Podcast – Dementia and risk enablement in NHS and Social Care settings (Functional Objects and Mobility)

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk, a network for early career researchers.

Megan Calvert-O’Hare:

Hello, risk enablement and dementia care is a balancing act. We all want to keep our loved ones safe, but this can lead to denying a person the right to choice and self-expression. At the heart of it, it is supporting an individual living with dementia to take positive risks within their daily lives to keep purpose and meaning in their lives. We will be discussing two facets of risk enablement in both NHS and social care settings with my two guests today. Kellyn Lee is a senior research assistant and final year PhD student at the University of South Hampton. And Pippa Collins is a clinical doctoral research fellow and advanced clinical practitioner also at the University of South Hampton. Welcome to you both.

Megan Calvert-O’Hare:

We’re going to talk about risk enablement, which is quite a broad topic, so maybe, Kellyn, you can talk a little bit about what your PhD topic is. I know you’re looking at functional objects and their importance in maintaining and supporting the cultivation of identity.

Kellyn Lee:

Yes. My background is psychology, and I’m interested in what people do, why people do things and the conditions that cause certain things to take place. My interest in dementia in relation to risk was in relation to a care home. They seem to be very passive places, so care staff tend to do everything for people. Residents tend to be looked after. What I wanted to look at was how people can be enabled, how people can be empowered, what kinds of risks are suitable for care home life. The PhD idea came from, I’d done some work in a care home, and it was loads of people sat around a room and a TV on in the corner and they would wait until it was lunchtime to be moved to the dinner table or until an organized activity was presented to them, and then it would be again moved to where that took place.

Kellyn Lee:

I wanted to know why they weren’t involved in the everyday task. So if this is home, why aren’t they washing up, why aren’t they making a cup of tea, why aren’t they polishing, doing some hoovering, just making that property home. Another reason why I wanted to look at it was for the last seven years, I’ve been a researcher in dementia, so I took part in two projects which looked at creative arts. The idea that people could paint an exhibit, paintings, the carers and relatives and spouses seemed to think that that was out of reach, that it would be too much. But giving these people these objects and enabling them to take part in an adult education art class, they achieved some amazing things.

Kellyn Lee:

What I saw was that the way that people viewed that person started to change. They started to see them as capable, as opposed to focusing on what they can’t do.

Megan Calvert-O’Hare:

And so that was separate to your functional work in the care home? Or have you managed to combine the creative and the functional?

Kellyn Lee:

It kind of combines all of it, because it’s looking at what are meaningful tasks for people to do. So rather than concentrating on activities or this organized fund, which is important, does that align with what somebody wants to do? Does that demonstrate their identity? So when I was developing my research question, I had a conversation with a woman whose mom had gone into a care home. Mom didn’t want to be in the care home, daughter didn’t want mom in the care home. She had visited her mom frequently, and on this one occasion, she came out and she felt good, and usually she didn’t. I asked her why, and she said, “Apparently, mom likes it when I take in a flask.”

Kellyn Lee:

So I said, “What is it about the flask?” And she said, “Well, I don’t know.” So I said, “Well, would you buy mom a flask to have in the care home?” So she said, “Well, what would be the point? She has dementia, she’ll forget to drink the tea.” So I said, “Well, perhaps it’s less about the tea and more about this ordinary object. At the time that you have it, when you come in, she can pour you a cup of tea. She can be the host. Something that she would have done at home.” And that’s not something that’s readily available for a person living in a care home.

Megan Calvert-O’Hare:

I guess it’s also controlled, isn’t it?

Kellyn Lee:

Yeah.

Megan Calvert-O’Hare:

She can control that situation a bit more. She has the, not the power, that’s taking it too far, but like you say, host, she’s the one that’s dictating what’s happening then.

Kellyn Lee:

She can make decisions as to when they have tea. She can pour the tea. Like you say, she has the choice-

Megan Calvert-O’Hare:

And active not passive.

Kellyn Lee:

… she has control over that situation at that time. Again, which is something that isn’t readily available to people that live in care homes.

Megan Calvert-O’Hare:

Okay. Pippa, you’re looking at immobility, which we know is a common challenge for people with dementia, particularly whilst they are inpatients in an acute hospital, so maybe you could talk a bit about your work.

Pippa Collins:

Well, my background is as a physiotherapist, so I’m acutely aware that within an acute hospital, people who are older and particularly people who have dementia are not enabled to move around. We very much passively position our patients. As soon as somebody comes in through the door of our hospitals, a person becomes a patient. And this patient is placed upon a trolley, an A&E, moved on the trolley towards the bed in the AMU, moved from the bed in the AMU up to a ward, moved on their bed within the ward. And yet, this is a mobile person whose mobility is so restricted. Its juxta positioned by this incredible mobility of the hospital. The hospital relies on bed flow, so movement is intrinsic to the operation of a big acute hospital. We have the hyper busy, hyper empowered, busy professional juxta positioned against the immobile person who’s now become a patient.

Pippa Collins:

We have an institution that relies on the movement of these patients through the hospital, and yet the patient has no control of that movement. So again, it goes back to the control issue. The person who has a dementia has no control. There is increasing research evidence now to show that pretty much anything that a person does who has dementia is deemed as risky and to be avoided. We use pejorative terms like wondering, rather than somebody who likes to walk around or walking with purpose, because I’ve never met a person with dementia who’s not got a purpose to their walking. If somebody repeatedly tries to stand up, they’re told, “Sit down, Mrs. Jones. Sit down,” because it’s seen as a risky activity.

Pippa Collins:

So again, under the lid of risk enablement that our DTC has been looking at, I really, really wanted to explore this dynamic, the mobility, immobility dynamic of a person who has a dementia within this very busy, frenetic environment.

Megan Calvert-O’Hare:

You’re obviously working in quite different settings. We’ve got care home and NHS.

Pippa Collins:

Yeah, very different.

Megan Calvert-O’Hare:

This is something that comes up a lot, the reluctance or acceptance of staff to help you with your aims and your research. Could you talk a bit about challenges you’ve had? Or how accepting have people been when you’ve come in?

Pippa Collins:

Well, if I start and say that I couldn’t have had more help. My colleagues and the people I’ve worked with have been incredibly enthusiastic about my research and incredibly helpful. I definitely think it helps that I am part of the world. Although I don’t work entirely on the acute medical unit anymore, I am known down there. People are very interested in what I’m doing, and honestly could not have been more helpful. But I do believe that’s because I’m a known insider, if you like. I think that that gives me an access to people who are in a very vulnerable time. They’re either in social or physical crisis when they’re on an acute medical unit. I don’t know if I’d have got such access if I hadn’t been known and trusted within my world.

Megan Calvert-O’Hare:

And how have you found it, Kellyn?

Kellyn Lee:

I think for me, when I set out on this care home study, I was told repeatedly it will be difficult to recruit. I gave a presentation at a dementia awareness meeting and I was approached by a local authority, Adult Services Service manager who said, “We want you to do your research in our homes.” So for me, I didn’t face that barrier. However, I did face barriers once I was in the homes. So for example, I think as researchers and people that work in this field, we all think that research is a good idea, change is a good idea. For the people on the ground, change isn’t always a good idea because they’re the ones that have to implement it.

Pippa Collins:

And if you’re in the NHS, you will live in a constant world of change.

Kellyn Lee:

I think particularly for social care. Every care home is different as well. There are different dynamics that are going on within. One care home, they welcomed me with open arms. Another care home, they were quite suspicious of me. Some staff openly would leave the room if I went in. Other staff would be quite happy to chat and learn. I think it was about building those relationships and trying to break those barriers. But I think as a researcher, it’s also understanding that just because management want the research to take place and they want some answers, that has an impact on the people that are working in there. And they’re not necessarily the ones that have agreed to have the research take place, but they’re expected to be participants. I think that’s something that you have to kind of negotiate and be sensitive to.

Megan Calvert-O’Hare:

Yeah. Coming back a little bit to what you were saying about having functional objects in the care home setting. You said about doing the washing up, I mean, is that even feasible in a care home? Could you set it up that they help lay the table, or people in the care home put out the bins, sort out the recycling? I was just thinking of the boring tasks I do at home. Is that feasible in a care home?

Kellyn Lee:

The majority of research so far is concentrated on objects more as comforters, particularly in relation to dementia and aging. Researchers looked at the objects that make a room look familiar, the cover, a small piece of furniture, pictures, photographs, things like that. The functional objects as we’re talking about, if I’ve made clear what I mean by the functional objects, because obviously any object has a function. But if we look at things like a kettle, we can take action, so I don’t have to wait for the 11:00 o’clock trolley to come around. I can make my own cup of tea when I want my own cup of tea, the way I like my cup of tea.

Kellyn Lee:

I could have it in my own cup rather than the care home cup that everyone else has used. I know I have a cup that I have for tea and a cup that I have for coffee, I don’t know why. It makes no difference, but for some reason to me it does. These are the objects that I’m talking about within the home, a Hoover, a duster, having these things that you have access to carry out a task. In relation to care homes, they have staff employed to do those things. So I think because staff are employed to do them, that creates a barrier, “Because if I allow you to do it, then what am I doing? Do I look like I’m not doing my job? Am I then in a difficult position because I have to then … I could be questioned about what it is I’m doing and what I’m not doing.”

Kellyn Lee:

Equally, “If somebody has an accident, then is that my fault? So what I will do is I won’t allow you to use things because every object is seen as a potential risk.”

Megan Calvert-O’Hare:

Well, I was going to say the kettle one, obviously boiling water, you immediately think risk, don’t you?

Kellyn Lee:

Yeah.

Megan Calvert-O’Hare:

But I guess you have to balance the benefit to their lifestyle.

Pippa Collins:

It’s interesting that you say you look at a kettle and you immediately see risk, I mean, why is that? Because this-

Megan Calvert-O’Hare:

Because I have a two-year-old at home.

Pippa Collins:

But this lady will have been living in her own home for the last 70 years and making cups of tea too many to ever count. Because she’s changed her environment, that simple task of making a cup of tea is suddenly deemed too risky for her. And I think what Kellyn is perhaps saying is an exploration of where does that mindset of the instant perception of risk come from in what is in effect a normal household object?

Megan Calvert-O’Hare:

Yeah. I guess you have to remember that they’re individuals coming with a background of managing their own risk every day.

Kellyn Lee:

I think you also have to understand, if we’re going to deliver true person-centred care, that means that the care is individual. If it’s true person-centred care, we’ve listened to that individual and we’re working with that individual in order to fulfil their needs and make sure that their needs are met. A person coming into a care home, we need to look at why they’re in the care home, what were they managing while at home? What are the reasons for them coming in? Because they could have come in because they’ve had a couple of falls, that may have nothing to do with them being able to use a kettle, with them being able to make their own lunch, with them being able to carry out household chores, that as research says are important to maintain identity, to keep those routines and rituals going that you’ve developed over a lifetime.

Kellyn Lee:

However, if I remove all the objects … So say for example today you’ve probably used over 10 objects in order to get ready this morning, to make yourself feel like yourself, to come out to do what you need to do, so if you imagine if I take all of those objects away from you because potentially you could hurt yourself with one of them, where does that leave you?

Megan Calvert-O’Hare:

On a production line.

Kellyn Lee:

And where is your identity? Because I’ve just stripped it away because I won’t allow you to do the things that make you. When we’re looking at risk, it’s very easy to say that there is a risk involved. There may well be a risk involved, but we need to look at the bigger picture and say, “Well, let’s do a risk assessment.” In your care planning, let’s introduce functional objects into that care planning. Let me look at what you were doing while at home, or even not particularly well, but what you were able to do at home, and let’s see how we can incorporate that into your care plan so that you maintain those routines and rituals that will help you settle in this new context, in this new environment.

Megan Calvert-O’Hare:

Mixing your kettle and your flask story a little bit, I guess you could say the kettle may be too risky for someone, but a flask is a good intermediate between having the cup of tea totally made for you. It takes out the element of pouring boiling water everywhere, but it still gives you some control. So I guess it’s finding where the person sits in that.

Kellyn Lee:

I think it provides that compromise, but equally, this hasn’t been looked at. What I found with the research is objects are seen as materialistic. What we need are human-human interactions. We need love. We need care. We need all of those things. Yes we do. And I’m not taking that away from the research that’s been done, of course we do. But what has been excluded or overlooked is the need for how we interact with our material world as well and what that brings to our lives, and also how our relationships can develop with each other. So for example, if you see me doing things with things, maybe to you, I’ve become more capable. Maybe you then see me slightly differently. Maybe you allow me to do more for myself because I can demonstrate to you what I can do.

Kellyn Lee:

However, if you haven’t given me that chance and removed all the objects in the first place, you’re positioning me as incapable of using anything. There is nowhere to go from there. But it’s not the fault of people in care homes, it’s just because functional objects haven’t been looked at because we tend to … If someone comes into a care home, we care for you. We don’t look at people, particularly older people, as being active.

Megan Calvert-O’Hare:

Yeah. I guess this links a little bit to something you wrote in your bio paper about how systems have been designed without their users in mind. So you have a whole setup because it worked for, in your case, in a clinical setting, nurses, doctors, physios, moving people around, but that system doesn’t necessarily work for the patient. So is that what you’ve seen?

Pippa Collins:

Yes. I think that’s a really interesting point and something that I’ve been really passionate about, which is why is it that the systems have been set up by people like myself and not set up by the people who are the main users? The main occupiers of hospital beds now are people who are complex, tend to be older and may or may not have a cognitive problem. Looking at the research, you can recognize that there’s an enormous amount of work that’s been done about experiences of caregivers and experiences of staff and very, very little that directly gets the perceptions of people who actually have a dementia.

Megan Calvert-O’Hare:

Which always seems mad when you say it like that.

Pippa Collins:

But there really isn’t anything. One of the things that I’ve done for my PhD is to try and work out a way where you can include people who’ve got a dementia, which is in a way that enables them to take parts and express their point of view or say something that’s important to them. When I look at research, there’s been a lot of semi structured interviews, and there’s quite a bit of observation of people with dementia. A semi structured interviews or any form of questioning is really threatening for someone whose recall on demand is limited. There’s been some research about asking people what their experiences of hospitalization was after they’ve got home, but again, a non-contextual conversation is hard for somebody whose recall is limited.

Pippa Collins:

I thought about this a lot and I spoke to lots of people who have dementia, and I spoke to a lot of people who look after people or who are related to people with dementia and I decided that I would use a narrative inquiry approach and video people. And instead of going into the acute medical unit and asking people what it’s like to be there and have they moved around, because I know if I asked them that, I can ask them that clinically and I know they will say, “It’s fine. Everybody’s very nice.” I decided that I would just ask people if they would mind having a conversation with me. And so my research is videos of people having a conversation about what’s important to them at the time.

Pippa Collins:

And very often, it’s not anything to do with the hospital environment. It’s things that talk about them as a person, who they are, where they come from. They tell me about things that create a person for them to be recognized by, because their clothes will have been taken off, they’ll be in a hospital gown. They’ll either be in bed or beside their bed. They have virtually no personal belonging. Some people come in with a few, but a lot of people have no personal belongings at all. I’ve been really lucky that people have wanted to take part. And because I’m videoing, it means I can capture body language as well as verbal language, because again, within the hospital environment, within all care environments really, we rely on people telling a structured time, a temporal story where you’ve got a beginning, a middle and an end. And throughout the whole of healthcare, you’re expected to tell your story like that.

Pippa Collins:

So someone who can’t tell their story like that, who jumps around different topics and different times and different people, or perhaps doesn’t use words, they’re not listened to. They have a label slapped on their head that says confused, and nobody listens. To me, that’s the nub of why we’ve created our systems to not suit the main users. We have not listened to people. We don’t give them time.

Megan Calvert-O’Hare:

In a way, it’s the flip of the campaign to get doctors to introduce themselves to patients because patients felt detached from them. So you say, “Hi, my name is.” In a way, this is a flip of that, you’re trying to get the patient to look like an individual to the doctor again.

Pippa Collins:

Absolutely. I mean, what you have to bear in mind, I’ve been videoing people within the first 48 hours of arriving in the hospital. They’re all in a social or medical crisis, and none of them will have been asked questions by less than 24 different people. Now, I know that if I’m on the phone to talk, and I have to tell my story to one more person, and that’ll probably be the third, I want to reach down the phone and throttle them. If, as happens during my research, a man starts to hit somebody, he’s labelled as aggressive. Nobody actually understands that this is a man who’s probably just had the 25th person ask him exactly the same thing in an environment that’s so noisy that it’s really hard to hear yourself think, let alone what someone’s saying to you. And they’re very, very frustrated.

Megan Calvert-O’Hare:

Yeah. Do you ever do any work in social care homes or are you purely clinical?

Pippa Collins:

At the moment, I’m purely in the acute hospital. I have worked in the community before, so I have been into many care homes in my clinical role, but researcher wise, I’ve researched in the acute hospital.

Megan Calvert-O’Hare:

Something we love talking about on this podcast series is ethics and consent, and obviously you’re talking to a lot of patients. You said you videoed them, how did you go about getting consent for that?

Pippa Collins:

Another thing I think that’s really interesting is, I call it, the exclusionary ethics of research. The ethical process is designed really to exclude people who’ve got a dementia. When you read research articles, very often people will be excluded because they score a particular number on a standardized scale, or they lack capacity, whatever that might mean, to decide. I spent a lot of time talking to people with dementia, this is before I did my project, and it’s completely apparent to me that if someone wants to have a conversation with me, they can say yes or no. I think our process of consent has been designed for biomedical trials where you might be taking medication, but really for a quantitative research such as mine, I’m offering to use a tablet to video somebody.

Pippa Collins:

I chose the tablet so that I can show pictures of me and my family, and I have conversations with my mum because I think I need to give something of myself if I’m asking something back. It’s got quite a good resolution so most people can more or less make out their video. I haven’t found anybody yet who can’t say yes or no whether they want to take part. And then I’ve split my consent into two processes, so during the time we have our conversation together, we spend a bit of time talking and interacting. I think during that time I can get a pretty good understanding if someone really understands that I’m going to be using this for research and education. And if it seems that someone really doesn’t understand that non contextual concept, then I will go to a personal consultee. So I would ask a relative if it’s okay to use the data.

Pippa Collins:

And actually, I’ve only had to ask two relatives, and they’ve both been very happy for the data to be used for education and research. Even the people I’ve met with very severe dementia who when they’ve been approached by one of my colleagues, because I don’t make the first approach, will make an indication like maybe just shutting their eyes and turning away to indicate that they’re really not interested in a conversation at that point. I think we disempower people even at the level of qualitative research by saying you haven’t got the capacity to give consent. Well, I’m sorry. I think most people have the capacity to give consent whether the video, because they are very personal and recognizable, should be released into the public. I think it’s so non contextual that that’s another issue that has to be separated out.

Pippa Collins:

And the other thing is all this paperwork. I haven’t yet met somebody who has a dementia who can read pages and pages, and so my consent is all verbal and it’s very contextual, because I have it all on my tablet so we can see what we’re going to be doing. I document in my field notes, consent, and make sure that they’re still happy for it to continue. And then at the end we look at the video, and if they don’t want to keep it then we’d go delete and it goes. And if they do want to keep it then it’s kept.

Megan Calvert-O’Hare:

So they’re part of the whole process? It’s all very visual.

Pippa Collins:

Yeah. I hope so.

Megan Calvert-O’Hare:

We’re coming near to the end now. So is there any final thoughts or anything else you’d like to say that you’d like our listeners to know about your research or your important take home messages?

Kellyn Lee:

If possible, just a few of the research findings that I have.

Megan Calvert-O’Hare:

Yeah, go for it.

Kellyn Lee:

It’s also, I think, important to say that I took a citizenship approach to the research. And I believed, because I wanted it to be an active, using functional objects, people being active, taking action, having self-determination, choice control, those kinds of things, I took a citizenship approach. But when looking at citizenship, it was kind of like, well what is citizenship in practice? What does it look like? How would I know whether it’s there or not? So I tested the material lens to see whether that would be useful in saying this is what citizenship looks like and this is what it doesn’t look like. So within my findings, I found that people coming from hospital straight to a care home, often there was a best interest decision that was made.

Kellyn Lee:

So somebody with dementia, maybe had a fall at home, got into hospital disorientated, a decision was made, they can’t return home, straight to a care home. They didn’t get to choose the care home. They didn’t have any say in going into the care home. And equally, they didn’t have any opportunities to organize the belongings that they took in.

Megan Calvert-O’Hare:

So literally, hospital to care home.

Kellyn Lee:

Yeah, straight to care home. From a psychological perspective, you haven’t had the time to adapt or to come to terms with what’s happened. Organizing your personal possessions can then enable you to come to terms that you can give certain objects away, keep certain things. But this was continued throughout, so once a person was resident in a care home, they also didn’t have opportunities to return home to collect belongings. They could make a request that they would like something, but they had no control at all over their contents of their home, and that was with every single participant that I worked with. There was this idea of risk, again, rather than it being risk in relation to risk of harm, it was seen as, “Well, if we allow them the opportunity to go home, there’s a risk they won’t want to come back.” The risk was different in that context.

Megan Calvert-O’Hare:

Was there also an emotional risk somehow? Like you say, best interests, so you’re saying, “We don’t want to upset you by letting you go home because this isn’t your home anymore, so we’re just going to put you in the new place, and that will be better for you.” So not really talking through it from the emotional side of it.

Kellyn Lee:

I’m not entirely sure the reasoning behind it because I didn’t look into that. That wasn’t part of the project, but I was acutely aware that you couldn’t … The circumstances by which somebody had moved into a care home were equally important to understand how the decision making took place. And it seemed that people that had a best interest decision, people with dementia, then it set a trajectory of excluding them from decision making because they lacked capacity in what-

Megan Calvert-O’Hare:

So the bar was set, basically?

Kellyn Lee:

They walk into the care home on the threshold that, “I can’t make decisions,” so therefore we’ll make all the decisions for you. There was also the access to objects. There was this idea that care homes would say, “You can bring in whatever you like,” however, as soon as I started asking questions about, “Can I bring in a hairdryer?” “No, you can’t bring in a hairdryer.” “Can I bring in hair straighteners?” “No, you can’t, because they’re seen as a risk.” So every functional object by care home staff was seen as hazardous or risky. The objects were viewed as risky, but it was based on a lack of evidence. There was no risk assessment that took place, and it was just somebody somewhere had done something at some point, and that’s kind of what the risk was based upon.

Kellyn Lee:

It was some anecdotal or something that maybe happened five years ago, but it’s still playing out every day. There was also this sense of objects would go missing, “Because people have dementia, they won’t remember where they’ve put things. They will take other people’s things. They will hoard things.” But what I found was that care staff were removing things from people’s rooms because they thought they were risky, but not telling the person that they’d moved removed them. So the person was wondering, “Where are all my things?” And not being told. So when I saw somebody walking around with her radio under her arm and people going, “Oh bless, look, it’s her dementia.” No, it isn’t. It’s because she thinks if she leaves it in a room, it’s going to go missing because her clothes go missing every night.

Kellyn Lee:

They go missing every night because they’ve taken them to the laundry, but they’re not telling her that they’re taken to launch. So she set her clothes out for the next day and wakes up in the morning and her clothes have disappeared. So you can just imagine how this context is impacting on dementia, and particularly how people view dementia, “Because she’s confused.” Well, she’s confused because of the context of this environment. The material citizenship, I think what this does is it shows whether it’s absent or present in relation to the object. It puts the person in a more powerful position, the person with dementia. So if somebody can’t have that hairdryer, well why not? How have you come to that decision? How have you made that conclusion? Have you done a risk assessment? Has anything been done?

Kellyn Lee:

Because if you haven’t, it has to be yes. It kind of should be an opt in, opt out. So if that person wants these functional objects to use every day, if you can’t give an evidence based explanation as to why they can’t have it, then surely they have to have it. There was an amendment made to the human rights 1998 in December of last year, which says that, it contravenes a person’s human right if they can’t enjoy their own objects. So I think using that, taking the human right, taking the citizenship approach and having these objects, which you can see, you can observe and you can question with, which also includes people with dementia because you can see them using them or not, it places people with dementia on a much stronger footing. It empowers them, and I think it evidently in long-term could possibly make care better.

Megan Calvert-O’Hare:

Well, thank you both so much. This has been really interesting. I hope you’ve enjoyed it.

Kellyn Lee:

Thank you.

Pippa Collins:

It’s been great, thank you.

Megan Calvert-O’Hare:

If you have anything to add on this topic, or you would like to join us for our podcast recording yourself, please do post your comments on our website or drop us a line on Twitter using #ECRDementia. Subscribe to this podcast through SoundCloud and iTunes. Thank you.

Voice Over:

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