Supporting Families Navigating Dementia: Insights from Dr. Allison Lindauer

Navigating the journey of dementia can be fraught with challenges and emotional complexities. In this episode of Hope Floats, host Shoshawna Rainwater delves into expert insights shared by Dr. Allison Lindauer, a gerontological nurse practitioner and associate professor at OHSU. With her extensive knowledge and personal experience, Dr. Lindauer provides valuable strategies for families facing dementia.

Links

Dr. Lindauer’s team is now recruiting families for two studies. The first, STELLA-R, is for family caregivers for those with dementia who live in Oregon, Washington, or Idaho. Growing up in rural California, Dr. Lindauer is committed to including rural families in this telehealth-based studies.

Her second study, STELLA-FTD, is a national study for caregivers for those with frontotemporal dementias, which is funded by the National Institute on Aging.

Information about both studies can be found here: https://www.ohsu.edu/oregon-center-for-aging-and-technology/stella-family-studies

Driving Cessation Info:

“How Can I Have Good Conversations About Not Driving?” - The Hartford

https://higres.cloudinary.com/image/upload/crossroads_worksheet_conversation_planner.pdf

“Agreement with My Family About Not Driving”

https://assets.thehartford.com/image/upload/crossroads_worksheet_family_agreement.pdf

Hope Floats podcast homepage

https://www.rainwaterconsultingpdx.com/hope-floats-podcast

Transcript

Supporting Families Navigating Dementia: Insights from Dr. Allison Lindauer

Hello, Hope Floats listeners. The content of today's podcast is provided for general information and educational purposes only, and does not constitute legal, financial, medical, or other professional advice. Always consult a qualified professional about your specific situation. Now, on with the show. 

Shoshawna Rainwater (00:27)

You're listening to Hope Floats, the essential companion for the dementia caregiving journey. Whether you're navigating a new diagnosis or managing the complexities of late stage care, Hope Floats is here to provide the tools and perspective you need to stay centered and even hopeful. I'm your host Shoshawna Rainwater. 

As a licensed clinical social worker with over 20 years of experience, I've guided hundreds of families through this transition, but I've also walked this path personally as a caregiver for my own parent with dementia. I understand the clinical landscape of dementia, the emotional weight of caregiving, and everything in between. I'm so glad you're here. Let's jump in.

We have something very special today. I'm interviewing Dr. Allison Lindauer. Dr. Allison Lindauer, PhD, is a nationally certified gerontological nurse practitioner and scientist. And she's an associate professor at Oregon Health Science University, Oregon Aging and Alzheimer's Disease Research Center. Dr. Lindauer is an associate director of the center and leads the outreach program. She also provides clinical care for families living with dementia, including those living with frontotemporal dementia in the Aging and Alzheimer's Clinic. 

Dr. Lindauer's father had vascular dementia and was cared for by her sister until his death. This up close and personal experience with grief, guilt, frustration, and joy informs Dr. Lindauer's approach to care and family-based research.

So let's welcome Dr. Allison Lindauer. 

Allison Lindauer (01:39)

Thank you so much for the invitation. I sure appreciate it. 

Shoshawna Rainwater (01:42)

Yeah.  We're so glad to have you here to share your wisdom with us today.  I would love to start by asking you a little bit more about your experience with your dad, if you're willing to share. Yeah, that personal experience with grief, guilt, frustration, and joy resonates with myself and with the listeners,  I know. 

Allison Lindauer (02:06)

So like many families, we had an inkling that dad's thinking wasn't as linear as it could be. And then when my mom died, it became more apparent that things weren't right. And he had been a Type 1 Diabetic since age 16. This is the kind of diabetes that you're completely dependent on insulin. So, all of our lives have been framed by the blood sugar levels and the insulin dose and “is he hypoglycemic?”  And so he's always had a lot of women around him, caring for him. And so, when he started to develop memory troubles, it was pretty apparent from what we saw and I'm sure your listeners have been through this way. You kind of want to diagnose this, but you don't. 

Shoshawna Rainwater (02:57)

Yeah, yeah. Well, actually, we want a diagnosis, but we want it to be anything but. The memory changes. 

Allison Lindauer (03:04)

And I think like many of your listeners, you get that phone call from your family member and my sister called me and said, I'll never forget it, where I was, I was standing in my office and she said, “his St. Louis University Mental Status exam score was 16 and normal is 30. And so God bless the clinician who said “this is dementia and probably vascular due to his long-term diabetes.”  And it was also interesting because shortly thereafter she fired us because dad's care got really complicated. 

Shoshawna Rainwater (03:38)

Okay.

Allison Lindauer (03:39)

And then we found a local physician in rural California; we were very lucky to find a wonderful physician who really understood the situation. And I think what was interesting about my dad was that he was always optimistic, always positive. And it was kind of almost a problem because everything was always fine.

Shoshawna Rainwater (04:05)

Mmm.

Allison Lindauer (04:05)

And so we would go to the doctor and she'd say, “you know, how are you doing?”  And he’s like, “I couldn't be better.”  And my sister and I would kind of lean back and say “no.” And she was great. She totally understood. She didn't like counteract him. She's just like, “oh great. Let me talk to your daughters.”  

So I was living in Oregon. This was all in rural California. And my sister and I were close even before this happened, but the blessing of the dementia was that it brought us together and even more so in a challenging situation. And I think the guilt for me was probably the predominant emotion because I always felt like “I should go down there and I should be there for her.”  But my sister was really good at taking care of him. And she was also good at calling me when she got frustrated. And then I would try to get down there and give her breaks. 

But we were fortunate in that we also had a full-time caregiver that took care of him during the day. So there are many blessings involved, but again, I think the hardest part was feeling like I should be there and should be doing more.

Shoshawna Rainwater (05:13)

And your clinical work far pre-dated having a parent with this condition, is that right? So you came into the experience with a huge body of knowledge and a really probably better than average understanding of the challenges and the impact on the primary family member 

involved or primary person involved.  And so I can appreciate that you were feeling all kinds of things for your sister.

Allison Lindauer (05:41  )

Yeah. And I really tried to encourage her to take breaks. But I really appreciated what she said, “okay, you know, I can manage his care. He can come over for dinner every night.” (This was on our family farm and the houses were like right next to each other). “All that's fine, but I am not giving him a bath. I am not doing personal care.” And it was great because it was like, “now we know where her boundaries are and now we know how to plan.” 

And the other thing I think that was really beneficial with my background is I knew that at some point we would need and want hospice. And in the families that I care for now, hospice still kind of has a, it's a little bit scary for some people and people don't recognize how beneficial it can be. And so, it really isn't used as much as it could be for our families with dementia. 

Shoshawna Rainwater (06:30)

Agree.

Allison Lindauer (06:31)

And hospice was fascinating. My uncle was reading the booklet that they came and he's like, “you can die from dementia.” (laughs)  Yeah, it's like, “I'd never said that before.”

Shoshawna Rainwater (06:43)

Yeah.

Allison Lindauer (06:44)

Sometimes having an external group, not only does it make the death process much easier. But it really helps teach other families what's going on.

Shoshawna Rainwater (06:54)

Yeah, we're very big proponents on Hope Floats of maximizing the benefits of hospice and we did, I think it was the episode we did with Dr. Linda DeSitter, a friend and a former colleague and is a hospice physician. And we talked about the benefits of this for individuals with dementia. And I agree with you that it can be an under-utilized support and resource. And I've heard medical experts say it's kind of the best thing Medicare does.

Allison Lindauer (07:26)

I totally agree. And you and I both know it's so hard because many of my patients I've put on hospice and hospice is so good at treating pain. And, many times my patients will kind of get a little bit better because they're really comfortable and they're getting the care they need. And sometimes they live for, you know, one, two years even on hospice. So, it's a difficult path to navigate, but families should have that support.

Shoshawna Rainwater (07:54)

Agree.  Well, I think for today, what I'd love to jump into, Allison, is your expertise in supporting people who are navigating the dementia journey. I know your work deeply. I've seen you give multiple talks. I've seen your name pop up in The New York Times. So I would love to hear from you your perspective on a couple of different topics.  And on my mind are hearing from you, where are those most common stuck places, such as getting documentation done early, having conversations about driving cessation and stopping driving when your person has dementia, working with family as a team. So I'd love to jump in with some of these topics and maybe start by asking you, what do you think is the primary,  biggest challenge you see in families who are trying to do this work?

Allison Lindauer (09:00)

Boy, it's um… There are so many, it's hard to pin down one. I kind of think of it as phases, mild, moderate, and severe. In the mild phases, I think you've seen this too, and I apologize if a lot of what I say is what your listeners have already heard, but families are... 

Shoshawna Rainwater (09:16)

Nope. Let's hear it again. I'm sure some of it will be new and it's always good to repeat. 

Allison Lindauer (09:22)

Yeah, so one of the things that with an early diagnosis or early-stage is for everybody in the family, both the quote unquote “caregiver” and the person with the dementia diagnosis is coming to terms with grief and recognizing that grief is going to be your companion for the whole trajectory. And we know that families grieve right from the get go. And sometimes the grieving goes away and comes back, but it tends to be there a lot. 

I mean, we can spend the whole hour o n grief, but the problem with grief in the context of dementia is that many of our family members with dementia it's obvious they have memory trouble or behavioral symptoms, but every once in a while they'll be their normal selves. Like, you'll have a conversation. It's almost like miraculous. It's like, “oh my God, I had a normal conversation with her and she seemed to be really tuned in and she cared about me?” And it's like, “why does that happen? And how do I capture that?”  And it almost makes the grief worse because it reminds you, “oh, shoot, where'd you go? Can you come back?” Could I somehow keep that person? 

So the vacillations that we get with dementia can make grief really hard. And I think sometimes 

grief stuns us a little bit and so you know getting the daily stuff taken care of makes it even harder.

Shoshawna Rainwater (10:38)

Yeah. How do you explain those vacillating flickering light moments or days? Because I know they're really common. How do we make sense of that as family members or people doing this caring?

Allison Lindauer (10:51)

Boy, that's, I wish I could give you the pathological answer about exactly why the brain does that. And I can't, I certainly know that those events are most likely occur when a person is, you know, well fed, pain free, having slept–everything's kind of optimized. But then I think your listeners would probably tell me, “yeah, no.” I don't know.  If I could predict it, if I could make it happen, believe me, I would, but I don't know why it happens or how it happens. 

But the flickering lights, I think that's a wonderful analogy because that's what it feels like. It's unpredictable and I do think it makes it really challenging.

Shoshawna Rainwater (11:31)

I think so regardless of why it's happening, we know what happens, particularly in those earlier stages, right? I think it looks different as the disease progresses. There are fewer of those flickering light phenomenons or good days/bad days. But I also see, Allison, that those good days or good moments tend to be teasers for folks and they tend to think “why can't they all be that way?” And then there becomes almost a “they're just not trying hard enough” or “if they worked harder they could show up better for me”  And the pathology is I mean regardless of what it is scientifically it just is what it is and it's not possible for people to show up.

Allison Lindauer (12:19)

And I think it's really hard for caregivers. It seems like the flickering lights come on when the out-of- town family member comes to visit. 

Shoshawna Rainwater (12:28)

Yeah. Yes, I would agree.

Allison Lindauer (12:30)

And then the out-of-town, like my dad's brother would say, “he's fine. I think he's fine.” My poor sister and I just like, “no, he's not.”

Shoshawna Rainwater (12:41)

I've heard that blamed on guest behavior abilities that we have;   like we all know by the time we're sort of very young children that when we are in the presence of new people or people that you're not in the day-to-day with, that you kind of up-perform. And that can be a real phenomenon. Although I have heard, too, that if you really want to get a good sense of how your person with dementia is doing, you have to stay more than three days because most individuals can up-perform for about three days. But after that, the wheels come off. 

Allison Lindauer (13:13)

Yeah.

Shoshawna Rainwater (13:14)

But I agree, if somebody comes in from out of town and stays two days, they don't have a good understanding, typically, of the real reality. 

Allison Lindauer (13:21)

And if they visit and they like stay at a hotel and come back the next day, you know, they just aren't getting the full flavor. And I've had many families, say, you know, “I have my son come in and take care of them so I could go away for a week.” And, they come back and then your son or the son says something like, “mom, you've got to do a better job.” You know, it's like, “great. You know, they finally see the full picture and then they tell us how to do it.”  

Shoshawna Rainwater (13:48)

Right, that's never helpful, is it?

Allison Lindauer (13:49)

No, it really isn't. Being a caregiver is so hard. And there's so many things I want to say. But I think one of the things that I want to pass on is we do know from the science that taking care of somebody with dementia is risky business. Somebody you love, probably, could be. And so you experience daily stress, which causes high blood pressure, anxiety, depression.  And the science also tells us it increases your own risk for memory troubles yourself.   So it's sobering to think that caring for this person is putting you at risk yourself. And so that's why having those respite breaks are so important. 

And you and I have talked about this before, many people who care for a family member do love them, but not everybody does. And so I think being clear that you may take care of a spouse that frankly was abusive to you or a father or mother that mistreated you. And you don't love them, but out of familial obligation, you care for them. Those folks I think are particularly vulnerable. So paying for extra time, taking breaks, getting adult day programs, anything you can do to get a break is really critical. 

And I think in the early stages of the disease process, caregivers kind of have this idea like, “I got it. I can handle it.” And they don't remember or they don’t know that in the early stages is when as a caregiver, your job is to train everybody around you how to help you–which is kind of a drag because not only are caring for your family member who has a new diagnosis of dementia, but now you have to train everybody else. But you do because you have to set them up to be there for you when things get tough. So things like, “okay, every Tuesday, come by and put a casserole in our freezer;” or give them a list so they can choose the things they want to do. “Mail us a postcard once a week. Take him on a walk once a week.” If you can kind of get that routine down and get your circle of friends to do one thing once a week.

And probably what will happen the first time it happens, they bring you a casserole and you're like, “shoot, I really kind of don't need that.” You’re kind of embarrassed. But no, no, no. The idea is not that you need an extra casserole. The idea is that you're training your friends and that's what happens. Friends fall off because they don't know what to do. They don't know how to help. They run into you in the grocery store and say, “oh gosh, just call me if you need anything.” Well, if you have a list on your phone, of all the possible things that they could do to help you, all you have to do is say, “that's so nice of you. I'm just going to text you my list and you can just pick from it.” It could be anything. It could be take the dog for a walk. It could be mail us a postcard. It could be take him to get his haircut. They can pick and then it teaches you and them how to care.

Shoshawna Rainwater (16:45)

I really love that because some of the conversations that we've had on this podcast and episodes prior is how to show up well for the primary caregiver as someone stepping in. But just as important is asking of the primary caregiver to articulate specifically what would be helpful or what you're needing and to say “yes! Yes, thank you” to those offers of help if and as they do come in because I agree with you. First of all, there's 9 billion of us on the planet now, 8 billion something. There's a lot of humans out there and a lot of people who are able and willing to offer support and care.  But we have to tell them what we need and accept those sort general offers of “let me know how I can help” and say, “you know, I'm realizing caregiving for a person with dementia is not a one-person job. And I would love if you could…” and then fill in the blank and telling people what you need.

Allison Lindauer (17:44)

I love that. And you know, one of the things we hear–you probably hear this, too–is “gosh, my friends just stopped coming by or his friends.” And it's because they simply don't know how. B eing with a family member or a friend with dementia is a skill and we have to teach them. 

Shoshawna Rainwater (18:03)

Yeah.

Allison Lindauer (18:04)

And you know, I'm reluctant to bring this analogy up: it reminds me of when I was a new mom. And I don't mean to make people dementia as babies. I don't mean to go that direction. But for my own personal journey, hiring a babysitter, teaching a babysitter how to take care of my baby, walking out the door, those first couple of times feeling really anxious and just waiting to turn around and go right back. I see a lot of those parallels in the families I work with. 

And so when you hire a new caregiver, when you have a friend come up, those first couple of times, it's not gonna be easy. Get ready, because you're gonna be doing a little bit of work, and you're gonna feel anxious, and you're gonna feel worried. And so, pace yourselves. Like maybe the first time it's just 20 minutes, or maybe the first time a caregiver comes over, you do something close by, like go for a walk with your phone, so if things really do fall apart, you're ready to step in.  And probably they'll be okay and then you learn, “okay, I can do this.”

Shoshawna Rainwater (19:04)

So giving people specific instructions about how to help your individual or the person experiencing dementia have a good experience feels really key and a good use of people's bandwidth.  And, you know, part of what I love, Allison, about what you're saying about doing these things in the early stage of dementia is that that is usually where caregivers are going to have the most fuel in their tank.

Allison Lindauer (19:34)

Exactly.

Shoshawna Rainwater (19:35)

Right. And so starting these pieces earlier is easier in the work I do. When I see somebody reaching out for support for the first time in the middle part of the disease experience, they have lots of depletion and exhaustion that seems to have set in. And so this is all part of why I think you and I, and many people who are familiar with the landscape of dementia, want earlier diagnosis and want people to be better supported upstream.

Allison Lindauer (20:06)

Yes, yes. And I think this has happened with you, too, where, when I'm in the clinic, and we give our family a diagnosis, as clinicians, “we're like, “gosh, we have to go in and give bad news.” But you know, many families are grateful. And you know, one person came up to me and said, “you know, I thought it was just me as a family member being awful. I thought it was my fault that he wasn't thinking well. And now I have a diagnosis, I have…”  what did they say? “Name it to tame it? Now I know what I'm dealing with.” And that's really, you're right, early diagnosis is so important. And I think we're getting better at it, but I think one thing that you've talked about this before, but how do you get somebody to that clinic visit who doesn't think they have a problem or doesn't want to go?

Shoshawna Rainwater (20:53)

Yeah. 

Allison Lindauer (20:53)

I don't know, what do you do when that comes up?

Shoshawna Rainwater (20:56)

Well…  it really depends on how much insight and how much anosognosia is present in the person who we're trying to get through the door for more assessment. And I think many people feel comfortable with saying to their individual with brain changes, “you deserve a good work up, right?” Because it is true that other conditions can mimic dementia.  In many cases, it is not going to be something else; it is going to be dementia. But if I were an individual experiencing changes in my thinking and cognition, I would want to know if there's something we could rule out or reverse. And there are those things. Depression is one.  You tell me, too, what is on this list, but vitamin B levels, I believe. There are things that can look like dementia that we can treat. So I always kind of start from that perspective that people deserve a good work up. 

Allison Lindauer (21:57)

Deserve it. I love that. That's a really good point.

Shoshawna Rainwater (22:01)

Also, that there is so much stigma associated with any changes that we experience in the brain, that the brain gets kind of an unfair–  it's just sort of unfair for individuals with brain changes because if this was a heart issue or a lung issue or a kidney issue, you bet we would be sending them right up. 

Allison Lindauer (22:22)

You're so right!

Shoshawna Rainwater (22:23)

Yeah, and part of that is because some of the treatment tools for those other major organ diseases exist in ways that we don't have for dementia. And so I get it and also I agree with you that knowing what pathway you're on is so much better for families and people who care about the individual when you know what you're dealing with and you're supported through it.  It makes it easier for people on the journey than spinning in the overwhelm and the unknown about “what is this?”

Music transition

Shoshawna Rainwater (23:08)

I would love to get your wisdom, Allison, on what I see to be such a huge issue, especially in this earlier part of the disease experience of driving unsafely or families worrying about their person driving. We have not on Hope Floats yet done a particular episode on driving cessation. And I know it's a nuanced topic. So it probably deserves its own episode, but I was wondering if you could speak to that issue from your perspective and what you see.

Allison Lindauer (23:40)

Yeah. I think a lot about this because it is such a difficult topic. So the driving part has two levels. There's of course the safety. Nobody wants to be in a car accident, right? What really worries me is the legal aspect of it. So what I tell the families I work with–and this is often true–a person with dementia, many of the people I work with, they can drive just fine. It's a motor skill that they've learned all their lives. They're frankly probably safer drivers than a 19 year old. But the reality is there is a diagnosis on their chart. And if anything happens, if there's any kind of accident or injury, they're going to look at that chart and say, “well, you have Alzheimer's and so it's your fault.” It could have been somebody else's fault, but you are legally very vulnerable. And that worries me. So there's that legal part.  

And then there's also the part that a wife, a daughter, a son, a clinician, none of us want to be in a position where we're like, “oh, I know they should have stopped driving. I should have told them.  If I had, they wouldn't have hurt this person.”

The other thing is many of the people I work with with dementia are kind, thoughtful people. And if they hurt somebody in an accident, a) they would be emotionally devastated and b), it would really push them back cognitively. 

Shoshawna Rainwater (25:13)

Mm-hmm.

Allison Lindauer (25:14)

So there are so many reasons to give up driving and I recommend that families do it sooner than later. It is probably one of the hardest things, I think, especially for men and for men, you know, in their 60s, 70s and 80s, where driving had so much valence, so much value. 

Shoshawna Rainwater (25:31)

Yeah.

Allison Lindauer (25:32)

And by taking away the car, taking away the driving really hits them in a very vulnerable place. So if they can have any control over the process, that would be really important. So I sent you some documents that I like. A driving specialist turned me on to these from the Hartford Insurance Company.  But they have these great forms that you can use. You sit down with your family member and say “okay, we know because of the dementia you're gonna have to stop driving at some point.  So how are we gonna do this? Let's make a plan like an advanced care plan for driving.” We make an advanced care plan for what happens if your heart stops or do you want CPR?

Shoshawna Rainwater (26:10)

Yeah.

Allison Lindauer (26:11)

Well, it's kind of the same thing. Let's make an advanced care plan for driving. And then there's another form on there that kind of helps families understand when is it time for a person to really stop. And then in many states, people like me are legally responsible for reporting, So sometimes, we have to.

Shoshawna Rainwater (26:30)

Yeah.

Allison Lindauer (26:33 )

But before they get there, before you get to the point where you give up the keys, if there's a lot of tension or a lot of worry, families can certainly request an evaluation by an occupational therapist. Occupational therapists, they don't drive in the car with you, they just visit with you and check things like reaction time and concentration and focus, and then they can make a recommendation. So oftentimes the occupational therapist will say something like, “these are the areas where you're not doing so well and these are the areas where you're doing fine.” Sometimes they'll tell us, “look, you really need an on-road driving test.” And unfortunately, you have to pay for that. 

The other thing an occupational therapist may say is something like, “I am worried about your driving. You do need an on-road test. If you don't get an on-road test, I am going to have to report you to the DMV.” So following those steps is really important.

Shoshawna Rainwater (27:28)

I've heard stories of some people giving up driving after their doctor has said, “I need to make a report for you to be re-evaluated.” And sometimes that is like, “I'm don’t wanna do that.” I mean, honestly, I don't know that I could, I mean, the written test is pretty comprehensive…

Allison Lindauer (27:46)

It’s pretty hard.

Shoshawna Rainwater (27:28)

Yeah. But that can often be a catalyst for people voluntarily surrendering keys because they don't want to have to endure a big  workup or evaluation.

Allison Lindauer (28:01)

You know, that's an excellent point. And in Oregon, we do have the option as clinicians to request a medical evaluation. And I do that quite a bit, because, you know, I'm not a driving specialist. 

Shoshawna Rainwater (28:12)

Yeah.

Allison Lindauer (28:12)

So I'll send them the data I have, and they'll tell me, “yeah, this person shouldn't drive.” But on the flip side, the Oregon DMV will do a driving test with you. It's free. You take the written exam; if you pass, then they do a driving test with you. And I actually, a number of years ago, I did have a patient pass. And so the patient had a diagnosis on their chart of Alzheimer's, but had DMV clearance to drive. And so, that's really important. Again, getting back to that legal part about, the DMV said it was okay.  And you can re-test as many times as you want. If you fail the first time, just go back and do it again. And for some families, that's just the process they need to do. But it's tough.

Shoshawna Rainwater (28:58)

I agree, it's such a loaded topic. It's such a sign to be able to hop in your car and drive somewhere is sort of one of the hallmarks of American adulthood and autonomy and, like spontaneity, right? It allows people a degree of freedom in their communities that is not available so much when we have to rely on other means or modes. Those means and modes have become more vast, like we have more options to choose from. For many older adults, this is a real insult to independence. 

Allison Lindauer (29:31)

It is.

Shoshawna Rainwater (29:32)

And I understand why it must feel that way. And I sat in a talk with someone from the Oregon DMV years ago who said, most of us will outlive our driving abilities–our ability to drive safely–by five to seven years. And just like we need to be thinking about retirement from work–if that is possible for us in our lives–we need to be thinking about and planning for retirement from driving.

Allison Lindauer (29:59)

Yeah, that's so true. And I think it's particularly difficult for rural families. And the DMV can work with you in Oregon. Sometimes they give people a provisional license to be able to drive to a store or to their kid's house. So the DMV can be your friend. And so in my dad's situation, we were in rural California, we lived on a farm. And we did have to take away dad's truck, which as a farmer is just, it's like taking away his office as well as everything else. And we gave him an all-terrain vehicle, four wheeled, it's called a Kubota–you've probably seen them on golf courses. So he could drive around on the farm and his tools were in there. And every morning he would get up and  drive around and and for him that worked because it felt like his normal life. 

Shoshawna Rainwater (30:52)

Yeah.

Allison Lindauer (30:53)

And I think for those of us that live in the bigger cities, both us and our kids learn how to use a bus and learn how to use Uber and it doesn't have that same intensity as our older friends have had so it's tough. 

Shoshawna Rainwater (31:10)

Yeah, yeah, it's tough. 

Allison Lindauer (31:12)

It's a real hurdle and the sooner you can get over it, then you'll get through that the better and then you can kind of try to get on with your lives. It's hard though. I think it's even harder than an advanced care plan, because many of us have a pretty good idea like, “if this is the state of my body and I can't have a meaningful life, then don't resuscitate me.” Many of us have thought about that, but few of us think about giving up our independent driving.

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Shoshawna Rainwater  (31:50)

So I think what I'd like to move into next, Allison, is how can caregivers work alongside their own clinicians or their own primary care team to optimize their own health and well-being. You may have heard me say this in talks before, but for me, Dr. Marion Hodges, who was a long time Providence geriatrician, was the first clinical person, medical person, I heard name dementia caregiving as “a health risk.” And I really deeply appreciated her calling out that a diagnosis of dementia is a health event for the primary person involved. And that was probably 15 years ago I first heard Dr. Hodges say that.  And I know, especially through OHSU, there's more and more evidence coming out that caregiving for an individual with dementia has real health risks. 

Allison Lindauer (32:52)

Real consequences. Absolutely. Yeah.

Shoshawna Rainwater (32:54)

And it really, it hurts to say that out loud because as if caregivers aren't carrying enough, right? And now we have this additional layer of more and more evidence that it's hard on our bodies and our brains. What are your thoughts about how we can best support people who are in this role in terms of communicating with their own doctors?

Allison Lindauer (33:19)

Yeah, that's an excellent question. And you know, we are not very good as clinicians in asking, “hey, do you take care of somebody?” That's just not– you know, we get your blood pressure and we ask you, “you in pain today?” But we don't say, “are you a caregiver?” And so again, it falls upon the caregiver to say, “hey, I think you should know I care for my father, son, mother with dementia. And it's pretty stressful and exhausting.”  And then that should tip off the clinician to make sure your blood pressure is under good control. Make sure your blood sugar, you know you're not developing diabetes. Evaluate you for depression and anxiety. And then make a relationship with that person. 

So for the patients I see  with dementia, I have them come back every six months, like the dental model. It's like, “you don't have to have a crisis to see me. Just come back every six months, let's check in.” And sometimes it's really surprising to me, people will be telling me things that are really stressful. Like, “he had diarrhea for three months and was losing weight.” And it's like, “oh gosh, I wish you had called me because I could have told you that that was the Denepazil. But at least at the six month, I can catch it. 

Similarly with caregivers’ own clinicians seeing them, depending on what you and your clinician decide as a team every six months, every year.  But do check in regularly because you want a relationship with that person, they don't want to have to get on the computer and look up, “Okay. What was her name? Allison Lindauer? Okay, who is she again?”  They kind of need to know you and the minute they see your name, “oh  yeah, that's the lady that's caring for her dad and last time I saw her, her depression scores a little borderline.”  And then you call her and you're like, “gosh, I'm just really struggling.” Then your clinician could be right there and get you connected with a health professional, maybe even get you on some medication. There are lots of things they can do. But yeah, definitely make a relationship with that person. 

Shoshawna Rainwater (35:22)

And I like that piece, Allison, that you've pointed out in previous conversations and when I've seen you give talks, which is, that primary care clinician may not have all of the tools that you need as a patient, but they should have and we want them to have the ability to connect you with the right resources.  

Allison Lindauer (35:44)

But you know, I think that's why Hope Floats is so important is developing and keeping a community that understands what you're going through. I don't know if you've noticed this in your work, but a lot of people grew up in a faith community or were part of a faith community and then just stopped. If it was a loving and supportive faith community, those are the people that really want help and want to be there for you. Or a community group or a supper club or a tennis club.  You know, we just pull back because we don't think we fit in anymore. It's really those people that are going to help us and the support groups. 

And if you don't mind, Shoshawna, I think one of the things I want to point out is there are different types of dementia. We all know that. There's Alzheimer's, there's vascular, there's Lewy Body, there's Frontotemporal. Of course, the Alzheimer's Association provides great support groups. But if your family member has more of a diagnosis like Lewy Body or Parkinson's dementia, the Lewy Body Association also has support groups. And the Frontotemporal Degeneration Group has support groups. So one support group may not work for you, try another one or try a different day or a different group, because finding the right group is important.

Shoshawna Rainwater (36:59)

I agree because part of what we benefit from and gain from participation in a support group, is to be with people who are like, “yeah, me too, I get it.” And if you are caring for an individual with frontotemporal dementia, you are likely having a very different experience than someone caring for an individual with Alzheimer's. So I would say specifically for those sort of more niche, more, we say, “rare,” but they're also in the top five right of most common dementias but I agree that if you're caring for an individual with Lewy Body, being in a room with other people caring for an individual with Lewy Body really helps.  Dementia-specific organizations can be really key in helping you understand the landscape that you're in as a caregiver and feel supported.

Allison Lindauer (37:52)

Yeah, and I think, you know, one thing that is interesting for folks with the young onset dementias, many groups don't realize, “oh, one thing we need to do is figure out how to get financial support. My person had to retire before…

Shoshawna Rainwater (38:06)

Yeah, they were 58 and got this diagnosis and yeah, had to leave the workforce.

Allison Lindauer (38:12)

Right.  Our team this week is going up to the Association for Frontotemporal Degeneration's Caregiver Conference. And that's a really great group because not only do they provide terrific caregiver support, but they also offer caregivers a $500 stipend every year for respite, which is brilliant. But of course, then you have to have a frontotemporal diagnosis, which nobody wants, but they're the right people to go to if there's a problem.

Shoshawna Rainwater (38:39)

Right, right. If you are caring for someone with that diagnosis, aftd.org. Yeah. 

Allison Lindauer (38:55)

Yeah. theaftd.org.

Shoshawna Rainwater (38:47)

And then Allison, do you want to say something about the study that is going on at OHSU that is specific to frontotemporal? 

Allison Lindauer (38:55)

Oh yeah, thank you, I sure appreciate that. So I really love what you say about how your clinician can hook you up with our Alzheimer's Disease Research Center. There are 35 around the nation. So, if you're not in Oregon, there's probably others near you. And each Alzheimer's Disease Research Center has research programs. And here in Oregon, we have a lot of studies. have studies that test medications for Alzheimer's, studies that use technology to help us understand memory loss. And then we have my caregiver studies, both the STELLAR, which is an online program–eight weeks, every week we introduce you to a different specialist that can help you understand, for example, how do you work with a physical therapist, how to work with a dietician, how to work with an occupational therapist or a lawyer. And it's just once a week and we're just testing that to see if that works. And we're going to put that contact information in the show notes. 

And then we do a second study called STELLA-FDD, which is for families living with frontotemporal dementia. And it can be any FDD. It can be behavioral variant, primary progressive aphasia, corticobasal syndrome. And for those folks, that's a national study. So if your family member has that diagnosis, we'd be very happy to talk to you. And it's the same idea, but we meet in groups. So we introduce you to other people who are going down the same path. 

Shoshawna Rainwater (40:24)

Great.

Allison Lindauer (40:25)

And then Shoshawna, if we just have one more minute, I wanted to step back to that early diagnosis. We do have treatments these days. So if you are worried about your memory or your family member's memory, do try to get an assessment.  Start with a primary care provider, ask them for a cognitive assessment. If it's concerning, ask to see a neurologist because we do have tests these days that can actually identify Alzheimer's disease. If you're early in the process, it's possible that you can receive some of these newer medications that really slow down the disease. And we're seeing some actually good things. So, I just want to remind people that early diagnosis can really help.

Shoshawna Rainwater (41:06)

Yeah, I love hearing that progress that we're making. I know we are not in a space where we have cure. 

Allison Lindauer (41:15)

No, not at all.

Shoshawna Rainwater (41:16)

We're not remotely close. But it does feel, it does feel like we are chipping away and getting closer. And that's really important for us to hold on to that there has been some progress in this space.

Allison Lindauer (41:28)

There is hope! 

Shoshawna Rainwater (41:30)

Yeah, there's hope. 

Allison Lindauer (41:31)

Kind of on that same idea, my colleague, Andrew Nathanson, who runs our clinic to provide these medications, the way he thinks about it is “it's like Multiple Sclerosis 20 years ago.” We didn't have great treatments, but now we do. And we have some great disease modifying drugs. So, there is hope. And there's hope from all kinds of directions, right? There's hope from treatment. There's hope for support. There's hope for peace and quiet. It's just we have to work to get there. So it's a lot to ask of a caregiver.

Shoshawna Rainwater (42:01 )

And I agree with you. I don't think you and I could probably work in this space if we didn't feel that there was any hope or that there weren't things that did make a difference, a positive difference for people. Dementia is such an incredibly difficult diagnosis and we don't have to do this alone because there are so many of us on this same pathway in these care roles and there is.

Allison Lindauer (42:26)

And it's not safe to do it alone. 

Shoshawna Rainwater (42:30)

Yeah, I think that's a really important piece here is that we are better off doing it together. Well, Allison, thank you so much for sharing your wisdom and your insights. 

Allison Lindauer (42:46 )

Yeah, I'll send you our emails. And thank you for this work. It's so important to get the word out. And I really appreciate your time.

Shoshawna Rainwater (42:54)

Yeah, and listeners, will put that contact information in today's show notes. So thank you so much, Allison, and thank you listeners for tuning in today. We will see you next time.

Allison Lindauer (43:05)

Thanks, Shoshawna.

Shoshawna Rainwater (42:54)

Thank you for spending this time with me today. I know how much you're caring, and I'm honored to be part of your journey. If you found today's episode helpful, please subscribe or share it with another caregiver who might need to hear this information. You can find more resources and past episodes of Hope Floats at www.rainwaterconsultingpdx.com 

I'm Shoshawna Rainwater. Take what you can use from our conversation today, and leave the rest for whenever you might be ready. Please remember to honor the work that you're doing, and more importantly, honor yourself. I'll be here with you next time. The information shared on Hope Floats is for educational and supportive purposes, and is not a substitute for professional clinical advice or a therapeutic relationship.

Links

Dr. Lindauer’s team is now recruiting families for two studies. The first, STELLA-R, is for family caregivers for those with dementia who live in Oregon, Washington, or Idaho. Growing up in rural California, Dr. Lindauer is committed to including rural families in this telehealth-based studies.

Her second study, STELLA-FTD, is a national study for caregivers for those with frontotemporal dementias, which is funded by the National Institute on Aging.

Information about both studies can be found here: https://www.ohsu.edu/oregon-center-for-aging-and-technology/stella-family-studies

Driving Cessation Info:

“How Can I Have Good Conversations About Not Driving?” - The Hartford

https://hig-res.cloudinary.com/image/upload/crossroads_worksheet_conversation_planner.pdf

“Agreement with My Family About Not Driving”

https://assets.thehartford.com/image/upload/crossroads_worksheet_family_agreement.pdf

Hope Floats podcast homepage

https://www.rainwaterconsultingpdx.com/hope-floats-podcast