Podcast – Relationships & Intimacy in Long-term Care

Voice Over: Welcome to the NIHR Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk, in association with Alzheimer’s Research UK and Alzheimer’s Association, supporting early career dementia researchers across the world.

Anna: Hello I’m Anna Volkmer and I’m excited to have been asked to host this podcast today for the NIHR Dementia Researcher website. Before we start, I’ve been asked to remind listeners just what the NIHR Dementia Researcher service is all about – as well as these podcasts, where we talk to academics and early career researchers about their research and more general career topics that affect us all, we also have a fantastic website, there you will find post daily with everything from blogs by early career researchers sharing their own experiences and work to the latest research news, funding opportunities, jobs, and events. We also have a Whatsapp chat group that lets you connect with your peers to seek advice, support and to talk about these podcasts. I, myself, am on that Whatsapp chat group.

Now this week I’m joined by three highly experienced professionals to discuss their work in addressing the complexity of sexuality within dementia care. I know from my own clinical experience and also my research experience that there is a very limited research in this area around what families and front line care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict. So, I’m hoping today’s panel, I’m sure in fact, that today’s panel will share some of their insights. So hello and welcome to Professor Jill Manthorpe, Dr Dawne Garrett, and Esther Wiskerke. Now before we get going, I’d like you to all introduce yourselves and tell us a little bit about your background.

Jill: Great, hi everybody I’m Jill Manthorpe and I work at King’s College London, I run a variety of research projects and many of them touch on the lives of people living with dementia. I’ve been interested in dementia research, oh, for a long time, since it was probably called dementia research and it was about people with frailty and sometimes there were even confused older people but since then I’ve learned a lot, I’ve learned a lot with other people and I’m really pleased now to be working in a variety of NIHR studies and supporting new researchers coming through, hopefully to have an interest in dementia care both prevention but also response. So I’m delighted to be here today.

Anna: Thank you Jill, what a wealth of experience

Esther: Yeah, hi I’m Esther Wiskerke, and I usually I say by day I am in a centre for people with dementia and we specialise in managing the psychological symptoms of dementia and in a non-pharmaceutical way by being or offering quite creative interventions to reduce stress levels and by night I’ve then actually completed this Master’s that we are talking about today. On top of that, since then I write about dementia and I’m very interested in exploring further the complexities and also when it gets even more complex with the LGBTQ+ side of things and that this definitely a special interest of me.

Anna: Fantastic, well non-pharmacological for dementia is very dear to my heart too, so I’m very excited to hear about your Master’s studies and last but not least…

Dawne: Hi, I’m Dawne Garrett I’m the professional lead at the royal college of nursing and I’m a clinician up in Northern Lincolnshire and I guess my take is slightly different in that for me dementia rarely travels alone, so I’m interested in the interplay of dementia with other issues around older age, my work is predominately with older people but I do also cover some younger people with early onset dementia.

Anna: Well said, there are often co-morbidities or co-caring illnesses and diseases that, that people live with and have as well as the dementia and they have often significant impacts and are often a priority

Dawne: Looking at risk factors of dementia, it’s likely somebody’s going to have some cardiovascular element, or possible neurological

Anna: Indeed. So thank you, and I think the first question that would perhaps be most useful for our listeners is to ask you to tell us a bit more about your research on this topic.

Jill: So, I think maybe we’ll ask Esther to start about this because it’s her research that we’re talking to today, she’s drawn on the views of experts by experience who are not only people living with dementia and carers but the expertise of people working in social care so maybe over to you Esther.

Esther: Yeah, I, I chose his topic because it’s a tricky one so it’s not just about sort of managing sexuality in dementia care but also I chose the complexity of when the person concerned is still married because managing sexuality in dementia care is one thing in itself already rather complex but what do you actually do when they’re still married and that very much also goes with what Dawne said earlier, the person is not alone, it involves of course the people around them, and that took my interest. So we chose for a qualitative approach, and I interviewed care workers and as well as the relatives to get their view or vignette to explore a bit deeper on up to what point people would sort of tolerate the idea of people showing affection and from what point onwards would actually they clash with their, yeah, with themselves with their opinion on how it ought to be really and then what really, what should one do?

Anna: So, for clarity, the research that you were doing was about understanding how people felt about people’s I guess, affectionate behaviours, sexualised behaviours towards perhaps their own spouse or towards others?

Esther: No, no, thank you for asking for clarification, no, so, the story is set that a couple, one of them develops dementia and then sometimes it unfortunately happens that a spouse has to come to the conclusion that they no longer can look after them safely at home so with regret they then, one of them goes into a care home and then the husband or wife actually in the care home finds a new connection with someone else who also has dementia in my research case and then but of course they’re still technically married or in a long-term relationship. But the point is that they are emotionally connected to someone else but they forget about that and that’s awfully painful of course especially for the visiting spouse.

Anna: All too real a scenario

Esther: Yeah.

Anna: So, what have you discovered, this sounds fascinating

Esther: What was discovered is that, people initially respond quite positively, they said ‘oh, nice, there’s someone they can sit next to and it’s very nice and oh they make friends and they’re lucky they’re not lonely’ but then the vignette progressed to be clearly more of an erotic nature, then the, the majority put the heels in in a sense, up to that point but no further because this is not allowed. So there was a clear swap, change of opinion from general connection was ok but when it became a bit further then no, that was clearly, break them up, inform the families and that was another thing the study looked at, in how much actually because literature reviews showed that who actually should decide if the person no longer decide what to do, who is entitled to that?

Anna: So that person lacks capacity to make a decision

Esther: And then the law as well of course, which in one way the law is super clear, nobody should touch anybody without their consent, but what if their consent fluctuates.

Anna: Yes, exactly

Esther: Or, is it possibly contrast to how the family feels that this is still dignified for that person.

Anna: It’s and all that mental capacity stuff becomes really complex doesn’t it when it’s entangled with beliefs.

Esther: There’s a lot more research to be done especially when it comes to family conflict or when the severity of the touch is not such that the, it’s, it’s, let’s say that maybe the police won’t come marching in anytime soon because it isn’t that severe but technically it is not ok for instance and then if the family views conflict then still the care home staff will have to make a decision because somebody is going to be upset somehow, but this was not that study but I think there is definitely potential there for more research there in the future

Anna: Yeah, so, I guess it’s interesting to know perhaps, Dawne can tell us, is this an under researched area more generally?

Dawne: Yes, I think it is, I think anything that challenges some of our cultural, particularly with older people ,is difficult so death, politics, sex, money all those things, too hard to touch and of course they’re not and of course older people themselves talk about it all the time, so it is getting a window on that, it is finding your way in and I think if the skill of the researcher is highly transferrable, if you get good at talking to people about sex you can talk to them about almost anything and I think that, that’s the real, the real gift of having done this kind of research is it’s starts to break down that stigma and those taboos and it’s starts to make you feel more comfortable about having difficult conversations and as a nurse our life is around difficult conversations.

Anna: So you do you think that people themselves want to have these difficult conversations?

Dawne: Yes, and certainly some of the really early research in this field was exactly that, it was, Mering got talking to people in GP surgeries and saying to her ‘I’ve never had the chance to discuss this before’ and sadly you know, we’re probably 30 years on from that research and we’re still, still got really unusual gatekeepers, I think Esther’s spoken about the kind of gatekeepers she experiences and certainly doing my research, those gatekeepers were societal-wide, we, you know, we think about older people in sometimes a really, really stereotypical vulnerable way and, and say oh you know, you can’t talk to them about that, and that always needs challenging. I think that’s probably a message from many researchers is you know, why are people stopping you going there, what, what is that and what are their concerns and where does that sit in the context of our society

Anna: That’s a good message for researchers and clinicians

Dawne: Oh yes

Anna: So, what were the particular challenges in that case, delivering this study Esther? And the research in this field in general?

Esther: Yes, I think, a challenge was actually from a very early on when I came up with the idea, I asked the sort of the faculty and I said I’ve got this idea and they said but no, no, no, that is not appropriate. But I was, I’m not one to let go easily, so I pushed a bit on and they came back with no no we checked with colleagues all the people don’t have sex. I said, whoa, but luckily…

Anna: When was this?

Esther: That was in 2014 when I had to choose my topic

Anna: Wow, not that long ago

Esther: Not too long ago, but luckily I met very, very talented person and mentor and it’s not narrow-minded and we got connected and I was not afraid to take it on. Otherwise this would have gone absolutely nowhere.

Anna: And then once you, so that was obviously one of the first hurdles, were there any further hurdles as you went on, for example, with ethics, when you’re actually doing research, were people quite surprised you were doing it?

Esther: Well, I think this is always an interesting one, ultimately of course we obtain ethical approval

Anna: Of course

Esther: I mean it’s a very thorough process, I don’t recall any, any major issues there, what we did was fairly, I think it was quite comprehensive isn’t it to put it all down and that went through quite easily but, yeah, it, I could nearly say on the contrary people, I mean are always a little bit when you bring it up of course but afterwards the interviews I was astonished by how many of the applicants sort of participants actually then said oh well I know you said it’s fictitious the vignette but actually I’ve come across this or my mum has seen it or my dad has seen it

Anna: Yeah

Esther: And so many people have actually recognised the storyline of being real so but I don’t want to say it’s rare

Anna: It’s relevant

Esther: It’s real, and once you have the guts to open it up and talk about it people I think, it’s just nearly a sense of relief that somebody says oh, finally somebody wants to talk about it and it hits the nail on the head

Anna: Fantastic, Dawne did you want to add something to that?

Dawne: I was just going to give a perfect example about the way we think about sex and older people from my ethics, from my study. And, the study came back and they said, you know, we really need to make sure that you’ve got the right safe guards in place you know we accept you’re a clinician, you understand safe guarding, you understand capacity act and I you know, duly gave them chapter and verse about my methods of protecting the participants and what interested me that was at no point did anybody say to me what happens if you discover that one of the people you’re interviewing is a predatory sexual offender or has a paedophilic background or there was never any, any idea that older people were anything other than fluffy and vulnerable and that I thought was a, just a real marker about how we think about research with older people.

Anna: Absolutely, a real mind set, yeah, really, really good point, really good point. So, just going back a little step, I wonder whether Esther you mentioned earlier that there need to be lots more research done in this area, what do you think would be the next piece of research that should be done in this area of work? The next big question

Esther: Well, I think, well, there is so much and since there’s more research that has luckily sort of come out but, but I’ve got my eye on the fact, on when, like what I said earlier is when so care homes sometimes I think they’re their own little society and I’ve made the example comparison recently if somebody on the public bus puts someone your hand on a stranger you, you the stranger might say excuse me but you know that’s inappropriate you shouldn’t be doing it and if the person will persist they have rightly so can make a case out of that but in a care home and a hand goes on another person and that’s a stranger to them, and that’s persistent now the question is would that, how would that be managed because technically it is nearly identical, it shouldn’t be happening and the person didn’t give consent, however, whether that hand on that other person’s lap would make it to the CPS is, you know, I don’t want to call on that but I fear that that may not happen, yet it still shouldn’t happen, and what, how do you then actually measure that that was consensual or even then when the families come in and they see that happening maybe one family says well that’s great because that’s a bit of affection and I like mum to have that still or the other ones says no, but dad would never even have wanted a hand on his lap, to dishonour him and his whole ethos, his marriage for instance, so technically it’s incorrect but the difficulty comes in how do you decide, how do you work that through that people don’t have a terrible experience because nobody because one who doesn’t want to be touched should never be touched but if you go too strongly and move everybody apart that means nobody could experience the affection, so I think it’s that conflict management

Anna: There seems that there’s two sides to this coin, one side about empowering people and the positive aspects of older people and sexuality but then there’s the other side around consent and protecting and safe guarding people who, you know, in terms of risky situations and then of course how we talk about it and how we discuss it and how the people around them, these older people support them either way appropriately both their families and perhaps the paid carers, so

Esther: And I would ideally also say that how, how do you perceive sexuality and affection so of course society very monogamous, it’s very standard and also a consent as such yes I wanted/no I don’t it but it’s not always that clear cut even in regular life that consent may change and even, would you argue that if you didn’t know what that person but their touch felt ever so lovely what level are you, that you are actually giving consent or not and should it all always be boxed in, can it be fluent?

Anna: Yes, I agree, I mean I think we probably all make some kind of fluid decisions in a day to day life without having a diagnosis of dementia so yeah, I completely agree

Esther: At the same time, the care staff are already under pressure in care homes, it still needs to maintain practical, because they themselves have their own background although I always say they really shouldn’t really depend on the background of the care worker whether that person is going to experience touch or not. But, you cannot completely ignore that maybe they’re coming from a particular religious background where they really find that ethically very difficult to, to permit

Anna: Absolutely, the staff have got their own values and beliefs. I understand that completely. So, how do you think this stigma around older age and sexuality could be addressed more broadly? Is there anything else you know, other than the things we’ve been saying that we could add?

Esther: I think thanks to this podcast that is one, thanks to what Jill’s doing, what Dawne is doing, what some other great people already are doing, luckily I think there seems to be a momentum building, I think it’s about exposure, exposure, exposure via these kind of media, keep talking about it, and then I think one day we’ll get there. It’s a matter of keeping repeating the message really and combining forces with other likeminded professionals and people who say yeah, let’s keep talking about it.

Anna: Did anybody want to add anything to our discussion that we haven’t covered so far?

Jill: I suppose one of the things we’ve not talked is the use of methods and how exciting it is now that we’re dealing, we’ve moved beyond the interviews, which was always very very difficult for people living dementia, but to think about more creative forms of methodology around interviews, interviews are great, they’re a conversation, but they can be supplemented by a whole range of techniques, Esther chose a vignette partly because she was talking to staff and to family carers and I think that worked really well and no wonder that people said it was authentic because she’d worked on it to discuss and to consult so that a lot of people believed it was very real, it wasn’t just made up. So I think we’re a really good time now of making methodological advances in dementia research. The second point is really that we’re moving from problem finding to care research in particular, how many problems have we got, let’s stack them up and say that they’re really enormous and they’re all completely unsolvable, to really not problem fixing but really just saying what are the solutions and to chip away at some of the problems and research such as this really equips us to give people on the front line, and it’s very important to remember that Esther was talking to people who were on minimum wage, working part-time, very precarious jobs some of them and to equip them with, with some tools really, for the very difficult work they do, so I think that’s a shift isn’t it from research from less, how big is the problem and let’s find a new one if we can, to say let’s think about solutions. And particularly in this area where we glibly say things like relationship-based care and we’re not entirely sure which relationships we mean and then lastly I suppose we haven’t talked about the theoretical basis of those and the way we’re bridging theories of both art and science nowadays so whether implementation sciences is science or whether implementation is an art, we’re now more interested in those big pictures to say that whatever research we’re doing has to have some point and perhaps tries to make a difference and the difference can be do something, and also the difference can be don’t do something which is just as really helpful to learn isn’t because we can spend a lot of money on things that, when we have difficult choices to be made about it, so I think setting that in the bigger context of dementia research for the future is about thinking about methods, really on that real time is valuable spent on methods and then setting it in the context of trying to help people on the frontline, carers, people themselves, and also frontline care workers, and then, thinking about the theoretical framework so we can advance the field just chipping away is really what I suppose I’m getting at.

Anna: Yeah, that’s a really useful roundup, thank you Jill, and I’m actually going to extend our conversation a little bit because at the beginning Esther said to me please don’t ask me too much about methods [laughing] but, I recently I was involved with a qualitative research methods group in dementia and actually we recorded a podcast or the remainder of the group did, I wasn’t unfortunately able to attend the podcast in person and we talked about all different innovative methods and I wonder have you, did you contemplate using images or, I talk about total communication as a speech and language therapist which is my background where we use write single words down or draw pictures as we go along, use gestures and we might show that might a bit more complex but we might show videos or images to supplement our discussion, did you think about including any of that or was that a bit more challenging?

Esther: No, and I guess because I interviewed relatives and care staff

Anna: Of course

Esther: And not actually people with dementia themselves, otherwise yes, then of course you have to think a lot more creatively, yeah

Anna: That’s useful. Thank you. And I, and I agree again with my clinical hat on I think this is a, I’m really appreciate the point you made Jill about really that the implementation of any research work is often something that frontline staff have to pick up and run with who often are, have got lots of complex pressures day to day pressures and I think that is something that perhaps that will be really important for researcher to explore further in terms of care and I think perhaps Dawne wants to…

Dawne: I was going to say for me the culmination of this work is how do we get that knowledge to particularly for me nurses, because that’s what I do and often there the decision makers within certainly within the care home so, we’ve done some work where we’ve synthesised a lot of the research and taken a kind of case study approach to guide our members, supplemented by the law and some really great barristers who work really on, on the cutting edge of capacity law around sexuality and that guidance is out there for people to, to look at and read and I think that for me is, is the closing the circle and that’s the really important stuff.

Anna: Fantastic, well thank you Dawne that’s a really good point to end on so thank you Esther, Dawne, Jill today for all the conversation, I think we could have continued chatting for a lot longer [laughing]. If any of our listeners have anything to add on this topic, please add your comments on our website or drop us a line on twitter using the hashtag #ECRDementia, as I mentioned at the start we also have a Whatsapp group and the content of today’s podcast will be their topic of the day for their online chat in one week’s time and to find out how to join check out our twitter feed or visit the Ask An Expert page on our website, I will be on that Whatsapp group ready to have more discussions on this fascinating topic next week, so thank you again to today’s panellists – Jill, Esther and Dawne and finally please remember to like, subscribe and leave a review of this podcast through our website, iTunes, Spotify, Podbean, and Soundcloud and please tell your friends and colleagues. Have a great day, thank you.

Voice Over: Brought to you by Dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

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