Navigating Complicated Caregiving Journeys with Jacquelyn Revere

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Katy, during the season, we are celebrating with so many family members.

Dr. Peters:
Yes.

Dr. Correa:
And sometimes in that situation, we're confronted with the importance of supporting the health and aging of those we love. How are your parents doing and have you had the privilege of caring and providing care support for an aging family member?

Dr. Peters:
Thank you for asking, Daniel. It's so important. My mother lives in Tennessee and she has some mobility issues due to orthopedic problems primarily, and she has to utilize a wheelchair. So, a lot of when we have family get-togethers a lot is about how could she get around and how can she participate? It was really hard in her previous house because it was essentially booby trapped with lots of stairs. And for someone in a wheelchair, you know how hard that is. So, I'm so proud of her. She actually finally built her own one-story accessible house and she just moved into it. So, it's a new holiday, it's a new house. She is in more accessible surroundings. She can actually go outside, she can go on her front porch, she can go in her kitchen, she can go in every room in her house. And I'm just so, so proud of her. How about you?

Dr. Correa:
Yeah. So, in our family, I myself have helped in terms of just supporting or filling in and getting to visit along as other family members cared for my grandmothers on my mother's side, my abuela Carmen was taken care of really by one of my uncles mostly. And then my other uncle and mother helped out where they could. Her sister, which was almost basically like another grandmother for me, my Titi Lucing. Also, as they aged, they both had variations of Alzheimer's dementia and vascular dementia, and needed a lot of care and assistance and by enough family members coming together for most of the time, they were able to stay in their home. On my dad's side, it's not unfortunately that much of a different story. My abuela Mary and my abuelo Jose have needed help. Before my abuela Mary passed, my aunt, Titi Marave and her partner Sally, did so much and gave so much of their time and heart to take care of both of them. Before my grandmother's passing with my father and her brothers helping where they could either financially are coming in. And late in her life, I got to go down and spend time with my abuela Mary and help out for a few days. But it's just so important the roles of our family in helping support and care for people and to both keep them in their home and to help them have better quality of life. I know that for our family after this, my sister and I have had a lot of conversations with both my parents about their wishes, their needs, how we can all support each other while also maintaining the love and care we have in our relationships. And this really gets to the topic of this week's episode, where we interview Jacquelyn Revere, who has shared her own experience of caring for her grandmother and her mother in a series called Mother of My Mother. And then we'll be continuing that discussion with Dr. Cohen. Jason Cohen is a neurologist and dementia care specialist at Montefiore Hospital and work alongside him in support of many patients. And we'll discuss his perspective on how he has supported individuals and family members in making this transition.

Dr. Peters:
I think it's so important to have these caregivers have a voice on our podcast. And for this podcast today really focusing on the caregiver. But remember, we have several other podcasts, including the one with Tabatha Coffey, who talks about caregiving for her partner with glioblastoma. We also had caregivers highlighted on Jennifer [inaudible 00:04:30] podcast and how resiliency is so important.

So, after you listen to this one, you may want to go back and listen to a few more. And then you can also check out the show notes for a link to our listener survey. The link is brainandlife.org/survey to participate. And if you participate, you may win one of those five $100 Amazon gift cards.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Today, I'm joined by Jacquelyn Joyce Revere. Jacquelyn is a person who stutters and lives with an expressive fluency disorder, a care influencer, and a video creator. She also has written for TV. And throughout all of this journey, she herself was caught by. While in New York pursuing her dreams, she suddenly found out her mother was showing signs of dementia and needed urgent help. And she has shared this story of caregiving and supporting her mother and her grandmother with many of us on social media to increase community awareness and promote awareness for others. Thank you so much, Jacquelyn, for joining us today.

Jacquelyn Revere:
Thank you so much for having me.

Dr. Correa:
So, I want to learn a little bit more about you. We've seen all kinds of fun and great videos on social media, but tell me some about you and your mother's relationship before all this started.

Jacquelyn Revere:
It was strained. It was strained. My mother's relationship with her mother was strained. My mother's relationship with me was strained and it was just the cycle that it was. And as soon as I turned 18, I knew I was only applying to colleges across the country, and that's exactly what I did. And I went to college across the country, and then I moved to New York and a part of it was me just running away. I never felt like my mom understood me. I felt like she wanted me to fit into whatever box that she had created for me. And if I stepped outside of that that me and who I am was just wrong. And so, I really never got to explore who I was until I had moved.

Dr. Correa:
And while you were in New York, what was it that changed or occurred that made you more aware of what was going on for her life and while she was also taking care of her own mother?

Jacquelyn Revere:
Yeah. So, in 2015, I had came to the conclusion that I wanted to have a relationship with her. And so, we had started therapy over the phone, and I had started mentioning some things that happened in my childhood and my mom was like, "That never happened." And at that point, I didn't know that she was showing signs, but at that point, my decision was like, well, if she can't be truthful about my childhood, then we just should not talk. And then the following March of 2016, my dad's mom had passed away, and so I ended up flying home to support him and go to the funeral and all of that. And I ended up seeing my mom and I knew that something was wrong. She just couldn't digest full sentences. And whenever I could tell that that she wasn't her very fast-paced self. And so, prior to leaving, I asked my dad if he would call her or check up on her or something. And my parents aren't married and they weren't married and they really never had a relationship in actuality. And so, he was like, "Yeah, sure, sure, sure." And so, I asked him had he, and he was like, "No." And I asked him if he would again, and he was like, "Yeah, sure, sure, sure." And he never checked on her. And so, that was in March. And in May I was on the subway and my mom's longtime friend called me. I was on the subway. It was maybe like 8:00 at night and I had stepped off of the subway to take the call because she's someone who wouldn't normally have been calling me. And so, I stepped off and then I asked her like, "Hey, what's up?" And she said, "Something is wrong with your mom. You need to fly home." And that's really how it all started.

Dr. Correa:
And at that point, your mom had been taking care of her mother, your grandmother for some time now?

Jacquelyn Revere:
Yes. My grandmother was diagnosed in 2014.

Dr. Correa:
With Alzheimer's?

Jacquelyn Revere:
Yes.

Dr. Correa:
And I imagine already within the family there had been a learned perspective of what it meant to be a caregiver for a family member. How was it coming home and trying to define where your role was in all this?

Jacquelyn Revere:
So, it's interesting because I probably hadn't flown home in years. I had divorced myself from my life here in LA. And so, I knew that my grandma had dementia. I knew that my mom would say how hard it is sometimes, but she wouldn't go into detail. And at that time, I was in my 20s and I was just like, "Okay, well, I'm sorry. I don't know what to tell you," which is not the way that I would handle it now, of course. But I think because the relationship was so broken, I never gave it a second thought. And I mean there's so many family secrets and unhealed relationships that are there that I think I was just trying to run from all of it.

Dr. Correa:
And now once you were there and there wasn't really much of anywhere to run to, how did you find navigating those family traumas and secrets and the past history with the two of them? Because at that point, it was both your mother and grandmother there and they had their own impaired, both memory and cognition and understanding of things.

Jacquelyn Revere:
It was absolute hell. It was absolute hell. I came home to not only to people who weren't well, but I came home to a letter saying that the mortgage hadn't been paid for two months and that they were heading into foreclosure. And so, that was something I had to fix immediately figuring out how to get a hold of all of the accounts and send the checks because I couldn't make online payments anymore. And on top of that, my mother had gotten to a point where she was getting lost driving and she was like mid-stage even. And so, she had gone all of this time slowly progressing with no one knowing or seeing it. And I came home to a grandmother who did not want me to call her grandma at all anymore. And so, that was a sudden loss right then that I didn't intend on. She was not fond of me at all. And it's like she didn't know who I was at all. And so, in one fell swoop, I had lost my grandmother and the mother that I hadn't known. And with that, they still had their own traumas and whatnot. And so, my mother couldn't comprehend that sometimes my grandmother was in an agitated state because of dementia. And so, she would take everything very personally. And if I'm completely honest, that year and a half while my grandmother was alive was taking one step forward and then 10 steps back and then two steps forward and then 15 steps back because there was no way that I could manage it.

Dr. Correa:
So, you came home to have to triage many fires and then really had your feet to the fire, figuring out how to just navigate the relationships. A big aspect of what you've shared really is characterized by a lot of joy and creativity in the time with your mother. So, it's painful that you didn't have as much of that opportunity with your grandmother because she was so late stage. But after she passed, what change that helped you find that together with your mother?

Jacquelyn Revere:
Once my grandmother passed, I had to figure out a way to make sure that the mortgage was still being paid on the house. And once I figured out how to financially take care of that, then I began making sure that I got my mom a diagnosis. And in order to do that, I actually had to change her doctor.
And so, I changed her doctors, which helped me a lot. And once I received a formal diagnosis, I was then able to find a day center that she loved. And so, they would pick her up at 8:00 AM every morning and then drop her off at 2:00. And there, she socialized and they played music and she would come home and tell me about the people that she talked to. And that also gave me time to just figure out my own stuff now. And so, I began working out again and I had an accountability partner who made sure I showed up as well, and I began really focusing on my TV writing. But caring for her through that time was also very healing, I think. It led me see her in a way that I think she might have seen me. And then 2020 hit, which is the year we started sharing on socials. And so, I think what people don't realize sometimes is that I was caring for my mom for four years before social media started even.

Dr. Correa:
So, I think that's such a key thing that you are on social media sharing and working to increase awareness and advocacy, but really that the level of importance that therapy was for yourself, not that social media for you was your therapy, that you were receiving that license and that support in your own therapy and then taking that messaging in your own processing to share with others.

Jacquelyn Revere:
Absolutely, absolutely.

Dr. Correa:
And as you've been able to connect with other, families, caregivers, care influencers, what have you learned are some of the just absolute unmet and issues for families throughout our communities?

Jacquelyn Revere:
Yeah. So, I think there's so many. We don't have enough-

Dr. Correa:
I know. I think we might need a part two.

Jacquelyn Revere:
Yeah. We don't have the social supports that we need. We don't have the finances right now. The average cost of a care home for memory care is $10,000 per month, and so few of us can actually just fork out 10k a month. I think on top of that, there are more supports now. There's a lot more educational material now, but for someone with dementia or cognitive decline, there is a need for 24/7 care and maintaining full-time job while caring for someone is nearly impossible. And so, the language and the understanding of that responsibility and the workplace just isn't there. On top of that, what I always say is that if you are a caregiver, you need to find a caregiver friend. There is an understanding there that the general population who hasn't taken on a task like this won't have for someone who has never cared for someone. And so, if you're going out, it's nearly impossible if you don't have a team of people who help you.

Dr. Correa:
So, someone who's just finding themselves or a family is not finding themselves starting on this path. You said the importance in pointed out the importance of finding a caregiver or care partner friend, but where else would you suggest that they start when they're just in that triage stage and figuring out where to not only find community, but resources?

Jacquelyn Revere:
I would say become as educated as you can on the disease that your person has. I would say figure out what social supports are available, whether it's social security or EDD or whatever your date has. The Center for Aging is where I send everyone. I would also say join a support group. There are tons of Zoom supports. USC has a fantastic caregiver social work program, and they have been very helpful. And then on top of that, figure out who your in-person supports are. So, if there's someone who can pick up a prescription from the pharmacy for you. On Sunday, my mom's friend would come pick up my mom and take her to church, and that gave me four hours. And so, figure out who your in-person supports are. Start with people that you don't have to pay, and then slowly work to the people that you will eventually have to pay. But that's what I wish someone would've told me starting out.

Dr. Correa:
Jacquelyn, thank you so much for honoring us with the time and sharing your compassion and story and your joy with all of us to learn more about a different way and a different perspective on caregiving and supportive of our families. We will continue our discussion and upcoming with our care expert to talk about some of the resources and some of the places that you or people that can go to for support and to help navigate all the many challenges of caregiving for those that we love.

Jacquelyn Revere:
Thank you so much for having me.

Dr. Peters:
Check out the show notes for a link to our listener survey. The link is brainandlife.org/survey to participate. And if you participate, you may win one of those five $100 Amazon gift cards.

Dr. Correa:
So, I really appreciate Jacquelyn opening up and sharing with us her story about her mother and grandmother. I'm glad to be welcoming back one of my colleagues here in the Bronx who works with our Montefiore and Albert Einstein College of Medicine's Center for the Aging Brain. We first heard from Dr. Jason Cohen as a part of our episode with Mary Lou Falcone, a about her husband's experience with dementia with Lewy bodies. He's a neurologist and dementia expert who helps support and care individuals and families that are going through various different neurodegenerative disorders. And we'll be continuing our discussion on Alzheimer's and caregiving with Jason. Thank you so much for joining us today, Jason.

Dr. Cohen:
Thank you for having me. I'm very glad to be back.

Dr. Correa:
So, we've had several episodes about various dementias including Alzheimer's, and in some of those we give more background and context on what is Alzheimer's, some risk factors, even participation in clinical trials. So, I really encourage our listeners to go back and check out those episodes for more background. But for those of our listeners who are coming to this episode, first, can you give us a brief explanation and understanding what's Alzheimer's dementia versus all the other dementias they may hear about and distinguish the two?

Dr. Cohen:
Sure. So, dementia is a group of symptoms. So, it's not one disease. It's a group of symptoms that says that this person is not able to do all of their day-to-day activities because of some thinking or memory problem. It's a category. It's a very helpful category, but it doesn't tell you why. It just says, "Is this person able to do their day-to-day function?" But there are differences in terms of different types of memory problems or different types of thinking problems, and that's where all of these specific types of dementia might come into play.

Dr. Correa:
And then within those, the term we hear most often right now, both in our houses and in our communities and news, Alzheimer's, where does that fit in the spectrum of dementias?

Dr. Cohen:
So, Alzheimer's is the most common. There are about 6.9, about 7 million people with Alzheimer's right now in the US that's causing dementia, but it's only one of the types. There's also a disease called Lewy body disease that affects about one and a half million people in the country. It's the second most common type. People can have dementia because of Parkinson's disease. They can have dementia because of a stroke. They can have dementia because of a whole range of other types of illnesses or injuries. Some quite common, some rare, and they all have their own separate challenges, but there's also some overlap between them.

Dr. Correa:
It seems almost even to model the experience that Jacquelyn had with both her grandmother and her mother navigating different situations with her cognition or memory disorders. And she described for us how her life and career was turned completely around when her own mother's cognitive challenges started to really come to her awareness and moving back home to help. How do you help individuals with early cognitive symptoms, their family members navigate? What help is needed at what time, and then as things move forward?

Dr. Cohen:
So, there's a lot to unpack there. So, I think a lot of it starts with recognition of two things, recognition of, one, that there is something going on, that there is a change in someone's memory or their ability to do their day-to-day activities. And trying to understand exactly what that is, why that is, how do we help the person who has the memory problem. But then separately and just as important, but it is a little bit separate, is the caregiver. How do we make sure that the caregiver is aware of what's going on? Has the opportunity to be educated about what these diseases are, to know what's coming, to understand why some of these symptoms might be happening. So, I view them as parallel, but equally important is making sure that the person has support and making sure that we are taking care of the symptoms of the person with the memory loss at the same time.

Dr. Correa:
Is there a way that you help families have a discussion really where they see each other's concerns and their common goals about the time that they have together? I know there's often a challenge of the sense of loss of control and then also the family feeling like why aren't they doing what needs to be done?

Dr. Cohen:
And that depends a little bit on the type of dementia. Some people who have memory or thinking problems are very aware of all of their problems, and they're sometimes painfully aware of all of the things that they can't do. However, there are many people who have memory problems who are not aware. "Hey, Mr. Smith, how is your memory?" "It's fine. Why do you ask?" And the family member sitting next to them is shaking their head and looking in disbelief. And so, I often approach those two a little bit differently. The person who says, "My memory is fine, why do you ask?" Well, they're not lying, but their brain can't remember because they can't remember. And so, sometimes for the caregiver, I'll approach things a little bit differently based on what the person with the memory problems is aware of and what they understand. Because sometimes the challenges and the stressors, at least early on, are going to be a little bit different depending on what the person is or is not aware of.

Dr. Correa:
One thing I've seen is that when people come either to the hospital and there's a question or concern about change, and if someone's memory and cognitive functioning or even in clinics, people tend to ask, really, if there is a dementia, what stage is it? What does that practically mean for that person, their doctors and the family?

Dr. Cohen:
Right. So, what stage someone's at? There are different ways to talk about how someone is doing. One of the most common ways is by what they can do on day-to-day basis. So, the person whose thinking has changed a little bit, but they're still able to do their day-to-days. They might be less efficient with the bills, they might have to double-check their medications, but they can get by. That stage of illness is something that's called mild cognitive impairment or MCI. And that is in contrast to this other group or stage of illness called dementia, where you cannot do all of your day-to-day activities.
So, the first big divide or artificial category is either MCI or mild cognitive impairment, where you can do your activities, even if it's a little bit more challenging versus dementia where you can't. And then within dementia it's, well, what can you do? So, typically people have problems with the most complicated activities that you do in your day-to-day life first. So, managing your checkbook and your finances, cooking a complicated meal, juggling 52 medications, these things are much more challenging. Usually those are the things that are going to be more difficult first. Later on, people start to have problems understanding what clothing is necessary or appropriate for the weather. So, the person going out without a jacket, even though it's getting cold out. The person who is putting on an extra layer, even though it's still 75 and sunny. For Alzheimer's disease, again, the most common kind of dementia in the country, usually the picking out of clothing, the understanding what clothing I need to pick out for the day is a rough marker between mild dementia and more moderate dementia. And then moderate to severe is usually the label that we'd give someone who is starting to have problems understanding how to get dressed. So, not which clothing, but how do I put on that piece of clothing? How do I turn on the shower? Wait, which is soap, which is shampoo? Those are signs that someone may be in a moderate to severe stage. And then finally a severe stage, the dividing line between moderately severe and severe is often the person who is losing the ability to speak or losing the ability to walk. Those are a little bit specific to Alzheimer. Other diseases might change a little bit over time, but it's not something that you can see on a blood test. It's not something you can see on a scan. It's really what the person is doing day to day.

Dr. Correa:
Is that always going to be the progression for people? And how quickly does that happen or do you see that vary a lot between individuals?

Dr. Cohen:
So, that's the typical progression. That's going to be the most common progression for Alzheimer, for people who have blood vessel damage in their brain, that's usually the progression with a little bit of differences. For people who have Parkinson or Lewy body, sometimes the order is a little bit different, but that's the most common. The speed is another question that a lot of people want to know. How fast, how much, when? We don't want to be elusive. We don't want to be vague, but we know that everyone is different. So, even if you have two people who look the same and we think they have the same disease, everyone's a little bit different. So, how quickly people change over time is going to be different. We can often give you averages. We can say on average, someone who has Alzheimer's disease is going to live about seven to eight years. And then we say, well, maybe there are some things in this person's favor to have much more time. Oh, they're not smoking, they have their blood pressure under control, their cholesterol is good. Maybe there are things that are not in that person's favor or that would suggest a shorter timeframe. Well, their diabetes is really out of control. Or, oh, this person has some behavior problems because of their memory or because of their dementia. And on average, the people whose dementia causes behavior problems tend to get worse a little bit more quickly. So, I can often say, these are averages. These are some things that may be in favor or not in favor of a shorter timeframe, but it's very variable.

Dr. Correa:
And you described various different stages, and unfortunately, I think most people are so used to cancer staging and otherwise, and how that's just all based on where it spreads to. You've mentioned how it's not based on an image and things like that. It's much more the function. And each of those functional stages, what are some of the most common challenges faced by family care supporters and the individuals with Alzheimer's?

Dr. Cohen:
So, there are a number of challenges, and some of them depend on someone's living circumstances and finances. Usually early on, the biggest questions and the biggest challenges are thinking about the planning on the finance side, on the work side of someone still working. So, for the person who's still working, are they safe to work? Should they be working, but maybe with some modifications? Or is the risk going up that either they're going to have a problem or someone else is going to have a problem because of what they did at work? And so, we want to make sure that we get out ahead of some of those challenges. Finances, thinking about should people retire? When should they retire? And thinking about if this person might need more care in the future, how do we look ahead and say, well, 2, 3, 4 years from now, this might be a problem. And so, we should have you at least think about these things. We should have you think about, well, who's eligible for what services through the city, through the state. And those are often some of the big challenges early on. Driving is I would say the third biggest challenge for people who are earlier on. We don't have a crystal ball to know who's going to get into an accident. Anyone can get into an accident, especially if you spend any time in the Bronx, but certain things make your risk higher. So, the worst your memory, we know that it is more likely to get into an accident. The person who's had a change in their driving behavior, either faster or slower than before, is more likely to get into an accident. Asking someone, "Hey, Mr. Smith, how's your driving?" actually does not really predict much of anything. I'm sure everyone out there listening thinks that he or she is a better driver than average, but odds are half of you are worse than average. But most people don't realize that there's been a change in driving. So, asking the person doesn't always help. You always want to make sure that you've spoken with someone else who's been in the car. And then it's not just, "Well, you can't drive." It's, "Well, what are the risks? How do we understand these risks? How do we help you minimize the risks? How do we help you find other transportation alternatives?" Well, getting a taxi might be expensive but is easier in some areas than others, but think about the cost of insurance and that fender bender that you had and when mom got lost for two hours and trying to put things in a bigger context. Some of the driving conversations do vary state by state. So, depending on the state that you're in, the laws about driving may be different. So, that's an important thing to note.

Dr. Correa:
And what tend to be some of the unspoken things that people either are surprised by or don't really often get mentioned between individuals or family members?

Dr. Cohen:
So, I never worry when I have two family members who tell me different stories. I actually always give a little bit of a look when two people tell me the exact same story. Some people worry, "Well, I saw that. Oh, he wasn't." Everyone's going to see something different. Everyone has a different perspective going in. Everyone is seeing the person with the dementia, with the memory problem in a different circumstance. Everyone has a different relationship ahead of time. And sometimes even if you have a great relationship with both people for no real good reason, sometimes behavior changes or memory looks a little bit different when you're around different people. So, I don't worry that there is some disagreement, but it's very common and people sometimes get upset that two people are giving subtly different stories. "I saw a dad do this." "No, dad can absolutely do that." Okay. You're both right. I think that's one of the most common early sources of disagreement.

Dr. Correa:
At home, as much as we want to optimize the opportunity for people to be home and stay home either on their own or with family, what are some of the important ways we should be considering about safety and a supportive environment for someone living with Alzheimer's?

Dr. Cohen:
So, safety is a very important piece. And again, it depends a little bit about who the person is, where they're living. I think about financial safety. Anyone can get scammed, financial scams are relatively common, whether it's, "Hi, this is John from Social Security." Or if the person's using a computer, emails that might be trying to steal your information. So, often thinking about having alerts on bank accounts, having family members periodically monitor bank accounts, things on that end. Cooking and cooking safety is the person leaving the stove on. Cooking fires are one of the most common causes of house fire in the country. So, using timers, not leaving the stove on when you're cooking. "Oh, I'm just going to the other room to watch a show." "No, no, if the stove is on, be in the room." So, I think about cooking safety for where that's applicable. Financial safety, driving safety, we mentioned. Firearm safety is a big one. Now, again, different in different states, but if the person who has a firearm in the house, whether it's theirs or someone else's, you want to make sure, well, is it locked? Is it kept separate from the ammunition? Because, oh, well, that person, oh, he was a cop for 50 years. Well, sure, and he might have been a wonderful responsible gun owner, trained everything else, but if that person now doesn't remember that their spouse of 25 years is their spouse and they mistake them for an intruder, if there's paranoia, if there are delusions, if there are hallucinations, all of a sudden, the "good guy" with a gun might be very problematic. So, I want to make sure that, one, if someone else has a gun in the house, well, is it locked separate from the ammo? "Oh, I hid it from grandpa." No, you didn't. You don't hide it from a three-year-old. You don't hide it from an 83-year-old. We want to make sure that everyone has good, safe storage practices. And if the gun is the person who has the memory loss, then a separate conversation about how we make sure everyone is staying safe. And some people think, "Well, that's not really applicable. I don't know. Do I have to ask that?" Across the country, it's estimated that about 60% of everyone with dementia in the US right now lives in a household with a gun. And unfortunately, we know that there are biases in the media that the story about the eight-year-old with the gun or the 18-year-old with the gun or what's making headlines, but no one talks about the 88-year-old with the gun. And the 88-year-old with the gun, who unfortunately uses it on themselves or their loved ones isn't making headlines, but those are things that we can minimize the risk of or we can hopefully prevent.

Dr. Correa:
Navigating. All of these require some challenging communication and discussions. When you're helping families plan or consider these discussions, what are some communication strategies that you suggest?

Dr. Cohen:
So, part of it is what matters most. There's an unlimited amount of things that we could talk about. What's bothering you? What are your challenges? That's a good place to start. Two, acknowledging that time is finite, that we can focus on some of these things. Some of these things we can do at another visit, but some of these things are also questions that I can have you talk to one of the many, many groups that are out there for support, and they can answer a phone 24 hours a day, and you're going to be best served by, "Oh, I totally forgot to ask you as I was walking out into the waiting room, I got home and then I thought of eight more questions." Some of those are great for me, but some of them may be more appropriate for a group like the Alzheimer Association, the Lewy Body Association, or Lewy Body Resource Center, the Association for Frontotemporal Dementia, the JASA if you're in New York, or RAIN if you're in New York, if you're in Westchester County, WJCS, your County Department for the Aging. So, there are myriad of resources at the local, at the state, at the regional, or at the national level. And that I think is another invaluable resource because where people are at any one-time, what questions they have are always going to change. And you want to make sure that patients, families, caregivers, friends have the resources, or even if they're not ready to use the resources now, making sure that people have the opportunity, they know where to go. If there is a problem in the future, if I have questions, where can I get information? Where can I find a support group? Who can I call at 2:00 in the morning? And so, a lot of the time those groups are, "Here you go. You're not alone. There are seven million people with Alzheimer. So, there are 20 million people in your shoes right now today, caring for someone with Alzheimer's, even if you're not interested now, when you need them, here's the number and the website for the Alzheimer's Association as an example." So, some of it is trying to anticipate where someone might need help tomorrow.

Dr. Correa:
And there can be a major challenge in even just navigating to getting to see a neurologist, a specialist, a dementia care center. Are those kinds of resources potentially also places that can help people find ways to get connected with a local center?

Dr. Cohen:
Absolutely. So, all of these organizations have lists of specialists, but I would say that most people in the US who have dementia unfortunately never have seen and never will see a neurologist even once. We need a lot more neurologists than we have in general. And specifically, for dementia, there are not as many of us as there are people with dementia. And all of these conversations take a great deal of time, and we really want to make sure everything is being done thoughtfully and appropriately. But that also means there's a limited number of people that can be seen a day. So, it's a whole separate systems discussion about how we improve the system, making sure that we are training the next generation, training primary care doctors, nurses, social workers, and everyone in between. People listening to this podcast who are now more aware of some of these resources even is an amazing step. So, it's an all of the above approach, but there is a lot more demand than there is supply. So, it's a perennial problem.

Dr. Correa:
And as you described because of the numbers, we all are going to have a loved one living with some type of dementia or cognitive disorder. How can each of us adapt our communication with them to better connect with them?

Dr. Cohen:
One of the first things is try to understand where someone is usually challenging someone, arguing with someone doesn't work. The person who tells you that they didn't go to the doctor yesterday, what are you talking about? They're not pulling a fast one on you. If they don't remember, sometimes if you give them hints and reminders and it comes back to them, wonderful. But an inclination that's very common is to try to challenge the person, argue. "What do you mean you don't?" And trying to help families and other caregivers understand that no, it's not intentional, that if the person was able to remember they were going to remember. So, trying to guide, direct, redirect ends up being one of the most important sets of tools or strategies that we can impart to people early on or at a moderate in order to both help the person with the memory problem and also the caregiver. And we know that how the caregiver does is going to change how the person or the patient does. Some caregivers say, "No, no, no, it's not about me. It's only about them." Well, no, because we are relying on you. That person is relying on you for their care. If you are stressed out, if you are not taking care of yourself, if you get sick, well then what happens? So, some of it is very practical. If you hurt your back trying to lift that person, then who's lifting them tomorrow? But some of it is a little bit more abstract. If you are under stress, then on average, that person will have more problems and will get worse more quickly than if you are not under stress. And making sure that caregivers know that self-care is absolutely critical for both people involved. And it's not a luxury, it's not an option. It's we must make sure that you can take care of yourself to take care of the other person. And then to add one other complicating factor, then there's always cultural and language barriers. And different cultures have different perspectives on aging, on memory loss, what can be talked about, what cannot be talked about, and we have to be mindful of that. But I try to tell people, self-care is never an option. That is a must. But then language, we have to make sure that when we're giving people help and support and finding them services, that has to be in a language that they can understand. And we thankfully have increasing resources in Spanish. We have resources depending on the disease or condition. We have more or fewer resources, but it is a process that we're getting hopefully better at groups like the Alzheimer Association or the Lewy Body Resource Center have resources in a number of different languages on their websites, and that is going to be an increasing challenge moving forward to make sure that the resources that are there are appropriate to you, to your background, to your language. Again, making sure that we are meeting people where they are and understanding what matters to them as opposed to what are all of the things that I can talk about.

Dr. Correa:
For any of our listeners who are having either early symptoms or a caregiver or family member that's looking to prepare to go see and support their family member at a doctor's visit, what are some suggestions that you would have them that they think about, talk about ahead of time or materials that they can consider to bring, to prepare for a more effective discussion with whether it's a primary care doctor or a neurologist?

Dr. Cohen:
So, preparing for a visit can be very, very helpful. I'd say the most important thing is a list of questions because in the moment, it could be hard to remember all of the things that you wanted to ask and want to make sure that's not a source of stress. Then a basic timeline. So, some medical facilities, some doctors have access to all of the medical record, which can be a blessing because everything can be at our fingertips, but it could also be a curse. If a person has thousands of pages of records, can I find the page that is most important to you? Sometimes and sometimes not really. Or sometimes you'll clue me in on what I should be looking for, and then after the visit, I'll go back and look. So, having your list of questions, having a basic idea of the timeline. Sometimes people find that writing it down helps or if there are particular medications that have been tried or not tried, what happened? Did it work? Did it not work? Were there side effects? In the moment, it's easy to remember. But two years later, I don't know. Did he do well with that medicine? I'm trying to remember. So, you're not going to write everything. Sorry. Some people write everything. Some people don't like taking notes as much, but having at least some skeleton notes about rough time points, rough timelines, what medications may have worked or not? Why was the medication stopped? It stopped because it wasn't working or it stopped because of a side effect. Those things can end up making the difference between a visit and a more effective visit.

Dr. Correa:
Jason, thank you so much for joining us today for going and helping us navigate some of these questions and all the great resources you pointed out.

Dr. Cohen:
Thank you again for the invitation. I very much appreciate the opportunity.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free at brainandlife.org. Don't forget about Brain and Life in Espanol.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life Podcast. See you next week.

Navigating Complicated Caregiving Journeys with Jacquelyn Revere

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