Spotlight on Care: Alzheimer's Caregiving

Cognitive testing with Dr. Michelle McDonnell

December 07, 2023 UCI MIND Episode 37
Spotlight on Care: Alzheimer's Caregiving
Cognitive testing with Dr. Michelle McDonnell
Show Notes Transcript

Steve and Virginia are joined by Dr. Michelle McDonnell, a neuropsychologist at UCI MIND, who discusses the importance of cognitive testing. She discusses the process involved in the testing, tips to encourage your loved one to participate, and the benefits of tracking Alzheimers as it progresses. 

Cognitive testing with Dr. michelle-mcdonnell

 

Intro  00:06

From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.  

 

Steve  00:24

Well, hello, everyone, welcome to spotlight on care. We're very excited to have Dr. Michelle McDonnell with us today. And she is a clinical neuro psychologist and she currently works at UCI mind. Michelle has a PhD in Clinical Psychology, post doctorate from Loma Linda Veterans Administration. And she has an interesting experience working with lots of veterans, which has been really a big part of her life and taught her a lot. She's an expert in cognitive evaluations and cognitive psych evaluations. So we're very excited to have her talk about that whole area today. But before we get started Virginia, do you want to share any of your experiences with cognitive or evaluations or testing?

 

Virginia  01:21

You know, I just I didn't know what to do. When my mom was showing signs of dementia, I had no idea what to do. So I just picked a doctor to go see with her and the whole experience was just horrible, basically horrible. He gave us a pill pack a seven day pill pack for aricept and an order for an MRI and he wasn't encouraging. He, he he I didn't have any confidence in him at all. I never found someone to evaluate us. It just I never did.

 

Steve  02:07

Yeah, my experience had a somewhat similar background, I share this with Dr. McDonnell already. But we went to Patty's internist. And I said, you know, she's really having some memory issues, at work and at home and he goes, Oh, that's not uncommon, yada, yada. And then he goes, we'll give her a little test. Next thing I know, he pulls out this sheet of paper with five questions on it, and pronounces her fine. And I'm like, no. So that really didn't work. And eventually, we found our way up to UCLA and went through a full battery of cognitive testing. And so I'm a big proponent of that. And I think that that's why I'm so excited, or we're both so excited to have you here. Dr. McDonald.

 

Michelle McDonnell  02:52

Thank you so much for having me. I'm excited to be here.

 

Steve  02:56

So what are some of the valuable lessons that caregivers and patients should know about why cognitive evaluations are very valuable to do? 

 

Michelle McDonnell  03:06

Well, I think it's important to consider that cognitive evaluations really allow you as a provider and a caregiver to have the brain be taken on a test drive. Right. And I've already heard a couple of things from both of you. You mentioned that your wife, they did a brief cognitive screener and found out she was fine, right, but you are noticing things at home. Right? And you are saying I didn't get good care. And I wish that I had more answers. So a cognitive evaluation is the place to get more answers. So we don't only just do tests to assess somebody's attention, learning memory, executive functioning, all of these different cognitive domains, we spend time with the family and the caregivers and the patient, and do a thorough cognitive or clinical interview. So we ask all questions about their current signs and symptoms. We asked about their experience growing up, how were they in school? What's their health history? Have they had strokes before? All of these questions and we kind of put it all together to create one full picture. So it's not uncommon for patients who go through a cognitive evaluation to spend 5,6,7 hours with us in total. And we also go through their entire medical record when available and look for these other things, these other possible things that could be impacting their cognition, maybe not the root cause, but is it making more it worse? Then we provide recommendations a diagnostic differential, right? Is it Alzheimer's disease, vascular dementia, dementia with Lewy bodies, and then recommendations specific to that person And not only are these recommendations things like, maybe consider starting Aricept or go back to neurology and consider some other treatment options, but can also be focused on these individuals current strengths, right? So if they still have valuable visual, visual spatial memory, and their learning and memory and verbal components is impaired. Let's lean on this strength. How do we build this in into their day to day life so that they can still get the best out of their day.

 

Steve  05:03

 Okay, you're giving the whole answer in one fell swoop, which is good, it was great. But let's go back to value isn't one of the values of doing this testing, kind of being able to rule out things. So maybe we'll talk a little bit about that. 

 

Michelle McDonnell  05:20

Many of the values is absolutely ruling things out. There are hundreds of things that can impact cognition. We consider not only the neurodegenerative disorders, Alzheimer's disease, and dementia with Lewy Body, Frontotemporal dementia, but we also consider things like depression and PTSD, anxiety, kidney failure, liver failure, substance use issues, sleep apnea, insomnia, and a lot of what we're trying to do is figure out is the person presenting with depression and it's appearing to mimic dementia, or is it something else. So it's not uncommon in research and in clinical work depression is called pseudo dementia. And it's not uncommon for a patient to arrive at a primary care providers office or neurologists office, and either get misdiagnosed with depression or misdiagnosed with dementia, because the symptoms overlap each other. So similarly, but when they do a neuro psych evaluation, the pattern on testing is different. And so it helps us to kind of parse this apart and think, okay, the depression is impacting them so much that they're struggling with their day to day tasks, their ADLs, I-ADLs, versus no, they are exhibiting signs of depression as a component of their neurodegenerative disorder. So it really helps us piece these things apart.

 

Virginia  06:40

It's common right? For people to get depressed when they realize their brain is not working the way it should. 

 

Michelle McDonnell  06:47

Well, it depends. So there's like naturally sadness that can happen. But what can happen is individuals disengage from the activities they used to enjoy, because they're increasingly complicated or difficult. They're declining, and they can't really engage in the way that they used to. So they present with signs of apathy or disengagement, because they're like, oh, no, I'm just not in the mood, oh, no, I don't want to do it, when they don't necessarily have the insight that they don't want to do it because they realize they cannot do it. So there can be some separation in the quality of those depressive symptoms, with apathy, and a motivation being maybe a little bit more aligned with the neurodegenerative disorder. Whereas feeling blue, feeling down feeling sad, and worthlessness might be a little bit more attributed to like a core depressive symptom. 

 

Steve  07:35

You've talked a little bit about about evaluations, and why it's important to do them earlier rather than later. Can you talk a little bit about that? And again, thinking about it from the from the caregivers perspective?

 

Michelle McDonnell  07:51

Absolutely. So it's better to do it earlier, rather than later when one of the primary concerns is what's happening here. So when it happens earlier, we're able to identify patterns on testing. And these patterns can help point us towards what is causing the cognitive inefficiencies. When people start to decline in their disease process, a lot of dementia start to look the same. Because as the disease progresses, it starts to impact various other cognitive areas. So while memory may have been first now it's affecting language and maybe executive functioning, and processing speed, and so it becomes a little bit muddier and being able to determine the contributing factors becomes more difficult. So when you think as a caregiver, where should I what resources should I use? What treatment options are there available? The later in the disease process, the harder it gets to kind of get the benefit out of the testing? Where is it earlier, there are more recommendations, more pros and cons more things that we can help guide caregivers to so that they can optimize their loved ones care.

 

Steve  08:58

You've also mentioned that you don't really recommend testing as the disease progresses. Could you talk briefly about why?

 

Michelle McDonnell  09:08

So testing is exceptionally taxing It's probably one of the most exhausting things that a patient can do. Like I mentioned, they're here for hours with us. And as the disease progresses, they present with what I call floor effects. So no matter, you know, how they perform on testing, their scores are going to look impaired, and then they start to look impaired across the board. So I've put them through a very arduous straining, exhausting event to get impaired scores across the board. Right. So rather than put them through a lot of those things, I'd rather maybe have a neurologist maybe do a cognitive screener does identify if there's been a decline, but a lot of the information about decline can be assessed with a clinical interview with the primary care provider. Well, what are some things that have changed now? Testing is just so hard on patients that is, especially if the value of it the outcome is going to be impaired across the board. I don't want to put them through that.

 

Steve  10:07

Yeah, I remember, we did testing for five years. And the last two times, Patty was exhausted, just exhausted, got home and, and fell asleep immediately from the experience. You Is there something let's talk to the caregiver again, about maybe criteria that they should look for that would suggest that testing would maybe be or an evaluation would maybe be worthwhile?

 

Michelle McDonnell  10:34

Yeah, I think the thing that people struggle with the most is they'll say, I noticed something, something's not right. My loved one is maybe forgetting more. But not everybody sees it, but I see it, I live with them, I see it. And maybe they'll go to the doctor. And, you know, they'll give them that cognitive screener. And they're like, no, they're fine. I don't know, this is just normal, this is normal. And you're like, No, this isn't normal. So part of it is having to be an advocate for your loved one and identifying that it's not normal, I always acknowledge that there are normal changes in aging, right? So you don't compare an 83 year old to a 20 year old, whether it's brain or body, they function differently. There are natural parts of change of aging. But when it exceeds what's natural is where we have to be concerned. And in the beginning, it's really muddy to figure that out what is natural, what is not. But I look for consistency. So if they're maybe forgetting things daily, and they're forgetting these conversations, and you're noticing that you're repeating this often. And it's regardless of the situation, right, regardless of how interested they are, if they are a painter, and there are maybe struggling a little bit more with painting, and it's happening daily, and they're forgetting if they started it, or they're forgetting where they're at. That's something to consider. So I always encourage taking a having a journal and just kind of tracking these things, or is it happening consistently? Is this something that's happening more frequently than not? There are instances when people will have depression, and they'll have a really good mental health day. And they'll kind of get out of this cloud out of the slump. And now they're doing all of these things without difficulty. Right? And they're not having the same problems. But it's when it's happening across the board. And when we're seeing it more frequently, and you're noticing that I would advocate for that and say, I understand that you maybe don't, as a physician, you maybe don't acknowledge that they're having these difficulties, but I've noticed it in the morning at night, I noticed it when the grandkids talk to them, I noticed that when their brother calls, they forget that their brother calls and this is happening daily. Yeah.

 

Steve  12:41

You mentioned this journal idea. When we chatted before, could you just touch on that briefly? Yeah, what you think that journal is about ? And why would I start it? I mean, it's like, you know, I don't really worry about this. And then all of a sudden, I need to, I mean, is it like in a just a handwritten notes? Or is it a book? What do you recommend about the journal,

 

Michelle McDonnell  13:00

I recommend whatever is easy and accessible to you, whether it's a notepad on your iPhone, whether it's a email, like a unsaved, or a draft of an email, in your email, piece of paper, or a notebook, whatever is accessible to you. And it's just going to be something where you kind of identify those difficulties, and you'll say, Oh, they forgot to pay the bills again. Right. And I noticed that this, this thing happened again, right? Or they really struggled to find the words today, multiple times to the point where they just stopped talking, they didn't want to be involved in the conversation anymore. Right? So kind of taking those notes down. And again, it feels really nitpicky at first, and it feels like I'm judging their every movement, right? But it's helpful to identify when it's happening, not only for you to be like am I am I seeing something that isn't there or helpful for a provider, right? Because if you can identify when it's happening, because if it's not happening consistently, like if they started a new sleep medication, and they're groggy in the morning, and that's when you notice that this is happening, but when they stop their sleep medication for three days, they're fine. Okay, maybe it's not cognitive, maybe we need to stop this medication. So it can be helpful to to kind of say, like, Oh, these other factors are affecting cognition. It

 

Virginia  14:18

would seem to me that by keeping a journal, you could take that with you to the doctor's office. Because I had doctors saying she's fine. And in the meantime, on the way there from her house to the doctor, she would look over at me and say, I've never been on this road before, right? Yes, you have

 

Michelle McDonnell  14:41

we've been here 30 times

 

Virginia  14:43

oh, it's a lot more than right are repeating things over and over again, even if it seems insignificant, to write it down and be able to say to the doctor, okay, this is what's happening, not just an interview with the doctor because I would walk out And he would say she's fine. 

 

Michelle McDonnell  15:02

And it's not uncommon for individuals who are well put together very social, really intelligent individuals to really fly under the radar for an extended period of time. Right? So you're the doctor, they're fine. And you're like, they're not fine. I don't know what to do to prove to you. So having this journal to say, well, they forgot to pay the bills. January and February, they forgot to do their medication refill, both January and February, documenting that and saying they're forgetting these very tangible things, or I'm having to remind them more often, I know that they appear okay to you, but I'm living it and I'm scared.

 

Steve  15:41

So one of the things you're talking about here is not necessarily so much the specific items, although a range of things could be important, but it's the frequency of the fact that they're happening. Exactly. Yeah, that's certainly my experience. I mean, you talked about these things called cognitive screeners. So what kind of screeners exist, I mean, five hours is a long time for anybody to go through what might be something that would be an earlier stage that somebody could encourage their doctor or ask for their doctor. Hey, I'd like you to do this test.

 

Michelle McDonnell  16:18

Yeah, the most cost, there are a couple different cognitive screeners. The most common happened to be the MMSE and the moca. So it's the mini status and the Montreal, could

 

Steve  16:26

you explain the details of the what those things are? 

 

Michelle McDonnell  16:28

So they are essentially snapshots into somebody's cognitive functioning, they take anywhere from five to 10 minutes, depending on the version. There's also a version called the slums, and it's administered at many vas, and it mirrors the MOCA. But what they do is they just take a really brief snapshot of maybe a little bit of memory orientation, right date, place, those sorts of things, a little bit of attention, maybe having you write a sentence or visually copy something, maybe draw a clock. But again, this is five to 15 minutes if we're really stretching it, right. So again, it's just a snapshot, the benefit of them is that they can be sensitive to mild dementia, and even some stages of MCI. Now, if you have somebody who's in the earlier stages of MCI, they're going to come out looking pretty normal. Even some individuals, depending on the diagnosis, look normal at mild dementia. So they have high sensitivity, really low specificity. And it's great to say, this is where they're at, they need further testing beyond that to really figure out what's going on.

 

Steve  17:34

Okay, thank you. I think that's helpful, because not always easy to get five hours in a row. But But

 

Michelle McDonnell  17:40

and to be fair, a lot of neuro psych testing, it can be up to eight hours, but typically, for a dementia evaluation, it might be an hour and a half, and then it add an hour for a clinical interview. So that's not It's not impossible, it is still very taxing. And even our you know, UCI mind or longitudinal study, these are about three and a half hour long batteries. Yeah. And they do it annually every single year, and they're tired, and I feel for them. I absolutely do. But I just appreciate, you know, their commitment to the study, too. 

 

Steve  18:15

Sometimes it's difficult to get your loved one too, to see the value of the testing or the cognitive evaluation, what tips might you give our caregivers that would be helpful in terms of ways they might encourage their loved one to participate in this? 

 

Michelle McDonnell  18:33

I think that is probably the one of the harder things to do is to convince a loved one to do the neuropsych testing. Because what people don't realize is that, particularly in the state of California, there's a lot on the line. So as a neuropsychologist, I'm not a mandated reporter. However, if at the point in testing, this individual does meet criteria for dementia, their primary care provider neurologist, those are mandated reporters. And so they may be required to identify call the DMV notify the DMV that this person does have a dementia diagnosis, and they are at risk of losing their license. And as a neuropsychologist, I let individuals know that that is a risk, every time that they engage in testing, I want them to know with full capacity, what the pros and cons are of testing, that is a con. And that's a huge one to overcome. And some people don't want to, especially living in this area. Right?

 

Steve  19:24

So what is the tip to get the person to agree to do it, you've explained what the risk might be, but what's the reason why? As a person, I'm you're looking at me and you're saying, Steve, here are the reasons why we should go and get this test. Right.

 

Michelle McDonnell  19:40

So the reason to do it, the biggest one is what's happening, right? So a diagnostic differential being able to figure out what are the many factors that may be contributing to somebody's cognitive impairment? It's not uncommon for me to say there are you know, the, the contributing factors are multifactorial. Yes, they have a neurodegenerative disorder. and also their depression is exacerbating it. They have sleep apnea, which is exacerbating it. So how do we control these two controllable factors to alleviate the pressure on the on the, on the dementia, right? So being able to find that out, being able to get an identification of your strengths and weaknesses, right, we want to lean on somebody's strengths, if their attention is still really good, let's lean on those strengths to help compensate for whatever their impairments may be. How do you structure somebody's share money?

 

Steve  20:28

I'm fine, right? You don't need any of that testing. Right? So so what you have to me, it's like, you know, something's wrong. But you're afraid to want to find out. And the advantage of coming in and getting it early is, well, maybe it's an imbalance, maybe it's sleep apnea, maybe it's some of these other things. And it's not the thing you're most afraid

 

Michelle McDonnell  20:51

of Exactly. Yep. It's absolutely thyroid B12, kidney functioning, all of these things can be impacting that. And those are things that we always want to screen even before neuropsych testing. Because if those things are clear, or like maybe b 12, is out of whack, so to speak, let's get that treated before you do neuro psych testing, I don't want to make you go through that if we can kind of have some recovery with some of those things. The other value for doing this and trying to convince somebody to do neuro psych testing is kind of learning where they're at. Because I think where a lot of people are, is that they are afraid. And I think it's acknowledging that there's some fear for this, and acknowledging that not only are they afraid their loved ones are afraid and maybe getting some answers can kind of put a name to the creature that they're afraid of. Because sometimes it's what if it is this? What if it is this? What if it is this the now you're catastrophizing about all of the 50 different potential options that it could be? And while sometimes the worst case scenario is the answer, at least there is an answer.

 

Virginia  21:59

We all want a magic pill we all do, not yet, right.

 

Steve  22:05

Well, we're not going to get into it today. But there are some new things now that are available that can help if the disease is identified sooner.

 

Michelle McDonnell  22:14

Yeah. And that it helps, particularly if the disease is Alzheimer's, right. But there are other neurodegenerative disorders, right dementia with Lewy Body, I don't really know of any available treatment for that. That's at the same level as Alzheimer's disease or Frontotemporal dementia, whatever these are, the treatments vary. So maybe it wouldn't make sense to do Alzheimer's treatment for somebody with like a LB FTD this different, but let's get some answers to help direct what care looks like specific to those disorders.

 

Steve  22:47

Okay, what things can caregivers do to help their loved ones maintain cognitive abilities and their memory? So now we've done the testing, we know what's going on? What what can what can we do as caregivers to help our loved one try and maintain their cognition?

 

Michelle McDonnell  23:05

Yeah, I think the number one staple I say is I want you to make sure that they stay cognitively, socially and physically active. That's doing things that are with friends, family, social things, that's doing things that are cognitively taxing puzzles, whether it's crossword puzzles, jigsaw puzzles, playing bridge, you know, playing a musical instrument, making sure they get their daily walk in whatever that looks like for exercise. for caregivers, I think this is where the problem is, is that as people start to decline, the degree with which they want to engage in these activities can also decline. So it can feel really like you start to feel like you're pestering your loved one being like, please do this, please do this, please, let's go for a walk. Let's do these things. You used to love to do puzzles, why aren't you doing puzzles anymore? Right? And it's because these tasks are growing increasingly difficult for them. So you, as a caregiver want to assess maybe where they used to be. And let's still do a similar task, but less challenging. So we don't want them to stop altogether. Right. So if they used to do 1000 piece jigsaw puzzles, let's try 500. 

 

Steve  24:09

just thinking of that example. It's a great analogy. are ones with bigger pieces 

 

Michelle McDonnell  24:15

Yeah, once with bigger pieces, those sorts of things, right? If they used to do bridge competitions, maybe let's do bridge with like, two three friends and make it fun. Maybe not, don't put money on the line, right. But you still want those those degrees of activity and engagement. I think the pressure of I'm not there's little insight to know, you know, because it's not uncommon for individuals with dementia to not realize that they're not good at things or not realize that they have a problem. And then they get confronted with this task and that, oh, I don't want to do it. I don't like it anymore. I'm fine. No, thank you. Right. And so when that happens, it's not coming from a place of I don't like it. I think it's interpreting that as okay, this is challenging for them. So how do we modify this so it's still enjoyable  and engaging.

 

Steve  25:01

Let's go back and touch a little bit more on this social thing. You touched on the activities and the exercise. What about social things,

 

Michelle McDonnell  25:11

I encourage social things, whether it is getting coffee with friends, whether it's going to the grandkids dance recital, and then dinner afterwards, whether it's seeing friends from college, right. And as a caregiver, it's always important to mediate the degree of that activity with their impairment. So if it's, they're relatively impaired, and they're really struggling to find the words to say and kind of track a conversation, throwing them into a banquet hall maybe isn't appropriate, right? But a one on one conversation, having family come over having this long term friend come over and just socialize a little bit. And it doesn't have to be in depth conversations of well, how are you? How's your mood? How are you feeling? Right? It can literally just be remember that one time in college when we did this, right, and bring the joy and bring these really positive things. So this person starts to feel warm and fuzzy when they're engaging with people, because then they really enjoy it.

 

Steve  26:16

So as the disease declines? We're now talking about Alzheimer's. What do you recommend that you do? You've said that maybe the significant cognitive testing just isn't going to produce any results? Is there any value in any doctor visits whatsoever? At that point?

 

Michelle McDonnell  26:38

Absolutely. I think there is value in maybe tracking the decline, because at that point, if they're relatively declined on neuro psych, and they're presenting what we call floor effects, they're gonna be impaired on your cognitive screeners, then you can track you know, off these repeat appointments, how they're scoring, and they may be dropping a couple points, right. And I think having those open conversations with a provider about while they're starting to decline a little bit, opens the door for what are next steps for care? What are next steps for assistance, maybe I need to start talking about bringing in home help in the home, or maybe I need to start talking about placement, because this is I don't have the availability to be full time caregiver. So having those conversations with providers about the current stage and where they're at in their functioning, helps kind of understand for a caregiver, maybe what degree of assistance they may be needing, because it's really challenging to be a caregiver and carrying that burden on your own. And sometimes having a doctor say, Well, this sounds really challenging. What are we? Where are you at with maybe bringing in some additional help, can help kind of open your eyes and understanding that you might be at that place.

 

Steve  27:52

So you're saying that the doctor can really help you, as a caregiver, figure out your own care efforts in your own care, health and things like that?

 

Michelle McDonnell  28:00

Absolutely. And I definitely recommend like, you know, doctors are really swamped and really taxed, and they can really encourage, like, yeah, this person is declining and they're struggling. It's not uncommon for doctors offices and things to have a social worker, or to have a care manager right within embedded within the system or Alzheimer's Association, or Alzheimer's. Orange County also has case managers and care managers talking to a social worker about these things, when the doctor says, yeah, there's a bit of a decline, it does sound like you're struggling more, they can absolutely help you kind of get pointed in the right direction of additional services that you may need. While

 

Steve  28:38

this has been great, is there any one message though, that you'd like to give to caregivers, you know, you see a lot of patients, but you also see the caregivers that are with them? What What message would you like to leave with caregivers,

 

Michelle McDonnell  28:52

I think that caregivers forget to care for themselves. And I am astonished and amazed. And I'm always floored by the amount of dedication and love that a caregiver has for their loved one. They are so dedicated to the point that they forget that they have their own needs and understandable. But it's you know, that same thought, when you're on an airplane and the oxygen masks come down, you always put your own mask on first that you can help the people around you. And with caregiving, because it's such a slow process of it starts small and then now you're doing more and more and more and more for your loved one. You didn't realize that the oxygen mask came down. And you didn't realize that you've kind of forgotten to care for yourself in a lot of ways. And I am also always devastated when something bad happens to a caregiver because they have forgotten to care for themselves. And what happens is they may leave their loved one without a caregiver. And that's devastating. It does happen and I think that that is the thing that as a provider, one of the things that breaks my heart the most, because I'm like, No. Now what like this feels so all encompassing because they've loved so hard that they forgot to love themselves. And so I think as a caregiver, it's so important. Don't forget to love yourself. It is not selfish. And I think that's the message. It's not selfish to find respite care.

 

Virginia  30:23

Excellent, perfect way to end

 

Steve  30:26

would you like to add

 

Virginia  30:27

a No, I just think this is just you're full of really, really good information. And a lot of people out there are going to appreciate it.

 

Michelle McDonnell  30:34

Thank you. 

 

Steve  30:35

I just like to say it's interesting to hear from people who have the kind of passion for what you're doing, and atta girl, way to go. You found something that you love to do and that you're doing incredibly well. Thank you.

 

Virginia  30:53

That's a great,

 

Michelle McDonnell  30:54

that's a great job. For all the people out there who are considering what do I do with my life, neuro psychology is fun.

 

Steve  31:01

I will close on that. Thank you so much.  

 

Outro

Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys, and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu