Podcast – Exploring Psychotherapy for People with Dementia

Voice Over:

The Dementia Researcher podcast, talking careers, research, conference highlights, and so much more.

Dr Anna Volkmer:

Hello and welcome to the Dementia Researcher Podcast. In this episode, we explore a two-year Alzheimer's society project, testing psychotherapy for people with dementia, what it set out to do, what happened, and what's next.

Hello, I'm Dr. Anna Volkmer. I'm an associate professor and consultant speech and language therapist at University College London, and I am delighted to be hosting today's show. Behind every dementia diagnosis is a person and often a family navigating change, loss and uncertainty. We know dementia brings many challenges, but can talking therapies make a difference? What role might psychotherapy play for people living with the condition? Today I'm joined by three people who can talk about their research and experiences on this important two-year study, which is ready to share its findings.

First, we have Dr. Alys Griffiths, an NIHR Senior Research Fellow at the University of Sheffield, whose work focuses on improving the lives of people with dementia and also motor neurone disease through evidence-based interventions. Hi Alys. Next, Sophie Jeffrey, a clinical psychologist and systemic psychotherapist who's worked closely with people with dementia in their families. Thank you for being here, Sophie. And finally, Esther Whittlesea Reed, whose wife is living with dementia and who took part in this study, showing her lived experience as a carer and partner. Thank you so much for joining us, Esther. Hello everybody.

So, to start us off, could I ask each of you to briefly introduce yourselves in your own words and tell us how you became involved in the study, in the project? So perhaps, should we start with Alys?

Dr Alys Griffiths:

Yeah. Hi, I'm Alys and I've been working in dementia research for just over a decade. And this study started because we did some kind of smaller work looking at evaluating a counselling intervention for people with dementia and their families. And really saw the benefits, tried to look at what the evidence base for that was and realised that there wasn't a lot out there from the perspectives of people with dementia themselves. And so applied to the Alzheimer's Society to do some work to understand that and to help guide therapists working in this area.

Dr Anna Volkmer:

Thank you, Alys. Sophie.

Sophie Jeffery:

Hiya. Yeah, I came to this, I think conversation started back in 2017 when I was finishing my masters in family therapy. And I've been working with older people for a long time by that point and really wanted to think about the evidence-based and developing evidence around working with families of people with dementia.

Dr Anna Volkmer:

Lovely. Thank you, Sophie. And Esther?

Esther Whittlesea Reed:

Hi. I saw an advertisement actually about being involved with research and a team that were looking into this. And my wife and I had both had some psychotherapy with our local NHS trust in the UK, and also with a charity that had done some support work, and we'd had quite different experiences. So, when I saw that, I spoke to my wife at the time and said, "Do we want to participate in that?" And so, I followed it up and then I met the team ,and they were keen that my experience and what my wife was prepared to share was part of how the project developed.

Dr Anna Volkmer:

Lovely. And the rest was history. So, Alys, could you start by telling us about the background to this project? Why psychotherapy for people with dementia actually? And what did you hope you would achieve?

Dr Alys Griffiths:

Yeah, so I guess while there's no cure for dementia, anything that we can be doing to support people to live as well as possible feels really important. We wanted to focus on something that people were telling us informally they were finding really helpful, but were also struggling to access, struggling to navigate pathways, referrals, long waiting lists. All those kinds of barriers felt that they were particularly challenging if you were also living with dementia. And as I said, we'd been doing that evaluation of a small kind of relational counselling intervention that was just taking part in one organisation.

And as we were writing that up, realised there isn't a lot to guide you as a therapist working in this area, but there also isn't a lot to guide you as a family affected by dementia, with which of these interventions might work for you, how do you even navigate what psychotherapy is, what all these different kinds of acronyms and different types of therapies might be? How do you know which service is right for you and how do you get yourself to that service? And what's the difference between an NHS provided service and a private service and how do you know what's right for you?

And so, as I said, we applied to the Alzheimer's Society for the funding. And something that was really important for me was that we didn't just kind of explore people's experiences and say, "This is what it's like," but actually we had something at the end that would be helpful to both therapists and families affected by dementia. So, one of the things that we've been doing over the past kind of 18 months is co-producing core competencies for therapists. So, to help guide people working in this area about what skills and knowledge they need to be able to work with families with dementia. Which is really important because not all courses and curriculum contain information about dementia. And so, people might be delivering therapy to this population without fully understanding the different types of dementia, the different ways that people might be affected, the different symptoms, the wider context of their life. And it's something that we as a team felt was really, really important.

Dr Anna Volkmer:

And this may be a daft question, but do you mean core competencies for psychologists and counsellors? Which therapists? Yeah.

Dr Alys Griffiths:

Sophie will be able to chat more about this. But yeah, for anybody working therapeutically with people with dementia.

Dr Anna Volkmer:

Yeah, in that context. Because I guess there's similar things that as a speech and language therapist, we do a little bit of counselling in a different way. And I guess it'd be interesting to compare those core competencies actually, because it's really fascinating. Often, as you say, people, all these different disciplines, all these different inventions happen in isolation from one another, and families have got to choose all this stuff or navigate their way to the things that are going to work well for them. It's not so straightforward. So interesting.

Sophie, let's move to you then. I need to ask you these questions. So, from your perspective as a clinician, let's start from the beginning, what actually drew you to this work? I know you said you had a conversation a little while ago. And what kinds of approaches did you think might work best at that time for people living with dementia or affected by dementia?

Sophie Jeffery:

So, I've worked as a therapist, as a psychologist using different therapeutic models and then particularly love working systemically, which is why I then went on and trained and qualified as a family therapist as well. And I just love it. And I suppose what drew me to the research was my experiences of doing therapy that was fascinating, that felt meaningful, where I saw people benefiting from it. And really wanting to work with the research around that, what I was seeing of being effective in my clinical work. And I've worked in various different NHS services over the years, but predominantly with people with severe and enduring mental health problems alongside their dementia. So, in a lot of services, unless you've got other mental health problems or significant difficulties associated with dementia, you wouldn't stay within the NHS services that I've worked in. You'd be sort of discharged back to the community.

So, I've even in that kind of context with people who are having significant difficulties, it's been really rewarding, interesting work to do. But also, I've had to adapt a lot in the ways that I was taught to be able to be effective with that population. So, for me, it was a fascinating project to try and think about, distilling, well, what does need adapting? How can you work effectively with people with dementia and their families? How do I have to change what I've been taught to fit with this group? And also, then thinking about meeting people who wouldn't come into the services that I work in but are living with dementia and may well benefit from therapy. And not having access to it, they can pay for an independent therapist and are in a position to do that. So yeah, for me that was really useful to be able to come into the research and hear those people's voices too.

And in a way kind of get back to really listening to that rather than focusing on the individual families that I see. But being able to come into the research and hear the voices of ordinary people who I don't have a therapeutic relationship with, can hear what their journeys through services and attempts to get therapy have been like. I think as well, there's a politicised bit of me that has been really irritated over the years by hearing people say, "Well, can you do therapy with people with dementia? Will they remember what you've talked about? What difference does it make? What's the evidence base for that? Is it even possible if they're getting worse? How can therapy make things better? What even are the goals of therapy? You're not going to fix dementia." And all of those sort of things that really irritate me. And so, I think, "Well, I will show you what we can do," and hear those voices and raise those voices of people who've experienced therapy that's been effective so we can understand enough from all of that.

Dr Anna Volkmer:

Brilliant. I've been vigorously nodding, completely aligns with my thinking. Thank you, Sophie. Well, let's move on to Esther. I guess some of what Sophie mentioned reminds me of what I find ... When I meet people, often people have expectations about what speech therapy or psychology or whatever can offer them. What were your expectations before becoming involved about what psychotherapy could offer you and your wife?

Esther Whittlesea Reed:

Well, I think at the time, because my wife was very young and we had very young children, I think for us it was about how we navigated our relationship, the changing in our relationship, how we navigated the situation around friends and family, and also where our children sat in in that. Because for us at the time, my wife was significantly in denial. And she was a young woman; it had taken many years to get a diagnosis in the first place because the system generally didn't see that somebody of her age could have dementia. And I think for us, it was about how we looked at the pattern of our relationship, how depressed she was, how we could develop coping mechanisms, how we could explain what was happening to other people and manage the stress in our lives.

But I think for me, at the time when these things were offered to us, they weren't particularly well explained about what the therapy was and how it would help. And the therapist, I would say, had had quite a lot of experience with dementia patients, but not necessarily a dementia patient with a wife and young children. And so, there was a lot of trying to adapt to that and then trying to explain how certain usual ways of working just didn't work. So, I think I went in being hopeful, sometimes was deeply frustrated. But I wanted to share this with the project and how it developed about how the lived experience it was, how it was to access different services, how there was a lot of, I would say stigma, but also very distinct sort of challenges and barriers.

And I think it was about how can we improve this, what needs to be there in place? So, I think my expectations for both being part of the research was that we would be listened to. But the actual about psychotherapy, it was all how can we live life as it is, but at its best and grab what it has to offer now. Because it did at the time seem very much a bit, sorry to say it like this, like a death sentence. Everything was just like, wow, you need to get LPA, lasting powers of attorney in place, and have you thought about funeral arrangements? And it was like, oh my goodness, the way it was managed was terrible initially. And it was not about living. So, I think I had very mixed feelings, to be honest.

Dr Anna Volkmer:

Thank you, Esther. Yeah, that makes total sense. I'd really love to hear about what you actually all did then on the study, Alys. I'm mindful of everything you've all said already. Could you explain the actual design of the project? Who was involved, how you delivered it, the therapy itself?

Dr Alys Griffiths:

Yep. So, there was three components to the study. So the first part was us interviewing people living with dementia in their families about what their experiences were, trying to hear from people who'd received NHS-based therapy, private therapy, maybe both, who'd had therapy before diagnosis and after, people who had never considered it before but had been suggested post-diagnosis, to really understand those views from across England and Wales. And then the next component was speaking to therapists delivering this, all kinds of therapy, which may include families affected by dementia. So, we didn't just want to hear from people who exclusively work in either older adult services or have a private practise working with families with dementia. But we wanted to hear from people who maybe sometimes worked in this area and were able to reflect on what they might be doing differently to support people with dementia, to engage in therapy or to have a meaningful experience, as Sophie says.

And then for the third part, we ran some co-production workshops in two cities of England with an online option as well to co-produce the competencies for therapists. And so those groups were mainly attended by people affected by dementia and their families, friends. But we did also have some therapists attend. And then the online group was mainly therapists as well. And so, we did each of the workshops twice and then did several rounds of developing the competencies. And once we had those draughts, obtaining feedback from a wider group of people.

Dr Anna Volkmer:

Thank you, Alys. So, Sophie, what was your role in the project? And how did your clinical expertise influence the project?

Sophie Jeffery:

So I was primarily there as a clinician and a clinical voice, which was really lovely to be able to bring the experience that I'd had of working with people with dementia and be able to comment on some of the findings or as we were discussing different interviews and ideas to be able to say, "Oh, from my experience," and relate it. And sometimes join dots as well between different ideas that we heard people discussing as we were doing the analysis. But it was also great to be able to bring my skills into the research, which I probably hadn't anticipated in advance. And I remember when I turned up to one of the workshops that we did, I was like, "Well, what do you want me to do? I can move some sandwiches around and make people feel welcome." And they said, "Well, could you facilitate the group?" And I was like, "Sure, yeah, I can do that. I've got skills to make people talk."

And that was really nice actually to just be able to step into doing some of that ... Using my therapeutic skills actually to facilitate a research conversation essentially and support people who were less confident or who were experiencing cognitive impairment and therefore sometimes struggling to follow the conversation as well, to be able to loop them back in and make sure that everybody had a chance to talk, that we covered the different topics that people wanted to and kept kind of asking questions that would draw out more different ideas and things. That's the stuff I do in therapy. And so, it was lovely to actually come and find that was useful in the research as well. So yeah, bringing my skills to the process as well as my ideas and experience to the broader understanding and the analysis. Yeah, that's mainly what I've been doing.

Dr Anna Volkmer:

That makes total sense. And it's interesting, I recognise that too, I've had the same experiences that your therapeutic skills could be super useful. And you don't realise when you come to research. They can definitely be really useful. Esther, what was it like to be on the receiving end, to join the research team?

Esther Whittlesea Reed:

I think initially I was rather daunted, to be honest, surrounded by all these people who had lots of high-level expertise. What was really positive was that I realised that everyone was really interested in how my actual experience had been and my wife's experience and that of my children, and the difference between how that looked on paper and how we thought the pathways would work. But when I was involved with helping to facilitate the workshops as well, I think there was certainly an element where other people who were present, because I was able to say that my partner has dementia and I'm living with this situation and I have already been through psychotherapy, that there was a sense of I was a sort of trusted person with a lived experience. And so, I think there was definitely a sense of people opening up and digging deep about their feelings or their experiences or where they felt that there were gaps or challenges or how things could work more.

And I would say for me, that thinking about how this project could make a difference to other people and other people's lives was fundamentally one of the reasons I wanted to be part of it. But it has been bigger than all of that. And also understanding the sort of depth of professionalism that goes into becoming a psychotherapist, but that there was still a willingness to learn and reflect and develop practise was something that I have found personally very encouraging. But there is this outcome here, that the competencies will make a difference to other people's lives. It's been an extremely positive and rewarding experience.

Sophie Jeffery:

I think one of the things that has been really lovely about the research is the way that we as a research team have got to know each other and the relationships. And I think doing the workshops together and when we had groups that we were facilitating, there'd be a couple of the research team there together supporting each other in the conversation, noticing where there were little gaps, noticing somebody who needed coming to next. And it felt like a very supportive process. But I think because of as a team, we discussed not just our expertise or professional backgrounds and things, but our personal ones as well, our interests, our ethics, our experiences personally in our lives being with people with dementia as well as caring roles and that sort of thing. We understood that about each other as a team. And I think that really helped us to do a good project where we were working together to get the data. It made it a lot richer.

Esther Whittlesea Reed:

And there was also a group of other people with lived experience who would be looking at the outcomes as they developed, at the facilitation of the workshop as it developed. And these where often people had also lived with dementia or had worked in this field. And so sometimes things that may have only seen a smaller issue, we were able to say, no, this is a huge, huge issue actually for anybody who is either living with dementia or a family member. And actually, this needs really teasing out. And it may look like something almost insignificant because it's mentioned, say only a few times in different ways, but actually this really needs to be looked at and more thoroughly researched. So that was also a very, very useful part of the project.

Dr Anna Volkmer:

Wonderful. I think that's a really beautiful way of describing this process. And I really struck by the use of the term being a trusted person, Esther, because you'd gone through it. I can see that's so important to people, that trust. So, thank you for naming that. I'm wondering about the findings now. I want to hear about the findings and what you discovered. Alys, what were the key results from the research?

Dr Alys Griffiths:

Yeah, so I guess they're structured around the three different components. So, what we heard from people with dementia and their families is that psychotherapy can be a very positive experience. They can experience meaningful outcomes, as we expected, but actually there are a lot of barriers that are both systemic and individual. But also, a lack of knowledge around the different types of therapy and what that might look like really just put people off taking up referrals and even starting to go down that pathway. So, I think there's some work that we can do there around explaining peers, explaining what that term means, explaining the difference between that and things like hypnosis. And especially as the kind of newer therapies develop, things like EMDR where there is a kind of physical aspect to it, there is fear around that and there are concerns. And working with people to help ensure that they understand why they're being referred somewhere and what that might do, by the point that they then get to the service and are being seen in a clinic which [inaudible 00:22:19] fully aware of why they're there.

And then from the therapist's perspective, there's clearly a lot of passion for working in this area, as I think we hear from Sophie regularly, but that people don't always feel supported and don't always feel that this area of care is prioritised and taken as seriously as other areas. And something really important that Esther guided us to think about and guided us to ask therapists about was people not working in older adult services who may come into contact with dementia, where they may be working with children for whom dementia is a huge part of their life, but don't necessarily have that focus on dementia. And so, thinking about what therapists in those settings need to be able to dip into working with dementia, but do that in a meaningful way.

And then the final part is obviously the core competencies. So, they are out for review with lots of interested people at the moment, which is mainly therapists, but also kind of charities and families affected by dementia who we've met along the way. And we're hoping that they'll be launched very soon. And they focus on four areas of care and support therapists to think about what they need to know to be able to work meaningfully.

Dr Anna Volkmer:

Great. Be useful across the therapies. I know that sometimes I see people who are, and I'm glad you've highlighted some of that, the kind of reticence that might be there, because I sometimes see people who are more comfortable to come to speech therapy for some reason, and then I can segue them into counselling or psychotherapy. But they were unsure before they saw me. So even that, I can see that some of the stuff you're developing might be useful for kind of care pathway to refer people in as well. I can see a very, very broad application. Sophie, from a practitioner's voice and viewpoint, what do you think the core competencies will offer more broadly? I've kind of named one from my perspective. But what could it offer for other people working in this area?

Sophie Jeffery:

I think on a practitioner level, we've got two different levels, one's for a generic, for all therapists, things that anybody who's got any therapeutic modality, irrespective of what client group they predominantly work with, what all of them should know the basics about dementia or how to do some adaptations. But then we also have the specialist level, so people who are doing more of this work and offering therapy around dementia, what they need to know. And I think that's really helpful for individual clinicians to be able to go to the competencies and see, okay, well where are my gaps? What do I need to skill myself up on here for any of those levels? So hopefully they can say, I would hope that if there was a canned therapist, say, who had a new referral for a family that's affected by dementia, they'd be able to go to core competencies and say, "Okay, well what do I need to know and where can I go and find that out or develop those skills?" So, it's a way to explore and clarify what your CPD needs are essentially. Sorry, continuing professional development.

Dr Anna Volkmer:

Yes, lovely.

Sophie Jeffery:

And hopefully be able to justify that as well. If anyone was questioning, why are you spending this time looking at that to say, "Well, this is the standard, this is what I should know to be able to do this work." And benchmark yourself against that essentially. And it should also hopefully then be really useful for training providers. So, I would hope that any courses that are delivering training for the psychotherapists, psychologists, would look at the competencies and think, "Okay, well we need to include these bits in our training." That's important for everybody that we're training to have that generic level of skills in this. And my dream is that in the future then everyone's coming out of their psychotherapy training knowing a bit so that they could deal with a family turning up on their doorstep who were talking about this and affected by dementia.

But at another level, I think the competencies are really useful for delineating psychotherapy for dementia as a specialism, for clarifying that actually this isn't just stuff that you can jump into without knowing anything about it and do it well, that these are specialist skills that need focus, education, development to deliver therapy well. And I think that that is so important in broader context of services. And where there is constantly a little drip-drip of, "Oh, well, can't older adults just come into adult services? Or why do people with dementia need to stay in services? Once they've got that diagnosis, they can just go out and get on with their lives. Why would they need therapy?"

And I think that it really clarifies, as a set of competencies it shows that actually this is a specific area. This is something which is a specialism. And that older people and people with dementia deserve service provision. And that ageism, which is always the battle that we're kind of fighting as old age and dementia specialists is always out to deny these people of a service and a voice. So, I think that it helps to clarify what we should be doing, what we should be offering.

Dr Anna Volkmer:

It elevates it. Yeah. Thank you. Esther, well, you are at the receiving end obviously. Well, you have been. But then you've been involved in this wonderful research study. What stood out to you most about this experience of being involved in this research study?

Esther Whittlesea Reed:

I would say it was kind of an understanding of the people involved, that dementia diagnosis is actually a traumatic life event and isn't simply something that happens because people are old, and it's an easy event for the family or for the people around. And I think that that recognition was probably the first time that that had properly happened. And I don't think that really happened even in the therapy that my family had received. There seemed to be much more of an understanding of a sense of that people are living with chronic sorrow and anticipatory grief. And especially the idea that therapy shouldn't necessarily be a one-off. It's that you've got this therapy, now you've done and you can get on with your life. Because as somebody's dementia changes their understanding of what they can and can't do and how their life is lived and their sense of loss also magnifies. And at the same time, they need support to think about how they can live the best they can.

So, I would say that the team of people that I was involved with understood this, and the people that were in the actual research programmes were expressing these same sorts of [inaudible 00:29:27], that these were the experiences. And somehow that had not been picked up. So, I want to echo that dementia definitely needs specialism. It definitely needs people who are trained in understanding dementia, how it progresses. And the impact on both the person with dementia, but their carer. And the fact that their carer may be a partner and a spouse, and how does that impact. And also, any families around them. And that this is a massive life event and not just something where somebody fades away slowly and is something that happens in the course of being older and somehow that's okay. Understanding it as a kind of rupture was definitely something that the group [inaudible 00:30:12] the people who were participating were voicing and is fed into how the competencies have been developed.

I think I was really shocked that there weren't these competencies originally. And how have we got this far with a condition that many, many people have across the world, and this hasn't happened yet. So, for me, that was slightly shocking. But I [inaudible 00:30:39] at the level of the competencies that have been developed, the interest that there is out there, and I can't wait for it to be rolled out into training programmes left, right and centre across the world so that there are more psychotherapists and psychiatrists and anybody who encounters people with dementia who will be skilled up and equipped to make a much better difference in people's lives.

Dr Anna Volkmer:

Brilliant. Well, you're already talking about the future. We are already looking ahead, and I haven't even asked you about that yet. So, what happens next? Let's talk about that. Alys, what do you see as the next step for research in this area?

Dr Alys Griffiths:

Yeah, so something that was really interesting when we were drafting the competencies was knowing where to stop and how much information we should be providing and how much, as Sophie just said, people should be saying, "Okay, this should be my professional development focus." So, there's a couple of different avenues that we're considering. One is, does there need to be specific training that's developed that addresses the core competencies that's kind of co-developed with the main bodies responsible for psychologists, counsellors and psychotherapists in the country, and with Esther's dreams, the world?

But also looking more specifically at types of therapy that are being delivered in the NHS. So, at the moment, we're looking at family therapy for families affected by dementia and looking really carefully at those kind of referral pathways, the experiences of families, why people are turning down a referral, what factors play into that decision. And what those experiences look like, how the person with dementia is brought into the session, how they're supported by the different people in the room, to try and look specifically at how we can guide family therapists working in this area. Now, obviously that's just one very small area of psychotherapy, so it might be that we consider doing similar work in different areas, or we might take a broader, this is the next steps for training focus. And that is very much a TBC that we talk about regularly. And I guess the immediate plans are competencies shared as widely possible.

Dr Anna Volkmer:

Yeah, yeah. I wonder, because Sophie mentioned this, and there's still a nihilistic attitude, isn't there, around dementia. But I wonder if there is a piece of work to be done, as you say, exploring why people turn down ... They turn down everything. Frequently I meet people, they say they won't do any kind of therapy, any psychotherapy, any counselling, any speech therapy, any physiotherapy, any occupational therapy. And it's really hard to unpack why. There are huge holes, I think, and then gaps in supporting those people. They're kind of being lost through these gaps by everybody. I think that's-

Sophie Jeffery:

I suspect that some of that is quite culture bound as well.

Dr Anna Volkmer:

Completely agree.

Sophie Jeffery:

And [inaudible 00:33:38] relates to cohort beliefs as well.

Dr Anna Volkmer:

Yes.

Sophie Jeffery:

Yeah, I think when I first started working with older people, I don't know, like 18 years ago or something, it was really common for people to never have heard of a psychologist, have no idea what a psychologist [inaudible 00:33:54]-

Dr Anna Volkmer:

Exactly.

Sophie Jeffery:

And I don't have to have that conversation much anymore these days. People know what a psychologist is. And there's a little bit more awareness of what a therapist is in the older adult population. But yeah, I think that that's just one example of the ideas that people have and the reasons why they might or might not think that therapy is helpful are probably quite specific to different age groups, different generations and different cultures.

Dr Anna Volkmer:

Definitely. Do you think then that psychotherapy could be integrated more into dementia care services and thus become more routinely part of what people experience? Do you think that would help?

Sophie Jeffery:

Absolutely. I think that in services there are often very limited provision of psychotherapy for people with dementia and that there are a lot of barriers to people with dementia accessing therapy through mainstream provision. The services that in the UK have been termed improving access to psychological therapies or talking therapy services over the last 15 years [inaudible 00:35:03] dementia as an exclusion criteria. So, once you've got a diagnosis of dementia, you can't go and get CBT through those services that all other adults have access to. Even those with long-term conditions. And dementia is a long-term condition and can be thought of that way. And there should be therapeutic services available to people, but they're excluded. And I think there is a massive need out there. There are huge numbers of people in the world, in the UK living with dementia, and potential for them to benefit from therapy if we had services that offered that provision

Dr Anna Volkmer:

Just embedded.

Sophie Jeffery:

Yeah, absolutely. I think that there's been a huge growth in training numbers of clinical psychologists in particular as well as other therapies over the last few years. Because that relates to the workforce mapping that's been needed for the number of professionals we need to be able to do therapy in general, and particularly in the NHS, there's potential there to really think about, well, what does our workforce need to be able to offer the skilled professionals delivering psychotherapy for people with dementia? I think that probably we're really long way off being able to offer the therapy that is required to meet the need, let alone the wishes of people out there who are, like I say, currently usually being denied access to therapy. [inaudible 00:36:23] they can go through independent provision.

Dr Anna Volkmer:

Thank you, Sophie. Now finally, Esther, now you already talked about your vision for the future, but if you had to prioritise something, what do you think future research or support in this area should look like?

Esther Whittlesea Reed:

Well, I kind of wanted to echo both what Alys and Sophie said really, partly because I'm still in the fight of trying to get my wife appropriate therapy now that she's so many years into having dementia but still struggles with what that means because we still have young children. So, she has this continual loss of not seeing them into adulthood. So, one size fits all therapy has never going to have worked for her.

So, the idea of needing more understanding and more support around family therapy is definitely where my heart is. But so is that support around how CAMS professionals could be skilled up. Because I have young children and we are about to go away on a family holiday with three other families, all who have parents with dementia, and the children range between eight and 15. And across the UK it's been a postcode lottery of what supports these people have or have not received. So, I don't want there to be a postcode lottery. I think that's outrageous and disgusting. So, I don't want that gone.

But in terms of what Sophie was saying, I think that we are in this country, particularly in the UK, an ageing population, but people can live long and well with dementia. So, what is there? And having seen the barriers that have been placed for my wife and being an advocate and a voice that will continue to fight against that system, I agree that that needs looking at. For me, it's quite a hard thing to answer because it probably is both family, it's looking from the gay, queer culture also, therapy had a lot of stigma because we're still, and in this current, definitely in the Western mindset at the moment, people of queer background feel quite under attack.

So, there are going to be more barriers, more challenges to accessing therapy right now, but more people need it. And there are older people who are gay who could definitely benefit. So, for me, I think how we look at dementia services going forward, how we look at what we should be researching, what should be in place so that we actually fit the whole demographic of people. Sorry, that's very broad, isn't it? But for me, that's where I'm at. It's like it's not good enough yet. But these teams out there doing these valuable researches, it needs funding, it needs promoting, and people need to get behind it.

Dr Anna Volkmer:

Superb. I feel like that's the bottom line, and you've described it so perfectly. Thank you, Esther.

So, we're almost out of time, but before we finish, could each of you just share one short piece of advice or one message that you'd like our listeners to take away from this discussion? Where should we start? Who wants to go first? Alys?

Dr Alys Griffiths:

Yeah. So, I would say be open-minded about what psychotherapy can offer you if you're a family affected by dementia or be open-minded about that being as a service you might want to consider working in if you're a therapist or thinking about going into that area. But also, be willing to challenge where therapy isn't working for you because of stigma, because of poor understanding, and feel that there are alternatives out there if one therapy or one service isn't working for you. So, feel confident to know that hopefully the competencies can help you demonstrate where someone isn't delivering a quality of service that you need. That's quite a long one, wasn't it?

Dr Anna Volkmer:

No, it was great. Esther, what's your advice or message for the listeners? One advice, one piece of advice.

Esther Whittlesea Reed:

If you encounter individuals who have dementia or their families, then it's important to support them to understand that there's a lot of life left to live, and that psychotherapy can really help improve relationships and improve your mindset and support you in that struggle. And if life is for living, then it's for living right now.

Dr Anna Volkmer:

Sophie?

Sophie Jeffery:

I would like people with dementia and their families to hear that there are things that really help, that there are therapists available, and to have faith that that can help. Because I think that there are lots of messages that dementia is bad news, that it's a foregone conclusion. And I think that over time, as Esther has highlighted, different issues and difficulties can emerge. So, at any point it's important for people to be able to think about reaching out and accessing help and asking for help. And for everybody in the system who sees people with dementia in their families to give positive messages that they will help them access that help as well, and that it can be useful. And to deconstruct some of the ageism about whether therapy is effective for this group.

Dr Anna Volkmer:

That was perfect. And I think the key bottom line is that therapy such as psychotherapy can be accessed by people of any age with and without dementia, and we need to spread that word. That's what I'm hearing from all of you really. So, thank you so much to Alys, Sophie, and Esther for joining me today, and to you for listening. It's been such a useful conversation, such an enlightening conversation, and so many parallels with the work I do actually on speech and language therapy for people with dementia. So, it's always really good to meet with people who are talking about the same things and feeling the same frustration but sharing the same messages.

So as ever, you can find more information about this work and links to resources on our website at dementiaresearcher.nihr.ac.uk. Do also check our community app, where over the autumn and winter we will be holding a series of debates, exploring topics around careers, research, and also if we should be prioritising more research just like this study we've heard about today. But for now, I'm Anna Volkmer and you have been listening to the Dementia Researcher Podcast. Goodbye everybody.

Dr Alys Griffiths:

Thank you. Bye.

Dr Anna Volkmer:

Bye. Thanks.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review and register on our website for full access to all our great resources, dementiaresearcher.nihr.ac.uk.