Episode 139: Community Care Programs for Care Partners

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

We often think of support groups and services for people with Parkinson's, and it's true that they can be valuable in helping to cope with the disease and to improve quality of life, but what about the care partners who provide support sometimes 24 hours a day? They shoulder many tasks of daily care, as well as the usual activities of daily life, such as transport, food shopping, managing finances, and more. So they too need support services. Fortunately, the Parkinson's Foundation recognizes caregivers' needs and provides a variety of services and resources.

At a meeting in Boston of US and International Parkinson's Foundation Centers of Excellence directors and staff, I spoke with Cara Iyengar, a social worker who is the coordinator of the Center of Excellence at the University of Iowa in Iowa City. She told me about some of the foundation's resources that she shares with care partners, what she has found to be most helpful to them, and how else she supports them in her state, where many are in rural areas. She started by telling me her approach to finding out about the care partner. Today's podcast is sponsored by Kyowa Kirin.

Cara Iyengar 2:10 I make it a point when I'm meeting with patients to ask about their caregivers, so that's part of my regular assessment. It kind of depends on the person, but I always make sure that they're aware of the online resources, particularly the new caregiver course, which a lot of people have found really valuable, and then also we have that Caring and Coping booklet, which is really great. So I make sure to give that to people even early on, just because I think that it's nice to have on hand when you need it. It's always better to plan ahead rather than to be in a crisis. And also the helpline, so that they know they can always reach out to me, but they also have that helpline as well.

Dan Keller 2:51 You're in Iowa, which presents certain unique situations and problems. What do you find about Iowa that might be different from, say, Boston or New York City?

Cara Iyengar 3:02 That's a great question. So, Iowa's a rural state. We have about 3 million people, which is, I think, smaller than some cities, so that is certainly a challenge. I do hear from some of the other centers that they have these robust in-person programs in these larger cities, and while we do have some programming, we're trying to reach patients who sometimes travel three, four, five, six hours to reach us, and so we have to be a little bit more creative in that sense.

The pandemic was helpful in a way, because it really pushed us to up our virtual offerings, but really getting people to us and getting people to connect with each other, given the distances, and given some of these rural communities that don't always have a support group within a reasonable distance, is certainly a challenge.

Dan Keller 3:49 Can you make a support group by teleconference or Zoom or something help facilitate that?

Cara Iyengar 3:54 Yes, so there are... when we became a Center of Excellence, there was actually already a very robust support group in our area, and so rather than try to start our own competing support group, we've really partnered with them. With the pandemic, they went from being this local support group—in-person local people—to having those people, but also going virtual and having people attend from much further away, who didn't always have an option closer to home, even during pre-pandemic times, to meet. So yes, definitely those virtual groups are very helpful, but of course, there are problems with those as well.

Dan Keller 4:36 Like what?

Cara Iyengar 4:37 Well, not everybody has high-speed internet access, and then, of course, there's that Zoom fatigue that everyone's having, so I think it's just sort of one of those things where we're learning all the time and trying to work with our patients and our caregivers to figure out what they need and how best to get that to them.

Dan Keller 4:54 Given the geography, and that hopefully the pandemic won't last forever, do you think this kind of support group will outlive the pandemic?

Cara Iyengar 5:03 I hope so. There is something to be said for meeting in person, and I am seeing around the state and the areas we serve that they are starting to meet in person again. But I would really like to see some of these virtual components continue. I think it's just such a great way to meet people, not only who are geographically isolated, but you know, with Parkinson's, sometimes it is hard to get out of the house, and as a caregiver, particularly, you don't always have someone to stay with your loved one. So these virtual sessions, these virtual groups, really provide that opportunity for them.

Dan Keller 5:33 What are some of the ways that you support care partners?

Cara Iyengar 5:38 I kind of look at it three ways, so I want to provide resources, I want to connect them to each other, and I want to be there to provide one-on-one support as well. So resources would be all the wonderful Parkinson's Foundation resources, as well as local resources. There are different organizations around our state who provide support to caregivers, not necessarily Parkinson's specific, but to caregivers in general, so I try to make sure that we're partnering with them, providing that information.

And then connecting them to each other, so that can involve letting them know about support groups, but also we've had some innovative ideas come from patients themselves, caregivers themselves. I have a caregiver who is working to start kind of a mutual aid telephone tree, so he's developing a system where caregivers can get on a phone list and call each other directly on demand, rather than trying to make time for a specific meeting, where that doesn't always work from a caregiving perspective. So, really working with caregivers and patients, because they know what they need, and how can we support them with their ideas?

And then also just being available, you know? I have a lot of caregivers who just call me out of the blue. They don't have a specific question, they're overwhelmed, they just need someone to talk to, and I'm happy to do that with them, and just listen and provide support information if they need it. A lot of times, just letting them know they're doing a good job, and that they're important, and that their needs matter too.

Dan Keller 7:04 This phone list, is it specific? Do people list like, "I know about finances," or "I know about this," or it's just you reach out and hope they know what they're talking about?

Cara Iyengar 7:14 Yeah, so I think he's, you know, still developing it, but I think his idea is just that no one understands what caregiving is like but a caregiver, and so just having someone that you can call who understands venting or getting that support—not even necessarily specific information, but just knowing there's someone who knows what you're going through.

Dan Keller 7:35 What kind of programs or services do you want to see develop that aren't there now in Iowa? And I assume that would apply to other rural communities.

Cara Iyengar 7:47 So, there is a lot. We're a relatively new center, so we have a lot of room to grow. Coming to this meeting today, I'm getting a lot of good ideas, but I would like to find a way to increase the number of people participating who are in remote areas. I'd also like to see us focus more on some of our underserved populations, so we have a very large Hispanic population in Iowa. So, I'd like to figure out some ways to reach that population in particular, and then also some of our underserved younger patients. Again, because we are a small state, we're very spread out. It's hard to get our younger-onset patients connected, and so just kind of looking at some different ways to do that.

Dan Keller 8:31 Do you get feedback from caregivers? Have they told you what are the most important things or most helpful things they've found from you?

Cara Iyengar 8:39 Yeah, I certainly do. That's one of the wonderful things about making myself available and having my phone number out there, because I do get calls from caregivers with the different things they're struggling with, with the different things they'd like to see. It does seem that Parkinson's patients and their caregivers, in particular, tend to be very engaged, and they want to be involved, and they want to help make something happen, so pretty regularly, you know.

I'll have a caregiver come and say, "We'd love to go to a support group, but we don't have one," and the Parkinson's Foundation has excellent resources for starting one, so I'm able to provide them that information and kind of help support them if that's something they're interested in doing.

Dan Keller 9:19 I think they put out a whole book they can download or order in hard copy.

Cara Iyengar 9:25 Yeah, yep, they do. And they also have meetings, virtual meetings, and things to support them as well. It's really about providing that support, but also empowering people to kind of be part of building that support themselves.

Dan Keller 9:38 Does it have to be restricted to your own local geographic area? It seems with Zoom, you could be part of a support group in Washington state or San Francisco, or whatever.

Cara Iyengar 9:47 Yes, absolutely. So I am part of a quarterly call with Parkinson's social workers, and during the pandemic, one of the wonderful things is all of these niche support groups were coming out—so Mandarin support groups, LGBTQ support groups, people with parents with Parkinson's, those sort of things—and because of Zoom, they're open. So while there may not be enough LGBTQ people with Parkinson's in a small rural town with 1,000 people who want to be in a support group to have an in-person support group, certainly in the whole country there is, and allowing people to connect that way has been one of the few nice things to come out of the pandemic.

Dan Keller 10:26 Is there a directory of specialized support groups, specialized communities that form a support group?

Cara Iyengar 10:32 You know, I am not aware of one, but I think that that would be something that would be really nice to have.

Dan Keller 10:38 Maybe the Parkinson's Foundation should start something like that, just a directory. Do you find that support groups are very welcoming, or are they a little bit, I don't know, provincial in their thinking? Who's this person from this other area?

Cara Iyengar 10:53 I think it depends, and I think that welcoming also depends on the person who's attending. So I do hear a lot of times from my younger-onset people that they don't find the local support groups welcoming, not because the people are unwelcoming, but because they don't look like them, and so I think that that issue of diversity in all sorts of different ways is something that needs to be overcome. But as far as someone from another state participating in a Zoom call with people mostly in a different state from them, I think those tend to work out pretty well. And in fact, our local group would routinely have out-of-state participants, which was wonderful.

Dan Keller 11:35 I suppose different people would have different needs. If you're a young-onset Parkinson's patient, you might have a lot of concerns about parenting, whereas for the grandparents in the group, that's out of the way already.

Cara Iyengar 11:47 Certainly, yes, and that's another barrier as well. So these are big questions to be addressed and to work with our patients and our caregivers to figure out what would be most helpful to them, and how can we work together to provide that?

Dan Keller 12:02 If you were to encapsulate a nutshell message to people about support and resources, what would you say?

Cara Iyengar 12:10 So, I would say that Parkinson's is not the flu; it is a long-term disease. And so I think that a lot of times with caregivers, there's this sense of wanting to really throw yourself into it and do everything you can to support your loved one, and that's admirable, but when you're looking at years or decades of this, you really have to also consider your own needs in the long term and your own need for support.

I really encourage people to think about that, even from diagnosis. Not only do I want to get the patient the information they need, not only do I want to get them connected to a psychotherapist if they want one, or a support group, I also want to talk to the caregiver about, "Who is it you can talk to about this?" because this disease affects you too, and you're going to need support as well. And so, what type of support would you find most helpful?

Dan Keller 13:08 Have we missed anything interesting or important to add?

Cara Iyengar 13:12 I think we really kind of covered it. I would love to see caregivers really put themselves in the focus sometimes and make sure that they're cared for as well.

Dan Keller 13:21 Great. I think maybe now hearing you, they might. Thanks.

On our website at parkinson.org you can find a digital, print, and audiobook called Caring and Coping: A Care Partner's Guide to Parkinson's Disease, as well as Caring and Coping worksheets. Just go to the website, click on "Resources and Support" at the top, go to the PD Library, and search for Caring and Coping.

Also in the PD Library is a booklet called A Guide for Support Group Leaders, which can take you through the process of starting, facilitating, and maintaining a support group, including information on care partner-only groups. The guide can also serve as a reference for existing groups looking to improve or adjust how they work. In the PD Library, search for "support groups," and you'll see a link to the guide. You may also find a couple of past podcasts helpful. One is called The Care Partner Experience, and the other is Caring for Loved Ones with Parkinson's Disease.

Every November, the Parkinson's Foundation joins with organizations across the country to honor care partners for National Family Caregivers Month. Care partners continue to adapt to new circumstances and work hard to keep their loved ones healthy and safe. This year, we aim to empower care partners with resources that will help them and their loved ones with Parkinson's disease live better lives. Our theme for 2022 National Family Caregivers Month is hashtag #CarePartnersCan. To learn more about how you can get involved this National Family Caregivers Month, visit parkinson.org/caregiver.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's, including finding your way around our newly redesigned website. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. And thanks again to Kyowa Kirin for sponsoring today's podcast. Thank you for listening.

Cara Iyengar, MSW, LISW, is the social worker and Center of Excellence Coordinator for the University of Iowa Health Care Parkinson's Foundation Center of Excellence. She is a graduate of the University of Iowa and the University of Northern Iowa and has over a decade of social work experience. Cara has worked in a variety of healthcare and community settings but has mostly focused on working with older adults and caregivers. In her current role she assists patients and families navigate their Parkinson's and related diagnoses and helps them access resources and information. 

Cara is the current co-champion for palliative care at her COE and also serves on the COE Clinician Advisory Council on Palliative Care.  Since working in her current role, Cara has been involved with a variety of projects with the Parkinson's Foundation, including Patients Advisors in Research (PAIR), Hispanic Outreach Leadership Program, and has served a peer reviewer for the Parkinson's Foundation Community Grants.