Transcription:
Tips For When A Loved One Has Dementia

Scott Webb: It's never easy to see our aging loved ones struggle, but it's especially heartbreaking and challenging when they're suffering from dementia. And joining me today to help family members and caregivers to spot red flags and give us some helpful tips on how to provide care and assistance to these loved ones is Joyce Ryan. She's a social worker with Emerson Health.

This is the Health Works Here podcast for Emerson Health. I'm Scott Webb. So Joyce, thanks so much for your time today. We're going to talk about dementia, but through the lens of, you know, tips for caregivers, maybe red flags, things like that. So what are some of the red flags? When should they consult with a physician?

Joyce Ryan: I think that for many of us, at some point in our life, we begin to notice with a parent or a loved one that they're having some problems with their memory. It may be that they forget important dates or events. They ask the same questions over and over again. They become more reliant on using memory aids or reaching out to families to help them remember events. So some of the things that you might begin to notice is that they might rationalize, "Oh, I didn't forget to turn the oven off. I was going to use it a little bit later," or "I didn't forget to bring the keys in from the car. I was going out in a little bit." And you start to get a little concerned about what might be going on with them. When those issues start to come up, it's a good idea maybe to have a conversation with your loved one's PCP, primary care physician, to just talk about what your concerns are and maybe bring your parent into have an evaluation by them.

Scott Webb: Joyce, when we think about loved ones, folks that we care about, of course, and we're trying to look out for them in their best interests, how do we know what's a normal part of aging versus or comparing and contrasting to when these really are signs of dementia. I'm sure that's difficult To know the to know the difference since most of us aren't healthcare professionals and we don't know. So then obviously, at some point we may want to go to the physician, which may be a little bit of a challenge. But generally, how do we distinguish between normal aging and dementia?

General. Dementia is a general term for loss of memory, loss of language, problem-solving abilities. And there are times when all of us experience that. We might forget something. We might forget a word that we're looking for or a person's name. But some of the disruptions that you notice for someone who have dementia are, you know, you might notice that they're having challenges in solving problems or completing tasks that were normally pretty familiar for them. For example, they might have trouble writing out a grocery list or playing a card game that they're very familiar with, or maybe using a device that they've used many times before. And a normal person might forget how to record a TV program, or maybe forget how to set their microwave up if there's been a power outage. But after you start to show them, it's going to jog their memory, whereas a person with dementia might really struggle with that.

Joyce Ryan: They might also struggle with confusion, where they are or the time of the place. And someone with more advanced dementia might even have trouble losing track of dates, losing track of a season, the passage of time. And they might have difficulties understanding why something hasn't happened. They may believe it's time for dinner when it's first thing in the morning, whereas typical signs of aging may be that you are confused about the day of the week, but it may be because you're so busy and in the next moment you remember exactly what day it is. You might forget a person's birthday, but you might be off by a day or two. And the minute you take a minute to think about it, it comes back to you.

People with dementia also struggle understanding visual images and spatial relationships. Vision problems is a problem that's associated with dementia, whereas in a typical person, a visual problem may be due to cataracts. But when an elder with dementia starts having problems with visual problems or spatial relationships, you may notice trouble with their driving. They are not able to read the road signs clearly, or they may be having difficulty with spatial, being able to park on navigating how close to get to a car, whereas somebody with normal age-related visual problems might be disturbed a little bit by the bright headlights on the highway. So those are the kinds of differences that you're looking at.

The same way as misplacing or losing an item in the house. Somebody with dementia may take something and put it in an unusual place. Instead of putting a pan back in the cabinet, they may take the pan in and leave it on the TV set in the living room, whereas normal signs of aging, you might forget where your keys are, but when you retrace your steps, you know exactly where you put them down. I don't know if that's helping people to try to differentiate a little bit.

Scott Webb: Yeah, I see what you mean. Yeah, there's the sort of the normal thing, like you kind of tap your pockets, "Where did I put my keys?" And then, there might be someone with dementia who can't remember what those keys are for even, right? They're not even sure what those keys are for. And you mentioned driving a car. And so obviously, there could be some vision issues, but also just as you mentioned about the confusion. As a caregiver, looking out for loved ones who may or may not have dementia, but let's assume that they probably do, I would worry so much even with GPS and things in the car. I would worry that, you know, a loved one would head out in the car and I would wonder where they were going to end up and would they find their way home, and maybe you can address that a little bit when it comes to driving a car.

Joyce Ryan: Driving is obviously a huge concern for many of us with elderly parents or relatives, and the concerns often arise when you start to notice maybe problems with their memory, but you could also notice problems in their behavior. They're not remembering where they parked the car. They're getting lost when they're driving. They may have had a physical ailment and you are concerned about their ability to turn their neck in the car or to react quickly to something that might happen on the road. You mentioned the visual issues. There's also a concern about elderly people with their medications. They may be taking things that are prescribed or over-the-counter, and you're concerned about whether or not they become drowsy while they're driving.

And fortunately, there are several programs out there that can help in dealing with that issue. It's sensitive because driving is something we associate with independence, and I think all of us do not want that independence taken away. So it's a very sensitive subject to deal with someone that you love. Again, you can go to the PCP. You can discuss that with them, but sometimes just taking a ride with your loved one in the car and observing how they are in the car is really important, because you may notice while you're out, that they're struggling. They may make errors and then you can have a conversation with them in the moment. When you get back from the drive, you can talk to them about, "I noticed this. Maybe we should consider talking to someone about that."

Emerson Health has a program called Keys, it's Keys to Independence Driving Assessment where people can call in, it's initiated by a phone call and they have an Emerson Health occupational therapist, who is a driver rehab specialist. And they can provide a comprehensive assessment of your loved one. They can evaluate, not only for deficits in vision, but sensation and coordination, and they can talk those over with the person as well as you. Cognitive or thinking skills that can affect driver safety, their ability to react correctly to things that might happen on the road.

And there's a second part to that evaluation, that is a road test. In most instances, it's followed up after they do the initial clinical assessment. It might be a week or two later. And it's an on-road assessment. It can be in an instructional vehicle. Sometimes it may cost a little more. The initial cost, just for the cognitive assessment is 350, but depending on adaptive devices that may be needed, it might be a little bit additional, but they make recommendations that the driver is either able to return to driving, that the driver may need to participate in a driver rehab program, which is driving lessons with the rehab professional or that it may be time for the person to retire from driving. That's one of the options, but the Registry of Motor Vehicle obviously offers some resources as well. They have a couple of programs. One is called Shifting Gears and they go over the rules of the road and defensive driving and safe driving tips. And they also have a second program called the Driving Decision. And it's advice for families and providers who are concerned about a person's ability to drive safely. And those are free workshops that are provided by RMV and you can just Google and you can find those under community outreach programs.

Scott Webb: Yeah. And talked about the sensitivity of all of this and none of us want to deprive our parents, which would be our children's grandparents, from spending time with them and possibly taking them places, having them over for sleepovers and things like that. But when we think about dementia and our kids, I'm sure there are some concerns and maybe you can kind of take us through them, maybe the red flags, what should we be on the lookout for?

Joyce Ryan: And you're right. It is a very, very sensitive topic for all those reasons that you described. And I think one of the key things to keep in mind when you're thinking about this and having conversations with your parent is that you want to keep your children safe and you want to keep your parents safe and you want to prevent anything unfortunate from happening. So I think if you have concerns about them caring for your children, you may want to spend some time observing them, just like you might want to take a ride with them to see how their driving is. You might just want to watch them interacting with your children. Being in a environment where they're spending time with the grandchildren, but you can observe them, is important. Driving in the car with them, if they're going to be driving your grandchildren, just to see how that is. And if you notice there are concerns, you may want to still allow them in some circumstances, if they're watching the children after school, but you may put in another caregiver. You may have a babysitter, so to speak, that comes to the house while the grandparents are there, that are just a second set of eyes and hands if there's any issues. And you may want to reach out to some of the resources in the community.

Minuteman Senior Services has a wonderful program called Family Caregiver Support Program. And Minuteman has so many wonderful people. They Meets with family members to discuss their concerns and any challenges they might be facing with their parents or loved ones and helps them in making decisions for how to best handle situations. They have conversations focused on discussing strategies and programs and resources to help them. And they also discuss something that's not discussed enough, I think, which is the isolation and loneliness that children are caregivers for our people with dementia can experience because you can feel like you're the only one going through it. And I think that this family caregiver support helps to alleviate that.

Minuteman also offers two support groups for caregivers and they talk about the issues that affect them, which is caregiver burnout. They talk about self-care, which is giving your self time off, because a lot of times, people who are taking care of someone with dementia are doing that 24/7. And just as if you get time off from a job, you need time off from that job. And sometimes that may require that you consider respite or you ask people for help. And Minuteman helps family members deal with all of that and helps them to have the conversations they need to have to get some help.

Scott Webb: Yeah, you're so right about this, you know, the isolation that a caregiver may begin to feel like, as you say, that they're the only ones going through this and they're going to need a break, they're going to need help, whether that's from other loved ones or Minuteman, babysitters, whomever. And we think about the family members, the loved ones as they go through this, so after a dementia diagnosis, what can they expect as the months and years go on and as the dementia gets worse?

Joyce Ryan: Unfortunately, dementia does progress. So reaching out to those resources is so important. One of the things that I want to mention if you notice that your family member is just in the beginning stages of dementia, you really need to take that opportunity to try to get a healthcare proxy in place while they're able to have conversations with you about who they'd like to have be their healthcare proxy, get those forms completed. You may also want to complete a power of attorney, because if the dementia progresses rapidly, you may lose the window of opportunity to complete those documents. And those are going to be so important later when the dementia progresses, one, because you need to know who the decision makers are and, two, you need access to resources and you need to have understanding of what the elder had planned for themselves, what financial resources they have available so that you can get them the care that they need. So something to think about early on. And then later on, as it progresses, I think you really need to make use of the elder service organizations to try to get the support that you need.

One of the things I wanted to mention too, that we didn't discuss yet is wandering, because as the dementia progresses, sometimes people wander. And, obviously, it's a big safety concern for the family members and some of the local police agencies have initiated a program to help with that. You'd have to check with your local city or town to see if they have that program in place. But you can bring in a current photo of the person. You can bring in emergency contact information and provide that. And most importantly, make the police aware of any medical issues that your family member might have. So if they do wander in their found, let's say they're a diabetic, that's something that they would want to know about or any other medical conditions they may have, so that if they're found in the community, the police can address that very quickly.

Scott Webb: As we wrap up here, Joyce, what would be your final thoughts and takeaways, when a loved one has dementia and we want to do right by them, what do you want know?

Joyce Ryan: I want them to know that they're not alone. I want them to know that they are taking on a wonderful task providing care for someone who has dementia, because it is not an easy job. It's very admirable that somebody would take that on. I want to remind them that self-care is really important and that there are many community resources to support them and there are many organizations out there available to provide resources for them.

Scott Webb: Yeah. And especially and including at Emerson Health. So much great advice and great tips today. Joyce, thank you so much. You stay well.

Joyce Ryan: You as well. Thank you.

Scott Webb: And visit emersonhealth.org for health information.

Host: And thanks for listening to Emerson's Health Works Here podcast. I'm Scott Webb. And make sure to catch the next episode by subscribing to the Health Works Here podcast on Apple, Google, Spotify, or wherever podcasts can be heard.