Life Beyond Aphasia: Supporting Care Partners and Building a Movement

Hosts Rob Edwards and Jonathan Hirons introduce guest, Genevieve Richardson, a US speech-language pathologist, focuses on supporting “care partners,” arguing recovery improves when caregivers receive training and support to prevent burnout. They compare UK and US support systems, discussing variability in access, the role of insurance and advocacy, and the importance of in-person and online groups to combat isolation. Genevieve describes her telepractice, 12-month care partner roadmap with weekly training and live support, plus a bootcamp and membership, addressing communication strategies and practical life needs like legal and emergency planning. They discuss collaboration via new websites and resources, and share links to the film and Genevieve’s podcast and sites.

00:00 Aphasia Needs Action
00:12 Podcast Welcome and Aphasia Basics
01:09 Care Partners Matter
02:05 US vs UK Support Systems
04:20 Groups and Ongoing Resources
06:46 Genevieve Care Partner Roadmap
10:24 How the 12 Month Program Works
11:42 Community Fights Isolation
13:05 Scaling Up and The Numbers
14:16 Life Logistics and Caregiver Tools
17:50 Building a Global Movement
19:07 Aphasia Energy and The Gas Tank
20:28 New Website and Collaboration
21:52 Genevieve Podcast and Bootcamp
23:13 Wrap Up Links and Resources
24:44 Final Credits and Sign Off

Genevieve's websites:

https://www.dolifespeechpathology.com

https://www.lifeaphasiaacademy.co

Transcript

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SPEAKER_00 0:00

This has to be a movement. If if we want folks with aphasia to live a life beyond aphasia, we gotta help them do it. It's not just gonna have hoping and praying doesn't do it.

SPEAKER_01 0:13

Hi, and welcome everybody, and we hope you enjoy this podcast called On the Tip of My Tongue. Now, I'm Rob Edwards, and I'm Jonathan Hyron. This podcast is a follow-up to a film which Jonathan made about a phasia. So, what is a phasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a bike. And it affects your ability to use language in order to form speaking, writing, reading, sending text, whatever. 350,000 people in the UK suffer from a debilitating condition called aphasia. Fewer than half this number suffer from Parkinson's. And yet, most people have heard of Parkinson's, whilst almost nobody has heard of aphasia.

SPEAKER_00 1:09

I'm Genevieve, and I have a passion for aphasia care partners. I've worked with families with aphasia for over 30 years, and I realize that there is a gap in the system. And that gap is that us professionals expect the carer, the caregiver, to take on all of this responsibility, but not give them the way forward and how to do it and how not to burn out. And what we do know from research is that the best aphasia recovery is when the carer is supported. When the carer knows what to do, then they can properly support the recovery of their loved one.

SPEAKER_02 1:56

Thank you. And thank you for coming on the tip of my tongue podcast. It's great to have you here. Early in the morning for you, later in the afternoon for me. Let's talk a little bit about the differences between the US and the UK when it comes to help for people with aphasia. Now, in this country, it's a bit of a lottery, basically. Sometimes you get good help, sometimes you don't. What's the state in America? What's your take on it?

SPEAKER_00 2:23

So most everyone will get help, but depending on their insurance level, because we have all different kinds of levels here as to what kind of help they get. And sometimes the difference is the advocacy of the care partner. I refer to them as care partners. I know you use in the UK carers. So just so that the audience knows we're talking about the same thing. When you can advocate and you can say, no, we need something different, we need something better. Sometimes it's possible to get something better, something more comprehensive.

SPEAKER_02 3:02

I think it is very similar in the UK as we have a free, basically free health care. However, people do pay. And to some people who have aphasia have I know of that have paid privately, most people will be full will go into the state system. Now over here, you might get a good deal, you might not. For example, where I am, I got six weeks of speech and language therapy. Because that's what you get. And I had to wait probably a month for that. Some people get nothing, and some people get quite a lot, depending on where in the country they live. One of the problems is that not enough people know about aphasia and know enough about it to know to go forwards with it.

SPEAKER_00 3:51

I would agree. And there's one thing to know about aphasia, and it's another thing to know how to support the person who has aphasia. It's another thing to live day to day with a person who has aphasia from the care partner perspective. But also for someone like yourself with aphasia, you had to figure out what was happening with your own communication.

SPEAKER_02 4:17

Do you have groups in the US? What happens over here is most people get together, people with a aphasia basically, get to with a peer leader and they will sort themselves out. Is that an experience that you've had?

SPEAKER_00 4:33

We have a variety of options. So you have the rehab that insurance pays for, and then when you're discharged from that system, we do have online groups, telepractice, Zoom, since COVID has become a very big thing. And most everybody, if they have access to the technology, can get on it. So there are many online, and then there's there are in-person aphasia groups as well. But with it being such a big country, it's a little harder to get all those same kind of resources everywhere. Then there's programs, there's day treatment programs, there's intensive programs, there's what I do, which is a private practice. So we do have a variety of options, but not everybody realizes they need to sort those things out, as you put it.

unknown 5:26

Yeah.

SPEAKER_00 5:26

Sometimes they just get discharged from rehab and they go home and sit on the couch and don't know that there's another option.

SPEAKER_02 5:34

And I think that's where the groups come in. There's quite a lot of groups around the country, uh obviously smaller country and all that, but it's still we still have distances. So therefore, it may take an hour and a half to get to a group. It isn't a group in every city, there isn't a group in every town. There's a a charity called Saaphasia who are trying to do that, and they've got 30 or 40 groups, I think.

SPEAKER_00 6:01

That's amazing.

SPEAKER_02 6:02

Which is from vir virtually from nothing. And it they're adding them every two or three months, I think, as somebody in different parts of the country. Which is good for obviously, and therefore that will help more people know that something's going on.

SPEAKER_00 6:20

Absolutely. There are a couple of amazing nonprofits that provide ongoing support and conversation groups. There's some of us that are on YouTube giving education, some do actual speech therapy, others of us are doing education and trying to meet people where they are and give them information so that they don't feel so alone.

SPEAKER_02 6:43

So let's talk about your work. You're about spreading the word, I would say, and giving people opportunities to get help.

SPEAKER_00 6:52

Absolutely. Both from the aphasia perspective, the person with aphasia. But my biggest passion right now is working with the care partners. Right. Helping them find that way forward so that they can support it because it's this whole system. It needs to be. It can't just be all focused on the one person because the caregiver needs support and help and training. And the decoder ring, as I think of it, because every aphasia is different. You really have to understand your person's aphasia and how to work with and within that.

SPEAKER_02 7:30

Yours is quite a what shall I call it? A no, I can't think of the word scotch.

SPEAKER_00 7:37

On the tip of your tongue, perhaps?

SPEAKER_02 7:39

It certainly is. As a podcast like that, this is edited. This is edited.

SPEAKER_00 7:44

I love it.

SPEAKER_02 7:45

Yeah, so you're giving a custom service for people. Is that correct? Yeah, I am. Okay. Yes.

SPEAKER_00 7:50

I've mapped it all out. And so it really came down to what do care partners need to understand? If they're overwhelmed and exhausted because they're managing the day-to-day, right? Because they had to pick up where their person couldn't do certain things. They had to pick those up. So first we help them build a system so that it's sustainable, so that they can take a break, so they can start sleeping better at night and not be so worried. And then we help them understand about aphasia and communication techniques. And how do you rebuild communication and connection with your person? Because depending on how long it's been, if I can get somebody in the program sooner, like after rehab ends, it's easier to not have those bad habits to break. The distance increases between the couples. I work primarily with spouses. But that distance increases the further away you are from the onset of aphasia. So there's more work to be done in there. There's more burnout that has to be addressed.

SPEAKER_02 9:05

So getting to that, get to that point as quickly as possible, basically. Absolutely.

SPEAKER_00 9:10

That's the system-wide change that I really want to see happen, not only in the US, but everywhere else. So, how can we partner to give quality of life? Not just rehab, but focus on what comes next. How do we move forward? Not here's your discharge packet. See ya.

SPEAKER_02 9:32

That's how it works.

SPEAKER_00 9:34

That is how it works. And it's unfortunate because I've been, as a speech pathologist, I've worked the last 14 years in the chronic aphasia space. And that's very different from in the rehab space, which I have done for the other 15 years of my career. So these last 14 years, when the care partners come on and say, I would love to do these strategies, but I'm exhausted or I don't know how to apply them. And when you only get a certain amount of time to work with somebody in a session, you're trying to focus on the person with aphasia. But that care partner needs more and more support so that they can learn those strategies to apply.

SPEAKER_02 10:21

You have sessions, presumably these are online, are they mainly?

SPEAKER_00 10:24

Correct. Yes. I'm exclusively telepractice.

SPEAKER_02 10:27

Okay. So they get hold of you. This is a situation. So do you have a number of sessions with them? Is that how it works?

SPEAKER_00 10:36

Or with the care partner? With a care partner. I actually have a roadmap. And it's about a 12-month program. Each week is a training plus a live support session. Right. And we open that up twice a year. And that's what we are coming up on at the end of April. We're opening the doors, so to speak, to that. And everybody starts at the same place, but they get support week by week, going through it, learning step by step, so that it's not overwhelming.

SPEAKER_02 11:09

Just trying to get understand the process. So is it set sets of learning each week? A different set of things. And they complete that and then they go to the next week, and so it goes on. Correct.

SPEAKER_00 11:21

So we release a training every week. It's about a 20-minute training with a it's a video and they get PDF to go with it, and then they come to a live group if they choose to, and then we talk about it. Okay. And we problem solve.

SPEAKER_02 11:37

As a group rather than what happens over here with the the face-to-face groups. That's the way they seem to work. I first met when I had my aphasia, I met the group nearest to me. And it's an incredible group because they just because they've all got the same problem for a start. That's right. So everybody's at the same level. And basically there's a lot, there's a lot of fun that he's had. People enjoy that and look forward to it every week or whatever.

SPEAKER_00 12:11

Aphasia shrinks your world, doesn't it? You have it it shrinks it. And then when you get with people who understand, they might be a little ahead of you, they might be behind you, but you all learn and grow together. And that's that community that is so very important to fight isolation.

SPEAKER_02 12:30

And obviously, some of the care givers come with it as well. So they become a group within within themselves. It must have taken a long time to put that together.

SPEAKER_00 12:41

It's been a passion project. I've been actively working on it for four years. I've been in a pilot with it for the last two years.

SPEAKER_02 12:48

Okay.

SPEAKER_00 12:49

And we're just winding down on the end of the roadmap. We're it's in three phases. We're starting phase three with my pilot program. And now we're ready to welcome new people in to the beginning of it.

SPEAKER_02 13:02

So, what is your hope in terms of you're obviously you're trying to cover as much of the country as you possibly can? Is there a point where you've got too many people to deal with, or have you got some to help you as you go along?

SPEAKER_00 13:16

When I have that problem, I will sort of without that's absolutely the problem I want to have. But I will tell you, Jonathan, I do have small but mighty staff that works with me. They're non-clinical, but they help me do everything that I do. Building this program is, like I said, a passion project, but I also have speech pathologists that work with me. So, you know, we have the capacity, we've thought about how do we scale this, and we are ready. When we are ready for those tons of people that want to, we can support them.

SPEAKER_02 13:54

I think it's 350,000 in the UK. Do you know how many in the US? No?

SPEAKER_00 14:00

I keep hearing the number two million.

SPEAKER_02 14:03

Yeah, so two million, yeah.

SPEAKER_00 14:05

Yeah, and that's just the persons with aphasia. That's not the care partners caring for them. Maybe it's two people that are care partners.

SPEAKER_02 14:13

Even more. So the the problems, uh obviously the difference is depending on the person, but it's got things like uh dealing with bank accounts, dealing with the IRS or whatever it might be. So that somebody has to take that on, don't they?

SPEAKER_00 14:28

100%. And most people don't know where to start. Often it's the man who ha who may have been doing the finances and doing those kinds of decisions. Sure. And the female spouse is do has other roles, she may have to now take on those financial responsibilities and not know where to start. Right. Or maybe she does have a clue but needs to be very wise.

SPEAKER_02 14:53

Yeah.

SPEAKER_00 14:53

So not only do we talk about aphasia and communication, we talk about life. I interview people from on my show that are elder law attorneys, people who focus in Medicare, which is one of the primary government insurance payers here in the U.S., talking about self-care with life coaches, whatever it we work to be comprehensive. How do you set up your emergency system? Do you have your legal documents, your powers of attorney? Who can make decisions for you? Who are you gonna call in an emergency? These are things that a stressed, overwhelmed caregiver is not thinking about. They might have that thought in the back of the head, and that might be the thought, I gotta set that up. But how do they carve out the time in the day to go figure that out? So that's wherever we try work very hard to give support, education, templates. I'm a big proponent of scripts.

unknown 16:00

Right.

SPEAKER_00 16:00

And what I mean by scripts is how do you have the conversations? How do you ask the right questions when you go to the doctor's appointment? How do you make sure you have your legal documents? Here's your checklist to take with you to make sure you're thinking about all these things.

SPEAKER_02 16:19

It's a frightening thought, isn't it?

SPEAKER_00 16:22

It's overwhelming.

SPEAKER_02 16:23

Overwhelming, yeah.

SPEAKER_01 16:24

Before we get back to the conversation, I wanted to mention a really important update to our website. We know that navigating aphasia isn't just a journey for the person with the diagnosis, it involves a whole network of people. That's why we've launched two dedicated areas at tipofmytonguefilm.com. First, there's a news section specifically for professionals, whether you're a speech and language therapist, a medical professional, or a student. It's designed to provide resources and insights to help you support your patients even better. And second, we have a section for carers and families. We know how isolating it can feel when a loved one loses their words. This page is there to offer you support, information, and a reminder that you aren't alone. So if you're listening and you work in the field, or if you're caring for someone with aphasia, please do head over to tipofmytonguefilm.com and click on the professionals or carers tabs. And if you have a story to share or a question to ask, you can send us a message directly through the site. We'd love to hear from you.

SPEAKER_00 17:49

I put myself in their shoes very often. I've been happily married a very long time, and if something like this were to occur with my own spouse, I know there's a lot that I'm gonna have to learn and pick up from. But the converse is also true.

SPEAKER_02 18:08

Cook.

SPEAKER_00 18:09

He knows how to make a stir fry, he'll survive, right? But he'd much rather I be the one who It's fascinating the thing that you're doing, actually.

SPEAKER_02 18:18

You're thinking on the right lines for lots of people and you're helping them do their thinking, not do their thinking for them, but help them to think through what they're doing.

SPEAKER_00 18:27

The structure. Because when you've got a guess, that's part of the things that is so exhausting. You're like, oh, should I do this now, or is this the next priority? For anyone who started an exercise program, you don't want your new exercise coach to give you three choices of what you want to do. You go to them so they make the decision and you execute.

SPEAKER_02 18:50

Indeed.

SPEAKER_00 18:52

And so I think of it from that perspective. So I've taken my own clinical experience and my life experience to create this roadmap and so that we do have that structure to fall back on. And then we can see where there's gaps or holes and we can fill them.

SPEAKER_02 19:12

Changing the subject slightly, we had the last podcast with someone who works for a European network of problems with with aphasia. So she's so she speaks many languages, so that helps, obviously. So she goes all over Europe, which Europe Europe uh as a as a whole is probab about the same size as America. It's near enough anyway. So she goes across Europe and they've got I think I think it's six or seven countries that are actively involved in getting aphasia known in their country. It's a network, and I was just thinking maybe that's where your network could connect with that network, because then you've got another bunch of people, different languages, but that you can overcome that.

SPEAKER_00 20:06

But that's what it is. This has to be a movement. If we want folks with aphasia to live a life beyond aphasia, we gotta help them do it. It's not just gonna have hoping and praying doesn't do it, right? Action, action and steps forward and having a community that can support and understands you. Right, yeah. So critical.

SPEAKER_02 20:29

Unfortunately, aphasia never goes away, does it? You might get better at it, but it's not gonna go away, is it?

SPEAKER_00 20:35

And isn't that how you have felt it in your own recovery? You still have days that it's more challenging, probably morning versus afternoon, or if you have a cold or other things influence it.

SPEAKER_02 20:51

Sometimes there's only so much you can then you can't you can't do anymore.

SPEAKER_00 20:55

You're done.

SPEAKER_02 20:55

You're done. Exactly. You're done for the day.

SPEAKER_00 20:58

I think of it as a gas tank. You wake up in the morning, and this is for anybody, but for the person with aphasia, there's different variables that drain that gas quicker.

SPEAKER_02 21:09

That's true, yeah.

SPEAKER_00 21:10

And by understanding it, putting something that is abstract, which is aphasia and communication, and making it concrete with the thought of a gas tank like you have in your car, you can only drive so many miles on that gas tank, right? And if you're on the highway versus in the city, you have a little bit of variables, but overall it's predictable. So if you know that crowds drain you and background noise drains you, those things can be controlled for. But the care partner can't control for that if they don't understand it all.

SPEAKER_02 21:50

Moving on, we've got an I've got a new website, we've got a new website. And this is pertinent to what we're talking about. And what we want to do is get people to be int if you're a care giver and or you're a professional to go to the website and find out what they might need to do what they're going to do. It's early days, but we're going to ask people to join in and give their experiences by video or whatever it might be to put onto the website so it becomes a resource. A resource for obviously the UK to begin with. But this is something I'm just thinking there's something that we can possibly pass over to you and maybe if you've got things that you we can give us and we can give you.

SPEAKER_00 22:38

We go both ways.

SPEAKER_02 22:39

Sounds like a perfect marriage.

SPEAKER_00 22:42

Exactly let's do this for the Evasia community. Yeah yeah and that that's part of why I love the opportunity to speak with hosts such as yourself. Plus you've got the real life experience of Avasia.

SPEAKER_02 22:58

Yeah that helps I think with for the podcast for our podcast it helped because I know it's I'm not I'm not just hosting something. I've actually lived it as well which is a different thing isn't it altogether. So you have a podcast as well is that right?

SPEAKER_00 23:16

I do. It's Life Beyond Aphasia.

SPEAKER_02 23:19

So that's going to feed into what you're talking you've been talking about earlier.

SPEAKER_00 23:24

So it's on all the podcast platforms and on YouTube at the same year.

SPEAKER_02 23:28

And your your program is that on YouTube as well or do people have to pay for that to get into it?

SPEAKER_00 23:34

What's they have to pay for that to get into it. It's a month by month and we open the doors twice a year to that. So we're going to be running a three-day boot camp for carers for care partners where we start the process of giving them that breathing room. What that means is getting control over their day-to-day schedule and calendar management and getting some support. That's what kept them going that will absolutely it's a very intentional very intentional and it leads very nicely into the collective which is our care partner membership. It sets some of that foundation already because we got to get a breathing room first. Just like any other time you feel stressed it's hard to process additional information and task.

SPEAKER_02 24:24

Sure.

SPEAKER_00 24:25

So we give some structure in breathing room first.

SPEAKER_02 24:28

Fantastic I wish you lots of luck with that's it'd be incre incredible. And does anything else you want to talk about?

SPEAKER_00 24:39

Oh I think we could probably be here for a couple more hours but another time let's talk about aphasia and your lived experience. But I'd like to point out because I will be sharing this episode on my channel as well I want to direct people to your film. On the tip of my tonguefilm.com is your website and Jonathan has this lovely film where they've interviewed folks with aphasia so that you understand more lived experience because everybody's experience is so different. It's true it's a beautiful film and it's so well done thank you.

SPEAKER_02 25:19

Thank you very much.

SPEAKER_00 25:21

And I would love to share your film a link to your film on my website for care partners. I think it's wonderful what you've done.

SPEAKER_02 25:30

Thank you very much.

SPEAKER_00 25:31

And your website is Lifeaphasiaacademy is for care partners and I have a separate website for the private practice where I work with survivors with aphasia do life speechpathology.com brilliant great to talk to you great to talk to you you get on the rest of your day now yes as you wind up yours.

SPEAKER_02 25:59

As I wind up mine yeah thank you very much. Thank you John Great to see you.

SPEAKER_01 26:03

Bye bye see you bye bye you know Jonathan and I talk a lot on this podcast about the impact of aphasia but the conversation doesn't have to end here. If you're a carer someone who is the voice for a loved one every single day we've built a space on our website just for you. It's full of resources to help you navigate those tough moments. And for the professionals out there, the therapists and clinicians who are doing the vital work of rehabilitation we have a dedicated page for you too with materials you can use in your own practice. The website is tipofmytonfilm.com take a look explore the new pages and please send us a message tell us what you need or what your experience has been we're building this community together and your voice is the most important part of it thank you for listening to this on the tip of my tongue podcast we hope you found it helpful and informative. Now if you want more help and information about strokes and aphasia please go to stroke.org.uk Say aphasia that's S-A-Y aphasia or oneword.org or the aphasia page of NHS.uk That was on the tip of my tongue the podcast dedicated to raising awareness about aphasia to listen to more episodes click on support the show in the description this has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials.