Support for the Supporters: Resources for Alzheimer’s Caregivers

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.

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.

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.

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.

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.

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. 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?

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.

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. 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. Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, or  wherever you listen or tell your smart speaker to

play the Dementia Matters podcast. Please rate  us on your favorite podcast app – it helps other people find our show and lets us know how we  are doing. If you enjoy our show and want to support our work, consider making a gift to the  Dementia Matters Fund through the UW Initiative To End Alzheimer’s. All donations go towards  outreach and production. Donate at the link in

the description. Dementia Matters is brought to  you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin–Madison.  It receives funding from private, university, state, and national sources, including  a grant from the National Institutes on Aging for Alzheimer's Disease Research  Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and  Caoilfhinn Rauwerdink and edited by Eli

Gadbury. Our musical jingle is "Cases to  Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease  Research Center, check out our website at adrc.wisc.edu, and follow us on Facebook and  Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu.  Thanks for listening.