Episode 7: Information Piles and Palaces
In this episode: do you know where to go to get good information about dementia care?
Featuring Nicole Dalmer (Assistant Professor of Health, Aging, & Society and Associate Director of the Gilbrea Centre for Studies of Aging at McMaster University) talking with host Sally Chivers about:
- How to go from gathering information to being informed about aging
- Information work and dementia care
- the changing role of the public library
- Magical one-stop, no-cost information shops
Read Nicole Dalmer’s dissertation Informing care: Mapping the social organization of families’ information work in an aging in place climate
Watch a digital story about our experience with fertility care and a little more
Find out what services are offered by your local Alzheimer’s society (Canada-based)
Learn more about the digital literacy workshops Nicole Dalmer and Lucia Cedeira Serantes led
Advocate for public libraries
Wrinkle Radio is a proud member of the Amplify Podcast Network. We are grateful for funding from the Social Science and Humanities Research Council of Canada and support from Aging in Data and VoicEd Radio.
Nicole Dalmer 00:01
You really never know what you're going to get in the library because you don't know who is going to enter the door. So it's just helping them the best you can. Often navigating tricky resources that have been moved online and trying to support them as they're trying to make sense of those different tasks or forms or whatnot that they need to navigate to be able to move forward in their every day. You know, while they think it might be their problem, it's often not. It’s that the system is clunky and ridiculous, and it's inexplicably difficult to navigate. So I think part of it, too, is sometimes that reassurance: it's not you, the system is hard, they're making it hard for you. So let's figure it out together.
Nicole Dalmer 00:47
When you've been caring for someone for months, or years or even decades, you have different needs that arise, a new condition might present itself, you might have a new medication or a new side effect. Or you might have to visit a new specialist or a new doctor or you might need some information about a recreation facility where you can go to enjoy yourself and I think at each of those moments of change, you have an information need.
Sally Chivers 01:22
Welcome to Wrinkle Radio, where the stories we tell about aging matter. I'm your Host Sally Chivers, I am so glad to be back. I am so glad you're back. And I am so glad to have Nicole Dalmer with me for this episode. We’re going to talk about Information and Care. I know, it sounds a little dry. But trust me, in talking to her, I really learned how getting informed when we do it in a good way draws us into connection and community. Honestly, I left this conversation with a renewed sense of hope and a commitment to do something I've been putting off for a while.
Sally Chivers 02:07
Have you noticed the world has gotten a little more difficult? I'm talking about how every little thing costs a little more, and takes a little more time. Places are understaffed, people are struggling, I get it. But I am so tired of how hard it is to get even the simplest thing done. So I'm going to take advantage of the company of you dear Wrinkle Radio listeners as I go undercover doing one of those irritating little bureaucratic tasks.
Sally Chivers 02:38
Hi there, I would like to renew my library card. However, I do not have the physical library card with me.
Sally Chivers 02:47
Um, do you have a piece of ID with your address on it?
Sally Chivers 02:49
I sure do. Will that do?
Sally Chivers 02:54
Okay, so this seems to be going pretty well, I walked into my public library, didn't have my card with me, but wanted to renew it. And all she seems to want is my driver's license. But now I'm expecting that kind of Air Canada experience. You know, when you are at the front of the line, and the clerk seems to be playing Tetris on their computer for a while, and then they look up at you and need more documents or whatever. I'm sure that I have some library fines from way back. So we're going to have to work our way through that. And then of course, I have no idea how much this is going to cost me.
Sally Chivers 03:34
And your phone number is still 8675309
Sally Chivers 03:37
Sally Chivers 03:38
And your email hasn't changed either.
Sally Chivers 03:40
It has no. So she's been pretty nice. I'm not sure what's up. She's got my personal details. They seem to have them on file.
Sally Chivers 03:49
You are all set for another two years.
Sally Chivers 03:51
Awesome. Thank you so much. And if I can't find my physical card, I can come in for a replacement card?
Sally Chivers 03:57
Yeah, we can get you a replacement.
Sally Chivers 03:59
Okay, so no fines or I don't have to pay them and no fee and I didn't even need my card.
Sally Chivers 04:09
I knew this about libraries in some way. When I was a little kid we went all the time. I'm gonna say once a week, it might have been more often. I got to come home with piles and piles of books: the books I lost myself in; the books last season, I was telling you I read at the side of a squash or tennis court. I realized I've been thinking of the public library as a place for kids. I hadn't really thought about it in connection with aging.
Sally Chivers 04:42
When I asked this episode's guest what she’d tell people they could do to get informed about aging. This is what she told me.
Nicole Dalmer 04:48
Haha! So top tips for getting informed. Talk to your friendly public librarian. I think the public library is really such a special remarkable space where you can go with those questions, not only about an information need. You can go there if you have a question about why is my iPhone acting up? Or can you help me download this eBook onto my phone? Or can you refer me or or direct me to different city resources. So I think it's really this wonderful, I might say magical, one stop shop where you really can go with so many different questions about so many different facets of your life. And they can help you work through that process of getting information to moving to being informed. It might take a couple trips, but I think it's a really helpful place to go to move through that process.
Sally Chivers 05:39
That's Nicole Dalmer, Assistant Professor of Health, Aging and Society at McMaster University, where she's also the Associate Director of the Gilbrea Center for Studies in Aging.
Sally Chivers 05:54
When people find out that I study aging, they come to me for advice I'm not equipped to give, especially when they or someone they love has been diagnosed with dementia, I always want to help. And I'm always overwhelmed by the dizzying array of information that's out there, and how difficult it is to figure out what reliable sources are, and how they apply to the community I'm living in. I wanted to talk to Nicole Dalmer for a really long time because her dissertation research when she did her PhD in library and information science (so this is even before she became an assistant professor) was about information for caregivers: how they find it, how they manage it. Nicole helped me feel a lot better about this sense of inadequacy because she taught me that the question is really complicated. Where do I get information about dementia care for my person? It sounds simple. It really isn't.
Nicole Dalmer 06:52
It’s bringing in so many questions of what works in the moment? What works online versus in person? What are some of the qualities of information that some folks might need to be able to move forward? in person, shared experience, trust, vulnerability, and so there's so many different elements wrapped up when we're trying to parse out what works and what do folks need in that moment when they're seeking information.
Sally Chivers 07:16
I found that so reassuring from Nicole Dalmer. And yet, as I teach my students, when you find out something's complex, that's not the end of the research question; that's where it begins. So we do still need to figure out how to get informed. And as Nicole has taught me, we need to learn how to go from getting information to being informed.
Nicole Dalmer 07:36
The being informed piece, I think, is the much more intricate, complex and complicated part because there are so many different facets to it. When I'm thinking about being informed, you've already perhaps gathered that information. And now you're having to filter through information, figuring out what exactly of that information that you've gathered, you need in that moment. Thinking and making decisions about who else might need that information that you've just gathered and filtered. And for some folks, it also might mean avoiding certain information in that moment, because you don't need it or you're not ready to grapple with the implications, I suppose, of that information as well.
Sally Chivers 08:16
This really helped me understand an experience I had. It had nothing to do with dementia care, but it was age related. And it was medical care related. I'm going to tell a story that's a little more personal than I sometimes get on Wrinkle Radio. When my husband and I were trying to get pregnant, it wasn't working out. So we went through fertility testing. I could see that my ovarian reserve numbers were zero. And, indeed, when we went to the doctor, she drew a picture of an ovary and wrote the number zero and told us that it meant, really, we'd probably shouldn't go ahead with any procedures. They would be really invasive and expensive, and they wouldn't work. And we did not want that information at that time. We left and we put on our superhero capes and, you know, superhero capes that were gilded with insurance that was going to pay some of the cost and the expense. So that part wasn't as much of a worry for us. But after a couple of weeks when we got real about what the invasiveness of the procedure would mean for me, we went back to the doctor, and we sat down with the piece of paper, and I pointed to it and I said, you told us what this meant, and we weren't ready to hear it. But we are ready to hear it now. Nicole Dalmer taught me that that shift from getting information to being informed isn't always so dramatic, but it's an important part of the work that dementia care providers do.
Nicole Dalmer 09:51
I spoke with an amazing group of family care providers of older adults living with dementia and there were these key moments where I would see a shift in their getting information to being informed. A number of them had taken part in an Alzheimer's Society workshop series for family care providers. And they would receive quite a large binder over the I can't remember maybe it was a 10 week workshop series. And they would talk to me through that process. At the beginning, it was just these chapters or dividers in a binder of nuggets of information. And they would speak to me about specific moments in their care journey, perhaps when they're beginning to think about, maybe it's time for a long term care placement where they began to go to that section in the binder, think about speaking to other family care providers in their networks to solicit feedback on what's worked for them and what hasn't worked for them, going through notes they might have taken during that workshop series, but weren't ready to process at that time about long term care placements. So you can see there are often these certain moments where it kind of all came together. And they really had to sit through and sit with I suppose some of that information, especially when you're thinking about maybe moving a family member to a care facility. I think that's when you begin to see so much of the emotional impact of having to digest and navigate some information topics because it was really a difficult time for a lot of the family care providers.
Sally Chivers 11:12
Okay, so informing care doesn't just involve the brain, it really touches the heart. Nicole Dalmer’s research has also helped to show how this is part of the unrecognized work that care providers do.
Nicole Dalmer 11:27
It was bewildering to me, sometimes overwhelming to me when they began to speak about the information work they were doing with so many different people. And I think because information is such a fuzzy topic, and it can be tricky to figure out what information might mean to me versus you versus a person I'm speaking with, I asked them to begin to draw out or sketch out or doodle out maybe their information world: so thinking about all the information they have to contend with when they're providing care for their family member. U began to see how their information work was really linked and necessarily, I think, interconnected with so many other people: the pharmacist, the family physician, perhaps a specialist, other family caregivers that they had met at the Alzheimer's Society, the information that they were gathering from webinars and podcasts and blogs that they were reading, and also maybe some less expected, I suppose forms of information work, even looking at yoga sessions or swimming schedules so that they were taking care of themselves as family caregivers so that they could continue to provide care and as healthy a way possible, even though it was often a bit demanding. It was interesting watching the family care providers in my study, take a step back when they finished sketching and doodling out their information worlds, they had this moment of oh, this is why I'm exhausted. And this is why it's so complicated. And this is why I'm sometimes so frustrated, because I have so many nodes and so many different people and places and things that I'm dealing with informationally all the time every day over sometimes years at a time. It was quite powerful.
Sally Chivers 13:05
So powerful. And so different from the experience I was describing to you with fertility care. We had to navigate a real gauntlet of receptionists to get access to the doctor, we had to travel from our smaller city to Toronto for care, and we also had to navigate insurance providers. But that's a pretty small map to doodle out compared to what Nicole was talking about. And we also had time pressure, like my ovaries weren't getting any younger. So we had to make this decision super fast. As Nicole explained, dementia is different because it unfolds over a period of time. And so the information work associated with care provision for dementia is also different in that way.
Nicole Dalmer 13:50
I think what might be unique, perhaps about certain forms of dementia is that they can unfold over many, many, many years. And so this information work is ongoing. And sometimes I would say a bit relentless because it is unfolding, ebbing and flowing over so many years. And so the information work, I think, is especially intricate in a way because there are different manifestations of different symptoms. There might be a period of kind of stagnancy, different needs to creep up over these different years. And so I think there are so many points at which that information where it becomes especially visible. And I think what I noticed from caregivers who had been caring for many years, they develop a certain expertise in knowing that's the source that works for me or going to the Alzheimer's Society, meeting with family support group, that's my preferred information source because there's a shared experience with everyone and I can speak perhaps a little bit of a different language with folks who are in the know quote, unquote. They really develop their own style, their own, almost, preferred flavor, I suppose, of where to go, where they like to search and how they like to organize the information which is another big piece of becoming informed: that archiving storage and organization and they develop preferences for that, whether it's a notebook or notes on their phone for some folks adding in more pages to the binder they had received when they first received the diagnosis.
Sally Chivers 15:12
Okay, I'm really convinced now that this is a complicated question. Where can I get the information I need about dementia care now that it has entered my life? So far, we've talked about how that's a complicated question, how information is complicated how we need to do more than just get information but actually become informed and how when dementia is involved, this is going to unfold over a period of time, the work is going to involve and network of people and places. I want to be reassuring, though, I want to say there is help, there is a way to get this information. There are barriers, but there are ways to get around them. So I asked Nicole to help me with that. What are the barriers to accessing information about dementia care? Where can I go for good information? How do I get around the barriers?
Nicole Dalmer 16:04
If I'm thinking about online sources, the gap there is that it's not a gap, it's just that there's too much to wade through and there's too much information in a way out there to be able to navigate, filter through and figure out what is reputable and authoritative and what is also meeting your information need at that moment in time. And perhaps that's why the Alzheimer's Society workshop series was so helpful, because it's a small group, there is a facilitator there to guide you through, the information is in a binder. It's not on these discrete websites all over the place, and you're not having to filter through page 20 of your Google search results. And I think sometimes there's something about that shared in person experience when you're navigating a topic that can be really difficult, and a topic that touches so many facets of your life and being able to chat with people in the moment about their experiences, what's worked, what hasn't worked. And there's a certain trust, it seems that was built amongst the participants in these workshops series. I think, because there was a built up trust amongst the members, there's a certain ability to express information questions, which requires a certain amount of vulnerability, which not all people want to express in that moment.
Sally Chivers 17:18
Okay, I feel confident, relieved, that I can suggest the Alzheimer society workshop to you Wrinkle Radio listeners, and for people who come to me to ask where to get good information about dementia care. But I know some people who have come to me specifically say they can't or don't want to go to those workshops. Nicole mentioned how some people might not feel comfortable being vulnerable. She also talked to me about the time and condition, it requires to be able to go to an Alzheimer's workshop series.
Nicole Dalmer 17:52
The Alzheimer's Society workshop series, it definitely requires that you're able, for example, to have someone else who can stay at home with the individual living with dementia so that they are good to go and that you're able to attend this sometimes to our meeting in person. And that certainly was noted by some is quite a struggle and very difficult.
Sally Chivers 18:12
So not everybody can go to these Alzheimer's Society workshops. And there are other barriers to accessing information that Nicole explained to me,
Nicole Dalmer 18:23
There are some technical barriers to accessing information. There might be some digital literacy, for example, skills barriers as well knowing what a reputable site looks like, how to ascertain whether or not the author is giving helpful, truthful information. But then there's also the interpersonal barriers as well as information, choosing what to divulge and what to withhold, you necessarily have to think about so many of our other identity intersections, because dealing with information is informed by our education, class, race, gender.
Sally Chivers 19:00
We're talking about a lot of barriers and problems here. And we're talking about them so we can know how to get past them and solve them. As part of that, when Nicole Dalmer here was a postdoctoral fellow at Trent University, she ran a set of technology workshops at the local public library. She put together her knowledge about information gaps, the kinds of things that stop people being able to access the information they need, with her knowledge that information and technology can be best understood in community.
Nicole Dalmer 19:33
It's really these smaller, more intimate groups that I find really helpful and also not assuming what folks may or may not have access to in physically owning different technologies but also knowing how to engage with those technologies as well in a way that works for them.
Sally Chivers 19:47
This workshop happened in the Peterborough Public Library. And I was intrigued to hear from Nicole that the Alzheimer Society is starting to hold some workshops in public libraries as well. So let me take you back to the scene where I walked into the Peterborough Public Library to renew my card. I really was a bit nervous about the encounter. So I decided to wander around for a bit, to see what the space felt like. There's natural light pouring from every wall that it's possible to come from. There were some guys sitting on the floor, going through DVDs looking absolutely ecstatic. Just beyond them, were the rooms where Nicole held her technology workshop. There's a toy room downstairs that had kids playing around in it, and their parents standing around sipping their coffee. There was a kid playing a computer game, there were signs for a makerspace. There was also people who I haven't seen in a long time, people who I know to live in poverty in Peterborough, and to live rough. And I was happy to see them just comfortably going about their day or relatively comfortably using computers, printing things out, going up to the desk and asking for help and seem quite satisfied with the answers that they got. And something else caught my eye: a bookshelf full of pamphlets about naloxone, the local food bank, where to find housing. I'm guessing that bookshelf has been there for a long time. But I noticed it newly because of the conversation I had with Nicole about the changing role of the library.
Nicole Dalmer 21:33
The library as an institution, its traditional role really is as an Informational Palace, I will call it, and so it still really exists as such. There are so many different formats where you can access information: you can get newspapers, magazines, DVDs, ebooks, books, large print books. And so it is still this fantastic place where you can engage with information in such variety. What I'm seeing and what's exciting, and perhaps an area where we need to be doing a little bit more thinking about the role of library for library staff is the way the library is becoming really a community hub: a place where folks can connect with one another, a place where you can get a cup of coffee, a place where you can be warm in the winter, cool in the summer, and a place where you can engage with so many different programs. There's informational sessions, book clubs, a lot of libraries have makerspaces now where you can make buttons, make posters, digitize all of your photo albums or those slides that you have floating around. There's recording studios now at different libraries,
Sally Chivers 22:39
recording studios, I didn't even think of that when I was recording Wrinkle Radio from the road last year,
Nicole Dalmer 22:45
it's becoming a place where you can engage with information on a much broader scale than I think we would have ever considered before. And I think what makes the library so appealing too is it's really one of those last places where you can go and just be there's no expectation of payment.
Sally Chivers 23:02
I thought a bit about what made me lose track of this important place of the public library. Part of it was the COVID 19 pandemic, when we couldn't physically go to the public library. Part of it is that our infertility story really is an infertility story. It's not one of those that ends with a shiny, bubbly baby at the end of it. We don't have kids that we take to the programming there; we don't have kids that we take weekly to get piles of books and watch the joy on their face. Part of it is digitization. When I take something out from the library, I tend to borrow it online. That way, I never have to pay fines because it gets returned automatically. But it does make sense, of course, that the public library would be an important source of information. And yes, I can see the importance of it as a public space. It still surprised me and I'm still moved by how Nicole described the public library, also, as an important source for care,
Nicole Dalmer 24:09
You’re right, Sally, you can walk up to a person and talk to them at the library! And I think just like some of my research about information and care, we can see how much care work is required, I suppose, in librarianship because you are meeting people at where they're at in that moment with that question. And it can be a really mundane question like what does the Dewey Decimal code of whatever number mean? Or it might be someone who's in a certain crisis moment and really needs immediate helpful access, perhaps a number to a shelter, for example, a referral to the food bank. And so I think that thread of community and care is really obvious and required and is gorgeous in the public library when it's working well and I see the integration of social workers working in public libraries as a really helpful and necessary step forward too because there are more and more folks who need different types of supports that maybe public librarians weren't necessarily trained to know to do. They want to help, but they might not have that training. I think also having social workers in libraries is this fantastic next step to make sure that the public library can really be a key source of caring and of meeting people's wellbeing needs in that moment.
Sally Chivers 25:18
And yes, we have remembered this is a podcast about aging. And Nicole did tell me about some of the specific benefits of the library to older adults.
Nicole Dalmer 25:26
Another study I've been doing, I've been talking about the role of the public library, especially public library branches for older adults who are aging in the community. And they really speak about the library not only for its resources and its services, but the public library, especially branches that are a little bit more customized to the flavor of a community in being this place where they can feel connected and feeling a little less socially isolated. And it's a place where they can just go: they know the library staff, and even if it's just a hello, it's a point of connection there as well.
Sally Chivers 26:03
On Wrinkle Radio, we always ask guests to talk about how the topic affects their lives. I asked Nicole to tell me where she thought she'd go to for information as she aged. I don't think you'll be surprised by her answer.
Nicole Dalmer 26:17
Wherever I might be living as I age, if I move, one of the first things I always do is go to the local public library branch just to get a lay of the land. It's not a piece of information, but it's a bit of a house of information. I know that there are supports there to help me find what I need or a place just to sit if I need a little bit of a break or just to engage with other folks in the neighborhood. Those are all really important things to me and I am fairly certain they will continue to be very important to me as I age as well. One more plug for that Public Library.
Sally Chivers 26:52
Thank you, Professor Nicole Dalmer. You've taken us from worrying about these clunky systems and innavigable mazes of information, to really thinking about how to figure out that process together in community, connection, and comfort. I'm sure I'm not the only one who will be inspired by you to renew a public library card.
Sally Chivers 27:23
This has been Wrinkle Radio. I'm your Host Sally Chivers. Thank you for listening. I am so happy to announce that we are proud members of the Amplify Scholarly Podcast Network. If you're looking for other smart podcasts to listen to, check them out!. And also, please tell your friends, tell your parents, tell your neighbors, tell your colleagues, tell your kids, tell your local librarian, and remember, don't panic! It's just aging.