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There are many discussions in the news right now about cognitive decline, dementia and Alzheimer’s because of the age of both U.S. presidential candidates.
News Director Eric Douglas spoke with Teresa Morris, the program director for the West Virginia Chapter of the Alzheimer’s Association, about what to look for in our own families.
She explains that in the early stages of the disease process, symptoms may come and go.
“You might have three, you might have two today and two different ones tomorrow, those come and go,” Morris said. “This is just kind of a guiding principle of what you might think about.”
“This is, you tell your mom you’ll call her at 9 a.m. and say, ‘Mom, I’m on my way, we have a doctor’s appointment at 10:30 a.m.’ And you get there and she has no idea why you’re there, she has no idea that she even has a doctor’s appointment, she might not be dressed,” Morris said. “When they’re affecting a person’s independence. We all forget things. I mean, we just do. But it’s when that forgetfulness starts impacting their safety, their independence, their ability to live alone.”
“Maybe all of a sudden mom is having trouble with her checkbook,” Morris said. “All of a sudden you go in, and there’s a stack of bills on the counter where mom always paid her bills, on the exact due date.”
Morris explained that, for example, suddenly driving is more difficult for an individual.
“Not even so much the act of driving but maybe forgetting where the grocery store is when it’s two blocks away. And they’ve always driven to that one,” she said.
A person living with dementia might forget where they are.
“We hear a lot of times these folks talk about wanting to go home. Their family says, ‘We are home. This is where you raised your kids.’ Chances are they’re looking for the home they grew up,” Morris said.
They might not be able to judge distance as adequately. These folks will have a shuffled gait sometimes.
“It’s not so much due to a physical impairment, but it’s an issue with their visual conception,” Morris said. “They might look at a set of stairs and they can’t judge the six inches for them to step up. They might trip on rugs. They might even have trouble going through thresholds from the kitchen to the living room because one is tile and one is carpet.”
“They may forget names, maybe of their family, maybe close acquaintances,” Morris said. “They also may call everyday objects by the wrong name. Sometimes these folks make up words, sometimes in the middle of speaking, they stop. Because they can’t formulate the words that they’re trying to say. They’re not trying to be difficult.”
“They’re going to lose the ability to retrace their steps,” Morris said. “Someone with dementia, or maybe the beginning stages of dementia, they’re going to lose their phone, maybe take a couple steps away from it, and forget what they’re even looking for. They’re not going to have any recollection of what’s missing.”
“Maybe all of a sudden they’re giving money to an organization that maybe isn’t legit,” she said. “The neighbor boy comes over and sweeps the porch and they give him $300 or something out of the ordinary.”
“These folks withdraw from work or social events, even hobbies that they used to enjoy, you might see them quit that or stop that. A big part of that is they know something is going on, but they’re not getting the whole conversation, they’re not able to understand the whole experience, so they just withdraw from that.”
“These folks might become more easily upset,” Morris said. “They might be more aggravated. But if you think about it, if I’m having trouble communicating to you what I want to say or what I need, I’m going to be frustrated about that. I might even become aggravated. And I might even become a little aggressive.
“If I were trying to tell you, I needed food, and you had no idea what I was trying to say … I am a speech pathologist by trade. I have a T-shirt that says, ‘Behavior is communication.’ And that’s just so true. As they progress, they are going to start having some behaviors. I would say 99 percent of the time, their behaviors are because they can’t communicate their wants or their needs.”
The following is a discussion between Douglas and Morris about some of the questions family members ask.
Douglas: If somebody’s in the beginning stages, do they know? Are they aware? Or is it just that something doesn’t feel right?
Morris: You know, it’s really hard to tell. I think folks at this stage where we’re just starting to see symptoms are trying to figure it out. These folks do know something maybe isn’t right. They might even acknowledge that they forget things from time to time, or they might acknowledge that they’re having trouble with their memory or they’re problem solving. But as the disease progresses, those abilities to be self-aware decrease. They lose that ability to self-regulate. And I think that’s why there’s that level of withdrawal, because they know something’s wrong. But really, they don’t want anybody else to know something’s wrong.
Douglas: I guess this goes back to where we started. This is one of those difficult questions. When is it time to give up your car keys, time to move into a facility where people can take care of you and watch you 24 hours? What’s the threshold on that? So, you failed this test, you have to leave your keys today. If it were only that simple, but it’s not. It’s about giving up independence?
Morris: I think that’s maybe the million dollar question. It really depends on assistance that maybe a family can provide the person, how much help the person is willing to take. I think it’s different for everyone. I think everyone’s threshold is a little bit different.
I talked with people that have had their loved one with them for five years, and now they’re potentially bed bound, and that’s OK with them. And then I have folks who very early on realize that they just can’t care for their loved one. And that’s OK. It is a very personal decision. But I think we have to look at things like, are they safe in terms of living alone?
If there was a fire, would they know how to get out? If there was a grease fire would they know what to do? Are they able to still cook? Nowadays, we can cook with microwave, airfryer, there’s Meals on Wheels, there’s lots of options. But whatever situation you or your family’s in, whatever you can no longer tolerate, I think is when you have to start having those very difficult conversations.
Douglas: That was actually with my mom. She used to be a fantastic cook, and could materialize meals out of nothing. The last six months or so she was doing a lot of frozen meals, and I questioned myself on more than one occasion of “Did I wait too long?” She was on her own right up until she called the police and said she was afraid and that’s when she went to the hospital.
Morris: Sometimes that might be the easiest transition. Because if they are in a hospital, then the hospital is saying it’s not safe for her to go back home. And it takes you, as the loved one, as the caregiver, out of the equation. And sometimes it’s easier for the person to accept it that way. Because let’s face it, no one wants to be taken from their home. No one wants their keys taken away. I mean, no one thinks “In 10 years, I’m going to be living in a nursing home.” That’s just not the way it is.
So sometimes a conversation about these issues is very easy. Most of the time, it’s not. Somebody has to be the bad guy and you just have to do it. There’s no easy way, I don’t believe, to have this conversation.
Douglas: Any tips?
Morris: I think you have to think about the person’s personality. Think about when might be the best time to approach the person. Do you think it would be better if one son does it versus all of the children? Usually there’s someone that the person that’s impaired listens to a little bit more than maybe the others. So you have to think about that. You have to think about the timing of it.
I’m not so much a morning person. If you want to have a serious conversation with me at 8 a.m., I’m just going to be angry, right? But if you give me a few hours, maybe even just an hour. Think about the setting, is it better to talk to them in their home, your home, maybe a restaurant, maybe a neutral ground might be the best place to have a conversation like this?
I think, as in life, your approach is really the key. I think we always have to go into these conversations being patient, yet a little bit firm. I think we have to acknowledge maybe the pain that they’re going to experience from taking away some of these things. We always want to acknowledge the feelings. And not maybe the facts sometimes. Even just saying, “Mom, I know, this was really, really difficult. And I am so sorry. But I’m worried about your safety.” Sometimes that approach is much better than “Well, mom, we’ve decided you’re going to the nursing home.”
I think each family knows their loved one the best and while we can give you tips, you just really want to think this through before you start having the conversation. I’m a proponent of documenting maybe issues or things that have come up with the loved one. Maybe today she forgot to take her medicine. Last week, she forgot that you were coming for an appointment. Wednesday she couldn’t make a fried egg on the skillet. Maybe you take that data for a few weeks or even a month. And then you can present that to them. There’s a good chance that they’re gonna say, “Well, that didn’t happen.” You can even have them initial or sign and just say, “Mom, I’m just keeping track for the doctor. I just want you to initial it,” so then when you talk to them, you can say, “Mom, this happened and this is your initial.”
Douglas: I wanted to have this conversation, because it’s in the news. Everybody keeps talking about let’s do a “cognitive assessment” and neurological exams [of President Joe Biden and former President Donald Trump]. So that’s got it in my mind. I think of my own family and my situation. That’s why I wanted to have this conversation.
Morris: We talked about the 10 warning signs. If you notice those signs, or notice their symptoms with someone that you love, you really have to get to a medical provider. A lot of family doctors might do what we call a cognitive screen. And those are very quick assessments. Usually, there are a few questions you might have them answer. There’s the clock test out there that people have to do. Sometimes they will ask questions that tell the doctor something could be wrong. There’s some flag but, it’s a screening tool just to be able to catch those that might fall below the line.
There, you have to have a more formal assessment to know for sure. That includes a more extensive cognitive assessment, more questions, more problem solving, more following directions, coupled with some labs, MRI, PET scan, etc. There are some different ways to kind of get the same information and it really depends on the specialist that you see. And we always want to make sure that if you do go to maybe a neurologist, or a specialist, that they manage dementia, right? Because there are specialists in neurology, someone could be a specialist in migraines and really not know dementia.
Douglas: I assume West Virginia University (WVU) has a program. I know Marshall has one.
Morris: At WVU, the Rockefeller Neuroscience Institute, they have a really good program. They are doing the new treatments on the market. Marshall is not doing, as far as I know, the treatment yet, but they have a good memory clinic down there. And then there is Dr. (Barry) Vaught in Beckley who is also doing some of these new treatments.
Douglas: Is there anything we haven’t talked about?
Morris: I always want to mention that we have a 24-hour, seven day a week helpline. That number is 800-272-3900. And that line is managed by masters-level social workers. So if you have any questions about anything dementia related, you can call that number and you will always get a hold of someone and they have resources to connect you with local resources, national resources, any information that you need. That is probably the best thing that we do as a company is provide that and then also we have a website ALZ.org.
