Podcast – Improving Care & Support for People with Dementia

Megan Calvert-O’Hare:

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, my name is Megan O’Hare, and welcome to our podcast recording for the NIHR Dementia Researcher website. This week, I’m joined by three panelists from Leeds Beckett University who are going to talk about their research, which is focused on improving care and support for people with dementia and their families.

Megan Calvert-O’Hare:

A bit of background into the topic today. In 2013 the James Lind Alliance and [inaudible 00:00:35] undertook a priority setting partnership. Essentially, this was a big survey to discover what people feel future research priorities should be. This may or may not be a surprise to hear that nine out of the top 10 were related to care. Coming from a basic biology background, as I do, I was a little bit surprised, but here are the top three.

Megan Calvert-O’Hare:

What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings? How can the best ways to care for people with dementia, including results from research findings, be effectively disseminated and implemented into care practice? And what is the impact of an early diagnosis of dementia, and how can primary care support a more effective route to diagnosis?

Megan Calvert-O’Hare:

The panel today have been working on addressing these priorities with the research they do. So I’d like to welcome Alys Griffiths, a research fellow.

Alys Griffiths:

Hello.

Megan Calvert-O’Hare:

Rachael Kelley, also a research fellow.

Rachael Kelley:

Hello.

Megan Calvert-O’Hare:

And Cara Sass, a PhD student in your third year?

Cara Sass:

Second year.

Megan Calvert-O’Hare:

Second year, great. So maybe let’s start by hearing from each of you a little bit about your own research projects, and then how you all link together. So Cara, shall we start with you? What’s your PhD topic on?

Cara Sass:

Sure, so I’m looking at what the impact is of sporting-based reminiscence. I’m working with the Sporting Memories Network, it’s a charity that’s UK-wide, looking at what their community groups are doing for men who live with dementia specifically.

Megan Calvert-O’Hare:

Okay, and who funds you?

Cara Sass:

I’m university-funded, so I’m on a three-year PhD, fully funded by Leeds Beckett University. So it’s purely full-time for me.

Megan Calvert-O’Hare:

Okay, great. Rachael?

Rachael Kelley:

So the work I do is mainly looking at how we can improve care for people with dementia and their families using quite qualitative methods. I’ve used quite a lot of ethnography to either look in the past about how much families were involved when someone with dementia goes into hospital, that’s a project that I finished as part of my PhD. And then I’m working on some research that’s starting now, looking at how we can improve care for people who have dementia and cancer. Both those projects are funded by the NIHR.

Megan Calvert-O’Hare:

Okay, great. And Alys?

Alys Griffiths:

So I’m the quantitative researcher that goes alongside Rachael. I came from a mental health research background and was looking at the mental health of people working in care homes, and kind of moved into dementia research that way. For the past few years I’ve been working mainly on the EPIC trial, which was also NIHR-funded, looking at whether dementia care mapping was effective and cost-effective within care homes.

Megan Calvert-O’Hare:

Okay, so you’re mainly based in care homes, your research?

Alys Griffiths:

Yeah, I mainly work in care homes.

Megan Calvert-O’Hare:

And Rachael, you deal with people mainly based in hospitals, is that right?

Alys Griffiths:

Yeah, it’s been mainly based in hospitals, although we work together quite a lot, so I have also done some work in care homes on the EPIC trial as well.

Megan Calvert-O’Hare:

Okay, great. So, just picking up one of the priorities that we mentioned earlier about effective components of care that keep a person with dementia as independent as they can, your PhD, Cara, kind of takes that and looks at sports-based reminiscence with … It says here for men, is it specifically for men? Is that something that you’ve found, that sporting reminiscence really resonates with men with dementia?

Cara Sass:

Yeah, I’m taking more of a focus on the gendered experience of living with dementia. There’s more research into what it’s like for women who were diagnosed and living with dementia, but in general there isn’t a lot really that looks at the differences between men and women. And what we’ve found is that there’s quite a lack of support available that appeals to men when they’re diagnosed with dementia. So sporting memories is one of the ways that we can tap into appealing to men, and getting more men out of the house and socializing with other people and engaging with support.

Megan Calvert-O’Hare:

So it’s quite an active … You actually get people to come to you.

Cara Sass:

Yeah, the groups are based in a variety of different settings in the community, so they can be hosted in sports centers, libraries and other community centers as well. They do do some work in care homes as well, but obviously that’s kind of another side to the research that I know Leeds Beckett university is obviously looking into with sporting memories as well. But I’m focusing mainly on the community groups.

Megan Calvert-O’Hare:

Okay, and how did the sporting memory thing come about? I know probably you get this all the time, and it’s quite a dated thing, but men do seem to remember football results over their anniversary with their wife. Is that actually true?

Cara Sass:

Well, I mean, not obviously wanting to stereotype men, but yeah, I mean it’s a massive thing in a lot of men’s lives, sport. Definitely football, but lots of other sports as well. And they kind of form formative moments in men’s lives, they’ve got really vivid memories that resonate with a lot of people as well.

Cara Sass:

So it’s not just about looking at people who are lifelong devoted funder sport, but looking at what the memories are that they associate with sporting events as well. It’s a way of kind of engaging people with those old memories, the ones that are a lot more resonant now, and kind of bringing other men together. So women do attend the groups, but there’s definitely a greater proportion of men that attend them, and I’m trying to find out why.

Megan Calvert-O’Hare:

Yep, okay. And do you involve their families as well? I know you said it’s not necessarily just remembering a football match or a rugby match, it’s also associated memories with that. So if you involve the family, do you find that then they also can make links with the family?

Cara Sass:

Yeah, well I involve anyone that attends the groups. So it’s not just the men that are there, but any wives that attend with them, or any other family members, and also the people that facilitate the groups as well. Because often the people that that go with them and sit among them in the groups notice a lot of other features of how it’s impacting on that person, and whether there are any changes in them since they’ve started attending as well. So yeah, I look to everybody that knows bits about that person as well.

Megan Calvert-O’Hare:

Okay. And does this link a bit with what you do, Rachael, in that you’re looking at how families can help support people with dementia?

Rachael Kelley:

Yeah, absolutely. The research that I did looked just in a different setting, really. So whilst Cara is focusing on the community, I was really interested in how much families are involved when someone with dementia goes into hospital. Because up to one in four people in hospital can have dementia, and they can often find it quite a difficult place to be.

Rachael Kelley:

And they tend to have worse outcomes as well, more likely to die or to go into a care home, become malnourished, et cetera. So I was really interested in looking at how we could make that experience and care better in hospitals, and I was specifically interested in looking at how much families are involved in that and what difference it makes when they are involved.

Megan Calvert-O’Hare:

So within a hospital setting, is there scope for doing what Cara does, holding sort of reminiscent meetings within a hospital setting?

Rachael Kelley:

Potentially. I’ve seen that happen, I think it very much depends on the availability and the interest of particular staff in those settings, and obviously acute hospital settings are really pressured and staff are very busy. But I have seen people use reminiscence, perhaps having a stock of old photographs, or old things from work or jobs, or different items that people will have used in past. I haven’t seen too much specifically sports-based stuff, but I’m sure that that would work as well.

Megan Calvert-O’Hare:

Okay, great. And Alys, you said you’ve been working on the EPIC study.

Alys Griffiths:

Yep.

Megan Calvert-O’Hare:

I just wondered if you could tell us a bit about how you have found working.

Alys Griffiths:

Yeah, so we recruited 50 care homes across West Yorkshire, South London and Oxfordshire, which was no mean feat in itself, that was more challenging than we anticipated. And we had just over a thousand people with dementia take part with us, and we still have super secret results for the next couple of months. But in terms of actually doing the research, we recruited people with dementia where possible, a family member and a staff member for every person. So we really got to know as much about that person’s life as we could by having those three points of view.

Alys Griffiths:

I guess what was often quite disappointing was that people didn’t have an eligible friend or relative because they needed to visit at least once every fortnight, which doesn’t sound that often, but we were finding that for quite a lot of people they didn’t even have a visitor once every two weeks.

Megan Calvert-O’Hare:

That must be quite hard to deal with emotionally, I bet.

Alys Griffiths:

Yeah, I think you kind of become resilient to it, don’t you? The first few times you think, “Oh, that’s heartbreaking.” Or when you’ve got people who, if they don’t have capacity to consent, we’re then looking for a relative, and they’ve got no relatives, they’ve got no friends. And you think, “Oh, this person must have been so lonely before they came into the care home.”

Alys Griffiths:

But I think it helps you to see care homes as kind of a place where people do get social support that they wouldn’t get in their own homes. And I think generally people have a really negative view of care homes, but for some people they can then provide them with a whole new set of friends that takes them from a very lonely place to somewhere where they’re surrounded by people who sometimes have similar interests to them, sometimes don’t.

Alys Griffiths:

Yeah, what else to say about EPIC? We collected a lot of data, and we went into each care home three times for about a month at a time. Lots and lots of standardized measures, some observations, and then interviews with staff members and relatives and some residents as well.

Megan Calvert-O’Hare:

So you said you were doing quantitative data on this. What is your background before this to do so?

Alys Griffiths:

I did longitudinal quantitative research looking at predictors of mental health problems in caregivers working in care homes.

Megan Calvert-O’Hare:

Cool.

Alys Griffiths:

So yeah, I do the number stuff in the office.

Megan Calvert-O’Hare:

Nice.

Rachael Kelley:

Just pass it to Alys.

Megan Calvert-O’Hare:

Yeah. Okay, so moving on a bit, how are your findings from your research being put into practice? I know this is quite a big sort of topic at the moment, is how your research can actually help people. How do you think that you’re doing, Rachael?

Rachael Kelley:

That’s something that we’re all really keen on. So I think we’ve all come from backgrounds where we’ve worked in care settings in one form or another before. I used to be a mental health nurse, and so I’m really keen that the research that we do makes a difference, and we all are. Some of the findings from the ethnographic study looking at how much families were involved were really interesting.

Rachael Kelley:

We were able to see that when families were involved it can make a real difference to someone’s care, to how much staff were able to understand the person, to communicate with them, to recognize their needs. Or perhaps when they’re in pain or something wasn’t right, they deteriorated, it was harder for staff who didn’t know the person to spot that, but much easier for family members.

Rachael Kelley:

They were also able to be really involved in decision making, but how much they were involved was really variable. So it was often down to individual members of staff or how supportive the manager on the ward was of involving families. And there were examples of wards where families were queuing outside the door at five to two because they weren’t allowed in until two o’clock, and a bell was rung at four o’clock for them to leave. There were lots of signs up about you can’t come this time, it’s protected mealtimes or it’s cleaning day on a Wednesday, you can’t visit then.

Rachael Kelley:

There were lots of mixed messages about how much families could be involved, even though their involvement was often really beneficial. So I’m in the process of feeding that back at the moment to local hospitals, to lots of staff, doing quite a lot of presentations regionally to hospital managers.

Megan Calvert-O’Hare:

And how have you found the response to what you’re doing? Has it been well received?

Rachael Kelley:

Yeah, I think that you have to make sure you present the positives as well. So there were really good examples of when people really did go the extra mile to involve someone’s family, and you could see the difference that made. I think it’s making sure that you share that, and not just the negative. It’s easy to focus on the things that weren’t so good, but I think that alienates people and that’s not recognizing that actually some people are often trying really hard. And actually working in the acute hospital is very difficult, so I think as long as you do that, I’ve had really quite positive responses.

Rachael Kelley:

People have been really interested in the method Cara uses, ethnography, as well. That’s really interesting in itself, the way that you sit and spend time with people. Because you’re there with people with dementia quite a lot, observing and chatting with them, it gives you a real chance to get their viewpoint and to understand what things are like for them. And I think staff find that really quite interesting, because it’s hard when you’re busying around to stop and sit back and think, “What is it like for someone to be here in this ward, in this setting all day?”

Megan Calvert-O’Hare:

So the benefits of family, obviously you’ve talked about that, but going back to what Alys was saying, quite a few people in care homes don’t necessarily have any family. Is there any way you can use what you’ve learned from family just to say even one person going in a month that’s not necessarily family does have a benefit to a patient with dementia?

Rachael Kelley:

Absolutely. Whether that’s a family member, whether you’re using volunteers to spend time with people. One thing that was really quite stark was how long people spent without anyone to interact with and talk with sometimes, or even if there was someone to talk with, it was just about the care task that was happening at the time and it wasn’t on a social level.

Rachael Kelley:

That doesn’t have to be someone who knows that person really well, it’s somebody who has the time to sit with someone. And equally, sometimes people have spent a long time in a care home or somewhere else, and there are other people that aren’t family who know that person well. So absolutely they can be used as well.

Megan Calvert-O’Hare:

So slightly aside, but kind of linking, your other work that you do is on people with dementia in hospitals and co-morbidity, particularly cancer, so that can obviously throw up a whole other … And then you’re sort of in a way, not stuck in a hospital setting, but that is your setting then, and that may not be as conducive to family visiting as well. What sort of impact does that have on patients?

Rachael Kelley:

You’re right, it depends, some people are much more unwell than others, whether that’s cancer or something else, and so that does definitely play a big part. We’re just starting out on that research at the moment, but already we’re finding just in trying to navigate through where we’re going to do that project and where we’re going to be, that cancer services are so complex.

Rachael Kelley:

Even just as researchers trying to understand all the different places that people might pass through and the different numbers of people they might come into contact with, it’s incredibly confusing, and therefore difficult, not only for people living with dementia, but also for their families, to have to keep explaining if somebody does have dementia, or for the right kind of information to pass from one person to another. And they will say particularly clinical environments, that’s what I think is quite problematic.

Alys Griffiths:

And I think another problem with that is, because this is the first time that we’ve done a cancer and dementia study in a hospital, at what point do you say to people, “We’re doing some research about cancer and dementia and we’d like to talk to you”? Because ideally we want to follow them for as much of the pathway as possible, but if you’ve just had this very big, and probably not very pleasant, piece of information being shared with you, you don’t then want to be told you’ve got cancer and this researcher would like to speak to you.

Alys Griffiths:

So we’re kind of missing out in some ways on some of the first part of people’s experiences, because it can be so traumatic for people to have that diagnosis, and then be needing to be retold by their families many times possibly that they’ve got the diagnosis, and then to have a research team thrown into that as well can be probably a bit overwhelming.

Megan Calvert-O’Hare:

Have you found much, not animosity, but do you ever have any problems with people not really wanting to talk to researchers, wary of researchers, put blocks up to …

Rachael Kelley:

In terms of the ethnographic work I’ve done, and I don’t know whether you’ve found similar, but certainly in hospitals I think families were quite aware that often the persons would spend quite a lot of time without anybody to talk to, or to spend time with, and the person themselves is often aware of that as well. So I was actually expecting some of that, but was quite surprised to find the opposite, that people were generally really quite keen, because they knew it meant that there was someone else there for that person and someone that would know them. So there were actually extra benefits to them of taking part that I hadn’t really anticipated.

Rachael Kelley:

It depends, because sometimes obviously people get bad news along the way, or they take a turn for the worst, and so there might be some times when then someone might decide, quite understandably, that actually they’d prefer not to continue. But even then, I was quite surprised by the amount of people who still wanted to take part, even when someone became really quite unwell. I don’t know whether with EPIC it was slightly different.

Alys Griffiths:

I think one of the main problems we have with quantitative research is people trying to say that my family member doesn’t fit into this box that you’re trying to fit them into. And we’ve had to spend quite a bit of time explaining to people, “We completely understand that, and I know that your relative is an individual, I’ve got to know them and I know that you can’t put them into five tick boxes. But equally, we have over a thousand people, and whilst it would be incredible to be able to tell all those thousand people’s stories individually, that’s not what we’ve been funded to do, and also that’s not how we can create evidence for interventions that do or don’t work.

Alys Griffiths:

So I think that was kind of our main challenge, and we were able to say to people, “We’ve got a process evaluation coming at the end, and we’ll be able to speak to you about your relative in more detail and we’ll be able to really get to learn how you feel their experience has been in the care home.” But generally people can be a bit like, “You want me to tell you whether my relative’s in a bit of pain or in a lot of pain, and I don’t know because it’s different every day and I want to be able to tell you that.” But quantitative measures don’t always allow for that.

Megan Calvert-O’Hare:

Whereas I guess qualitative, you can end up being a bit more like a counselor in effect, I guess. Because you’re listening to people tell their stories and talk to you.

Rachael Kelley:

Yeah, and I think people find that quite therapeutic in itself. And actually, particularly when there’s something like a hospital admission going on, there’s a lot of stress sometimes, there’s a lot going on, and actually having a familiar face and someone who understands where you’re at and what your particular journey has been. I interviewed people more than once, so I followed them right through their hospital stay, so actually I think for a lot of people they found it really quite useful to have somebody there.

Megan Calvert-O’Hare:

And you’re not clinical, are you?

Rachael Kelley:

No, you’re not clinical, you’ve got more time to spend with them. And actually, they tend to then sometimes also ask you, “Well, who should I speak to about this? Do you happen to know?” And often, because of your background, you do know that actually it’d be helpful to speak to whoever.

Alys Griffiths:

I think we’re really privileged as researchers that people want to share their stories with us and they’re willing to, and they just let us into their lives completely. It’s one of the things that is amazing about being a dementia researcher, is families just welcome you completely into their lives.

Rachael Kelley:

But it takes you by surprise sometimes. We were talking about this earlier, weren’t we, that there’s lots of things that come along with that that you maybe don’t expect beforehand, like being asked for advice, and how much advice should you give, when do you direct people on to somebody else? Sometimes you find yourself in situations you just hadn’t anticipated before.

Megan Calvert-O’Hare:

Moving on a little bit to the What Works Study, which I think Cara you’re involved in, maybe you could tell us a little bit about that?

Cara Sass:

Yeah, so I worked as a researcher on the What Works Study from early in 2015 right the way through until we actually finished up the full report for it, which would have been last September. So the What Works Study was a Department of Health funded project, and it had been commissioned by Health Education England with Skills for Health and Skills for Care. They had asked for us to find out what the most effective ingredients were to delivering dementia training and education programs for everyone across the health and social care workforce.

Megan Calvert-O’Hare:

So that would be hospitals and care homes and …

Cara Sass:

It’s all across the board, yeah. So having the skills and the knowledge and the confidence to deliver care to people living with dementia, it’s obviously just as important for somebody who’s working in a care home, somebody who’s working in a hospital on maybe a ward that isn’t a comfortable environment for somebody who has cognitive impairment, all the way through to somebody who’s working in a GP surgery and in community pharmacies as well. So we wanted to make sure that we found out what the specific needs were and the best ways to deliver training in all of those settings.

Cara Sass:

We did a total of 10 case studies in a variety of different settings, so we had three hospitals, three mental health and community hospitals, one GP surgery as well, it was a collection of GP surgeries, and then three care homes as well. We’d done a systematic review of all of the evaluations of dementia training that are out there at the moment, and we from that produced a tool which is called DeTDATs. That stands for Dementia Training Design and Delivery Audit Tool.

Cara Sass:

So that’s a really simple three- or four-page sheet that people who are involved in commissioning and developing training, they can use that to just tick boxes really, to find out whether their dementia training is being delivered and designed in a way that meets current evidence for more effective training.

Megan Calvert-O’Hare:

Okay, so you, the health professional, would you use this to evaluate their own dementia training in a way?

Cara Sass:

Yeah, anything existing, or maybe if they’re thinking of purchasing some training to provide to their staff, it’s a way of looking at, is my training going to fit my staff and fit the needs of the people that we’re providing care for as well? By looking at things like is it being delivered face-to-face, is the group size appropriate, is the mixture of staff appropriate, all those sorts of factors that we’ve found can lead to better or more effective training.

Megan Calvert-O’Hare:

And this output, the DeTDAT … [crosstalk 00:24:35]. Have people taken up, are they using it? Has it been …

Alys Griffiths:

I’m not sure. We launched it a couple of months ago, did we? It’s not been available very long.

Cara Sass:

It’s still in its early stages. We’ve also produced materials that can help for training providers to match their own training along with the Dementia Core Skills Education and Training Framework. That’s a very large compiled list of core competencies that staff should have at whatever level of care and responsibility that they might have as they’re working across the dementia care workforce.

Cara Sass:

There are obviously different levels of awareness and having managerial responsibility as well, so people can look at whether their training is meeting those competencies and if they’re delivering on the right level as well for their staff. So that’s some more materials that we’ve been able to produce. But I can talk through the main findings of the study as well, if you’d like.

Rachael Kelley:

Yes, please.

Megan Calvert-O’Hare:

Actual findings.

Rachael Kelley:

Yeah, actual findings.

Cara Sass:

Obviously we had quite a lot of different sources of information that we use, so when we were in the case studies it was quite in-depth. So we spent time speaking to staff, speaking to managers, speaking to leads of the organizations as well. We did quite a few interviews in the sites. We also observed training where it was taking place, and we handed staff that had received training, they had questionnaires to fill out to find out whether there had been any change in their knowledge and their attitudes towards dementia over time as well. And we spent-

Megan Calvert-O’Hare:

Did you run any of the training yourself?

Cara Sass:

No, we just sat and observed, it was whatever was taking place at the site. So there was a combination of in-house training that maybe dementia leads had put together themselves, and there were some purchased programs as well, and some had kind of done a combination of the two.

Cara Sass:

But yeah, we just wanted to see how it was being delivered as is by the staff, because obviously the facilitators will have had an impact on the effectiveness of the training as well. That was something that we found. And it tended to be more effective when a facilitator was experienced at actually delivering the training, but with somebody that had that skill as a clinician as well, had that understanding of what their staff were having to go through on a daily basis.

Cara Sass:

But we looked at the findings on four different levels, so we used a framework that kind of looks at how staff reacted to the training, what their knowledge was as a result, how it affected their behavior, and then what the resulting impact was for people living with dementia and their family members as well. We found out that staff reacted better when the training was face-to-face and in small groups and had a variety of different media as well, so having video vignettes and things like that was always really interesting.

Megan Calvert-O’Hare:

How long were the training sessions on average?

Cara Sass:

They tend to be around an hour, but some of them can last for maybe a day, maybe more. So that was one thing that I hadn’t mentioned actually, we selected the case study sites based on the evidence that we’d already found for the more effective training components. We were looking at specifically programs that were meeting those criteria, so training that lasted for longer than an hour, and preferably being for a few days. So that kind of helping to really embed that knowledge.

Cara Sass:

And a variety of other factors, we weren’t looking at online-only programs because what we found was that having that self-directed learning and staff that were having to spend time by themselves on a computer wasn’t as effective as face-to-face learning.

Megan Calvert-O’Hare:

Okay, well useful to know.

Alys Griffiths:

That’s what we all know though, isn’t it? If you’ve got mandatory training, you’re like click, click, click, click, cross my fingers, I’ve got eight out of 10 to pass this.

Megan Calvert-O’Hare:

But I think a lot of these things, afterwards you’re like, “Oh yeah, we did already know that,” but to actually hear it and have it distilled in front of you or whatever, or someone say, “Yeah, this is actually a more effective way of learning.”

Rachael Kelley:

And I think to have a tool that then you can use to actually look at the training that you’re either providing already or thinking about providing, to break it down and for you to be able to really sort of pinpoint what it needs to look like to be most effective. It must be really helpful.

Alys Griffiths:

Yeah, I think within the tool, you could look and if you scored zero for something … So one of the things being there needs to be some kind of interaction between the facilitator and the people who are receiving the training, but also in a kind of in-group discussion. There are things that people can adapt their training to include, so it’s not as if if you’ve got a training package and you think, “Oh, it scored zero on that, then-”

Megan Calvert-O’Hare:

They’re nowhere near.

Alys Griffiths:

There are things that you could be like, “Oh, well maybe we could add in 10 minutes of discussion,” and there’s this point within the training where people could actually talk about their experiences rather than just listen to the facilitator talking about their experiences.”

Cara Sass:

Because in an ideal world, a manager is going to want to meet all of those criteria. Being able to actually release staff in reality for an hour sometimes is hard enough, especially if you don’t-

Megan Calvert-O’Hare:

Well, I was surprised when said they were a few days long.

Cara Sass:

Yeah, I mean, we were looking at a combination of training that was for maybe clinicians that were looking to get more advanced qualification. But then if you want to deliver something that is dementia awareness for a very large group of new staff to your organization, you’re not going to have the time to send everybody off for a full day of dementia awareness training when they’ve got all those other mandatory training days that they’re going to have to go on, you have to keep people topped up with those as well. So you’re having to send people on training courses every year. It kind of falls down the priority list as well, so-

Megan Calvert-O’Hare:

But Rachael, was it you that said that one in four people in hospital has dementia?

Rachael Kelley:

Yeah, and on some wards it’s higher than that. That’s part of the point really, isn’t it, is that actually time should be devoted to this because there’s so many people in hospital that have dementia, or maybe have cognitive impairment for other reasons as well that are just as applicable. Delirium is really common in hospitals. So yeah, it’s not that long since nobody would really have had any training in how to look after someone with dementia at all. So it’s important, I think, that there’s a focus on it now.

Cara Sass:

And I think what we found was that getting more people into training rooms tended to rely on having one quite key motivated person quite high up in the organization that could actually make dementia a priority and speak to ward managers and encourage them to find time.

Megan Calvert-O’Hare:

And that must be something that will evolve over time. I mean, you kind of want it to speed up, but as the numbers increase and people become .. Well, as soon as they become personally involved, I imagine that then makes them-

Cara Sass:

Yeah, and it’s about changing the culture. You know, in a hospital building, a person with dementia will encounter not just clinicians and nursing assistants, it’s going to be porters, cleaners, security guards, there’ll be all manner of individuals who have some kind of impact on that person’s day and their experience.

Megan Calvert-O’Hare:

Okay, just very quickly because I think we’re coming to the end of our time, do you have any advice or tips that you would give PhD students who are planning to focus on delivery of care in care homes and involving families?

Alys Griffiths:

Do you want me to start?

Megan Calvert-O’Hare:

Yeah.

Alys Griffiths:

We had a little bit of a chat about this before, and tried to condense our thoughts into a few tips. And one of the main ones we thought was it’s really important to take time to build relationships, whether it’s care homes or hospitals or community settings, making sure that they understand what you’re doing before you go in is so key. On EPIC we had a few care homes where we were kind of struggling to get them to sign the organizational consent form, and on reflection you think, did they really want to take part, or was it kind of that they had someone in the organization going, “Oh you should really be doing research”?

Alys Griffiths:

And so the more you can explain to people about what you’re doing before you go in, the better. But equally, don’t send them massively long emails that cite the most relevant research supporting what you’re putting in place and showing them how excellent you are and that you’ve been cited in the Daily Mail and you appeared on a different website. They want to know what are you doing, how much of my staff time are you going to take, are you going to be in my way, and how long are you going to be here?

Megan Calvert-O’Hare:

Practical level.

Alys Griffiths:

Yeah, practical level.

Rachael Kelley:

I think they want to understand what you’re doing and see why it’s important, don’t they? And how maybe it’s also going to be of use to them.

Megan Calvert-O’Hare:

Yeah. To justify the time, I guess.

Alys Griffiths:

As a care organization or a hospital, what are we getting out of this? Because certainly for larger studies, we take a lot of their time. And while we are sometimes helpful, like Rachael was saying, we end up in all kinds of situations where it’s like, “Oh, that person spilled their drink,” and you have blue rolls thrust at you and you go like, “Yeah, yeah, I’ll do that.” We are often in the way a little bit, even though we try not to be.

Rachael Kelley:

But that’s a good point that we talked about before, about expecting the unexpected perhaps, or just that you often end up becoming quite a part of these settings because you spend so much time there, and so you will get additional things you might get asked to do, or just find yourself doing that you might not expect. And sometimes you end up in situations where maybe you haven’t thought beforehand that this might happen and you’ve got to make a decision there and then about what am I going to do?

Rachael Kelley:

Certainly when I’ve sat in hospitals, and I think you’ve probably found similar, sometimes you’re the only person in a bay and you see somebody who’s really frail trying to get up who’s at risk of falling, for example. Do you sit and watch that happen, or do you go and, if there’s no one else there and you can’t get help quickly enough, do you step in and try and stop that person?

Rachael Kelley:

There are scenarios like that that you might not anticipate happening beforehand. I think that if you’re planning to do research as a PhD student in some of these settings, that you need to go and talk to people who’ve done it already, to get some advice on what kind of things you might come across and how you might handle them.

Megan Calvert-O’Hare:

Yeah. I think that’s good advice to end on. So I’d like to thank you all for coming all the way from Leeds, it’s been lovely, and we hope you will enjoy listening to this podcast recording. Please remember to subscribe to the podcast through SoundCloud and iTunes, and share from social media using the hashtag #ACRdementia. Thank you.

Megan Calvert-O’Hare:

This was a podcast brought to you by Dementia Researcher. Everything you need in one place. Register today at dementiaresearcher.nihr.ac.uk.

END