Podcast – Quality of Life After a Dementia Diagnosis

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 and welcome to another dementia researcher podcast, for this recording we have taken to the road to come and record on site at the University of Sussex campus down near Brighton so I am hoping for a background squawk of a seagull to add authenticity and stereotype to this recording. I am joined by Ben Hicks Research Fellow and programme lead on DeterMIND, and Laura Hughes, Research Fellow both at the centre for dementia studies, hello and welcome to you both

Ben / Dr Laura Hughes:

Hello

Megan Calvert-O’Hare:

We’re going to be discussing broadly the theme of inequalities in dementia care and quality of life and specifically touching on the DeterMIND program. Evidence has emerged of major inequalities in care for dementia, driven by factors including ethnicity, whether your care is self-funded or paid for by local authorities and whether you are diagnosed earlier or later. Determind, which stands for the determinants of quality of life care and costs and consequences in inequalities in people with dementia and their carers – I can see why they made it shorter [laughing] – is designed to address critical, fundamental and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and therefore the quality of life. So as I said welcome to you both, let’s start with a quick round table; introduce who you are, who funds you, people always like to know that and how you got into this field, shall we start with you Ben?

Dr Ben Hicks:

Yep, sure so hi my name is Dr Ben Hicks, I am a research fellow at the centre for dementia studies, and I am the programme leader for DeterMIND. I’m funded by, well the post for this is funded by Economic Social Research Council and the National Institute for Health Research, it’s a joint funded programme. My background has been, I did my undergraduate in psychology and then specialised in health fields working with cancer and mental health conditions and as I grew within that field I started to become interested in the way that the environment, the kind of demographics of people can influence their experiences living with chronic conditions and then at this time just had my personal experience with a family member who had dementia, and that, that generated some interest within this field. And my PhD then moved into dementia care and then as, and then has moved on since then.

Megan Calvert-O’Hare:

So is this your first research position since qualifying from your PhD?

Dr Ben Hicks:

No, so I was working prior to joining here I was working in Bournemouth University as a psychology lecturer and then moved, and was working as the researcher within the aging and dementia institute centre there for about 3 years I think in total and then moved here, I’ve always lived in Brighton and Sussex and did the commute and then…

Megan Calvert-O’Hare:

You commuted to Bournemouth?

Dr Ben Hicks:

Yep, that was fun…[laughing]

Megan Calvert-O’Hare:

Wow…I was going to say, you must really like seagulls [laughing] doing Bournemouth and Brighton

Dr Ben Hicks:

Yes, well, I probably shouldn’t admit this but I, I didn’t actually know where Bournemouth was, I knew it was on the south coast [laughing] so when I applied for it first I thought ‘oh well that’s fine, it’s on the south coast, I live on the south coast’ and it was only when I got the job interview that it, I realised it took you three hours to get down there on the train [laughing]…

Megan Calvert-O’Hare:

Oh my god…

Dr Ben Hicks:

[laughing] So that was a learning experience, but now it’s great to have a 15 minute commute just up the road

Megan Calvert-O’Hare:

Nice, yeah, going across country I think is worse on the train than going up and down they say…

Dr Ben Hicks:

Absolutely, yeah…

Megan Calvert-O’Hare:

So, anyway, hi Laura

Dr Laura Hughes:

Hi, yes, I am Laura Hughes, I am also research fellow at the Centre for Dementia Studies and I am funded through the Centre for Dementia Studies at the moment until I get some further external funding. So my background is many, many years ago I actually worked in the care sector up in Scotland for about 8 years, I worked in care homes which sparked my interest in going back to university and getting an education, so I went and did my psychology undergraduate and then went on to do my masters and with most people then ended up doing my PhD down in Brighton and I knew how far Brighton was from Edinburgh…

[laughing]

Dr Ben Hicks:

Well done!

Dr Laura Hughes:

So yeah, I flew down here and got accepted on to the PhD and I finished that 2 years ago no I think that was, so this is my first position since my PhD finished and all of my research in dementia has focused on care homes and quality of life and that’s from my, obviously, from my occupational background. And that’s what I’m going to continue to do hopefully for the foreseeable future.

Megan Calvert-O’Hare:

Nice. Well, welcome to you both, again. So, I think maybe we can talk a bit about the DeterMIND study, because I know you’re the programme lead for that, it’s got many workstreams, 7 I’ve got noted down here, but they’re not all taking place here in Brighton, are they?

Dr Ben Hicks:

No, so it’s, it’s a, as I mentioned it’s a 5 year project funded by the ESRC and the NIHR, so we’re leading it at the Brighton and Sussex Medical School with collaborators from Sussex University, psychology department, King’s College London, London School of Economics, Newcastle University, York University as well as trust sites from Sussex Partnership, South London and Maudsley and then the Gateshead Foundation Trust as well. So yeah, it is a seven, there are seven workstreams associated with the programme, the first one kind of feeds into the other six really so the first work stream is around, involves us recruiting over the next year, 900 people who have been diagnosed with dementia within the past 6 months.

Megan Calvert-O’Hare:

So is that key? Why the first 6 months after diagnosis?

Dr Ben Hicks:

Yeah, that’s key, so that was one of the novel elements of the project and why it was, why it received the funding, it was this, so there are cohort studies at the moment looking at following people but they don’t tend to focus on this kind of key period post diagnosis, immediately post diagnosis when lots of things are going on for people there, they’ve just been diagnosed, they’re just coming to terms it, it may have had a process up to that for the point of diagnosis or deciding whether to get diagnosed. So that was one of the key things the funders really liked about the study, the fact that it was getting people right at the very start of their dementia care pathway and then to the project itself then follows them for the next three years, over that time, so we will at the point of consent we will visit them and talk to them around aspects such as their quality of life, sense of psychology well-being as well as trying to understand services that they may have accessed, and any medications and things like that that they may have, and then following that we will visit them annually for the next three years to again repeat the measures to understand how their journey over the past year has gone and how it may have changed.

Megan Calvert-O’Hare:

Ok so you’re going to visit annually, why, why was annually chosen? Not 6 months?

Dr Ben Hicks:

I think partly that was down to funding and funding resources, as well as to reduce some of the burden on the participants, obviously we’re not paying them to be involved in the study but we are very interested in hearing their experiences so, so, so trying to ameliorate some of the burden that is that is put on them was, was quite key to this as well.

Megan Calvert-O’Hare:

And this, because obviously Laura you work with, with care home research, are you specific about people and their diagnosis, can they be in care homes, or will they tend to be residential?

Dr Ben Hicks:

Yeah, I mean the brilliant thing about this study, yeah, the brilliant thing about this study is that is that it is completely inclusive, so we are recruiting people with any, with any clinical diagnosis of any dementia, from any environment or social, so people can live within the community care home, assisted living facilities, and with any dementia as well. The only key thing is that, that they have a clinical diagnosis, it’s not mild cognitive impairment or subjective memory complaints, so they’ve had the diagnosis and it is within this six-month period as well.

Megan Calvert-O’Hare:

And you’re involving the carers, if they have them…

Dr Ben Hicks:

Yeah, so the primary participant will be, will be the person with dementia, if carers, so these could be informal carers, such as family members, unpaid carers, or paid carers if, if they want to be involved in the research, then we are taking them on as well and again it will run in a very similar way, so a researcher will interview them, probably at the same time as the person with dementia, and then again follow them up annually each year for three years.

Megan Calvert-O’Hare:

Ok, actually that’s quite interesting you said paid carers, because I’ve talked to quite a lot of people about social care research and involving carers and I’d never really thought about how they might have paid carers, do you ,have you had experience involving them in research, are they happy to be involved, do they tend to step back?

Dr Ben Hicks:

I’ve, yeah I’ve never had, yeah I’ve never had an experience really with paid carers, well I’ve worked with care home staff, so I suppose paid carers within the community setting, so if people are employing within their homes, I haven’t come across that, I’ve worked and interviewed care staff before. And I’m sure Laura can talk more about this within the care home staff, but certainly my thing is trying to get the time, the care home staff having the time, to sit and listen to you and talk to you as being a massive issue, as well as responding to emails and things like that. But in terms of, in terms of paid carers for us in the community, we’ll see whether people engage with paid staff, yeah.

Dr Laura Hughes:

What you normally find is people want to take part in research and particularly in research to do with dementia. I’ve worked, as Ben said, I’ve worked with care homes and rarely had people say they don’t want to take part, because they just, they just know it is a good thing to do. I’ve not really, not really had any problems with community paid carers either, but certainly with care staff in care homes. Like you said trying to find the time can be difficult but there is a general sense that people want to take part because it is a good thing to do.

Megan Calvert-O’Hare:

Yeah. Okay, so, some of the outcomes or what you’re looking at is service use, costs and outcomes including quality of life, so could you talk through that a bit more maybe…

Dr Ben Hicks:

Yeah so I suppose the key aim of the project is to understand what good quality of life should be like for people with dementia, living with the condition post-diagnosis. And, yeah to understand what it should be like and to also try and map where people’s journeys may deviate away from this point of good or excellent quality of life. So…

Megan Calvert-O’Hare:

Is that also like coordinating, not coordinating, oh my god! But sort of tracking how they are in the, in the system as well, so if they deviate from the system, does their quality of life go down…

Dr Ben Hicks:

Exactly, so yeah, so we’re looking at what services they are going to access, if they don’t access certain services, why that might be. So it may be that they live in a rural area, so they are not physically there for them to access or they no longer have their driving license and don’t have public transport that enables them to access these services or is it something about the service that isn’t accessible for people from certain populations or demographic backgrounds and things like that.

So I previously worked with older men with dementia in rural areas and a lot of them didn’t want to access the services even though they were available for this kind of fear of openly admitting vulnerability and the threat that this might have on their sense of masculinity. So in a way to try and uphold this masculinity they would not access the services because they wouldn’t have to admit this vulnerability until a point, when it became crisis and then they had to. So it was around, and then other men talked about accessing these services and being, felt like they were infantilised and being treated like a child and, and they just weren’t understanding them as the men, so they then came away from it and never accessed them again, so it was these kind of inherent things.

Megan Calvert-O’Hare:

Was that, did you find that was the same even if they had a female carer, if they had a wife, say, or…

Dr Ben Hicks:

Yeah so, so yeah, absolutely, so I mean the only difference was some of them would rely on their wives to drive them to these services and things like that so actually they had some of the transport issues there, so men on their own were particularly vulnerable and at risk of this social isolation and not being picked up by the system and what the reason, so this was my PhD, so the reason that got funded was, was, because AgeUK Dorchester were really struggling to access these rural-dwelling older men and wanted to understand how they could do that better I suppose, yeah.

Megan Calvert-O’Hare:

Okay, so Laura, shall we switch over to you, because you’re not actually working on Deter, DeterMIND, Determined, which will make sense when you see how it is spelt! [laughing] But maybe you could talk a bit about your project right now.

Dr Laura Hughes:

Certainly, so for my PhD I used my background from my care work. I wanted to look at how you could measure quality of life in care homes.

So currently in the UK, quality of life in care homes is not measured. It is only measured as part of research projects, I am not denying that at all, there’s lots and lots of really good research out there that tells us, what makes good quality of life in care homes and what affects quality of life, what we don’t have is a systematic measurement. So care staff in homes will document lots of different aspects of residents lives such as their well-being, their physical health, the medications that they are on, the activities that they take part in, all these different things but they don’t have a systematic way of looking at quality of life. So that’s what I wanted to introduce.

I have adapted a quality of life questionnaire that was already existing so that it can be used by care staff. So it is giving care staff the power to measure their residents quality of life.

There are lots of discussions to be had surrounding should we ask the residents themselves to rate their own quality of life. However, with the high prevalence of dementia in care homes, it is not something that can be done consistently over time. So we, we’ve opted for the proxy approach to measuring quality of life. It’s giving staff that power to measure the residents quality of life, to understand what it is that they experience and what we’re hoping to do, in future research is to show that with the staff doing this, measuring the, their residents quality of life it could have an impact on the care that they give. Because it could help them to see the residents as more as individuals and to enhance the person-centred care that they provide. Asking them to think about some of the smaller details of the residents, lives and care. So that’s the kind of stuff that we’re, that we’ve done; and what we’re planning to do is to create an intervention at some point soon. We’ve submitted for funding, and we are just waiting to hear back. So we’re going to create an intervention, use this in care homes more effectively so that care staff can not only measure quality of life but use that to make informed changes to residents’ care. So that’s coming up in the future.

Megan Calvert-O’Hare:

How have you found approaching care homes about doing something like this, it feels like it’s quite an OFSTED-y type thing, or could end up being that you know, if it comes back and says everyone’s got a really low quality of life they’re not going to want…

Dr Laura Hughes:

I did some qualitative and some quantitative work with care homes throughout my PhD and the staff, although they want the residents to have a good quality of life they understand that not everybody will. They also feel, in a way, personally responsible for the residents quality of life. If somebody did have low quality of life, they would feel bad, but would then try and work to improve it. So, there’s that potential risk that they’ll think that they’re being observed and judged on the residents’ quality of life. It’s more about giving them the, the tools and the opportunity to help to improve it.

So the, I mean the staff were really keen to measure quality of life, they could see the positives out of it, they could also see the negatives. The negatives in terms of trying to fit this into their time as Ben was saying earlier, you know, time in care homes is really constrained but yeah, they’re really positive about doing it. In practice they could actually do monthly measurements of residents quality of life so and the instrument that we’re using, which is called the DemQuoL take them about 5 to 10 minutes to do and one staff member could measure maybe 5-10 residents in a month’s period.

So it’s not too strenuous. Once we create an intervention and develop that around that measurement as well, it might be a little bit more time-intensive. But that’s going to be created with the involvement of care staff. We expect care staff, families, residents, commissioners, everybody that’s basically involved in care to be involved.

But in terms of taking part in the research that I’ve done and the stuff that I’ve proposed to them, yeah, they’re really keen, they’re really up for taking part in research because they want to make improvements. They want to be involved in that process as well. Very often as researchers, we go in, we do research for care homes, we say, ‘right, this is what we’ve done’, we take our findings and we leave. Write a paper, publish it and the care homes are left going ‘well what about us’, what shall we do with this information. So it’s about having them involved in that process and giving them something back once they’ve taken part.

Megan Calvert-O’Hare:

And this is what your prospective grant is about, it’s more about implementing it…

Dr Laura Hughes:

Yep, yep, implementing it, so creating the, the intervention, which involves use of that quality of life questionnaire, creating the intervention and testing it and refining it and making sure it works for the staff and for the residents, not just for me as a researcher [laughing]

Megan Calvert-O’Hare:

And how many care homes are hoping to…

Dr Laura Hughes:

We are hoping to get around about 20 involved in the evaluation, so we’ll do a randomised controlled trial, a pilot randomised controlled trial, sorry, at first to then see if we can do a large trial later on but in terms of developing the intervention, I’m going to hold some workshops, which will involve care staff and residents and commissioners and anybody from the CQC who would like to be involved as well. I would like to get them involved [laughing] and taking part. And that’s going to be about six workshops with around around about 6-8 people in each one, creating the interventions, getting all of the relevant and important people involved and then using as many care homes as we can manage in the time period to take part in the research.

Megan Calvert-O’Hare:

And are you going to have a mix of, because obviously a lot of care homes are privatised, so you’ve got a different mix of…

Dr Laura Hughes:

Yeah I mean most care homes are actually private nowadays, there are some local authority ones as well, very few NHS-run homes as well, so the majority of the ones in England, certainly are private. But then within that, you’ve got large homes, small homes, you’ve got ones that provide nursing, ones that provide just residential care, so we’re going to try and get a, get a good mix of homes. And ideally as well, we want to involve homes that are all performing at different levels based on their CQC inspection reports as well but obviously being mindful of homes that are maybe struggling that you don’t want to put any extra burden on them, so…

Megan Calvert-O’Hare:

Sorry, what report was that?

Dr Laura Hughes:

The CQC reports

Megan Calvert-O’Hare:

So what is that?

Dr Laura Hughes:

The Care Quality Commission; they’re the independent regulators for care…

Megan Calvert-O’Hare:

Ah ok, but that’s not quality of life, that’s just overall quality of care…

Dr Laura Hughes:

Yep, overall, yes quality of the care home and that looks at, that looks at, it looks at the quality of care, it looks at the management and things like that within the home and whether it is well-led and responsive but you don’t want to go into a home and do intensive research in a home that’s maybe struggling to provide adequate care because you don’t want to add to that burden then take away care from residents. So it’s trying to balance out the kind of homes that you go to.

Megan Calvert-O’Hare:

Ok, so you said, majority in England are private, is it actually different in Scotland, being someone who used to work in care homes in Scotland [laughing]

Dr Laura Hughes:

Yeah, I mean, the care systems are very similar with some slight differences between England, Scotland, Wales and Northern Ireland, I think it’s consistent across the UK that the majority of them are privately run. So private, that could be, so I’m saying private in the sense of, it could be a sort of family, individually-run homes, they could be private organisations, or charity organisations. But I think the majority of them are across the entire country. I just said England because that’s where my research is going to take place.

Megan Calvert-O’Hare:

Yeah, fair enough. So obviously the experiences of living with dementia can be very different for different populations and also quality of care like, how I would like to be cared for will be different for how you would like to be cared for and, so yeah, you’ve experienced that going into care homes?

Dr Laura Hughes:

Yeah I mean, every, every single person is individual and some people will experience things differently or take from their experience something different, so you could have whatever care process, processes you have in place in a home could negatively affect one resident while not affecting the other, such as, the different activities that are in the home, somebody might find that too stressing to take part in. Or the approach of staff. I mean I’ve even experienced that in my own personal caring when I worked as a carer, some people liked to be addressed a bit more formally as you know, Mrs Smith or Mr Smith, whereas other people, you know, what you to use a nickname for them, so everybody’s individual and you have to treat everybody as an individual, there is no one answer for everybody, and everybody’s to be affected by things very, very differently.

Megan Calvert-O’Hare:

Has that been your experience too?

Dr Ben Hicks:

Yeah, I think that’s certainly, well definitely the case within the communities as well, people often – certainly within policy practice and research – people with dementia can be seen as this quite homogenised population and viewed through that lens of what works for one person with dementia is probably going to work for the other. What quality of life means for one person with dementia is probably going to be the same for everybody with dementia. And what we know is if you’ve met one person with dementia, you’ve met one person with dementia. So what people require and the support they require differ between people. So there’s been very very small bits of research out there but it’s, but it’s demonstrated that people who have occupied quite privileged positions within society, for instance white men, when affected or labelled with or diagnosed with dementia can see this is, as an absolutely devastating position that knocks them from their privileged position and status and they require a lot of support to come to terms with it and to manage and fulfil their sense of quality of life. And we know that people from lower privileged positions within society, so black, working class, or women, so when they are labelled or diagnosed with dementia, actually you know it is just another bit of stigma/discrimination that they’ve had to deal with their whole lives and they’ve just got to deal with it again and they’ve got those resources to deal with that already, maybe they don’t need to draw on that much support from other people because they are used to it…

Megan Calvert-O’Hare:

When you say resources, you mean resilience, but I imagine a community…

Dr Ben Hicks:

Also, they have a community as well that can understand them as well, yeah, so they can draw on this sort of support as well, so it’s not seen as in anyway as kind of devastating as it might be for somebody who’s not used to having to deal with discrimination in their daily lives…

Megan Calvert-O’Hare:

And…

Dr Ben Hicks:

Sorry I was just going to say, I think that is something DeterMIND will pick up because we are looking for a diverse sample, and within, and within the project as well we’re specifically, we’re trying to oversample LGBTQ backgrounds, from Afro-Caribbean backgrounds, white working class backgrounds to try to unpick and tease out the differences in the services that people require and their kind of outlook of what quality of life is.

Megan Calvert-O’Hare:

That’s what I was going to ask, was, are you going to stratify, or you know, or how you were going to sample your population. I just wondered how are you going to recruit them because recruitment is always the issue [laughing] and you were talking about underrepresented populations…

Dr Ben Hicks:

Have you got any advice [laughing]

Megan Calvert-O’Hare:

Anyone listening? [laughing] Any advice for Ben?

Dr Ben Hicks:

We are targeting primarily memory assessment services at the moment to, I’m spending a lot of my life sitting in memory clinics and speaking to people, either having just received a diagnosis or after a month when they come back to be assessed or something like that, so I’m speaking to people there like that. Each of the trust sites also has their own recruitment tools, they have a database of people that we can access, you can consent into being approached about research so there’s quite a substantial database there, certainly in Sussex, in London have a very similar database and we’re recruiting from there and the Newcastle site are already linked in with a memory service and getting a lot from there and tools such as the Join Dementia Research site has been very good as well at identifying people across England who can picked up by our three sites and we are bombarding GPs surgeries [laughing], and health practices with flyers and leaflets.

Megan Calvert-O’Hare:

Something that I have come across is actually getting the GP surgeries to write letters if you are somehow, I don’t know about the ethics of that, whether your study is linked to a clinician who could do that?

Dr Ben Hicks:

So we are, we are looking at setting up some GP surgeries if they want to participant identification centres so they will go through their database contacts and write letters talking about our study. I mean, they haven’t got a huge amount of time to be able to do that, so we’re finding that we can, we’ve identified a couple of GPs within each place who are behind the research and would like to be more involved so to kind of, using them as a resource and again just sitting in on clinics and things to ease some of that burden on the memory assessment services so we just talk about the project and we’re just asking the memory clinicians to direct them towards our room as they’re leaving.

Megan Calvert-O’Hare:

Have you found, I don’t know have you started recruiting yet?

Dr Ben Hicks:

We have started recruiting yes, we have started in the Sussex site at the moment, Newcastle and London are starting this month, oh tomorrow [laughing]

Megan Calvert-O’Hare:

We’re recording on the 30th September everyone [laughing]

Dr Ben Hicks:

So they start tomorrow. So we’ve been going just over a month and we’ve got about 20. So it’s, it’s tough, we need 25 a month per site so we’re, just over 25, so we’re looking at, what about 7 a week that we need to be interviewing, so it is tough, we’re slightly behind at the moment but I think the last kind of month and a half has been setting up these processes and we’ve learnt a lot about just yeah setting up the processes of trying to get people in and so we’re not just relying on just one avenue of recruitment.

Megan Calvert-O’Hare:

I just wondered with the different populations you’ve talked about who are underrepresented so you are going to try and over represent them, will they come in at a later stage of their diagnosis so you say 6 months from a diagnosis but obviously that depends on when you have sought help so you could be in quite advanced stages of dementia, that doesn’t affect your study, you’re not looking at…

Dr Ben Hicks:

Not at all, in fact that would be really useful for something like work stream 6, I mean work stream 6 we are looking at early versus late diagnosis and this relation to quality of life outcomes so within this we are taking proxy measurements, so within the questionnaires we give we are looking at giving standardised mini-mental state examinations, we will pick up people’s cognition scores so obviously some people may have felt comfortable, may have noticed symptoms to do with cognition, language difficulties, something like that, navigational difficulties and sought out help and got a diagnosis at the very early stages of the condition. Other people may for some reasons have come later to it, and so the the fear of being stigmatised or not actually understanding, not actually wanting to know about this as well, we know that can put people off, receiving a diagnosis, particularly rural communities where it is quite an interconnected community and if you’re suddenly then labelled with dementia people can be quite fearful of being excluded from…

Megan Calvert-O’Hare:

Yeah, well this is what I meant, something that the Government agenda, I’ve got written down ‘emphasises the need for early diagnosis’, because then you’re in the system but then are you disadvantaging people, I mean, you know, there are definitely different populations that you’ve talked about that won’t want an early diagnosis and want to run as long as they can without the diagnosis..

Dr Ben Hicks:

Yeah I think that’s a really interesting question and something that there is no other dataset set up to answer at the moment so that is one thing that DeterMIND will address or try and seek to address, along with the main study and the, the qualitative work that accompanies it, but yeah, exactly there is an assumption that receiving an early or timely diagnosis is beneficial for people because there on a system, they can access services and that should then in theory improve their quality of life but of course people then might become stigmatised, they may internalised some of what they might read about in the media and the press, and then almost isolate themselves or be forced to isolate themselves because their friends reject them through fear of the condition, if I touch you, do I catch dementia, this kind of thing, so they actually become socially isolated and we know that social isolation can lead to much quicker health deterioration…

Megan Calvert-O’Hare:

I saw an article on the BBC about ‘should I still work – I’ve got dementia’, and you know, if you feel able to work you’d hide your diagnosis, or you wouldn’t want one because you’d fear you’d lose your job, you know there are different people, it’s not the same for everyone as we’ve discussed a lot today so you could still work.

Dr Ben Hicks:

And I think a lot of that is around other work we’re doing at the centre for dementia studies and much further afield in terms of raising the dementia awareness agenda, and educating the professionals coming through, educating society, the younger people in society about dementia awareness, yeah, and making people feel more comfortable ‘outing’ themselves as living with the condition and then gaining that respect from the community and being in a position still, not as somebody who is vulnerable and needs care but as somebody who is a social citizen, and can contribute to society, can continue to do everything they used to do, which are all important aspects of quality of life.

Megan Calvert-O’Hare:

Well I wonder, because once you’re in a care home, I mean this is probably my naive understanding [laughing], you’re in a care home, is there a sense, you know that you’re not contributing to society anymore and obviously that will impact our quality of life. Do the care homes, I don’t know, run systems where you can go out and…

Dr Laura Hughes:

Every care home is different, there’s lots of variability within care homes in the country but there are less opportunities for people who live in care homes in terms of being able to do a lot of things themselves, and that can simply be not being able to cook for themselves and a lot of care homes will have kitchens where they employ a chef or cook to do the cooking so the residents can’t do these things for themselves. Most care homes I’ve had experience of, unless a lot of the residents have more severe dementia or impairments, functional impairments, most homes do have some provisions for residents to go out by themselves or at least to go out with care staff if they have family members obviously they get taken out by family members, but it’s, yeah, having access to society can be quite hard if you’re in a care home and the other thing I want to look at in the future actually is how care homes involve the community. You know to sort of…

Megan Calvert-O’Hare:

The other way…

Dr Laura Hughes:

Yeah, to bring them into the care home to show them what homes are actually like, and I’ve started to work with a couple of homes in Brighton who have done that, they hold tea mornings and they have dances in the evenings and there’s lots of people invited and they invite young people as well who are maybe at college, 16 years old, 15 year old, and they invite them in and show them, you know, this is what a care home is, this is what it’s like.

Megan Calvert-O’Hare:

I mean I’ve never been to a care home which is why I asked that naive question, and I feel like I’m probably in the majority having not been to one. So something like that that actually shows the general population that they’re not a scary place…

Dr Laura Hughes:

Yeah they’re not, to be honest, I might be a bit biased obviously because I used to work in them [laughing] but I love going into care homes, I think they’re great and I think that, yeah, people need to understand that there’s a very negative view of homes in the media and it’s, similar to dementia in general, it’s normally very negative, you know ‘people suffer from dementia’ is normally the headline, and the headlines you only ever hear about care homes is you know there was abuse in a care home, this care home did this, they did that and yes bad care does happen, but bad care happens in a very few of them, you know really bad abusive care, the majority of homes can be absolutely fantastic you know, you’ve got people who move into homes and they get socialisation, you know, they get to live around people, they have people you know, taking care of them, or to assist them to take care of themselves and I think that’s a fantastic thing to do, and I think the public needs to know more about care homes and about the good that they can actually do. They struggle but they struggle within the system that they’re situated within so I think, yeah, go find a care home, go into it [laughing]. They can be great fun honestly, they can be fantastic. Listening o the residents, listening to their lives, their experiences and you know, to realise how much people actually can do and how much they want to talk and interact with people, yeah, yeah it’s fantastic.

Megan Calvert-O’Hare:

Ok, that seems like a nice positive note to end today’s podcast on [laughing]. I’m going to go out and find a care home and go and join in, go and have a cup of tea.

Thank you to Ben and Laura, it’s been great please subscribe to our podcast on Soundcloud and iTunes.

Thank you!

Voice Over:

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