Capturing Essence for Care: Storytelling that Promotes Personhood in Healthcare

8. Reclaiming Narrative Agency: How Stories Empower Persons Living with Dementia

• Lisa Joworski • Episode 8

Share episode

Send us a text

About Our Guest

Laura Bowley is the Director of Communications & Development for To Whom I May Concern®, and a senior facilitator and trainer. Since 2012, Laura has collaborated with Maureen Matthews, blending participatory management, storytelling, and theatre to co-create narratives with individuals diagnosed with dementia. Inspired by her personal connection to the disease through her late mother who had vascular dementia, Laura supports others on similar journeys by engaging directly with those living with dementia.


Episode Key Messages

  • Laura developed the "Caring Conversations" toolkit through her personal dementia connection, bridging communication gaps between families and care providers.

  • "Conversation is at the heart of what we do" - TWIMC®'s approach focuses on transformative communication, shifting from talking about dementia as "it" to speaking in first person "I".

  • TWIMC® operates through theatre performances, structured support groups, and enhanced relationships that develop narrative agency.

  • Narrative Agency helps people with dementia reclaim their voice and identity when the disease strips away their stories.

  • People with dementia want normal treatment, requiring patience for slower processing speeds, not simplified content.

  • Sharing personal stories publicly transforms how participants perceive their dementia experience.

  • Small actions like genuine smiles profoundly impact well-being and connection for people living with dementia.


Resources

About Laura's Experience

Laura has authored In My World, led support groups for care partners, guided peer-led support groups for people with dementia, and consulted with organizations like Dementia Alliance International. With a Bachelor of Business Management and as a 2015 Fellow of the School for Social Entrepreneurs, Laura brings over 30 years of consulting experience in business systems design, project management, communications, and facilitation to her role at To Whom I May Concern®.

Listen now to discover how narrative agency can transform the experience of living with dementia, both for individuals diagnosed and those who care for them.

Thank you for listening!

Do you have a question or a topic related to "capturing essence for care" that you would like discussed on the podcast? Send Lisa an email: awestruckaspirations@gmail.com

Interested in learning more?

Intro and outro music with thanks: Upbeat and Sweet No Strings by Musictown

Lisa:

Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey. I'm your host, Lisa Joworski. Thank you, thank thank you for joining us, I'm very excited about this conversation. I have Laura Bowley joining, and Laura and I met probably a few months ago and because we realized that I think our ideas and our interests very much align my idea of capturing essence and the importance of knowing people's story in order to really give them a voice of their own and understand what really matters to them from their own perspective and how important that is. And Laura, she's the Director of Communications and Development for To Whom I May Concern, and is a senior facilitator and trainer. So, Laura, welcome and I'm so pleased to have you and I can't wait for this conversation.

Laura:

Oh, thank you so much, Lisa. I have to say that title sounds really grand when you read it out. My goodness,

Lisa:

You are grand! I could read the rest of it?

Lisa:

I would rather you share with us all of the qualifications and what makes you a perfect fit for us to talk about. This work. To To Whom I May Concern sounds so interesting, as does all of the other initiatives and things that you're working on, so I would love for you just to share whatever you want to start with, and we'll go from there.

Laura:

I should probably start with To Whom I May Concern, because we're talking about storytelling and it is the vehicle through which we're sharing the stories of people who are living with early-stage dementia. We also like to refer to our participants as people aware of cognitive changes. We're trying to find another word for dementia because often the groups don't really like that. Anyways, I digress so To Whom I May Concern at. Its essence is a vehicle for collecting and sharing the stories of people living with dementia so that we can learn from their stories. It gives them an opportunity to educate their friends, families, communities and the general public about what it is to live with dementia, because we really can't understand unless we talk to people directly about what that's like. And I can get more into the process, if you'd like, about how we do that later, but I love the idea of having conversations.

Laura:

I'm a facilitator, I guess, at heart, and what that means is guiding a group to have a conversation and possibly make do some brainstorming and make some recommendations and possibly make some decisions about a common goal.

Laura:

So I help people collaborate towards that. And it really when you're a facilitator, you're making sure that everybody is heard, that everybody gets a chance to speak, that everybody really has that equal opportunity and that all of their ideas are captured. So that's why we call the people who guide our sharing groups of people living with dementia we call them facilitators, because that's what they're doing they're guiding the conversation. They're not giving any kind of advice. They're not. It's a judgment-free zone when the group meets. So that's one of the things about To Whom I May Concern that I love that I can bring these facilitation skills to it, not only as a trainer myself and also as a person who's guided the groups, but just to think about new ways that we can have these conversations that we can. I'm really all about giving people who never get a chance to say anything the space to talk. And yes, I don't know, maybe that's because I was always the quiet kid in class or something like

Lisa:

Oh interesting!

Laura:

I don't know.

Lisa:

We might have some things in common there, that's funny.

Laura:

but, um, the the world of dementia.

Laura:

I got into that because of my mother who had vascular dementia and she passed away in 2008. And I'm saying vascular dementia, you know, she never actually had a diagnosis. Posthumously, the doctor thought that it was probably vascular dementia, maybe Alzheimer's disease as well, because usually people can have two different types of dementia going on at one time. So our family they lived in Ontario my mother and her husband and this was before even the Alzheimer's Society would help anybody who was simply dealing with cognitive issues. My stepfather worked up the courage to call the Alzheimer's Society one day, only to be told that she didn't have a diagnosis, so they couldn't help her. So we were really flailing. I know, I know and I'm sorry if anybody from the Alzheimer's Society is listening I know it's not like that now. I know that was our experience in like 2006. So it's okay, thank you for changing. So I think, coming out of that experience, there were so many things that I knew that we did wrong and knowing what I know now, it just kind of it kind of kills me that we never. I know I never did for sure and I don't think any of my other family members did.

Laura:

We never asked my mother what is it like to be you? What is it? Oh, you know I'm sorry you're not knitting anymore. Wait, what's that like for you? I know you used to really enjoy it. You know what's it like to not be reading. What is it like? What is it just like? We just, yeah, didn't talk about it at all and that's not good because there's just this elephant in the room. I mean we would the rest of the family would talk about it, but we wouldn't talk about with her. And you know there's so many things that can happen to a person who's having cognitive issues due to dementia if people don't talk to them. Anything from my feelings are important to just basically being like a person who's having hearing problems who, if they're not engaged in those conversations, it can make the symptoms worse. Right, because you know, we know we know about social engagement how important that is to healthy aging and well-being, to our cognitive health. So if you're sidelining somebody because it's a challenge to talk with them, then you're actually kind of harming them and I don't know how else to say it. So it's really important that we have that we work extra hard to have those conversations. So anyways, we didn't. So I set out After she passed away, I started reading more.

Laura:

I actually did. I did read a great book and I think I came across Richard Taylor. Dr Richard Taylor, who was diagnosed with Alzheimer's disease and wrote a book called Alzheimer's from the inside out, and that was his story of Alzheimer's disease, and wrote a book called Alzheimer's from the inside out, and that was his story of Alzheimer's disease and how he started off after his diagnosis, basically blocking himself in a room and watching TV all day until his brother encouraged him to. He said look, you were a professor, you spoke, all you spoke, and you write and you wrote. Why, why aren't you still doing that? So he just was very resilient and picked himself up and started looking for opportunities to write and his brother helped him write his book. And you know it's by. The world is a different place, I think because of Richard Taylor.

Laura:

I think a lot of our attitudes today towards people living with dementia and person-centered care and even the line you know, if you've seen one person with Alzheimer's, you've seen one person with you know that line. We can thank Richard for spreading that message around and I had the privilege of working with him for many years. As a result, we got to be quite close and so I had come across him, and so, a few months before my mother died, I started to realize that she might have dementia and she was largely paralyzed as well from a stroke. But she still had a lot to offer, and it wasn't her that needed to change and adapt, it was me, it was us. So what could I adapt?

Laura:

I discovered that she was very interested in reading still, so she could read greeting cards, for example, and so that's why I created a book for her to read, and that was my book called In my World, which is still available on Amazon, and I actually have just added to it in the second book called Winter Wonderland. And basically it's a picture book for adults, and for every picture there's a short story that's written in a large font and the story is complete on one page. A large font, and the story is complete on one page, and what was my thinking for that was to make sure that the person who's reading it felt successful, because it was just enough of a story that they could. They could read it, yeah, so that's kind of how I got started and I guess stories were my, my, in yeah, yeah, it all came together so, as a result of meeting Richard, I got involved with him with all kinds of stuff, with Alzheimer's Disease International.

Laura:

I worked with Dementia Alliance International for the first few years that they that they were getting going, and then I actually came across Maureen with To Whom I May Concern on Twitter, so I think it was the only time yeah, I think it was like the only time she'd ever tweeted something and I happened to read it and when I saw what she was doing, which was basically using theater to educate the public about the experience of living with dementia, it just sent chills down my spine. So I reached out to her immediately. And here we are 12 years later, 13 years later.

Lisa:

So that long? isn't that amazing?

Lisa:

Well it makes sense with your, with your background, and when it touches you personally with your mom, and then looking for the answers or looking to on how to make life you know better and what could you have done differently. I'm sure there was some of that then coming to these realizations that it's not her that needs to change, it's everyone else's approach and to adapt to what she needs that really makes sense. And seeing her differently right, not seeing her, as I don't even like the word dis-ease or dis-ease but to see what's there, what's there that maybe we're we're not able to find unless we know how to, unless we have the tools to know how to ask or what to look for, what to observe in our interactions.

Laura:

Exactly, I love that, actually, the tools to the tools to have that conversation, the tools to ask yeah, I certainly didn't have the tools. I feel better equipped now with my through my work with to Whom I May Concern. But we're actually working on a course now that is codenamed Caring Conversations oh I love it which is to create that toolkit. I mean, it's going to be a course or a program, but we're looking to create that toolkit to get over that gap, um, that exists between um people living with dementia and the outside world. And I mean what? What we hear time and time again from our sharing group members, all of whom are um diagnosed with a form of early stage dementia or mild cognitive impairment, is that they just want to be treated normally. So they just, you know, if we used to talk about hockey, let's talk about hockey. If we used to like reading poetry, let's read poetry. So one of the premises of To Whom I May Concern and the reason it's called To Whom I May Concern, I should back up and say To Whom I May Concern and the reason it's called To Whom I May Concern, I should back up and say To Whom I May Concern was founded by Dr Maureen Matthews, who is now a dear friend of mine and she's in Stanford, connecticut, and she was actually inspired by a diary that she was given and the diary was written by a woman who had Alzheimer's disease and she wrote it kind of, I guess, when she was going through the early stages, but it was quite extensive and Maureen learned so much about the experience of living with dementia through that diary and she was also struck by the fact that somebody who was diagnosed with Alzheimer's disease could have these insights to her experience.

Laura:

And, for example, one story was that this woman had taken her dog to the puppy school. What do they call it? Obedience classes. That's it, thank you. Anyways, her comment in her diary was that the dog understood the commands better than she did and yeah, and she just felt really stupid and you know things like that. But I think it's really important that we know these.

Laura:

And the reason that the program is called to whom I may concern, is because after diagnosis the experience of most people is that they are turned by the system really into an it. They used to be human, now they're an it, a, they're a bed one of my favorite things. They're a bed in a facility right, they are a statistic. Um, the disease, the stigma really dehumanizes them a lot. When somebody's diagnosed, the people around them tend to start thinking about the end stage and the story that we tell about the end stage, and it's really important that we understand that when somebody is in the early stages, their experience is not that of the end stage. They are very much still there. They're very much the same person. Just because they got that diagnosis last week they didn't have a diagnosis. Now they do have a diagnosis doesn't mean that they're not the same person.

Laura:

That's right that person very much differently and largely that's just going to create this insurmountable barrier that you think you can't have a conversation with that person. That really vital interaction that needs to happen. So by engaging people living with dementia in what we call a sharing group so that's a group setting, it's not one-on-one interviews we're very much playing off of that interaction between people, where they just play off of each other. Somebody says so this happened to me and somebody else will share something similar, and they'll be back and forth and and the facility is just there to open the floor, keep people kind of on track, making sure everybody gets a chance to talk. So they're sharing their stories with each other within this group and they're starting to trust their voices again and it builds up their self-confidence and their self-esteem and in the eyes of the people in that room they know that they're just people.

Lisa:

Right.

Laura:

They're an ". They step out of that group, they go home and they're kind of an it again. They're out in society, they're an it again. That's the therapeutic benefit of that sharing group, which we think is so important when the group decides that they would like to share their stories with a bigger audience. So what we do is we, we take their stories, we turn them into a script that is largely co-created with the group. We really believe in um involving the group as much as possible in that creation of the script. We don't want to co-opt their stories and run off with them and create a theater program that they're not necessarily a part of that script or anything. So the script is co-created and then the group themselves then become the cast members, designed so that they are the people who can, in a reader's theater style format, can present the script themselves to the audience. So they are literally the face of dementia to the audience.

Laura:

Audiences are very um receptive to to this and they learn so much. And the format is very engaging because we realized that in order for people to listen and to be changed through listening, they need to be engaged. So this is a really engaging format with short, snappy stories. We do it often in the format of letters addressed to whom I may concern, and these letters are the stories are couched inside this letter that's addressed to the person, place or thing that has impacted their life or that they want to talk about or that they've had an interaction with and reflects their experience. Some of these letters do end up getting written to a spouse or children or somebody?

Lisa:

Do they get to decide who they're writing the letter to?

Laura:

Yeah. So to get back to sort of the topic of your podcast, here we learn about what that person is thinking and how we can best support them. That's what the audience learns. So the wider community starts to understand how they can support people living with dementia. Their direct care partners learn and, almost as importantly, in the eyes of the care partners and in the eyes of their families, their friends and their communities, the person living with dementia becomes an I again. They're not an it. People start to realize that they're a multidimensional human. Still that's through their stories.

Laura:

And then they start to treat them as such.

Lisa:

There's so much to offer and so many different perspectives and opinions that a person can still have, regardless of whatever diagnosis they have right?

Laura:

Right yeah.

Lisa:

So where do these groups happen? Like if I wanted to take to whom I may concern or I wanted to be a part of that, how would I get involved? And where could I find a group that's already existing, for example, Tell? Me more about the process.

Laura:

Right. So what we do is we train the facilitators and then we let the facilitators find or create their own groups.

Lisa:

Oh, I see, okay,

Laura:

and having said that, though, we have actually just started a virtual sharing group, and we usually don't recruit people living with dementia ourselves Maureen and I kind of in our virtual head office, we don't really do that, but this time we are for this virtual sharing group. So this is a great opportunity for people who are living in, you know, communities where there's really no, well, there's no support group, there's no opportunity to do a program like this. Well, there's no support group, there's no opportunity to do a program like this.

Laura:

But regularly, though, we would train facilitators, possibly within an organization that may already have an early stage program, for example, so they have a ready population of people to whom this is another program that they can offer. Or it might be inside a retirement community, where, again, they have a ready population, but their population might not be quite ready to start talking about dementia and start sharing the stories with everybody. So in that instance, then, we would encourage, we'd work with the facilitator to create a support group, to call it a dementia support group. First, work with people for a while just to help them kind of even just talk about their diagnosis, be more open with each other, build up that confidence and then talk to them about possibly sharing their stories with a wider audience and see how they feel about that. You know some, some groups are ready to. If, especially if it's an existing support group, they're ready to share their stories with the world right away because they've already been through that whole process of building up their confidence.

Lisa:

But Laura, do they go into the group with the idea that they could then get to a place where they're I don't know, for lack of a better word performing in a theater type atmosphere in the end? Or is it you start with the idea of you know writing and sharing your story in some way, and then seeing where it takes you?

Laura:

um, no, we, we, because it is a theater program. We do start off. We have in the past um, we're in a transition period here, if you can't tell but we have, uh, in the past started off by saying your group will be involved in a theater program, okay, but we also want the group to be able to decide when they do that and to decide what kind of audience they want to do that with. Largely, that has worked. The issue that we're running into is unless there's already a culture within the community or the organization where people speak very openly about dementia, where people are very open about their diagnoses, where people living with dementia are very accepted into the community and there's already lots of programs already. You know very, it's just a normal part of doesn't happen so often. So in in that case, in that kind of instance, it would.

Laura:

It's, it's fairly easy to say to we call I hate the word recruit, but I don't know what else Ask people to join a group where they know that they're going to be sharing their stories, they'll be co-creating a script and it will be performed in front of an audience.

Laura:

So that's why now we're kind of backing off of that and saying, okay, let's take this in two steps. We're going to work with your organization, kind of do an assessment upfront and decide which path is going to be best. Do you go straight to performance or do we start off with a support group maybe first, while we help building up that kind of changing the culture in your organization so that people are more open about dementia? So I just want to make sure I answer your question here. We have even with saying to a group up front, the end result of this will be a performance. Some groups have decided that the facilitator might have had this idea of 300 people in the community theater with all kinds of fabulous things, and the group says, yeah, no, I think we just want to do this in front of our spouses and or maybe just your, just the staff, that's it, maybe 10 people, that's it, okay and that and that's what happens and that's what happens because, because it's it's their story and we have to honor that.

Laura:

So we do our best to do that and that's what we teach our facilitators.

Lisa:

I love that it's not up to the facilitator. Like you said in the beginning, the facilitator is there to facilitate, to give opportunities for everybody to feel included and a sense of belonging, but ultimately it's up to the participants whose stories they are to decide how they're going to be heard and shared.

Laura:

Yeah,

Lisa:

in the end,

Laura:

yeah, okay, yeah, love it. Yeah, it is, it is,

Lisa:

I love that.

Lisa:

So I'm wondering if you could speak a little. This sounds like it might be hinting on to an article that I was reviewing on the website about narrative agency, and I wondered if maybe you could speak to that a little bit more and explain what that is.

Laura:

Sure, yep. Narrative agency is really about our ability to own and share our stories ourselves. Agency means to have control and ownership over your own narrative, and the reason why that's important is because, well, have you ever heard of this, the saying if you don't tell your story, somebody else will? Yeah, and then if somebody else tells your story, this might not be exactly accurate, right, and then if that story gets out there, that's how other people will perceive you. So that's your identity. It's, uh, how you are seen by the outside world. It's whether or not people respect you, understand you. So having your narrative agency is important in getting the respect standing up for your rights, your own self-identity. Stories are the way that we have narrative agency. It's really how we exercise our narrative agency. We do that a lot through stories and people might not realize, really, that they do talk in stories a lot. I mean, we really do All the time. Yeah, yeah, we don't need to be sitting around a campfire to do it. So I think it's kind of something that we take for granted, unless you've ever had your story taken away from you.

Laura:

And dementia does tend to take people's stories away from them, and it's that turning people into its instead of I. They're losing their I, they're losing their identity because nobody's asking them to share their stories anymore. So I say that dementia takes away a person's ability to share their stories and their opportunities to share their stories and their opportunities to share their stories. Dementia takes away the ability to share stories, sometimes because of the type of dementia which can impact the voice. It impacts the processing speed of thinking and forming words and sentences and getting them out of your mouth and the processing speed, maybe, of thinking through a question that somebody has asked and then formulating the answer that that might slow down and some people lose their voice completely. So how else might somebody share their story if people are not patient enough to sit with them and to get at that story, which is the opportunity part, story which is the opportunity part.

Laura:

So if a care partner, for example, doesn't doesn't know how to talk to their loved one with dementia anymore, or it doesn't really have time to sit with them or just doesn't know what to talk about, or you know, my favorite really is the family sitting around the dining room table at a holiday gathering. If you can imagine the family sitting around the dining room table at a holiday gathering, if you can imagine the family sitting around and the conversation usually is pretty spirited, especially if you have a big family boom, boom, boom all over the place, knowing that the person living with dementia, that their processing speed has slowed down, they get left way behind in the conversation and a lot of times when you're in that situation, if you're not able to just jump in there and add to the conversation, you get left behind. So that's what happens and then again I think we talked about that earlier it's the impact compounds and the person sitting there thinking well, you know, maybe I'm not worth listening to anyways and I honestly can't keep up, so I just give up. So that's the opportunity, that's one of the ways that the opportunity manifests itself. So if you're I don't know if people can kind of just sit for a second and just kind of sit with the idea that you feel like nobody really cares about your story, nobody cares to listen to you. You still have so much to say and to contribute, but nobody asks you. There's nobody to talk to and what you do talk about is very kind of perfunctatory, is that it? Day to day items you know, like what time is breakfast, what's for what's for dinner, what time is this activity? I'm thinking of like retirement communities. You know it's very. I read something once about how conversations in retirement communities they don't go deep. Right? It's very rare that there's friendships where people can actually go deep. It's very high level conversation so nobody gets to that inside of you. So if you can imagine being 60, 70, 80, and never having another deep conversation in your life, so that's what it would feel like having your narrative agency taken away from you. With To Whom I May Concern, I like to say that we're the key that unlocks the ability and the opportunity.

Laura:

The ability, more the opportunity, because we're kind of recognizing the challenges that people, even in the early stages of dementia, might be having with communicating and we teach our facilitators about how to slow down, how to make space for people to talk, how to manage the session. What are some conversation starters you could use, how to just kind of manage that group discussion. Because people want to talk and given the opportunity they will. It's just they're largely not given the space to do that. And then so within that group they start to get that identity back and they get their esteem and their self-respect and everything. And then when they share their stories with the wider audience and they can visually see the impact that they're having. Imagine going from somebody who never gets asked about what it's like to have dementia. What is it like to be you? To never having a deep conversation, to four months later, you're sitting in front of an audience getting a standing ovation.

Laura:

Yeah, transformational and it really is transformational, and we've seen it again and again, and again

Lisa:

Yeah, how important it is for a person to feel and be, not just feel, but be heard and seen

Laura:

yep to be heard and be seen, and and in a very practical way, because the, the, the scripts, the performances are full of tips for everybody around them on basically how to support them to live their best life, and which speaks to the kind of meaning and purpose that's involved with that that, to whom I may concern, can provide to the participants who have dementia, because they're actively teaching people about the experience.

Lisa:

And it's from the people living with dementia, right. So it's not just academic papers or theory, it's, we're actually applying this information because it's from the people who are living this.

Laura:

Yeah, yeah. And one of the ways that we measure the impact on audiences, the impact that we have on our participants with dementia is anecdotal really. But with the audiences, what we do is, before they hear or experience the performances, we ask them to write down five words that they think describes the experience of living with dementia. Those words are usually fear, loneliness, very negative words, and then we ask them to repeat the exercise after they hear the performance and you start to hear words like hope and courage and laughter.

Laura:

So when you're a care partner, the lens that you are looking at your person that you're caring for, that you're partnering with in their care, if you're looking at them through this very negative lens, it's going to color your interactions with that person, because you're looking at fear and loss and loneliness and a lot of these negative things, loneliness and you know a lot of these negative things. It's simply, it's simply going to impact how you're going to interact with that person, as opposed to looking at hope. And oh, there's hope, there's resilience, there's courage, there's laughter, they have a sense of humor. Yeah, it's, it's gonna change the way that you value that person. It's going to make you value that person more. And when you value that person more, you're going to change the way that you support them and it's kind of a cold hard fact, but it just is yeah no, it's very true.

Lisa:

I get what you're saying. It reminds me of I had had a conversation with Mary Beth Wighten and we were talking about the importance of language, and what you're saying reminds me of what we discussed and the difference between caregiver and care partner and how caregiver can feel to a person who is living with dementia like they're the ones on the receiving end all the time and that there's nothing like it's not a two sided relationship necessarily where they're equals. It's more like, let's say, parent and child. There's what's the word I'm looking for Seniority type right when it's not seen, as we both have things to give.

Lisa:

We both have a role in this. It's more like you're giving to me and I am receiving, rather than there being some give and take on both sides. Right that we still have something to offer, even if a person is living with dementia.

Laura:

Right, that's exactly it. That's so important, the idea of partnering in care, and I think that to kind of get to that relationship which, by the way, if you work at it that way, as being a care partner, it's important for you to get back to being spouses, to seeing each other as husband and wife again, instead of caregiver and recipient of care. So it's important to understand, then, how to have those conversations, because how do you know what it is that you're I guess it's also your care how does the care partner know what their partner wants, how they would best want to be supported, if they're not having these conversations?

Lisa:

Yeah.

Laura:

And Maureen and I were talking about this this morning and you know some, some couples, depending on what their relationship was like before the diagnosis, already they might want to consider seeing a therapist or somebody just to to help them start to bridge that gap so that the care partner can get insight. And it goes both ways right, because the care partner has needs as well that need to be recognized and if it really is a partnership, then they need to be able to work together and have these conversations to establish expectations and needs. And it's one thing that we were talking about this morning was the importance of shared experiences that you can still have and looking for those shared experiences as well. You know what are, what are some of the things that you used to enjoy doing what that you could still be enjoying together, so that you can talk about those.

Lisa:

Exactly.One of the things that I find, in my opinion, is helpful for me to remember, but also one of the things that I share with, say, people I'm working with who might need to have a couple lessons or are looking for tips on communication approach techniques, is when to use the word remember and when not to. And I think having experiences and shared experiences is wonderful. We don't want to, however, then say oh, do you remember when we did that lovely thing? And expect somebody to remember. When it's okay to, I say you can tell me what you think, laura.

Lisa:

Where I think it's okay to ask do you remember? If it doesn't matter what the answer is and if it's for reminiscence reasons, but if you're looking for them to actually remember detail and data, then we're setting people up for failure, because that's really the core of a dementia, is the memory loss, so to say. Do you remember? And it happens very innocently and I think it's just in out of habit that we tend to use that word, but I think mentioning it here today with you is important to help just increase that awareness and and and bring it to people's attention.

Lisa:

What do you think?

Laura:

Oh, totally agree. I think I think the stigma about forgetting should just be forgotten. We forgot, so what? No, anytime somebody says, do you remember, it just makes me cringe and... remembering is highly overrated. And if your relationship is really founded on or relies on being able to remember all these things, but you've got nothing in the present to share, yeah, you got a little bit of work to do, and that includes friendships too. You know, if you've got friendships where you've been friends for years, but everything's about remember this that you've got nothing new to talk about, it's just going to peter out. So, no, I I think remembering is highly overrated. And, um, to pressure somebody to try and remember thing is something I detest reminiscing, sorry.

Lisa:

I love the more of the approach where it's what do you think about this, you know, or like what you said, how do you feel about a, b or c, and, and leaving it there, and often the memories will come, but that we leave that up to the person to decide what they want to share and what they have memories about and what they don't right exactly so it.

Laura:

So it makes me think about the in my world books that I've created, there's a full page color photo, and I like to use photos instead of drawings, because I feel like drawings are somebody else's interpretation of something and I just want a photo, a photo of, you know, not particularly artistic, just a photo of something. And then, even if the person what I found is that, even if the person can't read all the text or is having trouble or they're just too challenging, often, more often than not, they'll look at the photo and that just reminds them of something, and then they're off and talking and you can spend half an hour telling stories about this that they were just riffing off of this one photo, and that happens a lot. There's one the first book I did has a picture of a guy playing golf. Well, there you go Under golfing stories Right there.

Laura:

So it's and that doesn't require that's not saying do you remember that time you went golfing and you, you know, put the ball in the water and the cart ran over you, and I don't know. No, but you know, should I Exactly?

Laura:

This was really important to you, obviously, but yeah, but you could say, just just talking about golf, I used to love golf and then just kind of gets that processing thinking where maybe you end up being. But. But people with dementia are people living in the here and now. It's not all about what you remember from years ago. Okay, yes, people like there's a place for it, but I'm not I'm not a massive fan if you can't tell. And so I should point out that our sharing groups of people living with dementia are not reminiscence groups. Reminiscence groups. If it happens to come up that somebody says, oh yeah, 20 years ago we had a great trip to Orlando or something, then great, but the facilitator's not sitting there saying, tell me about a terrific holiday you took, or do you remember when? No, it'd be more like tell me about a holiday, right, and then they start kind of playing off each other. But it wouldn't be remember when you did this or something.

Lisa:

So no, Okay, so on that note, do you have other? Because I think it's great for the listeners to have some clear cut examples and maybe some takeaways on, like can they say how can you create a conversation, how can you start to draw more information from, say, it's, a loved one or a friend, or in the community? Do you have a couple little quick tips or prompts that might help?

Laura:

yeah, um, sure, yep. So, uh, my favorite is recognizing that you should be asking open-ended questions. Strive to ask open-ended questions as much as you can. Open-ended questions are questions that can't be answered with yes or no. Now, there is a time and a place for yes and no answers, and that is when it's an emergency and quick decisions need to be made, and also when somebody's in the later stages and yes or no is kind of the best sometimes that you can expect. But to really get somebody to answer in a full sentence, you need to ask an open-ended question, and that would be questions that start with who, what, where, how is okay, but you got to watch it, how. You know, like how was your day? Fine, you know that's. That's a one word answer too, and why questions. You got to watch the why.

Laura:

When you're deeper into a conversation, you could say you know why do you like that or why do you? But sometimes why can be kind of being on the attack, why did you do that? So try not to do that. And I think the other key is to create some shared experiences that you can then talk about. So if you watch a film together, watch a sporting event, just some of these things that maybe you'd like to do together. Go for a walk. And then, rather than saying, oh, together, go for a walk. And then you know, rather than saying, oh, that was a nice walk, did you like that walk? And yeah, okay.

Laura:

So maybe ask more open-ended questions like, um, I know, I something along the lines of what stood out for you now I gotta take away my business facilitation because I can't imagine a couple standing there so what stood out for you on that walk? But you know, you get the idea. You know, yeah, what was your favorite part? What was your favorite? Yeah, which, which was which, what was? What do you think's at the end of that path that we didn't take, what do you think?

Laura:

You know like you'd be having this conversation as you're going along, but I think it's those shared experiences give us something to talk about and then you can start to um, have deeper conversations about, about feelings. Um, maureen had a good one when we were talking recently. She said you can use opportunities or when somebody might actually forget something, or they might kind of screw up something or be frustrated about something, and then you could say how did that make you feel? Or what do you feel? What can we do differently next time? What can I do to support you and to just try and park any anger and frustration that you might be feeling and then try not to bring that into the conversation as well. Good, so it's just a couple of ideas I love that, thank you, it's yeah.

Lisa:

I think it's just very helpful for people to maybe just spend some time reflecting, you know on on what conversations look like, and I think these are great ideas, not just for people living with dementia and interacting with this population, but really anyone, and I think, like what you're saying, who cares about memory. I think, considering that for anyone, like I think, we all have moments, whether it's because we're exhausted or depressed or whatever the other reasons at any age we could have challenges with memory, so and we have different perceptions of what happened. So to say, do you remember? Can be really tricky. So I think these conversations and the tips that you're giving are helpful for us to have other ideas and alternatives, not just for working with people with dementia, but just in general, on how we can be more respectful and appreciative and less judgmental of others when we're having conversations.

Laura:

Yes, yes, yeah, well said, and also be aware of creating the space to have those conversations. Slow down One of the line that makes its way into every script that we do is just give me a minute. So our world is very fast moving, so just slow down and give space for somebody to process their thoughts and get them out, and really that goes for anybody. We tend to talk over other people and think very quickly and leave conversations probably too early before we can go deeper and just be better listeners, which means focusing on what the person is saying instead of being 10 steps ahead and thinking about what your response is going to be or thinking about your to-do list while the other person is talking. Try and remain focused and centered.

Lisa:

Yeah yeah, ask follow-up questions or think of what you could ask that relates to what they just said, rather than what, how you you know what you're going to say. That might relate to the story. Yeah yeah, I have maybe a final question for you that might be a little bit tricky. It might not be. You might have thought of this before, but if you say you couldn't speak for yourself or have your own voice heard, how would you communicate what was important to you, what matters to you and what would you want others to know if that was the case, that is a great question, and I'm starting to realize that how we might choose to communicate largely depends on the person that you're communicating with and possibly the topic as well.

Laura:

But I think you know, in some instances my, my frustration and possibly even anger might come out on my face first and my actions with some people. But I mean my, my, my I'm assuming I can still write here, so I would whatever you like.

Laura:

Yeah, I would write, I would definitely write and, okay, that that's really actually more of my go to form of communication is writing more than more than speaking. Now, if I I thought you were going to say what if I were in the later stages of dementia, I'd have to say I'd have to say that at this point in my life I guess I'd have to hope that people have learned enough to know to slow down and be open to what communication can look like. It's really, it's really the job of the person who is being communicated to to be open to see what that might look like. You know, think about how we're all hoping well, maybe not all of us hoping for signs from aliens or outer space, signs of life from outer space. We're pretty open to what that might look like, right, we don't know what that's going to look like. Is it going to be some kind of beeps? Is it going to be flashes of light? Is it going to be some kind of beeps? Is it going to be flashes of light? Is it going to be this or that? Yeah, we honestly don't know.

Laura:

Communication can take many forms. So if I'm really, I might communicate with my face, with a smile or with anger, or with or my actions or my physical actions. I might want to dance because I'm happy and just to kind of close that off. I remember visiting my mother in the nursing home that she was in the memory care unit that she was in and there was a woman sitting in her wheelchair in the hallway. Woman sitting in her wheelchair in the hallway and she couldn't talk. She basically just sat there all day and she's very, you know, hunched over in her chair and but she loved it when somebody came by and if you stopped for a second and just smiled, she'd hold out her hand and hold your hand.

Laura:

That's communication that's communicating, and if I had just passed by, I wouldn't have been the recipient of that communication. Oh, I love it, yeah, so yeah yeah, and we, just we just got to slow down and we and we have to look for signs of life from from outer space. Absolutely.

Lisa:

And I just want to really highlight because I think about this a lot that story that you just shared about that lady. That's a story that's that stays with one another and it doesn't matter if you have dementia or you don't or you're in the later stages or you're not.

Lisa:

We do impact others, we influence others. We can inspire others without even realizing it, so I think we just really have to take that into consideration when we're thinking about the interactions and the relationships that we're forming and creating every, every day. Yeah, I love that story, thank you, yeah, wow. Well, thanks for this conversation, laura. It's really been a pleasure. Uh, to whom I may concern? Not it. To whom I may concern, it's dot, orgorg, yep, and is there anything else? Is there other information or contacts or anything else that you would like the listeners to learn about or know about going from here?

Laura:

Well, if you visit our website, sign up for the newsletter and look for it, check your junk folder it seems to be where it usually ends up. But, anyways, for announcements about our caring conversation classes and our facilitators dementia support group facilitator training that will be coming up soon. I'm on LinkedIn and I'll send you the link, I guess, for my, for my LinkedIn and my email address, so that people can reach out for me if they, if they like and if there's anybody who you know, who's living in the early stages of dementia, who you think might be interested in being in our virtual support group, which the end goal is to create a video. So no, no live performances, no flying to broadway or anything like that, but, um, they'll create a, they'll create a video which then, hopefully, will be shared and people can learn from Nice. So, yeah, just go to our website.

Lisa:

There is a webpage for the virtual sharing group and you can just fill out the form there and I'll get that Perfect, and I'll share all of this information in the show notes too, so you can refer to them. And this, yeah, this has just been great. Thank you so much for your time, laura.

Laura:

Thank you, it's been a pleasure.

Lisa:

Thanks for listening today. If you enjoyed this episode, take a minute to look at the show notes for resources and links, and be sure to leave me a rating and review. And also you can follow the show so that you get notified of when the next one comes out. And lastly, if you can think of somebody in your life who you think would enjoy this podcast, I hope you share it with them as well, so that they can listen in on the conversations and ponder how to capture their own essence. Take care, and I look forward to the next time.

People on this episode

Podcasts we love

Check out these other fine podcasts recommended by us, not an algorithm.

Redefining Dementia Artwork

Redefining Dementia

Person Centred Universe
Co-Created Artwork

Co-Created

Snack Labs
The Waiting Room Revolution Artwork

The Waiting Room Revolution

Hsien Seow and Samantha Winemaker
The Storytelling Lab Artwork

The Storytelling Lab

Rain Bennett
The Doctor's Art Artwork

The Doctor's Art

Henry Bair and Tyler Johnson
The Root & Seed Podcast Artwork

The Root & Seed Podcast

Root & Seed Inc.