Today, we’re speaking to Dr Charlotte Morris, a GP and academic based at the University of Manchester.

Title of paper: Experiences of primary care for people with dementia from socioeconomically disadvantaged areas: a qualitative study

Available at: https://doi.org/10.3399/BJGP.2025.0407

Existing national guidance recommends primary care-led dementia health care, but little is known about the experience of this for people living in socioeconomically deprived areas. This study highlights that people with dementia, and their carers, in socioeconomically disadvantaged areas want to maintain identity and understand their decline. Support from healthcare services often diminishes over time, with difficulties accessing and navigating healthcare systems when needed. There was uncertainty about primary care’s role in dementia health care. Clearer communication and proactive support from primary care may improve experiences for these patients.

Transcript

This transcript was generated using AI and has not been reviewed for accuracy. Please be aware it may contain errors or omissions.

Speaker A

00:00:00.320 - 00:00:32.850

Hello and welcome to BJ GP Interviews. I'm Ewan Lawson and I'm the editor of the BJ gp. Thanks for listening to the podcast today. In this episode, we are speaking to Charlotte Morris.

Charlotte is a GP and doctoral research fellow at the University of Manchester and we have recently published her paper, Experiences of Primary Care for People with Dementia from Socioeconomically Disadvantaged Areas A Qualitative Study.

So, Charlotte, first of all, what I'd like to ask you is how did you come to focus on people with dementia in deprived areas specifically, and what surprised you most in the interviews?

Speaker B

00:00:33.170 - 00:02:03.470

Thanks, Ewan. Thanks so much to you and the BJGP for inviting me to do the podcast and publishing the paper.

So, I guess my interest in people with dementia started when I finished my foundation training and I did a clinical fellowship year in London where I worked on a ward with people with dementia specifically. And at that time I wanted to be a care of the elderly doctor.

But I was struck by how many people kept coming in and out of hospital with dementia regularly. We'd spend ages trying to get them home. They go home for maybe one or two days and then sadly come back on this cycle.

And I think in reality, a lot of those people would probably have been better at home, even if that shortened their lives very sadly.

And it made me realise I wanted to work in the community with people with dementia, trying to improve healthcare in terms of advanced care planning and kind of planning for progression. So that's where my interest in dementia came in.

And I work in a practice in a relatively deprived area of Greater Manchester, and I always had an interest in health equity for kind of various reasons and health equity in terms of various lenses as well.

So when I was designing my PhD project, I decided to kind of focus on both aspects, so health inequalities in terms of deprivation and primary care for people with dementia.

Speaker A

00:02:03.870 - 00:02:08.270

I mean, I know we're going to touch another on some other stuff, but. Yeah. What surprised you most in the interviews?

Speaker B

00:02:09.390 - 00:02:47.530

I think in terms of what surprised me most in the interviews, I think I was actually struck by how much people wanted more health care from their primary care teams. It's not like they felt they were getting the best care or they were really kind of thrilled with what they were getting in lot of times.

But they were actually very trusting of their primary care teams and they really, really wanted more of that health care, which kind of struck me, really.

And I actually found it kind of quite touching and humbling, as a practicing GP myself, to know that we were really valued and that the care that we provide, people tend to want more of it rather than less.

Speaker A

00:02:47.610 - 00:03:21.390

Yeah, so that leads in nicely, because I wanted to ask you about one of the themes in your paper, which was the kind of proactive continuity.

And several of your participants described your wanting their GP to take the initiative, you know, to call them, to know them, so just to anchor their sense of self while the dementia progresses. There was a one man who had Alzheimer's who named it Ali. Was a kind of a. Was a striking example. You know, what, what kind of sense?

What does that tell us about what primary care needs to be doing? I mean, you mentioned there about how much it was appreciated, but what kind of. What do you think they can do more of?

Speaker B

00:03:22.000 - 00:04:42.080

Yeah, I think that kind of theme of proactive continuity splits into two, really. So I think the idea of being proactive is really important and people wanted their GPs not only to know them, but to actively contact them.

Sorry, I mean, not just their gps, actually their whole primary care team recognising that we all work together in our practices as well as that proactivity.

They wanted somebody who knew them, knew their family, knew their kind of history, knew the kind of outside of their life, rather than just their medical condition or their dementia. And that was really striking and came through kind of very strongly from most people who were interviewed, really.

And I interviewed people with dementia and carers and from both sides. That idea of being known by their primary care team did come through very strongly.

And I think for me as the interviewer and for me as a practicing gp, I also really like that side.

You know, knowing our patients, knowing that person, and being there for the kind of entire journey of a diagnosis to dementia all the way through to that progressing. It's a real privilege and I think it's something really precious for us as, as primary care teams, that continuity.

Speaker A

00:04:42.240 - 00:05:02.930

There was a bit of a gap. There wasn't. There's this kind of, oh, you know, there's potential gap in that.

And you mentioned this in the paper about the falling away support, that sometimes participants went to the memory clinic, then they were discharged, and then they felt a little bit like they, you know, they weren't picked up necessarily. I wondered if you could tell us a little bit more how that showed up in your interviews.

Speaker B

00:05:03.570 - 00:06:27.830

Yeah, yeah, for sure. So I guess everybody, everyone did describe a kind of different journey.

And I don't want to just generalize, but the sentiment or the feeling I got from most people was that there was concern around a possible diagnosis, a kind of flurry of activity around when the diagnosis was made, referral to memory clinic, lots of calls.

Somebody described a mind boggling array of things being offered around that time of diagnosis and then after that things seeming to kind of fall away. So somebody described the specialist dropped them and they were seen by memory clinic, started on medication and then just left back to the gp.

So that idea of kind of there being a flurry of activity and then things gradually dropping away and that being a paradox because actually people felt that their needs generally increased as time went on. So that was very interesting really. And I've also done.

It's kind of not a published paper yet and it's still being worked up, but I've done some interviews with primary care providers as well and that seemed to kind of come through as well from them and that there is a flurry of activity around one point around diagnosis. But then as time goes on do things do seem to kind of drop off and change. So it's perhaps felt from both sides as well.

Speaker A

00:06:27.830 - 00:07:03.200

Yeah. Let's talk a little bit about when sometimes it doesn't happen so much or people who knew the system.

And there was definitely an interesting rather novel finding that came out and I guess it's something we might be aware of, but I haven't seen too many papers that have highlighted it, that if there was someone in the family who knew the system, that was often perceived as crucial and it sort of implies a system rewards social capital or maybe it's just very specific to medical systems. But I wondered if you could, you know, how worried should we be about that? What can primary care do to address it or to flatten those kind of.

Those kind of flatten it out. If there is a. If it is an inequality.

Speaker B

00:07:04.000 - 00:08:54.200

Yeah, I think a great question and I also thought this was one of the most interesting themes to come out of the paper actually.

So just to kind of describe it, a lot of people described how if they had a family member or a friend who knew a little bit about the healthcare system, so if they'd worked in research or if they'd worked in social care, they would be called upon to kind of navigate this complexity of the system and it kind of came through that they would know who to contact, know how much to push, know what strings to pull to get somebody seen. And that insider knowledge, how we termed it, seemed crucial in kind of getting things done.

And, and that was described in detail by one participant in particular.

But they hadn't necessarily learned that through a professional role, they'd learnt it over years of caring for somebody with dementia and they kind of had learnt these little workarounds and trade offs that they had to make in order to get timely, safe, accessible primary care for that person.

And I think in terms of us as primary care providers, I would say what we could do to change that is maybe avoiding what I termed a computer says, no approach.

So if somebody asks for an appointment or a little bit of flexibility, rather than saying, oh, there's nothing available today, you'll have to call back tomorrow at 8am, perhaps recognising that there needs to be that flexibility in the system and perhaps in those situations, try to do whatever you can, whether that be signposting, asking for a little bit of advice from kind of a clinical colleague, or even squeezing somebody in at the end of the day, which I know we all try to do and sometimes isn't feasible.

But for people who struggle with dementia and their carers, life is often very difficult and we can sometimes make it a little bit easier by what might not be a huge tweak to our working day.

Speaker A

00:08:54.840 - 00:09:38.040

It's fascinating, isn't it, because so many of the papers that we cover and have conversations that they. I mean, it's all related to access and pressure on the system and how the most vulnerable people navigate through the systems.

And as the pressure ramps up, it's almost.

It feels almost like it's been inevitable and certainly I've written about this in the past, that these difficulties of people, you know, the system gets more complex and, you know, the more complex patients are harmed by, you know, the most complex systems. And when there's pressure on the system, how do you.

How do you think your sense of being a GP fed into, you know, you must be aware of that from the other side as well, from the. Obviously in the. How it fed into, how you went about the interviews. So that reflexivity side of things, how did.

Speaker B

00:09:38.040 - 00:09:38.360

Yeah.

Speaker A

00:09:38.360 - 00:09:42.560

What did you bring to it that you felt that was you. You. That was very notable to you, Charlotte?

Speaker B

00:09:43.590 - 00:11:30.840

Yes, I think it's a great question.

And with any qualitative research, and indeed sometimes even with quantitative research, it's really important to consider your reflexivity, your own biases, kind of how you're situated within that research. For me, it goes back to the first question you asked me, really.

I went into these interviews with a kind of a bias, I suppose, or an idea that I feel primary care is the right place to be providing this health care for people with dementia. I think we're well suited to it because of our longitudinal relationships.

The Fact that our job is rooted in compassion for people that we know and care about within our communities. And so I kind of did go at it at that angle, really, that I felt we should be providing this care and trying our best to do it as well as possible.

And kind of interestingly as well, the participants picked up on me as a gp, but it didn't stop them kind of really telling me the truth, I think. And they'd often preface things with, oh, I know you're a gp, but this, this and this happened.

And I found that quite nice, really, that they kind of felt they could open up a little bit more, particularly towards the end of interviews. And also I'm originally from a relatively deprived part of the UK as well, so that kind of idea of being within the group that I was.

That were participating in the research was also quite interesting and I think was recognised by the participants as well, enabling them to open up a little bit more about their experiences, perhaps, and somebody who they perceived as being outside that group. And so, yeah, I mean, fascinating sociologically, really, my role in the interview, how I was perceived by the people I was being interviewed.

I was interviewing as well.

Speaker A

00:11:31.000 - 00:11:45.570

Yeah.

Okay, so if a gp, someone else in primary care is listening, listening to this, and they're seeing someone with dementia later on this week or in this, you know, whenever they're in clinic, what's the single thing your study would suggest they do differently?

Speaker B

00:11:46.450 - 00:12:51.000

I think it goes back to the proactivity and continuity.

And from the interviews, I think what came through most strongly is people want to be known and they want to feel cared for as their condition progresses. So I would say a regular check in or phone call could be very meaningful to that person with dementia or their carer.

It would probably take less than five minutes of our working day, but just putting a note on the calendar to ring in three or six months time. How are you getting on? Is there anything that we can do?

Could the care coordinator come out and help, checking that the care plans are all in place and that people are kind of ticking along? Okay.

We'd be unlikely to make any significant changes, but that feeling of being cared for and having somebody with them on that journey, I think could perhaps be. Be very meaningful.

So that would be the one thing I would suggest, really, that kind of proactive continuity and making an effort to communicate that healthcare around dementia, really.

Speaker A

00:12:51.400 - 00:12:58.360

Charlotte, I think that's a really excellent note to finish on. It's a lovely study. Thank you very much for taking the time to speak to us today. We're very grateful. Thank you.

Speaker B

00:12:59.080 - 00:12:59.960

Thanks Ewan.

Speaker A

00:13:00.600 - 00:13:15.890

And thank you all very much for your time and for listening to this BJGP podcast. Charlotte's original research article can be found on bjgp. Org and the show notes and podcast audio can be found at bjgplife. Com.

Thanks again for listening.

Hello and welcome to BJ GP Interviews.

I'm Ewan Lawson and I'm the editor of the BJ gp.

Thanks for listening to the podcast today.

In this episode, we are speaking to Charlotte Morris.

Charlotte is a GP and doctoral research fellow at the University of Manchester and we have recently published her paper, Experiences of Primary Care for People with Dementia from Socioeconomically Disadvantaged Areas A Qualitative Study.

So, Charlotte, first of all, what I'd like to ask you is how did you come to focus on people with dementia in deprived areas specifically, and what surprised you most in the interviews?

Thanks, Ewan.

Thanks so much to you and the BJGP for inviting me to do the podcast and publishing the paper.

So, I guess my interest in people with dementia started when I finished my foundation training and I did a clinical fellowship year in London where I worked on a ward with people with dementia specifically.

And at that time I wanted to be a care of the elderly doctor.

But I was struck by how many people kept coming in and out of hospital with dementia regularly.

We'd spend ages trying to get them home.

They go home for maybe one or two days and then sadly come back on this cycle.

And I think in reality, a lot of those people would probably have been better at home, even if that shortened their lives very sadly.

And it made me realise I wanted to work in the community with people with dementia, trying to improve healthcare in terms of advanced care planning and kind of planning for progression.

So that's where my interest in dementia came in.

And I work in a practice in a relatively deprived area of Greater Manchester, and I always had an interest in health equity for kind of various reasons and health equity in terms of various lenses as well.

So when I was designing my PhD project, I decided to kind of focus on both aspects, so health inequalities in terms of deprivation and primary care for people with dementia.

I mean, I know we're going to touch another on some other stuff, but.

Yeah.

What surprised you most in the interviews?

I think in terms of what surprised me most in the interviews, I think I was actually struck by how much people wanted more health care from their primary care teams.

It's not like they felt they were getting the best care or they were really kind of thrilled with what they were getting in lot of times.

But they were actually very trusting of their primary care teams and they really, really wanted more of that health care, which kind of struck me, really.

And I actually found it kind of quite touching and humbling, as a practicing GP myself, to know that we were really valued and that the care that we provide, people tend to want more of it rather than less.

Yeah, so that leads in nicely, because I wanted to ask you about one of the themes in your paper, which was the kind of proactive continuity.

And several of your participants described your wanting their GP to take the initiative, you know, to call them, to know them, so just to anchor their sense of self while the dementia progresses.

There was a one man who had Alzheimer's who named it Ali.

Was a kind of a.

Was a striking example.

You know, what, what kind of sense?

What does that tell us about what primary care needs to be doing?

I mean, you mentioned there about how much it was appreciated, but what kind of.

What do you think they can do more of?

Yeah, I think that kind of theme of proactive continuity splits into two, really.

So I think the idea of being proactive is really important and people wanted their GPs not only to know them, but to actively contact them.

Sorry, I mean, not just their gps, actually their whole primary care team recognising that we all work together in our practices as well as that proactivity.

They wanted somebody who knew them, knew their family, knew their kind of history, knew the kind of outside of their life, rather than just their medical condition or their dementia.

And that was really striking and came through kind of very strongly from most people who were interviewed, really.

And I interviewed people with dementia and carers and from both sides.

That idea of being known by their primary care team did come through very strongly.

And I think for me as the interviewer and for me as a practicing gp, I also really like that side.

You know, knowing our patients, knowing that person, and being there for the kind of entire journey of a diagnosis to dementia all the way through to that progressing.

It's a real privilege and I think it's something really precious for us as, as primary care teams, that continuity.

There was a bit of a gap.

There wasn't.

There's this kind of, oh, you know, there's potential gap in that.

And you mentioned this in the paper about the falling away support, that sometimes participants went to the memory clinic, then they were discharged, and then they felt a little bit like they, you know, they weren't picked up necessarily.

I wondered if you could tell us a little bit more how that showed up in your interviews.

Yeah, yeah, for sure.

So I guess everybody, everyone did describe a kind of different journey.

And I don't want to just generalize, but the sentiment or the feeling I got from most people was that there was concern around a possible diagnosis, a kind of flurry of activity around when the diagnosis was made, referral to memory clinic, lots of calls.

Somebody described a mind boggling array of things being offered around that time of diagnosis and then after that things seeming to kind of fall away.

So somebody described the specialist dropped them and they were seen by memory clinic, started on medication and then just left back to the gp.

So that idea of kind of there being a flurry of activity and then things gradually dropping away and that being a paradox because actually people felt that their needs generally increased as time went on.

So that was very interesting really.

And I've also done.

It's kind of not a published paper yet and it's still being worked up, but I've done some interviews with primary care providers as well and that seemed to kind of come through as well from them and that there is a flurry of activity around one point around diagnosis.

But then as time goes on do things do seem to kind of drop off and change.

So it's perhaps felt from both sides as well.

Yeah.

Let's talk a little bit about when sometimes it doesn't happen so much or people who knew the system.

And there was definitely an interesting rather novel finding that came out and I guess it's something we might be aware of, but I haven't seen too many papers that have highlighted it, that if there was someone in the family who knew the system, that was often perceived as crucial and it sort of implies a system rewards social capital or maybe it's just very specific to medical systems.

But I wondered if you could, you know, how worried should we be about that?

What can primary care do to address it or to flatten those kind of.

Those kind of flatten it out.

If there is a.

If it is an inequality.

Yeah, I think a great question and I also thought this was one of the most interesting themes to come out of the paper actually.

So just to kind of describe it, a lot of people described how if they had a family member or a friend who knew a little bit about the healthcare system, so if they'd worked in research or if they'd worked in social care, they would be called upon to kind of navigate this complexity of the system and it kind of came through that they would know who to contact, know how much to push, know what strings to pull to get somebody seen.

And that insider knowledge, how we termed it, seemed crucial in kind of getting things done.

And, and that was described in detail by one participant in particular.

But they hadn't necessarily learned that through a professional role, they'd learnt it over years of caring for somebody with dementia and they kind of had learnt these little workarounds and trade offs that they had to make in order to get timely, safe, accessible primary care for that person.

And I think in terms of us as primary care providers, I would say what we could do to change that is maybe avoiding what I termed a computer says, no approach.

So if somebody asks for an appointment or a little bit of flexibility, rather than saying, oh, there's nothing available today, you'll have to call back tomorrow at 8am, perhaps recognising that there needs to be that flexibility in the system and perhaps in those situations, try to do whatever you can, whether that be signposting, asking for a little bit of advice from kind of a clinical colleague, or even squeezing somebody in at the end of the day, which I know we all try to do and sometimes isn't feasible.

But for people who struggle with dementia and their carers, life is often very difficult and we can sometimes make it a little bit easier by what might not be a huge tweak to our working day.

It's fascinating, isn't it, because so many of the papers that we cover and have conversations that they.

I mean, it's all related to access and pressure on the system and how the most vulnerable people navigate through the systems.

And as the pressure ramps up, it's almost.

It feels almost like it's been inevitable and certainly I've written about this in the past, that these difficulties of people, you know, the system gets more complex and, you know, the more complex patients are harmed by, you know, the most complex systems.

And when there's pressure on the system, how do you.

How do you think your sense of being a GP fed into, you know, you must be aware of that from the other side as well, from the.

Obviously in the.

How it fed into, how you went about the interviews.

So that reflexivity side of things, how did.

Yeah.

What did you bring to it that you felt that was you.

You.

That was very notable to you, Charlotte?

Yes, I think it's a great question.

And with any qualitative research, and indeed sometimes even with quantitative research, it's really important to consider your reflexivity, your own biases, kind of how you're situated within that research.

For me, it goes back to the first question you asked me, really.

I went into these interviews with a kind of a bias, I suppose, or an idea that I feel primary care is the right place to be providing this health care for people with dementia.

I think we're well suited to it because of our longitudinal relationships.

The Fact that our job is rooted in compassion for people that we know and care about within our communities.

And so I kind of did go at it at that angle, really, that I felt we should be providing this care and trying our best to do it as well as possible.

And kind of interestingly as well, the participants picked up on me as a gp, but it didn't stop them kind of really telling me the truth, I think.

And they'd often preface things with, oh, I know you're a gp, but this, this and this happened.

And I found that quite nice, really, that they kind of felt they could open up a little bit more, particularly towards the end of interviews.

And also I'm originally from a relatively deprived part of the UK as well, so that kind of idea of being within the group that I was.

That were participating in the research was also quite interesting and I think was recognised by the participants as well, enabling them to open up a little bit more about their experiences, perhaps, and somebody who they perceived as being outside that group.

And so, yeah, I mean, fascinating sociologically, really, my role in the interview, how I was perceived by the people I was being interviewed.

I was interviewing as well.

Yeah.

Okay, so if a gp, someone else in primary care is listening, listening to this, and they're seeing someone with dementia later on this week or in this, you know, whenever they're in clinic, what's the single thing your study would suggest they do differently?

I think it goes back to the proactivity and continuity.

And from the interviews, I think what came through most strongly is people want to be known and they want to feel cared for as their condition progresses.

So I would say a regular check in or phone call could be very meaningful to that person with dementia or their carer.

It would probably take less than five minutes of our working day, but just putting a note on the calendar to ring in three or six months time.

How are you getting on?

Is there anything that we can do?

Could the care coordinator come out and help, checking that the care plans are all in place and that people are kind of ticking along?

Okay.

We'd be unlikely to make any significant changes, but that feeling of being cared for and having somebody with them on that journey, I think could perhaps be.

Be very meaningful.

So that would be the one thing I would suggest, really, that kind of proactive continuity and making an effort to communicate that healthcare around dementia, really.

Charlotte, I think that's a really excellent note to finish on.

It's a lovely study.

Thank you very much for taking the time to speak to us today.

We're very grateful.

Thank you.

Thanks Ewan.

And thank you all very much for your time and for listening to this BJGP podcast.

Charlotte's original research article can be found on bjgp.

Org and the show notes and podcast audio can be found at bjgplife.

Com.

Thanks again for listening.