete mystery to me. I'd be willing to learn again but the trouble is you forget so easily. Five minutes later you've forgotten and it's quicker for my wife to hoover than to try to tell me again. I'll take tongue out of my cheek...
Peter, Scottish Dementia Working Group
Well it's very important because one condition could exacerbate other conditions and if you have three or four different health issues, unless they are all balanced it can make the others worse.
I have a sleep problem and I have a memory problem. If I am not sleeping well my memory gets worse. And if my memory gets worse I'm doing things that I forget I'm doing and my sleep problem gets worse because I'm in and out, I'm not keeping to regular eating and regular sleep patterns. I don't go to bed at bed times etc.
My family comes in there as well. There's someone in my house every day and depending on what I'm doing that day that decides what time there going to show up and what happens there... Often I'm in the shower and I'll wash myself all over, and I'll do it again, and I'll do it again. So if someone's in the house they say 'are you going come out of that shower before you dissolve!?', and that's what I have to do. Also going shopping, it's better if someone's with me, and then I don't accumulate things. Like 10 packets of cheese and no bread, that kind of thing. So everything goes pretty well as long as I have that input there from other people.
Jeanette, NDCAN
Well someone once asked if they could interview carers about the impact on them and I actually thought that I'd have to go to my family and friends and ask them how they perceived me to be, because I wasn't quite sure of myself.
You lose yourself, there's no question about it. It sounds pathetic I know, and it's not meant to be because your loved ones still there and you're thankful for that and you'd do the same again- I would do the same again, that's not an issue. But you just had to come to terms with the fact that the hardest thing of all, your health is impacted because you are seeing your loved one day by day disappear and things happen and the sad look on their face (although that's a mask that can come as well you know).
I did overlook things, I didn't take my tablets when I should have, and I didn't get sufficient sleep and I didn't eat properly. Because sometimes, there was two carers four times a day and many changes so it was repetition, repetition, repetition: this is the routine, this is the colour coding, this is what you do here, this is where you go there, and this is how...
And there just wasn't much time at all throughout the day, so come the evening time when they came in and sorted him and went away about half past eight I felt, you know I'll never get a paper read, I might just have a cup of tea then and have something to eat. So I didn't have any outlets, because well it would have meant bringing somebody in.
The only thing I did the last year or two was the church guild. I didn't even go to church on a Sunday morning, because I couldn't. It meant someone coming in. Once or twice I got someone in, but I felt so bad. So to get out at night I would have to get someone in, so one of my friends whose grandchildren are in Glasgow - she's freer than the rest. She would come over with her friend and they would let me go to the guild for a couple of hours but that was probably only five or six times a year, because I didn't go to this one or that one, you know.
Agnes, Scottish Dementia Working Group
I wonder if we'll have a social service. I wonder if the money will be there to keep it going. My fear is that I will never be sick enough to get help. Because they'll triage and only crisis manage, and there will be no time for people like me. And I feel sorry for the socials services and the nurses because I feel that they have all the training and all the willingness but none of the time and none of the staff to put in practice what they know they would like to do. So what they do is the best they can and it's constant crisis management. I look at them and I know they are stressed and overworked and I just feel terribly sorry about it. But sometimes you get very angry too. You say to yourself, I don't want to bother people and ask for help, so when I do ask I'm really needing. And that's when you find out they're no there and that's when you get really really angry and I think that was where my fears were coming from. I thought, I need to get into the house because nobody knows how to support me. I don't look or act sick enough. I refuse to be a victim. Consequently I'm not going to get any help. In a crisis I think it will be the only time that help will be there.
I've got what they call a 'locality officer'. She's not a social worker as far I know and this is relatively new. I'll explain it to you: what happened was, in the area where I was there was nothing for people under the age of 65 and I was very angry as I explained in the beginning. I remember going from health (because they weren't linked up) and saying 'what can you provide?' 'Oh, we monitor your medication'. (But if I was schizophrenic or anything like that) you're telling me that I'm mentally ill because it's a mental health condition, but you're not going to give me the mental health support because it's dementia. I've got to go with the nurses. I said 'this is against my human rights'.
So I was invited to the local social work department. I was very tearful and I just put it to them. I said 'this isn't right, all my life I've worked. Nursing and various things like that, and you're letting me down. The system is letting me down.'
So anyway, they came to my home and they spoke and they did a wee pilot and I was the first one, and I got a locality officer and it's been the best thing that has ever happened to me. This girl came to my house and she got to know me, and that was how I got my power of attorney. She didn't know anything about power of attorney, so I taught her and told her. Together we went through it and with her encouragement hey ho it was done. It almost became very clear and we done all of that and that happened.
So that, getting a named person. Mine is a locality- she's not health. I think it's just someone who knows what's in the area and can signpost you there. But signposting isn't enough, sometimes you need to be taken the first couple of times so you know how to go and the various things like that and you're comfortable so you've got to be comfortable with that person and that person has to be comfortable with you, so that you can phone up as and when you need it. So that if I get an infection and it's really quite bad, my locality officer can be told and I let her know and then she can set things in motion if I need it. So that if a crisis comes up she already knows me and I'm already on the books. That's good.
I asked her - they deal with people who are under 65 - so I'll be 65 in October so I'm changing my consultant, and I was assuming I was losing this and she said 'oh no no, only if your needs get to the point where we no longer can help you, then that's when the service will change but we wouldn't withdraw totally' and that's what it is- it's mixing together. It's where you can see maybe if I've to get handed over maybe to someone else because my needs are different it's working together so it's a transition rather than a crisis and that's what I would be looking for the future, that people would be looking and making it a smooth safe journey where you're making transitions just smoothly and not just this ups and downs and ups and downs and crises and causing distress and anxiety, you know.
Marie - When we are working or inspecting a service it's really important we keep in mind legislation, not just legislation about care but also overarching legislation like the human rights act and about people's rights under the human rights act - which do not go way if you use a care service, or if you lose capacity. But sometimes those rights can be a tension for people because you can't always meet what everyone wants. Particularly the human rights when people are living in a communal situation. What we need to do it assist services to look at the Scottish Human Rights Association who have done a lot of work with the care sector, and we can use PANEL approach to look at decisions about rights and when or not they are upheld we have to have very clear reasons why they are not upheld. For most people human rights are a fundamental aspect of all our lives and should not be taken away from us because we go into care.
Marie - There is lots of new technology out there which allows people to live in their own home rather than going into a care home. For example, you can turn off someone's cooker so they can't burn themselves and someone coming in to do their meals. You can also have buzzers for medication, so a reminder goes off and says take your medication and gives people that reminder. If the front door is opened and someone goes out at night an alert system can go to the local authority who will know that person and they will have written down routes that that person will normally take and they can send someone to intercept them and bring them home so that person is safe. So there is lots of technology out there that we can use that is becoming increasingly used to keep people at home, and in care homes as well we are starting to see the use of some technology. Some of the concerns that I have with technology are about the ethics of it and the sorts of technology we are using. An example is CCTV throughout care homes where everyone's every minute it monitored, how would we like that? And it's interesting that a large provider in the UK has just done a survey about using CCTV throughout their services. And relatives were really in favour of it but actually residents have said no, they do not want to be on camera all the time. So there are bits when you can keep people on camera for certain amounts of time, but you need to ensure people's right to privacy, to be treated with dignity and to not have everything filmed is there. So there are ethics around it, and it's time we have a discussion around where that comes in, when is the right time to use technology and when it isn't.
Clive - Another aspect the role of the inspector is to inspect and regulate services in the community. This can be inspecting care at home services; people living in their own homes that have someone come in to help and support them, or attending a day centre where they go into a formal establishment and have staff to support them during the day. The important thing here in both situations is that we ensure that the person is able to live independently, have their own rights, be protected, and that the service that is provided is meeting the care needs that they wish to have and ensuring the care planning information that is provided meets in with the dementia standards and obviously the national care standards that we work with as well... It's important that the service user feels that the care that is being provided to them is what they need and they wish. And this is essential when it comes to care planning, especially when they are being supported with personal care etc., that all the staff members who go into attend to that person know how that person wishes their care to be provided. And they are then protected, and ensured that they are receiving the best care possible.
Heather - We know that dementia doesn't just affect the person living with dementia, it affects the whole family, it affects your friends, it affects your neighbours, where you live so that it extends further, so I think we have to be really careful and really think about the needs of the person with dementia first and foremost and that is not to say we put he needs of the family or carers second, but is to think of people with dementia as citizens in their own right. I think there has been a move to think of people with a cognitive impairment or any kind of, memory problem with not having the full rights of citizenship and for them and maybe for them some of the basic human rights are not applicable to them, we know within the Care Inspectorate that this is not the case, we are very strongly upholding peoples Human Rights within all the services that they receive, but also within society as a whole, we are seeing people coming through, living with dementia who are taking the role of activist of leaders within the community. If we think about the Scottish Dementia Working Group, they were involved at the very first stages of drafting the dementia strategy, the standards, their voice ringing loud and clear throughout all these principles, so it's really important that's the voice we hear first. Now there's sometimes becomes issues where maybe their views of the person with dementia could be at odds with the families and carers and they are living with and a lot of that is around risk. It's understandable, there's lots of risk involved when somebody starts to develop dementia, there's worries that the family can have, but sometimes those risks, the risk of physical harm get the greatest level of priority, so we are very worried about people getting lost, we are worried about people falling over, but we are less worried about what we could call the silent harms, we are less worried about the frustration that comes about because their independence has been taken away, about agitation that comes as a result of having a locked door constantly when you are trying to go somewhere where you want to go, so I think it is really important is that when we look at risk and are working with families and carers and the person with dementia that everybody gets an opportunity to have their say and I suppose one voice is not louder than any other, but we always have to come back to that person who is living with dementia. Looking at their needs, what matters most to them is the crucial part here.
Joe - The Standards of Care for Dementia in Scotland are very useful because they help the public to understand the expectations placed on care services looking after people with dementia, but also it highlights that we expect a lot more than we did in the past. So for example, care services often have locks on the doors. And yes we have locks on our own house doors. But it's about allowing people to have freedom of movement, to come and go as they please and this also related to national care standards that highlight this. So standards are really important because it helps people to be absolutely crystal clear about what expectations people can have. All too often expectations are lower than they should be... Which brings me to co-regulation. Because if we are relying on the public to be our eyes and our ears it's really important to understand what standards we can expect. If they are expecting less then they are not going to raise issues or come to us with concerns, because they are going to be thinking this is ok, when very often it isn't ok and we need to push services to be the best that they can be. So that people's rights can be respected and people can do what they really want to do when they are using a service... within reason.
Scott - Okay so I would like to talk to Mrs McGregor now. Jean McGregor.
Annabel - Okay.
Scott - Jean has been here for 2 weeks now and I can see from her care plan that under the instruction from the district nurse (who she saw two days ago?) that she is no longer allowed to go out of the care home on her own. Could you tell me more about that?
Annabel - Yes, We asked the district nurse to see Jean; there were a few things we needed to discuss. After she saw her, the district nurse said that she wasn't to be allowed out anymore in case she gets lost.
Scott - Okay, Does the district nurse know Jean?
Annabel - No I don't think so.
Scott - So who else was involved in the decision to stop her from going outside?
Annabel - No one I don't think. The district nurse just said she was to be kept in in case she gets lost or she has a fall outside when no one was with her so we put that into her care plan.
Scott - And what does Jean think about that?
Annabel - She's okay mostly but unsettled at times. Especially when she wants to go out and we've had to tell her she can't go out by herself. We take her into the garden but she wants to go into the village. She's lived here all her life. She knows everyone. I think she misses the walk and the chat with the people she meets.
Scott - So what does her family think about the fact that she's no longer allowed going out on her own?
Annabel - Well her daughter is NOT happy about it. She thinks it's better for her mum to get out and that keeping her in is doing her more harm than good. Jean can't walk very far so she's not going to get terribly lost. Everyone knows her too.
Scott - So what do you think's best for Jean?
Annabel - Well that's difficult because the district nurse has told us what to do.
Scott - Well let's think about Jean for a moment and how we can help her. What would happen if she got lost?
Annabel - Well there's a danger of her getting lost a little bit in the village. There's a risk of her falling but as I've said before she's lived here all her life. Most people know her. Someone would help her home but the district nurse has told us no.
Scott - But whose decision is this to make? I mean we have to consider Jeans rights in this.
Annabel - Okay well we could have a review meeting with jean and her family and the district nurse and talk about what Jean wants and what's in her best interests.
Scott - So you look into that. Remember Jean's rights and if there's anything else that you need, let me know!
Annabel - Okay thank you.
James, Scottish Dementia Working Group
Well I think the biggest factor was the way I was being treated by people. From being a capable adult, you got a diagnosis of dementia and suddenly you were written off, you couldn't do things for yourself anymore. I think I was programmed to accept that. But then I began to rebel and think I can still do things for myself and I can still give back to society. So it was just a process of re-discovering myself.
There was one time there was a dementia conference and I wasn't allowed in because I had dementia. At that time I had a support worker called Brenda and she backed me up. To cut a long story short, the next year I was back at the same conference presenting at it.
Again I thought, doctors, nurses, journalists have all got there unions. Carers have got their groups. But there are no groups for people with dementia anywhere in the world and I thought that was wrong. What did people fear if we got together, what did they think would happen?
So with the help of Brenda and Heather the three of us got together and set up the Scottish Dementia Working Group. I was the only member at one point but now it's mushroomed to over 100 members I believe.
But it was basically because I was driven into it by the way people were acting. They just don't understand that if you've got dementia you can still have some sort of life.
Everybody loses their confidence when they get a diagnosis of dementia. I was no exception. But through support from social work I got on a programme where I got person centred help and through that I got my confidence back up. I was able to do things. There's things I can't do now, like counting change and things like that, but there's still so much that I can do. And others: it's not just me, we've all got something to give back and that's why we're in the group. We're giving back to society for the help that we've been given.
Caroline, National Dementia Carers Action Network
Generally my experience is that when many people go into care homes their very rarely taken out doors and the importance of having fresh air and sunlight for vitamin D and all of the things that are linked to being outdoors is just one of the other things that can be taken away. I became an assessor with the Care Inspectorate and so I see things in other care homes, and I'm a great believer in if one care home is doing something really well, tell another care home share good practice because again most of these things are really simple, one of the big issues you hear from staff is we don't have enough staff, you have an activities coordinator in a care home they often one person out at a time, there's a garden at the back, why wait for the good weather so you're really hitting on things that I think are really crucial and need to be identified and highlighted much more, lets involve the communities if people can't access their communities bring the communities to the people in care homes, and the very specific's then could you spend an hour a week taking somebody or going for a walk with somebody, whatever the weather might be cause to me that sense of connectedness both with the person and with the environment to me its madness not to do that.
Diane, National Dementia Carers Action Network
I think the most important thing is just to remember that you might be new to this, but we are all new to this as well. It's not like this is the third time round that we can all learn from experiences with other family members.
For most of us this is the first time it has happened to us. We're like rabbits in headlights. We kind of need that emotional support, but we don't know we need it until we start to get it.
And we don't know what we need because we never experienced it before. And I felt we were quite lost. And even when social work did rock up to help us, we had no clue what they were there to do. So even if they can just be specific about what they can and cannot help us with, and just empathise with people like my dad that are just a wee bit too proud... even when they know what you're there for. Just reassure my dad that you're not going to take over his life, he's not going to become a statistic. But actually that you're thinking about him as a person and about my mum as a person.
Agnes, Scottish Dementia Working Group
I now have a Power of Attorney which took me five years to attend to because there wasn't enough, in my opinion, simplified information about it and it was quite a big complicated thing that I think could have been simplified better. Then once I had got it done, got the lawyer and got it signed I felt much better about it. But while it was hanging over my head it was like one of those kind of doom and gloom things, and I was giving talks by this time in the working group about power of attorney and yet when someone says 'have you done it?', I would say no, I'm in the process of doing it. So I think we need more trained people to take... I'm going to say take control because at that time, and still do... I'm not great at making decisions. I'm not sure of myself. I need someone to not sit back and say 'well it's really your decision' because it took me five years to make the decision because nobody was helping me to that step through fear.
Well I think, just treating me like a human being is so precious. Professionals are so busy that sometimes they don't have time to be that caring person that you know they are. Because they maybe only have ten minutes to get a certain act done and they are pushing you forward. So I think it would be good just to remind professionals that they do have rights. Why is it that they expect the person with dementia not to have a life, and to always be available when they want them to be available? And then they look at you quite crossly when you say 'I'm sorry I'm not available. I'm coming to do filming today, to do training'.
I mean, you're not supposed to have a life when you've got dementia and I wonder where they get that from, because when you've got a diagnosis of dementia your life is different. It might be you're not able to do as much (which I certainly can't do) but I like to fill my life: as the government, as the doctors, and the professionals are telling me. But once you start to do that, the professionals frown because you're out! 'When you're supposed to be sitting depressed at home, waiting on me calling you'. And I just think it's horrific!
So start realising, and don't come and say 'well I can put you in on a Wednesday'. Well I'm sorry, but I'm busy on Wednesday. You know. So why should I be any different from anybody else? The thing I want to say, to the people with dementia more so, is just to get on with your life and do what you can do and let the professionals fit in with you... you know
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