The quest for both patient and caregiver resources in your own community can be difficult. Bonnie Nuttkinson of the Alzheimer’s Association tells us the many different free resources for dementia patients and their caregivers.
Guest: Bonnie Nuttkinson, Program and Advocacy Manager, Alzheimer's Association South Central Wisconsin Chapter
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Transcript
Nathaniel Chin: Welcome to Dementia Matters podcast presented by the Wisconsin Alzheimer's Disease Research Center. Our podcast is here to educate you on the latest research caregiver strategies and available resources for fighting back against Alzheimer's disease. I'm your host, Nathaniel Chin. Thanks for joining us.
Nathaniel Chin: On this episode of Dementia Matters, we will be discussing the value and importance of community resources for people with dementia and their families and their caregivers. Our guest is Bonnie Nuttkinson programs and advocacy manager for the Alzheimer's Association South Central Wisconsin Chapter. Bonnie, Welcome to Dementia Matters.
Bonnie Nuttkinson: Thank you for having me here today.
Nathaniel Chin: So to begin, can you tell us about your job at the Alzheimer's Association?
Bonnie Nuttkinson: Yes. I've been with the Alzheimer's Association for a little over four years. I just celebrated my anniversary. Congratulations. Thank you. And before I was actually an employee with the Alzheimer's Association, I was a volunteer for two years and I did community education programs for us out in the community, helping to share the information about what families can do to get support and what are the warning signs.
Nathaniel Chin: And so what drove you to the Alzheimer's Association in particular?
Bonnie Nuttkinson: I always had a love for working with people who were older. And actually when I was in college I wanted to work with the 4H program with Cooperative Extension. And halfway through my graduate degree I realized I wanted to focus more with the aging population and aging issues. And my great grandma had Alzheimer's disease, and I was one of her caregivers in middle school. I didn't know that's what I was doing at the time. I thought it, you know, she made me a meal of canned vegetable soup with the can in the actual bowl. She gave me one of those pre-wrapped imitation crab sticks, tapioca pudding, and a small can of sprite because she didn't know how to actually cook and prepare and open things anymore. And I would keep an eye on her. But it wasn't until a few years ago that I realized I was actually one of her caregivers and my parents were having me actually help take care of her, not the other way around. And just seeing that we need to care for people, I decided to change my direction, work with a more of an aging population with aging issue, and it just all went from there. I really want to help educate people in a non-formal matter.
Nathaniel Chin: When you speak of education in a non-formal matter, can you walk us through the process after a person's diagnosed with dementia? What happens when you meet with them?
Bonnie Nuttkinson: Yes. So it really depends on where that person is at in the disease process. A lot of times we know people don't go to the doctor until they are much more in a middle or moderate stage. And so a lot of times we will get referrals from physicians, which kind of helped me focus what we're going to do to help a person. But first and foremost like to try to meet with the family and the main caregiver in person so we are able to talk through what is happening. A lot of times caregivers come in with something they really want answered or what they think the situation is, and then after we talk, it's a completely different pathway of what type of resources and support they actually need.
Nathaniel Chin: I make a lot of referrals from my clinic to community agencies, but what you're describing is something called personalized community care -- the way I have personalized medical care. And so it sounds like while we may have expectations going into the visit with you, in the end it really is dependent on what is needed.
Bonnie Nuttkinson: Yes, exactly. It's really interesting because I have a folder that I leave out on my desk -- it's a purple folder that says Alzheimer's Association -- and I just have some very basic information in there because when you meet with a family you never know what's gonna come out. And so instead of standing there and going through my resource cabinet and pulling out all these different programs, I meet with you, I then figure out what's going to be the most beneficial because it's so easy to overwhelm people with information that might not be relevant to their current situation.
Nathaniel Chin: So do you see any common issues or pitfalls that patients and their families experience after a diagnosis and needing help?
Bonnie Nuttkinson: Yeah. One of the biggest things I see is people will receive a diagnosis and then from there they might not reach out right away or maybe we get an initial phone call, I send them a general follow up email, here's some great resources, I don't hear anything. And then on average about 18 months to two years later we get a call where the caregiver is in crisis or the crisis is maybe the caregiver's stress level and they need help immediately. And then after we provide resources and get them connected to other services in the community, they always say, I wish I would've called you sooner. I wish I would have stayed in touch.
Nathaniel Chin: So then what would you recommend to people either before their memory clinic visit or afterwards to help them get through this process?
Bonnie Nuttkinson: Yeah. I think one of the biggest things is for people to be willing to hear information and to meet people. It doesn't mean you have to take any action, but just to be willing to take suggestions that the physician and the care team give you. So maybe meet with that referral that they provide. It doesn't mean you have to do anything, but just be open to hear that information and at least get some basic education about what the disease is.
Nathaniel Chin: And then it's good for them to know of your existence because then when that time comes that they're ready, then they can reach out to you.
Bonnie Nuttkinson: Yes, exactly, and we try to move at the speed that the family is ready. I will always encourage continuing to meet with us, continuing to attend programs, or continuing to explore support groups. A lot of people think support group, Oh, I don't know if I want to do that and well, what if I don't relate or I don't need that type of support, and that's one of the best ways that family member can get ongoing support from other people who are experiencing that exact same situation. There's so much power and having a shared experience to be able to feel true support.
Nathaniel Chin: Well you actually lead into my next question. The South Central Wisconsin Chapter of the Alzheimer's Association, they offer several caregiver support groups. So can you explain the support group and then some of the benefits that caregivers might get out of belonging to one?
Bonnie Nuttkinson: Yeah, definitely. I love when I talk to families and encourage them to go to a support group, but we know that with the way society is today, not everybody has the time to drive to a physical location, sit for an hour, have a structured conversation about what's happening in their life, and then leave and drive the other half hour back home or whatever it might be. So we offer online support groups through Google hangouts. We offer telephone support groups, and then also in-person groups. And each group is a little different because it depends who the makeup is and every group, every time is different because you have a different group of people who maybe have been going through different things each month.
Nathaniel Chin: And is it okay for people to come to these groups with specific questions or looking for help or advice from other people in similar situations?
Bonnie Nuttkinson: Yes, exactly. That's the main role of the support group is to be there. So people who have a shared experience can get information from each other about what has worked well for them, maybe what hasn't, and that's the best place they can learn from each other.
Nathaniel Chin: The idea of reaching people in difficult to access areas -- the rural communities -- through online and telephone, is pretty amazing. Are there other ways for people to ask questions, maybe not live? Are there forums that the Alzheimer's Association or other community organizations do?
Bonnie Nuttkinson: Yeah. One of my favorite things about the Alzheimer's Association is we have a great online presence, and one of our major platforms is called AlzConnected and it's like a online support group or message board essentially. You can meet people within there that you might continue to talk to on a regular basis and then be able to continue to connect with them more.
Nathaniel Chin: So what other programs are important for people with memory changes, their caregivers, their family members? What are other things like community agencies can do for these people?
Bonnie Nuttkinson: Yeah. Here in the area of the U.S. That I work in, we do a lot of partnership with county resources and trying to work together to provide education programs for families. We encourage families to go to some general education to learn what does the disease process look like, but after that we want people to really look at legal and financial planning because we know it is important to address those things while the loved one who is living with the diagnosis is able to give their input and say what they would like their care to look like and what their wishes are. So it's important to do that earlier. We work with different law firms, elder law attorneys in the area, and then also the aging and disability resource center, and we put together the presentation and get everything lined up, but we invite them into speak since they are experts in that area so they can help families.
Nathaniel Chin: And so after a person receives a diagnosis of any form of cognitive impairment, what specific legal and healthcare related issues do you think they should get done or completed right away?
Bonnie Nuttkinson: One of the first things we want people to do is get their advanced directives put in place and to think about who they want their power of attorneys to be and what that looks like.
Nathaniel Chin: And in addition to healthcare power of attorneys, there is the financial power of attorney, which does require an attorney to do.
Bonnie Nuttkinson: Yes.
Nathaniel Chin: Okay. But you would be able to connect people with the right attorney?
Bonnie Nuttkinson: Yes. A lot of times when I do in my job is, it's my job to know all the resources for families because a lot of times I don't have the actual specific answer or the ability to sit down and walk somebody through a certain legal issue because that's not my expertise, but my job is to know who are the elder law attorneys that families can turn to.
Nathaniel Chin: And for those that don't have an aging and disability resource center, you're referring to a county or state level support system.
Bonnie Nuttkinson: So usually like an area agency on aging is what most counties tend to have throughout the U.S.
Nathaniel Chin: Now with the Alzheimer's Association, are you providing some of this evaluation in the person's own home?
Bonnie Nuttkinson: Yes. Anywhere throughout the U.S., you might find it a little different based off of each chapter of the Alzheimer's Association. Some chapters have grants where they do very specific longterm management for individuals and meetings. Some chapters maybe they meet once or twice in the home. A lot of times for me, I have some families that are in more rural areas, so it would be great if we could meet in the home, but it just doesn't always work. So we've used Google hangout and SKYPE to be able to make sure that we can meet and get together, but we're able to go to people where they live and help provide the resources they need.
Nathaniel Chin: And these are all free services.
Bonnie Nuttkinson: Yes. All of the services from the Alzheimer's Association are free. We raise our own funds so that we can have these resources be free for families.
Nathaniel Chin: One of the services and support groups that I know that you offer in particular deals specifically with people with mild cognitive impairment -- MCI. Why did your organization, your region, address this particular group of people and what do you hope to offer?
Bonnie Nuttkinson: Yeah, I think just where we live in the Madison community a lot of people are going to the doctor maybe a little earlier. And so we have a lot of people who have a mild cognitive impairment diagnosis, and that's not the same as somebody who has an Alzheimer's diagnosis. We don't know if it's going to progress or not. So it's not always appropriate to put those two categories together unless everyone is comfortable.
Nathaniel Chin: In fact, you are also having a series of guest speakers, of sort of training programs, a connection to the research world through your group on mild cognitive impairment.
Bonnie Nuttkinson: Yeah. We are working with the Wisconsin Alzheimer's Disease Research Center, specifically on a program called Living Well with Mild Cognitive Impairment where we're going to meet quarterly and bring in a researcher on a specific topic and then offer a healthy snack. A lot of people love donuts, but we want to get you some good brain food and from there, provide some time for basic support for each other, along with an education piece and component. And then still to keep people connected to resources and to try to get them or maintain their involvement in research.
Nathaniel Chin: Another thing that you can offer people with cognitive change and their caregivers is this opportunity for advocacy. Can you speak more to that?
Bonnie Nuttkinson: Yes. At the Alzheimer's Association, we see people really want to go and share their stories and make an impact, and we know one of the ways we can have the biggest impact is by making change within our legislator. Whether that is increased funding for Alzheimer's and other types of dementia research, whether it's through certain policies and bills that can help us. Right now we are really working on wanting to pass the BOLD Act. It is Building Our Largest Dementia Infrastructure for Alzheimer's Act. And this would help us better combat the crisis and create Alzheimer's public health infrastructure to address Alzheimer's disease, because right now it is a public health crisis that a lot of people are not aware of and the more and more we talk to our legislators about this, the more we're going to be able to help our nation as a whole with this health crisis.
Nathaniel Chin: Well, with that, I'd really like to thank you, Bonnie, for coming in today and speaking about community resources, and I hope to have you back on Dementia Matters.
Bonnie Nuttkinson: Well, thanks for having me Nate.
Nathaniel Chin: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's disease centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments email us at dementiamatters@medicine.wisc.edu. Thanks for listening.
