Full Show Notes
Additional Resources Mentioned
Takeaways
We shared 4 tips:
- Start with what you need right now
- Choose the best format for you
- Explore groups that match your situation
- Don’t settle, but don’t give up either
Take Action: Support Groups as Self-Care
If you haven’t yet tried a support group, consider committing this month to looking for one. Keep in mind that attending a support group isn’t just about learning how to care for your loved one — it’s also a form of self-care. You’re taking care of yourself while learning valuable information and building connections with others who understand.
Resources to Get Started:
- Alzheimer’s Association 24/7 Helpline: 800–272–3900. Masters-level counselors can help with crisis intervention, finding resources including support groups, and they offer interpretation in over 200 languages.
- Community Resource Finder: Visit the Alzheimer’s Association website and enter your zip code to find support groups and other services in your community.
- The Caregiver’s Journey Navigating Dementia Caregiving Roadmap: Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free.
Support groups truly are lifelines on our caregiving journeys. They remind us that we’re not alone, connect us with others who understand, provide the practical and emotional support we need to keep going, and also to remind us to care for ourselves along the way.
Read More in This Blog
https://sueryansolutions.medium.com/57-finding-the-right-support-group-4-essential-tips-b4bab67a93b7?postPublishedType=repub
Full Episode Transcript
Do you wonder if support groups are right for you? Do you know how to find one? In this episode, Sue and I are talking with Kim Franklin, Senior Program Manager with the Alzheimer’s Association, about things to think about when looking for a support group and how to find the right one for you. We’re sharing four tips.
If you’re following along with the Navigating Dementia Caregiving Roadmap, this podcast supports step four. The roadmap’s available as a free downloadable digital guide on the guides page of our website and it’s also got its own interactive page on our website, the caregiversjourney.org. Kim, welcome. Thank you so very much for joining us today. We really appreciate the time that you’re sharing with us.
Tell us more about yourself and about what you do. Thank you, Sue and Nancy. As they said, I am the Senior Program Manager for the Alzheimer’s Association, Georgia Chapter, and I’ve been with the association for 19 years. I help with facilitating support groups, creating support groups in communities and managing those groups and assisting families that are looking for those types of services. Which is great.
We’ve learned that support groups, they’re like lifelines and we’re around other people who are going through the same thing we are. And we know we’re not alone.
It does help with that. And honestly, I leveraged support groups mainly for education. But part of what we’re gonna talk about today is really all the different reasons why a support group might be right for you. And I also found my support groups mostly online, but there’s all different ways to participate.
Yeah, and you’ll find that they can be really therapeutic. It can be a chance for people to come together, to let off steam, a moment for you to breathe and hear from others in a situation that’s similar to yours or to share tips that might help with your caregiving journey.
But we also find that many people can be very resistant to going to an actual group.
Yeah, and there are a variety of different reasons for it.
One of the ones that I heard a lot and kind of felt on my own sometimes is, well, I don’t have time. That’s an easy one.
And I think you definitely feel like you don’t have time. Others feel like they just don’t need it. I’m good. I got this. I’m a terrible example of that. I can do it all. I can handle it.
Yeah, and we find that a lot. Caregivers think that they’ve got it on their own. They don’t need help or support. But it’s also important to recognize that in some cultures, it’s really difficult for them to reach out and ask for help or support because it’s a very private family matter and they’re trying to take care of everything at home on their own.
And this really leads us into tip one, which is you know, start with what you need right now. Start wherever we are. You know, what do you need? Do you need emotional support? Do you need practical advice? Do you need support for you as the caregiver and also for your care receiver? One of the things that’s going to happen is over time, over the journey, our needs are going to change based on where we are in the different caregiving stages, which we call in the beginning when there’s a lot of autonomy still or in what we call the messy middle where you’re asserting more control or later on when you’ve really had to take the majority of the control. And so our needs and what we want from other people are gonna change over time. Absolutely, and what I normally see is that at the beginning or in the beginning, maybe they need more education and it’s not as much support that they’re looking for yet. But when you get to that messy middle, a lot of times they’re looking for more emotional support.
And then when you get to the later stages, they’re just trying to keep up. And sometimes they’re looking for support from others, friendship with others who really actually understand what it is they’re going through. So I always tell families it’s really important to be intentional and think about what you need and write those things down, especially in between groups when they’re meeting. So that when you get to group, you remember all of the challenges you’ve had you know, those several weeks between and all of the information that you want to share or get help and assistance with.
I really like that. I like the idea of writing it down in between. So you remember what you want to talk about and how you want to share with other people. I like that. You know, it’s also important to explore the options in your area in person and then to understand that, you know, there are lots of different formats. So let’s talk about tip two, which is to choose the best format for you.
There’s in-person, there’s virtual or online forums. There’s also hybrid options where you might have a combination of in-person and online. I stumbled across an online forum on Facebook and it met my needs early on very much right where they were. I was looking for practical advice. I felt like I was struggling with practical advice and it was really nice to see online, so many people dealing with a lot of the same issues I was dealing with and really all the different creative solutions and advice they have for people who were dealing with those issues made me feel not so alone, which was awesome. I found the same thing with my mother-in-law who I hooked up with the online forum on Facebook when my father-in-law had Alzheimer’s and she made the exact same comment when she got the first time I saw her after she had been online. She said, you know, there are other people who are dealing with exactly what I’m dealing with. She was, she was amazed.
Well, one of the examples I found that was just great is a hybrid example. You mentioned hybrid examples and it was sisters. And the one sister lived in the town where the parent had the diagnosis. The other sister lived in another state and they had the meeting that was both in person and you could be attending on Zoom and both sisters were able to get information at the same time. They could both ask questions, they could learn together, and it really helped them stay engaged, but also to stay at the same level. And they were in the same support meeting. They were in the exact same support meeting. I like that. And so we encourage you, especially in the beginning, if you possibly can, we really encourage you to go to the meetings in person so that you can actually meet other people, start developing relationships to what you had said earlier, that you can then be calling on first in the future. And you know, if you can’t then try a hybrid meeting or do something in Zoom. But there are also meetings where you can go to the meeting at the same time, and I used to go to these, there was a meeting that my husband could go to at the same time I was going to a meeting. So if you’re looking at meetings, look for one at once for the caregiver and the care receiver at the same time. Yeah, that’s a good point because the groups all look different. You know, they, like you said, they can be hybrid, they can be in person. Some allow you to bring your person that’s living with the disease as an option too. And some people are probably sitting there wondering what is the time commitment of these groups? And that all looks different too. Most of them meet one time a month. You’ll find some that meet twice a month. And then I’ve got a few that even meet weekly. So, you really can find whatever it is you’re looking for. And as Nancy shared before, you’ll find these in person or virtual, and most of them take about an hour of your time, maybe an hour and a half. So you should be able to find exactly what it is you’re looking for. Which leads us into tip number three.
And tip three is to explore groups that match your situation. So most have online options. Some are in person, some are hybrid groups.
They meet different times of the day, different days of the week. Some are during the week, some are on the weekend. So again, you can really find a lot of different types of groups out there. And then we also have groups that are diagnosis specific. So if you’re sitting there thinking, well, my loved one doesn’t have Alzheimer’s, they have Lewy bodies or they have FTD. We, as the Alzheimer’s association, cover all forms of dementia, but you’ll also find some groups that are specific to those other forms of dementia. But again, you are welcome to attend any of our groups, because we do serve all forms of dementia. And once you find that general caregiver group that you’re looking for, make sure it’s one that fits your needs. And we’ve said that many times, but there’s some groups out there that are men specific for caregivers that are men only groups. You’ll find some that are for younger onset diagnosis. So those individuals are kind of the care partners especially feel like they’re in a unique position with those individuals because they’re diagnosed at a much younger age. So we’ve got a group like that that is completely virtual for people. And then you may find some groups that are specific to early stage diagnosis. So those that are in the early stage so that they can attend groups and interact as well.
So again, all of our groups are not specific to Alzheimer’s. We serve all forms of dementia and you can reach out to us to help you find whatever it is you’re looking for in the community. And then you also mentioned, I think to me that while of course we’re talking to the Alzheimer’s Association here, you can go out to the Lewy-Body Association or the Association for Frontal Temporal Dementia. You know, there are other places where you can find support groups.
Some of those tend to be more diagnosis specific. And then also we, of course, in the roadmap link to the Alzheimer’s Association Community Resource Finder. And in there, it points you to things that are churches or to, know, it’s not just Alzheimer’s support groups that are managed by Alzheimer’s, but it’s the ones that might be managed at your church or at your local senior center. It’s really a thorough enough resource, the Alzheimer’s Association Community Resource Finder, that we link to in the roadmap, because it’s got a little bit of everything. And it’s a good place to start. You can search in your community for what might be in your community and just pull up support groups and pull up the diagnosis and see what they have. So there are a lot of different ways. And that really leads us into tip four, which is don’t settle and don’t give up. The first meeting you go to may not be the perfect meeting for you. However, it may not have been the perfect meeting for somebody else who’s there and they’ve journeyed before and you can ask the question. So try two or three different meetings before deciding. Try the hybrid meeting, try a virtual meeting, try in person, try different days of the week and times of the day to kind of see. But please, please, please don’t drop a support group just because one of them doesn’t work for you.
One of the things that I learned when I went to a support group meeting and it wasn’t serving me where I needed with some things for my dad is I asked the other people in the support group. I said, you know, what other groups have you gone to that have been helpful? And they said, well, tell us what’s going on. So they recommended a different support group. So people in the support groups will help guide you because it can be realistic. So number one, don’t give up, keep trying. I like it. Yeah. And some other red flags that I’ve seen are constantly negative sharing amongst group members. So you’re not really feeling fulfilled when you leave the group. Maybe the leader is dominating the group and the individuals that are attending, aren’t getting space to share their concerns or what’s going on with them. and then on the flip side, some of the positives that I’ve heard are there is balance sharing or there’s really practical focus or you’ve got people in the group that are a few steps ahead of where you are and your loved one’s diagnosis. So they’re able to offer you support and guidance on what’s to come. So, you know, it’s important again that you find a group that really fits your needs. And as Sue said, you know, a lot of times the members of the group can help you find other groups because they may be attending more than one group as well. And it’s important also that you remember that as the needs change of your loved one or your disease starts to progress that you may need a different kind of support. So you have permission to leave that group and find another group that matches where you are on that journey and find something that works for you. So, you know, just making sure you have those multiple support services in place and, you know, attending more than one group is absolutely allowed. And I have several that will attend more than one of my group in the community. So it’s a great way for them to be surrounded by several different care partners. And you get different facilitators, which is also a good sort of way to go. I was talking to a friend of ours who runs a support group that focuses on role playing. And so, you know, that’s also might be exactly what you need or exactly what you don’t need. So, you never know. You never know. But all of these lead us to a couple of things. One of them is taking an action state. All of this leads us to several things, one of which is taking an action step.
Take action. This month, if you haven’t gone to a support group, commit to looking for one, try to find one, and then also recognize, we’re talking about all the education and things that you can learn and all those things, but it’s a form of self-care. When we go to support groups, we’re taking care of ourselves as well. So we’re learning about how to care for our care receiver, but we’re also learning a lot about how to care for ourselves.
Kim, thank you so very, very much. Before we wrap up today, is there anything else you’d like to add? Would you please share how they can find the Alzheimer’s Association?
Yes. So number one, please try out a support group. Make that one of your first priorities if you are taking care of somebody with Alzheimer’s or another form of dementia. But to access the Alzheimer’s Association, the number one resource I would share is our 24 seven helpline. And that number is 800-272-3900. again you can access that 24-7. The masters level counselors that are on the phone can help with crisis intervention, they can help with finding access to resources such as the support groups we’ve talked about, and they have a help line or a language line where they can access over 200 different languages. That’s absolutely amazing. Yeah there’s no barriers to that either.
And then as we discussed a little earlier, the community resource finder is another resource. So you can go online to our community resource finder, type in your zip code and it will bring up a whole list of services, whether it be support groups or in-home care that you can access right there within your community.
You know, as we mentioned at the beginning here, this is all part of step four of the Navigating Dementia caregiving roadmap, either you can download that digitally or you can go to our interactive roadmap, which is online. But if you click on step four online, you will actually see links to the community resource finder and you’ll see the 1-800 number. And we’ll also put both of those links as well as the telephone number in the podcast description. So you can just click, you know, scroll down to the podcast description and get that information.
Okay, well, let’s summarize. Thank you, Kim, for joining us today and discussing how to find the right support group for each of us. We shared four tips. Tip one is start with what you need right now. Tip two, choose the best format for you. Tip three, explore groups that match your situation. And tip four, don’t settle, but don’t give up either.
Now, if you have tips on finding the right support group or really what constitutes the right support group for you, please share those on our Facebook page, our Instagram page. The links are in the show notes. Please share this podcast with your friends. Please follow it or subscribe to it. We really, really appreciate it. For every podcast, there is a matching blog.
So look for this podcast number and then on our website, find the blog that has the same number and it’s effectively the notes for this podcast. As I already mentioned, the Navigating Dementia Caregiving Roadmap, you’ll find a link for that in the podcast description, which is also the show notes, and you’ll be able to click directly on the same information that we provide you in the roadmap.
And as we always say, We’re all on this journey together. Yes, we are.
