Practical tips for caregivers and friends of people with dementia

Chances are, you know someone with dementia. Whether you're the caregiver, or a friend of the family, or a friend of the patient, this episode is for you. You're going to learn about some resources that you did not even know existed

that can help you keep the home safe, keep the patient safe, or just minister to your friends.

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You're listening to Healthy Looks Great On You, a lifestyle medicine podcast. I'm your host, Dr. Vickie Petz Kasper. For two decades, I practiced as a board certified obstetrician gynecologist, navigating the intricate world of women's health. But life took an unexpected turn when my own health faltered. 

Emerging on the other side, I discovered the transformative power of lifestyle medicine. And now I'm on a mission to share its incredible benefits with you. 

So buckle up because we're going on a journey to our own mini medical school. Where you'll learn how lifestyle medicine can help prevent, treat, and sometimes even reverse disease.  

This is episode 113, 

the Heartbreak of Caring for Someone with Dementia.  And today I have a very, very special guest. My guest today is Haley Buller.

Haley lives in Illinois where she is an occupational therapist one of the areas that she specializes in is helping with patients who have dementia. 

  Welcome, Haley. I'm so glad you're here with me today. I can't wait to talk about caring for Alzheimer's patients and also caring for the caregiver. I think that's something you have quite a passion for. 

Thanks for having me today. , yes, I am an occupational therapist, and I work in outpatient neuro. I, help run the outpatient portion of our dementia program here at our hospital.

 That's great. So tell me exactly what you do if someone has dementia and they come to your clinic. You're doing an evaluation to make sure that they're safe in the home and that they can age in place, right? 

Yes. So our primary goal is to keep them at home as long as possible and to keep them as independent as possible. So we do an assessment as an OT. I'm mainly looking at their daily activities. Can they bathe, dress, take care of themselves at home, , function within their home and then making their home. a safe environment. 

We also initially will always do a caregiver assessment. It's a caregiver burnout assessment to see how the caregiver is doing in their own life with dealing with caring for the patient.   

So I think that is super important, and honestly, there is a void in that space. Caregivers are burned out. It's a lonely disease, isolating, and really just heartbreaking. So first of all, talk about what it looks like when people are burned out, and also what you can do about it, or even how you can prevent it. 

So the main thing that I hear is loneliness,  especially if the caregiver is  caring for someone who is their spouse, because that's been their partner. They've been living life together for a long time, and then all of a sudden that person is still there, but who they are is gone. So a lot of caregivers are experiencing a deep loneliness because of this void that they have.

That was once their partner.  A lot of times their friends  isolate them as well, and that's always unintentional, but we see  people not being invited to things because  it's a lot of work to get out of the house or people stop coming over because maybe they don't know what to say.  

That's a really good point and I think it's important for us to talk about what friends can do. And you know, I think traditionally what we do is we take a meal, but we don't stay and eat.

Or we send a card, but we don't have a conversation. And so there are multiple opportunities for people to minister to their friends who are dealing with this by just being there for them. Not calling and saying, Hey, if there's anything I can ever do, give me a call, but truly continuing to do life with them. 

Yes. So there are two different approaches to look at this. And one is being there with them in the home. So just going over, this is so important for the patient as well, that you can listen to their stories, even if those stories aren't making sense, just being in their world, giving them, , some friendship and some companionship that also may allow the caregiver to have some time to themselves, some time to not listen to those stories that they've heard several times. ,  but just to give a little reprieve. The other thing you can do is to take them out. So if they have someone else who can give them an hour off, ask them to go to lunch, or like you said, take lunch and then also stay.  

 So you brought up the stories and living in their world. One time I heard someone say, fall with them. Don't try to prevent them from falling, but fall with them. Because I think the tendency is to sort of correct when someone tells something that's not true, or if they're trying to tell a story that's really not plausible. 

 And you want to say, no, no, you're at home, you're not at the store, or whatever. And so, can you talk a little bit about that? 

This is an area that I am so passionate about. Whether someone has a cognitive disability or a physical disability, as we age, the one thing that's in common with all human nature is we want to preserve our dignity. We want to still be ourselves and we want to have something to give. So the thing we want to avoid doing is correcting, ,  to make someone feel belittled because  early on, especially in the diseases, , of dementia and Alzheimer's,  they're a little bit aware that something is going on. They have some awareness that they have this diagnosis, that their memory or their functions are slipping. And so they want to hang on to who they are and their dignity.

  It's interesting that you would say that because yesterday I was in Bible study and we were studying 1 Timothy and how to take care of widows and one of the things that it said is that you need to meet their needs. And I spoke up and said one of their needs is to have purpose. But how do you see that playing out in a practical way with patients who have dementia? 

It really depends on the stage. So early on,  people want to still have something to offer. So even asking advice when maybe that advice you take lightly is so important or things that they've always worked on or that they're an expert in. So take someone who  you mentioned Bible study, you know, knows the Bible well, continuing to ask them about those things.

Hey, tell me what you think this verse means, or tell me what, uh, you know, about the story of David. And just asking them a thing that they're an expert in so that they still feel like they have something to contribute  Later on that looks a little different because communication is different. So, even a stuffed animal or a baby doll later on, it might look like giving that to them and making them responsible for that or a puzzle or just something to hold so that this is what I want you to keep up with for today. Anything to do with their hands can be helpful. 

  That's beautiful. And I know that your grandmother had a sister who had Alzheimer's and she would go and visit her in the nursing home and just sing hymns to her sister. And her sister really couldn't do anything else, but when she started singing those hymns, she would join in. And I think that's just a beautiful way to connect with someone. 

It's amazing. Just as a side note in my experience,  I have seen people sing hymns  and pray long after I thought that they shouldn't be able to anymore. And it's really a beautiful thing to see and hear.  

It is. I feel like they're just reaching deep into the recesses of their mind and the things that are deep in their soul and it's really touching. But let's talk about home safety. I mean, we can't ignore the fact that sometimes people don't need to be driving or if they're at risk for falling in the home.

How do you go about evaluating home safety? 

Sometimes I will go into the home. , the first thing I always do with patients is to talk about,  or with caregivers rather, is to always talk about the unsafe things in the home. So we start at that very top level of guns, knives, what could be weaponized in the home. Even if you're not to a point where you think that the, the patient, will use those inappropriately start early, get a safe, get them out of the house. Whatever has to be done.  The 2nd thing we would look at would be things.  That are a fall hazard, so simplifying the layout of the house, what furniture can be  moved to make a walkway wider. If the person shuffles their feet, making sure we pull up throw rugs.  , as a side note, and I think someone mentioned this in a comment on the Facebook post,  sometimes throw rugs can  seem like a black hole.

So any kind of surface change can really throw someone off. So the less, , The less surface changes throughout the home, the easier it's going to be for that person to navigate, , the floors.  

The problem is people love their throw rugs. People never want to get rid of throw rugs, right? 

That's right. You, , mentioned my grandmother earlier. , I tried to simplify her home at one point in time. And the next time I went over, she had a throw rug on top of a throw rug. So you just never know, but we can do our best.    Another thing I want to mention is a lot of. dementia and Alzheimer's patients have visual perceptual issues. So some kind of visual perceptual deficit, whether that be, , a visual scanning. So just being able to look, think of your pantry shelf. Can you look back and forth across the shelf and find what you're looking for? , it can also be a depth perception, , or something like a visual memory.  Something that can help is again to declutter. So if you're looking in a drawer, only putting what is necessary and maybe that top drawer so that they can find things more easily, you can also do a high contrast background. So making sure there's a, if it's a white object, putting it on a dark background, Or vice versa, 

 Wow, who knew there was so much medicine and science to taking care of just the home environment. I think after this episode, everybody's going to want you to come to their house and help out. And I think we need a service, you know, where you could take an iPad around and show people the home and have a full home evaluation to make sure that it's safe. 

That's something to consider for sure.  

 Anything else for home safety? Do you recommend things like a life alert type device? 

Yes. So going back a little bit, we were talking about kind of the different stages and how care looks different in those different stages. While we don't want to call someone out for their mistakes, those early stages, we definitely want to keep them as oriented as possible. So orientation daily is important. And what I have recommended in the past is something like an Alexa or a Siri  that you could ask the date. So if you have an Alexa in your home, you can say,  Hey Alexa,  what is today?  And she'll tell you, or you can say, what do I have on my schedule today? And she'll tell you.  Siri and Alexa also have capabilities to call a caregiver. So if you were  to fall and need to call a caregiver, Those devices can be helpful for that later on. I would definitely recommend the life alert.  It's easier. , it can detect a fall.  It can be pushed  in an emergency and those are great devices, 

 You know, an Apple Watch has that feature as well, and if you fall and you have service on your watch, it can call 911. 

Which is also nice early on because a lot of people don't want to look old. Let's be honest, in an age of Botox and, , hair dye, no one wants to look old. And the life alert from the commercials of, help, I've fallen and can't get up, , we think of that as elderly. So the Apple Watch can be a really nice, , younger person  device.

 Yes, I think it has the connotation of not only elderly, but just the dependents. You know, if I've lost my independence and now I have to have a device in case I can't get up by myself. 

yes. The Apple Watch also has,  GPS capabilities. So if you're worried about someone getting lost  and someone not carrying their phone with them all the time,  the watch can be a nice option.

 Yeah, and the phone has tracking devices, so you can share your location. And I wanted to mention something I think is important for everyone, not just people with dementia. You can go into the health app on your phone, it looks like a little heart on an Apple phone, and enter all of your health information there.

And you can put in there, dementia as a diagnosis, and you can put all of the medications. And then if there's an accident or any kind of emergency. When emergency personnel come, they can actually open that app, if you set it, right, without having to use the unlock feature on your phone, so then they can have access to understand all of your medical history.  

You make a good point there too. We think a lot about what happens if something happens to the person with dementia. But another thing with home safety that we have to talk about is what happens if something happens to the caregiver,  if something happens, , can the patient figure out how to call, is there an emergency button like the life alert that they could push, , or is your information somewhere so that when emergency services come, they don't have to rely on the person with dementia. To give your history and your contact information. 

There's so much to think about. It's almost like you need a handbook that starts at the very beginning and walks you through every step because there are so many facets of life that are affected at different times and in different places and have different needs.

It's part of the reason I think that this disease is so very challenging for caregivers. 

What I would say when someone is early diagnosed  is  find support.  It is not  a taboo disease. So it's okay to talk with your close friends. It's okay to talk with your church family or your blood family as well to talk with them, let them know what's going on, be open about it. And that will allow for a lot better communication, a lot better teamwork moving forward. The other thing is support groups. , some people don't like support groups. And so online has become a great resource, whether that's through Facebook  or finding other online groups, , finding community support groups. Support is so important. 

 

It is important, but it really isn't that easy. I mean, you may tell your church, and you may tell your friends, and your family, and honestly, you may be disappointed. I think when I was sick with a rare disease, I needed people who understood what I was going through. And I found really great support in Facebook groups.

And so, you know, we talk about how social connection  in social media doesn't take the place of in person connection, but when you have a common experience or diagnosis that brings you together and you're truly engaged with those groups, it's actually very good for your mental health. 

And the caregiver just needs as many resources as they can get, and unfortunately, there aren't as many support groups and support programs as we need. 

Another barrier would be being able to leave and go to this support group. So  online groups can be accessed anytime. And. they're they're a great option. 

That's true, because if you're going to a support group meeting, who's going to take care of your loved one who has dementia? And if you do have someone to take care of your loved one with dementia, wouldn't you rather go to lunch?  

And let's talk about driving. 

Oh, driving. , 

this is something that I do in my practice. So, an occupational therapy referral can be a good place to start.  In my practice, I do off road driving assessments. So, I go through a battery of tests as well as using a driving simulator to figure out Are there any red flags for driving? , I do not get behind the wheel with a patient, nor do I really want to, but there are occupational therapists who are driving rehab specialists and will get in the car with someone and see, are they really safe to drive?  , so an OT can be a great starting point because we can do a screen and then what we will typically do is ask the family member or the caregiver to do supervised drives.  If we don't see any red flags,  , one thing I will look for is I always try to watch the caregiver's face while I'm doing  off road driving assessments to see, do they have concerns? Do I need to maybe look a little deeper into the cognition? , Also, you can feel free to send your provider, whether that's a therapist or your doctor,  a message or give them a phone call ahead of time.  Let the medical professional be the bad guy. I know in my practice, I am happy to tell someone they can't drive so that it preserves the relationship with their caregiver.  

That's a big deal, taking away someone's privilege to drive. But it's important not only for their safety, but for the safety of others on the road. Even strangers and other people with their family and their children that may be in the car. It's a huge deal. 

So some things to watch for would first be  if they're getting lost, that's a big one, but also  taking a look at the car regularly. Usually, as someone is starting to lose their ability to drive, there will be unexplained scratches, unexplained dents, evidence that they might be having some trouble.

 I think a lot of people don't realize the resource that you are. I would imagine that referrals to an occupational therapist for people with dementia are terribly underutilized. 

Thankfully, in our hospital system, we have a great program  because it has been funded by a family. And we have really good education to our neurologist, but I would guess that in the grand scheme of things, you're right, that it is underutilized.  

You know, I think a lot of people don't even see a neurologist. I think a lot of people just see their family practice doctor who may or may not understand the benefits of medication and the need for evaluation and support and education. And I imagine the average family practice doctor doesn't have the connections or the resources that you're providing.

And that just leaves people more on an island, trying to navigate this all by themselves. And it's, it's sad really. It's a tragedy that we don't have more support networks. And I think you're bringing up a good point that someone funded your program. And we can always give back out of the struggles we've been through.

If something has affected you or your family, sometimes that's just an opportunity to increase awareness. If you don't have money to fund a program like that, Then start your own support group or if you can be an advocate for education and connecting others with resources. 

you mentioned being an advocate, advocate for that neurology referral. There are memory clinics all over the country. I know there's one in Little Rock close to you  And one here in Illinois, that's about an hour from where I live. , but there are memory specific neurologist out there.

You just may have to ask for it, look it up and advocate for that referral.

 That's really good advice, and I think it's super important.

Wow, I think there's so much more we could talk about, about all of this. And I'm just going to encourage anyone that's listening to this to connect with others who are dealing with the same issue. On my Facebook page, there's been a lot of discussion and several people have chimed in that their loved ones have had dementia.

And sometimes it's a grandfather who's already passed away and sometimes it's a spouse that they're currently caring for. But when people are just in the throes of it, If you're one that's on the other side of it, be there for those people who are still in the middle of it. Because I think connection is super important, and I just really commend the work that you're doing, and I think there's such a need for this, 

and I appreciate you taking the time out of your day to talk to our listeners about it. 

Thank you for having me.

People have shared a couple of resources with me, so I'm going to put some helpful links in the show notes. Check it out.  

the information contained in this podcast is for educational purposes only and is not considered to be a substitute for medical advice. You should continue to follow up with your physician or healthcare provider and take medication as prescribed. Though the information in this podcast is evidence based, new research may develop and recommendations may change. 

Show notes and Resources (*may contain affiliate links)

Alzheimer's support groups

Alexa Echo show

Alexa Dot

Apple watch

Coach Broyles Playbook on Alzheimer's

The 36 hour day planning guide

Mobile Medical alert device

All episodes of Healthy Looks Great on You

 

00:00 Introduction to Dementia Care and Resources
00:28 Meet Dr. Vickie Petz Kasper: From OB-GYN to Lifestyle Medicine Advocate
01:16 Special Guest Haley Buller: A Deep Dive into Dementia Care
02:37 Understanding Caregiver Burnout and How to Support Them
04:21 Embracing the World of Dementia Patients: Compassion and Connection
08:36 Home Safety and Adaptation for Dementia Patients
11:46 Leveraging Technology for Safety and Orientation
15:27 The Importance of Support Networks and Advocacy
17:25 Driving Assessments and Safety Considerations
19:31 Expanding Access to Dementia Care and Support
21:59 Closing Thoughts and Resources