Podcast – Illness perceptions & service use in dementia

Hosted by Dr Megan O'Hare

Reading Time: 23 minutes

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Join Dr Megan O’Hare on the road at Surrey and Borders Partnership Foundation NHS Trust interviewing R&D Manager and PhD Student Jane Gregg and former guest Dr Josie Jenkinson.

They discuss Jane’s PhD understanding how people perceive themselves and their future once they receive a diagnosis of dementia and how that links with service use in the NHS.

This far reaching discussion gives pause for thought and considers how research embedded within the NHS and healthcare can make a real difference.

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Click here to read a full transcript of this podcast

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

Megan: Hello and welcome to another podcast from dementia researcher. Today I have come to Surrey to see Jane and Josie.

Jane/Josie: Hi/Hello [laughing].

Megan: And we’re going to talk about illness perceptions in dementia from two slightly different perspectives, Jane here is the deputy R and D manager at Surrey and Borders Partnership Foundation NHS Trust and also a part time PhD student. And Josie Jenkinson is a consultant psychiatrist for older people also at Surrey and Borders Partnership Foundation NHS Trust. She joined us a few weeks ago to talk about writing your thesis so you may have heard her little introduction, but I think maybe we could get a bit more of an intro from you and Jane you can introduce yourself.

Josie: Sure, yeah, so I work here, we’re right here in the Abraham Cowley Unit in St Peter’s Hospital today. So, I’m a liaison psychiatrist so I see people over at St Peter’s Hospital, older people with mental health problems and also recently completed a PhD in health services research and which as Megan mentioned I spoke about on the writing up your thesis podcast a few weeks ago.

Megan: Yes, and you enjoyed your viva I believe [laughing].

Josie: Yes, we just had a long chat about, about vivas and I found out that there’s a doing your viva podcast as well…

Megan: Yes, there is so head on over there and listen to that…


Josie: I think people have very varied experiences from what I’m gathering.

Megan: Yes, so Jane you are part the way through a part-time PhD…

Jane: Yes, that’s correct, I’m 4 years into a part time PhD. I work here as well at the Abraham Cowley Unit. I have a job title R and D manager but I’m also what they call a research coordinator as well, so I work on other studies as well. I work on lots of studies not just dementia studies but obviously dementia is my main focus of interest in research most definitely.

Megan: Yeah, I have you found it easy to do both a job and a PhD?

Jane: No! [laughing].

Megan: OK, sure.

Jane: I mean, I’m quite lucky because I used to work full time and then I reduced it to 4 days a week, I did 4 long days but now I’ve gone down to 3 days a week and that has helped because I’m recruiting on my own so I’m having o go and see participants in their own homes and they live all over Surrey so it is quite time consuming but it is difficult, it’s hard but you have to be courageous and just keep going, you know, as long as you’ve got the support – I mean, work have been supportive to me, they have sort of let me reduce my hours which has been good and I can sort of like, access my patients from work so that’s given me a sort of incentive because the people are there, it’s just taking time to see them.

Megan: Yeah, ok. So, when are you hoping to write up?

Jane: Ok, probably around next summer I would think, I’m hoping to get all my data in, my supervisors laugh when I say that, they think I’m deluded [laughing] but ah, I need to get 84 diads for my quantitative research so I’ve got 42, so I’ve got half. So, I’ve got an extension from the NIHR as well, but I don’t want to take that long, so I’m really pushing ahead now to get all my sort of data in by January/February, that’s my plan and then start writing up, analysing the data and start writing up by sort of like May/June time.

Megan: Ok, then you can listen to the podcast and get tips from Josie [laughing]

Jane: Yes, most definitely.

Josie: I’ll give you some tips beforehand don’t worry [laughing]

Megan: What’s the title of your PhD Jane?

Jane: Illness Perceptions among people with early stage dementia and their caregivers and the impact that has on them to seek help.

Josie: I guess that’s what the diad you were referring to was?

Jane: Yes and you sent me a very useful thing, about the swansea datathon and I’m going!

Megan: Is that DPUK?

Jane: Yes, yes it is.

Josie: Sorry, probably not very relevant as it will have been and gone by the time this is released but that’s good, I’m glad it was useful to you.

Megan: Good, so I thought we could talk a little bit around illness perceptions although Josie, you said you don’t necessarily, you don’t obviously specialise in dementia but you are a consultant psychiatrist for older people.

Josie: But you could argue that does mean I specialise in dementia, because it is our core business, so yes I do. But I was just saying that my research project didn’t really include that but from a clinical point of view I certainly deal with this topic every day.

Jane: Yes, definitely.

Megan: So maybe we can kind of just jump straight in and just talk about actually what you mean by illness perceptions.

Jane: Well this is from, I come from a psychological background, I’m a trained psychotherapist, and my background is in psychology so illness perceptions is their health beliefs. It is their beliefs around, once they’ve had a diagnosis of an illness and how they adapt to it once they’ve had the diagnosis. So, it’s looking at their sort of cognitive processes, once they’ve got the diagnosis, and how they get influences from outside: from family, friends or the media, and also the emotional responses is very important as well and how that impacts on them to cope with the disease and then either seek out help or they don’t.

Megan: And is the perception, have you noticed a very different perception between caregiver and patient, is that…yeah? [laughing] That’s big nod!

Jane: Yeah, I think what drove me to do this sort of area as well, I mean I have personal experience of caring for someone with dementia, but also my job has involved seeing people, carers and people with dementia together in like a couple and I’ve noticed a difference between the caregivers perspective and the person with dementia. The person with dementia, the majority of the people that I see are quite accepting of it, they go ‘ok, I;ve got it’ you know, it’s the caregiver that takes the brunt of it you know, they really do, because they can see the future ahead of them and they think how is it going to impact on us later and they get very anxious and worried about. Not so much the person with dementia, that’s what I’ve found, that’s not to say that’s general, but that’s what I’ve found.

Megan: Have you, because you said you’ve recruited 42 people, have you found any gender divide – so is it more male people with dementia and female carers and then the female carers are more anxious, you know, any generalisations?

Jane: Yes, definitely, yes that’s another sort of thing that was brought up, because I’ve done a bit of analysis while I was at university a few weeks ago and just some demographics, and it didn’t show up any sort of like frightening things or out of range in the main group of people were people with Alzheimer’s, that’s the most common form of dementia and the carers are usually women and they are usually over 65 and the men carers – yes, we were talking about that funnily enough the other day, they have a different approach to caring. I think they find it a bit unnatural for them to be a natural carer and I think they feel like if you do approach them about asking for help or they do want help, they think that their loved one might be taken away and put into a nursing home, that is their greatest fear. So they don’t like to, they like to make out they’re coping – I’m coping, I’m the man, I’m the provider. You know, it doesn’t come naturally to them, whereas a woman carer will have a different approach, they are more open to accepting help.

Megan: Ok, and I know Josie, you said you now work with lots of older people, is that similar? Have you found similar things?

Josie: Yeah, I think every situation is unique but something there definitely resonated about male carers fearing their partners being taken into care homes, it is anecdotally something that I have definitely come across a few times. It sounds really interesting, I was just curious about what, are you interviewing these diads then.

Jane: Yep, so it is a semi, I’ve got the IPQR which is the illness perception questionnaire, so it is a semi-structured interview. So I mean the caregiver can fill it out by themselves but I always sit with the person with dementia just to help them go through it, because obviously some things won’t be so clear to them as the caregiver. So I do sit with them and I think they find that quite therapeutic, just talking about it, you know, I ask about their depression, anxiety, do they have hospital anxiety, and EQ5D which is the standard quality of life questionnaire and a general help seeking questionnaire as well, so I ask all of those questions.

Megan: And this is early stage, so very soon after diagnosis, or?

Jane: Yes, yes, very soon after diagnosis because the reason why I’m doing this, and therer is a gap in the literature, a lot of people have looked at illness perceptions once they are showing symptoms of dementia and how it impacts on them to seek help to get a diagnosis but once people have a diagnosis there is not much research out there, and once people have their diagnosis they come back to the post-diagnostic clinic here, two months after their initial diagnosis and then that’s it, they sort of just fall off a cliff, there is nothing after for them, they usually get discharged back to primary care so that’s where the gap is to find out where we can kind of link up some kind of you know, service or intervention between primary care and post-diagnostic services.

Josie: A few things are very difficult now because services have been cut, it didn’t actually used to be the case but now if community mental health teams where they memory clinics tend to be housed, if they are not providing any sort of active input, they have to discharge people..

Jane: Yep, discharge people.

Josie: So, people might get support from dementia navigators, charities, local support systems, which can be quite variable across the country and their GP, but you’re right, they do kind of fall off a bit of a cliff and then they only really come back into specialist services once things have progressed quite a lot…

Jane/Megan: Yep.

Josie: Or if there are additional problems.

Jane: And that’s bit too late really, they need to be there at the early diagnosis because treatments are most effective early on.

Megan: Well, I guess not only treatments but service use in general, you know you can benefit from so much in that window.

Jane: Exactly.

Josie: But I guess the question is, where do you base that support, probably not best housed in secondary care and unless secondary care is resourced much more than it is now so it probably sits in primary care.

Jane: Yeah, primary care.

Josie: One for perhaps integrated care systems.

Jane: Exactly.

Josie: And one of the things we have locally, which is really great is something called Frailty Hub where if you meet criteria, and I think you only have to be mildly frail to meet the criteria, you have access to this hub where you have all sorts of different types of support so physios, OTs, social workers, GPs, dieticians I think and mental health practitioners all under one roof…

Megan: Ok, wow.

Josie: So I think that is the way services are going is to be more integrated so definitely this group of people post-diagnostically where they are maybe just relying on charitable support things like that, could receive more intervention via integrated care systems potentially.

Megan: So you’re obviously meeting people who have a diagnosis and quite early on, you haven’t felt any, we sort of talked about this a few weeks ago with some people in Sussex about whether the diagnosis is a burden or should you even get the diagnosis, especially if you’re talking about how there is a gap in care, there’s a , you fall off a cliff, so you’ve been given a diagnosis, sent off into the wild, that’s it, you’ve not got – stigma is the word that comes up quite a lot, have you felt that, I know you said the caregivers often feel anxious but have you picked up on being worried about the stigma?

Jane: No, not the ones that I’ve seen, but you make a valid point because some people come back and they find it quite shocking to get the diagnosis and they don’t want to accept it but I think gradually, people will get used to it and the idea is I suppose to like you know, encourage people to think you can enjoy good quality of life, even though you’ve got dementia, you can live well, the consensus now is you can live well with dementia in the community and you can make plans whilst you are still able to do so while you’re still active physically and mentally and to live well. So I think, like you said, again, it’s all individual, not everybody is the same. You know, some people find it really useful, some find it quite a shock.

Josie: Coming back to your point baout do you think people should receive the diagnosis, that is a really tricky one for clinicians, and I think quite a popular approach and one that I use is to ask the person themselves, if you did have a diagnosis of dementia is it something that you would want to know, and also think about does the person have capacity to make that decision and then base it on that. And sometimes people really don’t want to know but they are happy for you to speak to their main carer and talk to them about what’s going on.

Megan: Ah, ok.

Josie: Generally, I’ve found in practice, most people do really want to know but there are a group of people that really don’t want to know and I think it is important to check in with people first.

Megan: So they sort of know something’s wrong but are happy to be left undiagnosed because of a stigma do you think it is or is it then they’re worried they’re in a system that they don’t want to be in or again does it come back to eventually feeling like they might be taken out of their own home?

Josie: I’m sure there are lots of different reasons why people wouldn’t want to know the diagnosis because of the fear how things are going to develop and sometimes not knowing can be easier to deal with, I think it is not just dementia but some people don’t want to know if they’ve got a cancer diagnosis for example, other neurodegenerative disorders they wouln’t want to know, it’s unusual, I think most people do want to know, but there are some people that really don’t so I think it is important to check in with them. I guess we would find it quite sad wouldn’t we if we thought the reason people didn’t want to know is because of stigma or thinking that things are worse than they might actually be so I think a little bit of education around the reason why someone’s come to memory clinic, you know, this is where we check to see if people have dementia, if people do, this is the sort of thing that we can help and the reason why knowing is good, so you can impart all of that information before asking the question [laughing], kind of doing a bit of a sales pitch I guess in terms of why it would be really helpful to get the diagnosis in terms of planning and things like that. But if people still don’t want to know then we have to respect that.

Megan: I guess, in a way knowing, you were sort of saying about this window, you know, services disappear or things aren’t there for you, so knowing you have it might not even change how you’re able to access services, you know, you might be worried about that, you might feel like…

Josie: I don’t think it’s quite right to say that services disappear, I think what happens is the services are always there it’s just that people aren’t routinely being reviewed so, and that’s because people don’t necessarily need the specialist input when it comes to the prescribing etc and when resources are so scarce you have to direct them to people who need them the most don’t you, but the services are always there and if the person did need them again then they would get them again, it’s just that they have to reaccess them via their GP, so they don’t just ring up and say I need to see you again, they generally, obviously services are different everywhere but generally you’d have to go back via the primary care route to get more support, particularly now GPs are taking over the prescribing of the memory drugs that we use there’s even less reason for secondary care services to be involved, it tends just to be when things are getting really complicated so there’s a need for that other kind of public health, general supportive element, rather than secondary care which probably does sit in primary care and it is patchy, so there are, I mentioned the dementia navigators earlier, they can be really amazing, admiral nurses in the community.

Jane: There’s not many admiral nurses.

Josie: No, there’s not and it just varies where you live and that’s the sad thing when you know that it does depend a lot on where people live as to what support they’re going to get and you want to really hope that people have got access to the information about what services are available, and that GPs and other people that come into contact with people who have dementia and their carers know what’s out there and able to signpost, sometimes, there is quite a lot out there it’s just that people don’t know…

Jane: Don’t know where to start.

Megan: You said earlier that once you have a diagnosis, here at least, you come back 2 months later, is that common throughout the land?

Jane: I don’t know.

Josie: I think, just from speaking to colleagues, that most places would have a post-diagnostic appointment, it might not be with a doctor, it might be with an allied health professional.

Jane: Yeah, I think they see a research nurse, not a research nurse, a nurse here.

Josie: And it’s a lot of information to take in in one go so I always direct people to the Alzheimer’s Society website because there is so much good stuff on there and they publish something called the dementia guide, it’s so good, I keep copies in our office and we give them out and they are really really good, they cover so many different areas and one appointment is just so much to take in.

Megan: I guess there is often a comparison with cancer but with cancer you’re sort of in the medical system aren’t you because then you have to have an appointment to see this, to see that, then you’ve got to have an appointment to see a surgeon if it’s going that way or this treatment – you’re very much in a medical system.

Josie: Yeah, and hopefully one day we’ll have much better treatments for dementia and you know systems and services are going to have to adapt around that. As an old age psychiatrist, and I’m sure you as a nurse Jane we really hope for that day when we have better treatments for people with dementia, that we can give throughout the course of the illness or even to prevent in the first place, but then when people do get it to treat it and services would have to adapt to that.

Megan: So how is, you’ve got 42 people at the moment and you’re looking for 42 people more …

Jane: [laughing].

Megan: How have you found recruiting? How have you done it?

Jane: There’s loads of people out there, I think sort of on the back of people having these diagnoses, I mean I first came to Surrey and Borders 6 years ago and the diagnostic system for people with dementia was a lot slower, it took them 6 months to go through the system, now it is a lot quicker – a double-edged sword really, people are coming, coming to get the diagnosis, they recognise the symptoms and the system is quite streamlined now, they’ve got it down to a tee but there’s not enough services or support to follow through and on from that. So I mean, we get about 200 referrals a month come through to the memory clinics here, so there are people out there. So we sort of like, have a research database interested in research, they’ve consented for, to be contacted about research so we just trawl through that and find out people with early stage dementia, they have to have a caregiver and then give them a call, you know and that takes the time, send out the information sheet and if they say yes, everybody will say yes.

Megan: I think, quite an interesting point, you’re doing it quite close after diagnosis but also they have to be early stage don’t they, because something I’ve talked about with other people before is different communities, different people come for a diagnosis at different stages but you are looking very specifically at early stage.

Jane: Yes, early stage people because I think they need to be able to have capacity obviously to understand what’s going on and they need to have some sort of insight into what their diagnosis means of them, because I’m asking about their perceptions of their disease so they need to have a certain level of cognitive ability to understand what’s going on.

Megan: And the caregiver, I’ve noted down, it has to be 4 hours a day is that right? So that’s just your…

Jane: Yes, I mean that kind of tallies in with a lot of research studies, that is sort of a standard measure of what you would class as an informal caregiver, not a paid giver. An informal caregiver, which is usually friends or family and that’s the minimum amount, people obviously spend a lot more than that.

Megan: So sort of at the other end of the whole thing we were talking before about your PhD project Josie and that was, maybe you could introduce it a little bit?

Josie: Yeah, sure, so I looked at probably the most complex, most unwell, most chronically unwell group of older people that you can think of – so these are people who meet NHS continuing care criteria, so that is where the NHS funds all of your care and who are not able to be treated in the community setting and that service underwent huge changes over a four to five year period whereby we had 5 long stay units that were gradually closed down and I stopped data collection when they had two units but since then they’ve closed down one of the units so there is only one unit left and they replaced the service with a community support team so, I think it was called the CHIT – Care Home Intervention Team. So we had people who were in long-stay units who were discharged to community and had community-based follow up. And these were people who mainly had a mixture of cognitive impairments and severe mental illness so for example they might have bipolar disorder and Alzheimer’s Disease as well with lots of behavioral symptoms and complex physical health needs as well so really complicated people requiring a lot of input and support. And the study looked at the outcomes for a group of patients who were resident in these units at the beginning of the study and how things changed when they were transferred either in between units where they have to do a lot of decanting, as they call it as units closed they have to move people around a lot…

Megan: They call it decanting?

Josie: I know, it is such a weird word, isn’t it? It’s horrible, people talk about decanting a unit or decanting a ward, very odd term.

Megan: They’ve really sort of taken the human out of that haven’t they…

Josie: Yeah, I know, I’ve heard it in loads of contexts, yeah, whenever you temporarily close somewhere or you’re doing any sort of renovation or building work you talk about a decanting, it’s very odd. Anyway, so yes there was a lot of decanting. So transferring people in and out of units and also discharging people from this system into care homes with this support because one of the reasons why everything changed was because previously when people had NHS continuing care and went into one of these units, they were seen as a home for life, so the person would just be there until the end of their days and they wouldn’t be moved again but things change with pressures on money available and resources so the need for continuing care would be revisited regularly. So, previously you got the continuing care for life and that was it and then things changed over the last decade so you needed an annual review for your entitlement to NHS continuing care and the thing…

Megan: An annual review? Wow.

Josie: Yep, annual review. So the thing was a lot of those people didn’t actually need that level of care anymore, so they did when they first entered the system but a lot of them had been there for many, many, many years – I mean, one of them had been there for 13 years and things had actually progressed and they were doing quite well and actually probably didn’t need that setting any more so there were a lot of people that could be discharged.

Megan: Ok, so an annual review makes sense from that point of view – I was thinking annual review sounds more disruptive than beneficial. Did you find that? Or were people happy to have an annual review?

Josie: I didn’t really look at that aspect of things. It was happening so the reviews were happening, the units were closing so there were financial drivers and also some concerns that some of these long-stay units weren’t really offering the best possible quality of care and that the whole system needed to be looked at and the vision was to have one or two very good units. We have a model where the goal was always to get people out of hospital, they might need to be there for a prolonged stay but the aim was to get back into the community setting rather than a home for life model. So it is a completely different ethos isn’t it. And that was the vision. But what I really wanted to find out was what happened to this group of people in the system as the system changed and also what was the effect on the cost of care for people because one theory might be so ok you discharge all these people into the community but how will they do and actually do they just use lots of other resources, do they get readmitted to psychiatric hospitals, do they need a lot of GP time, do they need a lot of community nurse time, community psychiatrist time, is it actually cost-effective to do that sort of thing.

Megan: Ok…

Josie: It is a lot cheaper to keep people in the community.

Megan: Ok, that was the upshot was it? Did, because we talked just before we started recording this about there wasn’t much overlap between your research because you’re very late stage and Jane, you’re very early stage but sort of around the theme of illness perception, do you think there was a perception change from people when they’re told you have a home for life so you kind of go, ok I have this, I stay here to I’m being discharged to the community, maybe there is a perception change on their own illness. Was it a self-fulfilling prophecy in a good way?

Josie: I have to say generally these people were so unwell that they had little insight into it, their dementia was so advanced and their mental health problems were so severe that they had little understanding, it wasn’t something I was researching but obviously I spent a lot of time with these people, they didn’t have much awareness around what was happening other than the fact that they were being moved. The people who it did really affect were their friends and families, who were often very upset about this, obviously, understandable you would be if you thought your relative was happy and safe somewhere and then all of a sudden moving so there were quite a few stories in the local press actually, relatives writing to local MPs and protesting about closures of units so it was something that relatives and friends found particularly difficult to deal with – it was also very politically sensitive issue.

Megan: I wonder if you do a follow up whether, because obviously at the time it feels big change, that’s, you know, unwelcome often, or makes you uncomfortable but in 5 years time you might recognise the benefits of that change whether as well as a cost benefit there might be a social benefit so in 5 years time you should follow up on – not you personally [laughing] – but there should be a follow up to see if that actually helped?

Josie: And also, one of the theories is that really people would do much better in the community setting because it is less restrictive, you’ve got more access to open spaces to activities, really it should provide a much better care environment and afford a much better quality of life. We weren’t able to show that with the results of my study but it was quite a small group. Intuitively it makes sense that it’s nicer, more free care environment and perhaps you would hope that carers might see that, friends and family might see that as well, I think change is difficult for anybody and particularly when somebody’s been in the same care setting for a really long period of time, it is really hard for people to deal with. When you close units or renew, when you strip back secondary care, it’s so important that there is something else. You have to live in the real world, there isn’t infinite money or resources so you need to direct the resources to who needs them the most but it is so important to think about people who perhaps need less resources but make sure that there is something there for them to replace he services that have been cut but that goes across all of the health services.

Jane: Exactly.

Megan: Well, that’s been great, thank you, I’ve really enjoyed discussing this, I hope you’ve had a nice time [laughing]. Great, and thank you!

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