Support for the Supporters: Resources for Alzheimer’s Caregivers

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. November is both Alzheimer's Awareness Month and National Family Caregivers Month. Over 11 million Americans are unpaid caregivers to people with Alzheimer's disease and other forms of dementia, providing more than 18 billion hours of care. In honor of this special time to recognize and honor family caregivers across the country, we wanted to talk about caregiving and share some strategies and resources. Joining me today for this discussion is Ms. Bonnie Nuttkinson, a research program coordinator here at the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin-Madison. Bonnie has been interacting and caring for people with dementia and their caregivers, leading her to be a professional caregiver in grad school and to work and volunteer for seven years at the Alzheimer's Association before joining us at the Wisconsin ADRC. When Bonnie is not working, she loves spending time with her pets, Frankie, Boots with the Fur, Taz, Toby, and Archie. Putting the number of animals and their names aside, Bonnie, I'm really excited to talk with you about this very important subject of caregiving.

Bonnie Nuttkinson: Thank you so much for having me here with you today, Nate. I've spent so much of my career supporting caregivers and people living with memory and thinking changes that having the ability to share some tips with you and other caregivers is very special for me today.

Chin: For our listeners, I've known Bonnie for many years and I've interacted with Bonnie outside of research as well as when she was working at the Alzheimer's Association. Bonnie, I'm really happy to have you here. I'm hoping you can share with our audience, first, what exactly it is in your background that motivated you and has inspired you to do such important work.

Nuttkinson: from the time I was a little girl, I interacted with people living with dementia, and I didn't even know it at that time. My great grandma was diagnosed with Alzheimer's disease when I was in middle school. I was one of the first people to notice the signs, but I just thought she was my eccentric, bird-loving granny. I didn't realize that that wasn't typical, the behavior she was doing. I just thought she was, you know, a little different. I then learned that, "Oh no, she got lost on her way driving me to basketball practice because she really didn't have any idea where to go." I had firsthand experience before I even understood what that was.

Chin: What did you do with that experience though? You moved on beyond your family experience to then really focus on this as a career.

Nuttkinson: Yeah, so when I was in grad school–I went to grad school because I wanted to be a 4-H agent and I wanted to work with youth. Halfway through grad school, I was caregiving as a professional caregiver for a home care company and spent most of my time caring for a woman with late-stage Alzheimer's and knew I wanted to help support families and people living with dementia in a different way. I love non-formal education and being able to share information with people so they can better enhance their lives. I started to volunteer at the Alzheimer's Association and next thing you know, I was working there supporting families. Then as my family's own caregiving journey with my granny increased, I moved over to research so I could still be helping people but I wasn't the one in the thick of it with them anymore, and here I am today.

Chin: Bonnie, so here at the Wisconsin Alzheimer's Disease Research Center, you are an integral part of what we call the Care Research Core, which is not a typical core for the research programs. Can you share for our listeners what exactly your work is on?

Nuttkinson: Yeah, so in the Care Research Core, we are very fortunate to really think about what research we can do that's going to help people living with dementia and care partners and translate that into actually helping their day-to-day lives. At the Care Research Core, we do numerous different things, one of them being supporting trainees and getting more people interested in care research. We need more researchers focusing on that to be able to keep moving the field forward, but we also want to make sure we have people available for studies. We have a registry called the Dementia-CARES Registry where we look for caregivers and people living in the early stage of dementia or memory and thinking changes to be recruited for studies.

Chin: It's such important work, Bonnie, and, of course, I'm very proud to have you guys at the Alzheimer's Disease Research Center here and be able to work with you. I'm gonna ask you a basic question, which I think is important just to get out there so we're starting from the same place–what exactly is a caregiver? How are you defining it? How is your core defining it? How does one know if they are a caregiver?

Nuttkinson: Yeah, Nate, that's a great question. I would say actually a lot of people wouldn't even say they're a caregiver even if they meet some of the items I'm going to talk about. In general, a caregiver is a person who helps another person with their daily needs. That person could be paid or unpaid. It might be a family member, a friend, a healthcare professional, a social worker, maybe somebody from your spiritual or religious organization. Caregivers assist with a variety of different tasks. They might help with bathing or dressing. Maybe it's grocery shopping. Maybe it's as simple as phone call reminders to take your medications. They might help prepare your medications. Essentially, caregivers really help people maintain their independence and improve their quality of life. Sometimes people provide short-term care and other times it's long-term care. There’s quite a few people who don't like the term caregiver. You'll see some people say, "Call me a carer." Maybe some people say, "Call me a care partner," because we're in this together. Then for your second part of the question, how would you know if you are a caregiver? If you help someone get to appointments, maybe it's as simple as, "Well, I'm going to the drugstore anyways, do you want to come with?" That is still something that would identify you as a caregiver. Maybe you run and get your neighbor's groceries because it's harder for them to get out or they come with you. That's a sign you could be that person's caregiver or care partner. Maybe you help with housework. Maybe it's outside work, personal care. Maybe it's medical care, taking that person to the appointment or helping to make sure they have their appointments arranged, finances. Maybe it's as simple as making sure that they have a meal ready for them in their fridge and you have it all set to go.

Chin: So there's a lot of ways a person could be considered a caregiver, even if they aren't considering themselves that in the moment. When it comes to caregiving for someone with Alzheimer's disease or a neurodegenerative disease—and I mean Lewy body disease, Parkinson's disease, frontotemporal disease, or vascular disease—it is different. It's a different type of caregiving. That's what I have learned being in clinic and interacting with you, Bonnie. I want to share some statistics that I've come across that I think are really profound and important for caregivers to know. The prevalence of depression is higher among dementia caregivers than any other caregivers. 30 or 40 percent of caregivers of someone with dementia report depressive symptoms. The prevalence of anxiety is also higher—it's at 44%. Caregivers are reported to lose between 2.4 and 3.5 hours of sleep per week compared to non-caregivers. There's also an increased incidence of medical conditions like hypertension, as well as higher levels of stress hormones and inflammation in caregivers of those living with dementia. When interviews are done with caregivers, they report more stress than any other type of caregiver. When it comes to emotional stress, 59 percent in one survey reported high to very high stress, and 38 percent reported physical stress being high or very high. I'm getting this information from the Alzheimer's Association's Annual Report in 2023, which we'll make available in our show notes. The reason I share this is because these are pretty remarkable numbers when we think about it. Bonnie, in your experience as someone who worked with caregivers in your professional capacity, why is it different? Why is caregiving for someone living with dementia particularly challenging?

Nuttkinson: Thanks for the question, Nate. Caregiving for someone with dementia is particularly challenging because, one moment, that person might not be showing any signs or symptoms of the disease, and the next minute—or maybe the next day—that person is confused, isn't able to do things on their own, and you don't see anything wrong with them. We don't see that the brain is, quote-unquote, broken—my technical term there, right? We don't see that, so it's really easy to forget that this person can't do what we've always expected them to do. It's not like they have a broken arm, where we see the cast on their arm. It changes so much day to day. I know for me, with some of the folks I've cared for, we go out in public and the person is really good at using everything they have to "be on," you know, to be really on and in the moment. The people around are like, "Bonnie, what are you saying? This person isn't acting like what you described to me." What they don't see then is, at home, the next two or three days, that person is wiped out because they had to use everything they had. Now we're having much more difficulty doing basic things because all of their energy was used up to be able to act like themselves before. So I think that's one of the big challenging things. Then as the disease progresses, the needs change. Someone at first might not need a lot of supervision, but over time, there's a good chance they're going to need 24/7 supervision. That is a lot for anyone. Then it comes with more complex challenges, and also thinking about finances. Can my loved one go to a facility? Can they stay at home? What do they want versus what I can provide? A person's social support system usually grows smaller and smaller as the person they're caring for becomes the main focus.

Chin: I'm glad you ended with that, Bonnie, because I think that's such an important point—this idea of a social support network and having people in your community who can help you. In preparation for our conversation today, I went on the internet and looked for resources and tips that someone who's a family caregiver might be searching for and what they might find. I will say, there's a lot of great material out there. There's also some material that is not evidence-based or from what I would call the more legitimate of sources. One thing I came across, and I wanted to present it to you to see what you thought of it as someone who specializes in caregiving and caregivers for those living with cognitive impairment, comes from the Caregiver Action Network. They have ten tips for family caregivers, and I'm going to read them off to you and I'm hoping you can tell me what you think. The first one, which is related to what you just said: seeking support from other caregivers, knowing that you are not alone. The second one is taking care of your own health so that you can be strong enough to take care of someone else. The third one is accepting offers of help and suggesting specific things people can do to help you, and I use that one in clinic. Learn how to communicate effectively with doctors. Caregiving is hard, so take respite breaks when you need to—and often. Number six: watch out for signs of depression, and don't delay getting professional help when you need it. Number seven: be open to new technologies that can help you care for your loved ones, which is becoming more and more relevant as our science advances. Number eight: organize medical information so it's up-to-date and easy to find. Number nine: make sure legal documents are in order. Number ten: give yourself credit for doing the best you can in one of the toughest jobs there is. I know this is meant for general caregivers, but how would you use that information when engaging with a caregiver or someone with dementia?

Nuttkinson: Yeah, I think that is great information. I know for myself and other caregivers I've worked with, when we start telling people to reach out to other caregivers and other supports at first, they're like, “Well, I have certain friends, they'll be able to help me.” I usually tell people like, “Oh, why don't you just give a support group a shot?” If the first one you go to, you don't really jive with, there's many other ones out there because somebody who has the same lived experience as you–there's nothing more powerful than connecting with someone who's caregiving like you have, than what's in front of you to do. It can seem so easy to say, “Well, I'll take care of my health,” but more often I see caregivers who are like, “Well, I canceled that doctor's appointment,” and I'll ask, “Was it for you or for your spouse?” They'll say, “Well, it was for me.” It's even more important that you go to your doctor's appointment because if you're not well, how can you care for the person? A lot of times we see caregivers keep putting their own well-being off, taking those breaks, taking care of their mental health, and then having a crisis with their own health instead of taking those smaller breaks to make sure they're taking care of themselves. I think a lot of the tips here on this list are very important and learning how to communicate effectively with your doctor. I think nowadays with things like MyChart, it makes it a lot easier to communicate with care teams. I think even knowing the right words and things to say, I know I've talked to you, Nate, to have you give me terms to help with communication. Sometimes it's nice to know you have somebody you can turn to to help with that. Then one thing I would add to this, and this is what I think makes the difference between general caregiving information and dementia-specific, is you need to become educated on the disease of dementia. If you know what is causing the dementia, be educated on that specific disease, since dementia is so different than what our intuition would have us to. With dementia, knowing the disease process and what might happen with that person is so important because an intuition might tell you to reorientate someone if they are maybe in a hallucination. Maybe that isn't the best option. It depends on each case. A lot of times what we naturally would tend to do isn't what's going to be best for the person you're caring for. Having that education and knowing how the disease progresses is really important.

Chin: I think progression is the key word there, Bonnie, because nothing is ever the same. Not only does it fluctuate day to day, week to week, hour to hour, but this is a progressive condition where things are going to change years from the present moment. I'm going to ask you about the difference in that in just a second. One of the other resources that I found that I think is really valuable comes from the NIH, the National Institute on Health, and the NIA, the National Institute on Aging. They have this website and the ADEAR website, but they also have a general website for caregiving. Within that website, and I'll have the link in the show notes for this, there's actually a separate figure and a diagram on steps to take after the dementia diagnosis because of what you just said, how important it is once you hear this diagnosis. There is power in that information. For our listeners who aren't looking at that website at this present moment, what do you think are the key things that families and caregivers should know right away, right after a diagnosis of their loved one having dementia?

Nuttkinson: A diagnosis of dementia comes with so many emotions from the person who receives the diagnosis, the family receiving the diagnosis. A lot of times the first inclination is to be like, “Here's resources for you.” We want to provide resources, but usually at that first initial visit, families aren't able to harness those resources, right? Maybe one family member is accepting the diagnosis and like, “Yes, I've worked so hard to get here and to have this formally done,” and maybe other family members are like, “I don't believe it. I really still don't believe it.” At first there's just a lot of time I think for people sitting with emotions and talking to people about their emotions. It really depends how quickly someone moves into acceptance of this, from my experience. I think a lot of times getting connected to a resource once that person is ready is so important. Nate, you know, as a doctor and the staff you work with, the social work staff, they're able to help provide some information but community resources are there for a reason for caregivers and people living with dementia to turn to and to get help from. I think learning about dementia and getting connected to those resources–we're so fortunate here in Wisconsin, having the Aging and Disability Resource Centers, the other ADRCs. In Wisconsin, they each have a dementia care specialist, and those folks put on really great programs for people living with dementia and caregivers, as well as help them look at, “Okay, we need to think about advanced care planning,” and they can help people walk through that process. I think another good thing to do after a diagnosis is see what that person is able to do well. Sometimes the doctor can help interpret that for you from the testing to say, “Oh, it looks like they're really good at this sort of information.” You can use that with that person at home. Maybe it's, oh, they do well with a written note, as long as they don't lose the note. Maybe it's a whiteboard, but knowing what that person can do and helping them be able to stay as independent as possible, I think is very important. Making sure we always treat that person with dignity and respect. Nowadays, there's the option to explore treatment options. That's a whole nother thing. Like, do I want to go that route? Does my health care system support that? What does that look like? Already start to think about developing your network and your support network. Who in my life will be able to help me walk through this? So much more. Then in general planning for the future, but really focusing on that advanced care planning. It's nice to work with someone one-on-one or talk to other caregivers and see what they did first because each situation is different and it seems so overwhelming. Like you asked me one simple question and I just told you like eight or 10 things, right, like what you should do first.

Chin: Then this changes though from the moments or let's say even say the year after a diagnosis to four years later. You alluded to this earlier. How do the needs of a caregiver change as this disease, whether it's Alzheimer's or a different cause of dementia, as that has progressed?

Nuttkinson: Yeah, so as that progression happens we see more and more caregivers are starting to do hands-on care, so providing bathing and dressing assistance, maybe starting to help someone who is having some behavioral issues, whether it's maybe sundowning, hallucinations, agitation. The caregiver is going to need to be able to be there 24/7, or you're going to see they need to have some sort of staff in place or a whole nother support system in place or thinking of moving their loved one to a care facility. It's kind of like, as you're in one phase and you're caregiving and you're thinking ahead, you always have to be thinking ahead because you want to be prepared for if your loved one needs to go to a facility. Well, let's already have some familiarity with some of the facilities or, if it's a home care company, let's already meet some of the home care companies and maybe start having someone come in, you know, just maybe once a week for a little bit so we can slowly ease that person in. It's always being in the moment, trying to work with what's happening, but then planning for whatever that next step might be. Then as someone progresses from like mid- to late-stage, knowing to call hospice. Most families don't call hospice soon enough when they could help because with dementia, it's different. The criteria fit a little differently. The first woman I cared for, she was on hospice for a year and a half because she just ended up meeting the criteria regularly but they provided so much support that we think the woman I cared for lived longer because she and her family were getting so much more quality.

Chin: Bonnie, you've mentioned a lot of different organizations. In addition to the medical team and the hospice team, what are the different support services outside of healthcare that caregivers can reach out to–if you could list those–and then when should caregivers actually connect with those different agencies?

Nuttkinson: Nate, I'm gonna do my best to try to list off as many as there are but I'm sure I'm going to miss some. The thing too is that we have a lot of great national resources for folks, but then there's also really great state and local resources. It's important to, yes, know what's out there nationally but then to dig down in your community as well. If you think of more at a national level, you'll have the Alzheimer's Association. You'll have specific dementia groups like the Lewy Body Dementia Association. I can't list off all the different names, but each of those specific dementias has their own national association that provides support for families. You're going to see the Family Caregiver Alliance, some of the information that you shared from the Caregiver Action Network and NIH and NIA. You'll also have the Alzheimer's Foundation of America. Each county they're going to have either an Aging and Disability Resource Center or a triple A, Area Agency on Aging. It's called something different in each county throughout the United States, or more at a state level. You can go to an Elder Locator and we can put that in the show notes so people can look up what that would be for their zip code. Then you have so many different home care companies that can help. Those are resources people have to pay for. Then there’s support groups. I think those are things that maybe are through some of those national or local organizations, but I know a lot of different churches or worship houses that have support groups that will come up and build them on their own and support individuals. I think it's really connecting with that local county agency and they'll tell you a list of all the things in your area. Then when you're at a support group, ask other people, who are you connected with? What does this look like? Word of mouth from other caregivers is probably going to get you some of the most valuable information.

Chin: Thank you for sharing that, Bonnie, because I appreciate this idea that there's a national level, there's the state level, and then there is your own community, your own backyard, and there are groups that are there to help. It's knowing their existence. I would also mention that many of our Alzheimer's Disease Research Centers, even if you're not in the clinical study itself, you're a part of a registry or just sign up for their newsletters. They have a list of services or networks that they can connect you to. It's just important to know that the resources are out there. I love your suggestion to talk to other people who have walked this journey and can give you that information and vouch for that information. To end our conversation today, I was hoping you could give us one or two of the most important strategies you think caregivers should consider when they are in the act and they're already in the process of providing care to someone with dementia.

Nuttkinson: Nate, that's like super tough to ask me to keep anything to one or two suggestions, but this in particular, I would say one of the first things that I would suggest to people is when something's happening around you, it's so easy to react to whatever the situation is. One of the things–many caregivers I've been working with have taken different mindfulness courses. That's a new thing that a lot of caregiver supports are helping with is trying to build mindfulness into caregiving to encourage people to pause. Something is happening, but pause. Let's not react right away, but let's stop. Take a breath and then think through what can we do. It's so easy to react because so many things are coming at you, especially as a caregiver and it really might be the person you're caring for asking you the same question for the 20th time, and being able to just step aside and pause before you react, I think, is something that is a talent we all need to learn. It's a practice we all need to work on, but then also connecting. I think one of the biggest things is connecting. Your old social group might not be your social group while you're caregiving, but getting that support, having connections with people, finding that way to care for yourself so you can be the best caregiver.

Chin: Well, you were able to keep that to one answer, Bonnie. I'm going to piggyback and end by saying, in my clinical practice, while this sounds so simple and possibly to many unneeded, I really think it's beneficial. That’s actually using worksheets that already exist. This is an overwhelming condition. It's an overwhelming process. You don't want to have to repeat the same conversation with your family and your support network, so having things organized and written down I think is very valuable, not only for the caregivers but also for your medical team that you go in and see. There are worksheets for everything. You don't need to create your own. On the NIH website, the NIA specifically, there's worksheets for coordinating caregiving responsibilities, the home safety checklist, questions to ask before hiring a care provider, questions to consider before moving into a different care facility, how to manage medications and supplements. There are worksheets for everything. People have thought about this, and the reason they exist is because they can be helpful. While it may not be for everyone, I would encourage our listeners who are going through this process, create the binder, have the information that you've already collected in that binder, and then use these worksheets so that you can organize your thoughts and feelings because you're likely tired and you're likely already overwhelmed. That, with the mindfulness that you just described, Bonnie, to me seems like at least a good initial step. I'm going to end there today, but thank you, Bonnie, for coming on and sharing your wisdom and your experience in helping caregivers be the best caregivers possible.

Nuttkinson: Thank you very much, Nate. It's been great being here with you today.

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