Brain & Life Podcast

Actors Oscar Nuñez and Ursula Whittaker on Caring for Loved Ones with Dementia

In this week’s episode, actor Oscar Nuñez joins Brain & Life Podcast co-host Dr. Daniel Correa to discuss his family’s experiences with dementia and Alzheimer’s. He shares how he helps keep his loved ones safe, and his wife, actress Ursula Whittaker, shares the resources and support she has found throughout this journey. Dr. Correa is then joined by Dr. Joel Salinas, a neurologist, clinical assistant professor at NYU Grossman School of Medicine, and chief medical officer of Isaac Health in New York. Dr. Salinas shares information about all stages of memory loss and demonstrates ways to have conversations with your loved ones at all stages of their life to make plans that keep everyone safe and happy.

Follow and subscribe wherever you get your podcasts!
Apple Podcasts   Spotify   Libsyn

24-BL-Podcast-Oscar-Nunez-Ursula-Whittaker_500x500.jpg
Photo courtesy Oscar Nuñez and Ursula Whittaker


See Episode Transcript


Additional Resources

Other Brain & Life Podcast Episodes on These Topics

Follow us!


We want to hear from you!

Have a question or want to hear a topic featured on the Brain & Life Podcast?
Record a voicemail at 612-928-6206, or email us at BLpodcast@brainandlife.org.


 


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:
Saludos, welcome back or welcome to the Brain & Life Podcast. We're so glad you're here with us. Now, Katy, how are you doing today?

Dr. Peters:
I'm doing well. We just had a nice rainstorm because everything is turned yellow here. The pollen has come down. It's pretty notorious in North Carolina, the yellow pine pollen. How about you?

Dr. Correa:
Well, I've been navigating torrential rains and New York City, including their effect on things like our internet and networks and travel back and forth to work. So we're all in the thick of the transition of the season, and I think that's often a challenge that families also find when someone in their family or a treasured family member is aging and having challenges with some of the activities of their daily life and just getting things done. Is that something you yourself have experienced in your own family?

Dr. Peters:
I have. My mother is in a wheelchair because she has some mobility issues and some issues with prior orthopedic injuries. So she has slowed down and some of that leads to her not being able to interact with others, and so that leads to some memory issues. I think everyone unfortunately will have to deal with that in some way with some family member. How about you, Daniel?

Dr. Correa:
Yeah. I mean, I think sometimes I like to remember and take to perspective that it's in some ways a positive if we have the privilege to go through a stage in life where we have to adapt, that we get to age to the point to navigate that new challenge in our life because so many people, we lose them tragically very early on. We see that with many of the kids we take care of and some of the young family members and community members we take care of. But yeah, in my family, we've been blessed by having many of my grandparents and elder family members age through different challenges that they've had, whether it's memory issues, mobility challenges, mental health challenges causing them to be disconnected from those around them. So it really becomes a question and a challenge of what do we do and how do we help support them, help them find happiness?
I've had that, recently lost my grandmother on my father's side and helping my grandfather also navigate that time of being alone and some of his own memory challenges. Years ago, we lost my grandmother on my mother's side. My mother and her brothers really going through the years of helping get her care in the home for some challenges with dementia, helping navigate the challenges of just all the finances. Does she move out of the house or stay in the house? How to have that discussion together is quite a challenge and something we're going to explore today.

Dr. Peters:
I think it's important for the family that is remaining and that are the caregivers, that there's stages of caregiving. There's the beginning when you have to start the challenges and starting the conversations. Then there's the dynamics in the middle of the caregiving journey. It's going to change over time. The first point doesn't look like the middle. And then there's also the end-of-life caregiving and how that looks and what kind of support you need. I just gave a talk on caregivers for the American Brain Tumor Association and it was about what's the dynamics of the caregiver's role throughout that journey. It is definitely an evolution.

Dr. Correa:
Wow. So we'll be exploring that. Today, we'll be featuring a discussion that I had with Oscar Nuñez, an actor and comedian. Many of you people have seen The Office, and so you probably know him from as Oscar on the show. Later in the interview we also get to talk with Oscar's partner, Ursula Whittaker. She's a writer, comedian, actor, and has been featured in various TV shows including Grey's, Anatomy, Malcolm in the Middle, and Veep, with her writing also seen in the Los Angeles Times Magazine. Her family also has had a significant impact dementia throughout their life and in their family, and she weighs in. And then we'll be speaking to Dr. Joel Salinas.
Saludos and welcome back. So today we are joined by award-winning comedian and actor that many of you may know from NBC's The Office, Oscar Nuñez. If you didn't see The Office, then I'm really not sure what you were watching in the 2000s or how you didn't catch it during the pandemic lockdown. But despite that TV show binge, you maybe have seen him also on Lucky Hank, Brooklyn Nine-Nine, The Proposal, The Lost City with Sandra Bullock or many other TV shows and movies. Today he's joining us to talk about his family's experience living with and supporting loved ones with dementia. Oscar, thank you so much for joining us on the Brain & Life Podcast.

Oscar Nuñez:
Thank you. Good to be here.

Dr. Correa:
Oscar, I wanted to just take it back to your own story. Tell us about your parents and grandparents' experiences with you talking about wanting to go into comedy and acting.

Oscar Nuñez:
Well, I think it was a gradual thing. I didn't start actually taking improv classes till I believe I was like 20 or 21. I tried out for a group called Shock of the Funny in the Lower East Village and got it. I was accepted, and that's basically when I started. Up to that point, I wasn't in the theater troupe in high school or anything like that. I was just funny and kind of knew I wanted to do that, but didn't really start until I was in my early 20s.

Dr. Correa:
Before at that point, what were you working as and just doing to help afford the New York lifestyle?

Oscar Nuñez:
After high school, I went to FIT. I wanted to be a fashion designer. I went to FIT, dropped out of there, went to dental technology school where I became a dental technologist and I did that for about a year, and that's when I really said to myself, "I really don't want to do this." What I really want to do is comedy, which I was never encouraged to do growing up. I thought, "Well, but why? You're just being a wise guy and getting in trouble." But I always reverted back to comedy. Comedy was the thing I loved the most. When I realized, "Oh no, I'm really doing this as a job," I'm like, "Oh no, I can't do this." I was really had to face the reality and myself, "What do you really want to do?" And that was comedy and acting.

Dr. Correa:
How did your family feel about you being a wise guy professionally?

Oscar Nuñez:
They were fine with it. By that point, they knew who I was. You can't stop what's going to happen. They're like, "Well." They didn't have much say in it.

Dr. Correa:
For you, I'm wondering just what is your perspective on the challenge of learning a character's backstory, memorizing the lines, let alone just delivering the nuances of emotion and comedy?

Oscar Nuñez:
If you're lucky enough to be in that position, that's a great thing to... Not too many people get to actually get paid for what they love doing, for what they do for no money if they could anyway. So I was always, since I was a little kid, making my friends laugh, making my family laugh, and that's just who I am and I just love doing that. When you find yourself in a position where you've managed to make it a career, that's just great. So it is work, but it's like hitting the lottery. So yeah, you do your work or if a character, whatever you have to do, you do and I think gladly for most people, because it's a privilege to even be able to do that. To find yourself doing what you really want to do is a good thing.

Dr. Correa:
That's amazing, and it's great that doing what you really love has put you in a position now to help raise awareness about dementia. You've become more public about impact on your family. So how has your family been touched by dementia?

Oscar Nuñez:
Yeah, I wasn't aware that I've become a spokesperson, but I guess I have because things come across your desk and you say yes to some things. If they're for a good cause and we have the time, we do it and this was one of them. My grandma was affected by it. I think she had Alzheimer's. And then my dad and both my in-laws, my father and mother-in-law are going through it now. My mother-in-law just passed away, so my father-in-law's the last one left and he has Alzheimer's. So yeah, it runs in both sides of our family and we have had to maneuver through this maze at the end of both our parents' lives.

Dr. Correa:
Thinking of your grandmother, I'm just wondering what can you tell us about who she was and her life before any of these symptoms started?

Oscar Nuñez:
Well, we came over from Cuba in '60, '61, '60, something like that. We went to Massachusetts, then we moved to New Jersey in '65. I was here with my parents and my sister, and then my parents started to get their people out, whoever they could. We got my aunt out and my four cousins, both my grandparents on my mother's side and my grandmother on my father's side. So grandma came over, I think, in '66 maybe. She was already a grandmother and she had to leave her country of birth and everything like they all did and come to a new land. They came over and I never heard them complain. They made the best of it. That in and of itself has traumatic for grownups to leave a place that they grew up in, but we all managed it. We did it.
All our other friends who were coming over on that first wave of immigrants from Cuba, they all were in the boat, no pun intended, so to speak. So they came over and that was her story. She was a good grandma. Her husband died of cancer. My grandfather, he died at home. And then a couple of years after that, she started to get symptoms of Alzheimer's, and I think she lived a couple of years with it, maybe four or five, something like that.

Dr. Correa:
What do you remember is what your family first noticed the challenges that she was having with her Alzheimer's?

Oscar Nuñez:
Well, the first symptoms were she just wasn't herself, not as sharp and making... They start by making mistakes that they normally wouldn't, and that was jarring to me. I remember I ordered a pair of shoes COD and I went to school. I came back and I had left her money and she was supposed to get $10 change from the delivery guy. I said, "Grandma, where's my change?" She's like, "Oh no, there's no change." I gave her the money and I'm like, "Oh no, this is weird." Because it seemed to me like two days before that, she would've been like, "Okay. So here's $40, so I get 10 back to the man," and now she was kind of like, "I just gave him the money." I'm like, "Oh, that's so unlike her to do that." And then shortly after that, she started using tons of salt on everything and we couldn't stop her. We're like, "This is weird," because she was a good cook. And then from there, you're like, "Oh no. Now she has Alzheimer's." Yeah.

Dr. Correa:
You mentioned your father ended up having his own challenges with dementia or in a similar diagnosis. Growing up, who was your father and tell us some more about him before just his memory issues.

Oscar Nuñez:
Well, he was a lawyer in Cuba, and then we came here and he went to Fordham and got his master's in social work. He was a social worker in Manhattan and worked at the adoption agency and worked at Harlem Hospital, a couple of other places and loved Broadway and loved the opera. Later after he got divorced from my mom, he started drinking, which I never was aware of. He kind of became an alcoholic and I'm sure that did not help. And then he slipped into dementia and Alzheimer's after that. But yeah, he went from this very witty, smart guy to an alcoholic and then later Alzheimer's and kind of dementia, I think, more.

Dr. Correa:
Yeah, it complicates the story. There's a lot of different potential causes.

Oscar Nuñez:
There's a lot of things that overlap.

Dr. Correa:
Yeah. For both your father and your grandmother, what were some of the things your family had to figure out in terms of helping take care of them and supporting them?

Oscar Nuñez:
Well, it's just the same as taking care of an elderly person, but you have to just be a little bit more aware and heads up because with my dad, there was the possibility of him getting out of the house and just going for a long walk to who knows where. It's an elderly person, but they have that and that seems to be, I think a characteristic in a lot of people with that. There's a tendency to escape or want to escape and get out of the house and go and just things like that, like leaving on the stove or whatever. We did not put my grandmother in a home. She had three children, my mom and her two siblings, and they would each take her for six months each and pass her from house to house. She had her own room at the place so that it wouldn't be overwhelming for any one of the siblings. So that's what they figured out. So they each would take her for six months or a year or something like that.

Dr. Correa:
And then your father in the care that he received, did he live with someone or...

Oscar Nuñez:
He was with my sister, but he escaped twice and the cops brought him back because he was miles away, and they're like, "We don't know where he is." But shortly after that, we put him in a home, in a facility. That's where my father-in-law is now in California in a mental care facility, which is very nice along with a bunch of other people, and that's where they live.

Dr. Correa:
I mean, there's just such a struggle because we're all very independent people, but then you start to lose some of those abilities to make those decisions and memory and planning. And then yeah, you have family members who in those situations sometimes will wander or just want to go out to the store.

Oscar Nuñez:
It's a symptom. It's the brain. The brain is the brain. It's not like the liver or the stomach. It's not black and white. It has this magical element to it. It holds thoughts and memories. It's unlike any other organ. You know more than I do, we're still figuring it out.

Dr. Correa:
Many people who experience and live with dementia growing older end up actually also developing a lot of mood issues and depression, anxiety or a lot of problems with disorientation. Where those challenges for your father or for your mother or your grandmother?

Oscar Nuñez:
Yes, they are. They're challenges. It's logistics, it's just stuff that you have to handle and you know it's coming. There are lots of support groups to help with that sort of thing. Yeah, it just makes it extra frustrating when you have a hard time trying to get them to not drive, trying to get their license away, trying to take their weapons away, their guns. That's a problem.

Dr. Correa:
Yeah, just there's different stages of where people progress and at some point they stop being able to make a lot of those decisions and especially safety decisions on their own.

Oscar Nuñez:
Yes. Yes, they do.

Dr. Correa:
This episode will complement it also with a discussion with one of my colleagues who's a dementia expert and really discuss how he discusses those challenges with the families he supports. How have you and Ursula discussed the differences between your family and her in-laws or your in-laws, her parents?

Oscar Nuñez:
Well, I've been through it already. My parents have both passed away. Merchandise is available. Her, she's going through it now. Her mom, her stepmom just passed away and her dad is still with us. He is lucky enough, they had a little bit of wealth accumulated so he is in a nice facility. We go visit him. It's as good as it can get for him. He's having a great time. Her mother and father had a business and they saved money to take care of them when they got in these stages of life. They're lucky. A lot of people aren't.

Dr. Correa:
Yeah. Together as a couple, how has this changed your family discussions about just time and planning and responsibilities for caring for these family members?

Oscar Nuñez:
All that you have to put it into the schedule. It's part of what we do. It's just another thing to add to what you're doing. It adds stress, but how you handle that stress and what you make of it is up to you. I am one that thinks that worrying is just a waste of time. You can worry for something a little bit, but don't make it your main way you're spending your time is worrying because it does absolutely nothing. Make a list, figure out the problem and do things that have a positive outcome, but it definitely is something that becomes a part of your life, managing their... They can't manage it. Luckily, we have stuff to manage. We do have funds that we can manage to make sure that he ends his life in the best way possible.

Dr. Correa:
Yeah. I mean, juggling all the different tasks and time and costs and responsibilities, there's so much to stress about, but I mean, sometimes people find there's an ability to be present with your family member if you can do activities that affirm or honor who they are and their interests. Are there things that you did with your family or with your in-laws that just really connect with them beyond just the day-to-day care needs?

Oscar Nuñez:
We go for walks, he and I. He likes architecture and cars, so that's what we talk about. He loves talking about architecture and cars and he can walk. Dogs too, but mostly architecture and cars he likes a lot. So if there's an open house or something, we'll go in and look around the house and talk about the house and all that stuff. Those are his things that he likes.

Dr. Correa:
So going into this with your father-in-law, you, of course, had the experience with your father and your grandmother. What kinds of discussions did you guys begin to have with him about his wishes and what he wanted?

Oscar Nuñez:
He's on eight acres and it was getting to the point where we had to get him off his property because he was either going to burn the place down or shoot somebody. He had his guns out on the table, but we had taken out the firing pins. We took the guns to a gun store and the guy was sympathetic to us because his father, the gun owner, was heading there and he's like, "I know what you're going through." Because we can't take the guns away from him, he has to have his guns. So we took the firing pins out and left them there so he thinks they're still there because I'm like, "What do you need those for? They were never out before. They were always hidden, but then they were out on the table ready to go." I'm like, "What do you need that for?"
He's like, "They're coming." I'm like, "Who's coming?" He said, "They're going to come. They're going to in house invade. They're going to invade my house." I'm like, "Really? So you're going to stop them? You're ready?" He goes, "I'm ready." I'm like, "All right. Cool." So we had to take sawdust and sprinkle in the corners of his house and we go, "Hey, look, I think there's termites. We think you have termites. We have to tent the place, so we need to get you out of here." My wife called a mental care facility place and she told them and they're like, "Oh no, this is not the first time. This happens. Bring him and drive right underneath into the garage and we'll take him in. He won't see any signs or anything. Tell him it's a hotel and leave him here. Tell him it's for three days and we will take it day by day. We've done this many times."
So my wife says, "We got to go. We have to tent the place so they can fumigate it." So she packed his bags and got his dog and she's like, "My friend has a hotel, a really cool hotel, so just stay there for three days while they fumigate the place." And then three days became four days and five days and he's like, "What's going on?" We're like, "They're still working on it. He can't tell time so he wasn't sure. He is like, "All right. All right." It's been months and he's still there. So that's how we did it. You don't discuss it with him because every single thing you tell him, he says no. If you say sit, he stands. If you say stand, he sits. That's how his brain works.

Dr. Correa:
So by the time you guys really got to engage in the planning and helping take care of him, he was far enough along that he couldn't really participate in the discussion.

Oscar Nuñez:
And he's honoree. He's a honoree, cranky, charming, but cranky guy and it's his way or the highway. Her mother on the other hand does know what happened. We're like, "We're moving you out. We're going to sell the house." She's like, "Yeah." She knows what was happening and she had dementia.

Dr. Correa:
After these experiences, has it changed anything that you and Ursula have talked about in terms of focusing on your own or the next generation's brain health?

Oscar Nuñez:
No. Research is going to be the research. It will get better and better, the research and the medication and things like that. But again, the main issue is one of taking care of them and managing their lives. Everything else is out of a person's control. A person doesn't have control over what research medicine is doing in the realms of curing that. That's up to the researchers and stuff.

Dr. Correa:
Over the course of these experiences, did you and your family find any resources from Alzheimer's Association or any groups and support groups that were very helpful?

Oscar Nuñez:
My wife can... Let me get her because she does have some groups... Hey, Urs, are you here?

Ursula Whittaker:
Hello.

Dr. Correa:
Thanks, Ursula. So we have Ursula Whittaker joining us here. Ursula, Oscar was sharing with us his experience with his in-laws, your parents and particularly your father. I'm just wondering if over your experiences together with your family members living with dementia, if you found any resources and support groups or organizations that were helpful in just managing all the things that you have to balance?

Ursula Whittaker:
Absolutely. I first reached out to Alzheimer's LA because we live in Los Angeles. Before that, we also looked into Alzheimers.org, I guess is what it's covered for the entire United States. And then I joined a support group through USC. They have a great program there, and so we meet twice a month Thursdays. Those were two super helpful organizations that really helped me. Alzheimer's LA is probably how I got connected to the USC program, and I have a mentor there. I call the social worker at Alzheimer's LA every time I'm trying to figure out how to move my father from his home where he was alone to the memory care. It was just collaborating with people who are caregivers, who work professionally or social workers or other caregivers who are not professional, who are just dealing with their parents or their parent-in-laws.

Dr. Correa:
Is there something that you would say to a friend or a new family member who's experiencing this at the beginning if they have a parent or family member diagnosed with dementia? What would you tell them to impart the knowledge and everything that you've learned?

Ursula Whittaker:
I think the hardest part for me was that I couldn't see where the end was. It's so stressful and you're in this constant stress. It feels like it can be a ten-year journey. For my father, it's probably going to be closer to 20 years. He's a very fit person. He's already been going through this for nine years. He is not showing any signs of ending his journey. So pacing, we still have to find care for ourselves. We still have to do little things every day that are some sort of self-care because too often you hear of caregivers dying before the loved one who has dementia or Alzheimer's, which is crazy.
We all feel so alone on this journey, and I felt like talking to other people who had walked before me, other children of people with dementia, you don't have to do it alone. There are organizations. It feels like when you're going through it, like you're the first person going through this and you feel so alone, and so it's really helpful to reach out and talk to people who have had success helping their loved ones.

Dr. Correa:
Well, thank you, Ursula and Oscar, both of you for taking the time to join us and take us into the thick of all the challenges that you guys have had in your family in navigating this and just being present with your family.

Oscar Nuñez:
Thank you.

Ursula Whittaker:
No problem.

Dr. Correa:
Okay. And we're back. That was a great discussion with Oscar and Ursula about all the challenges that they've navigated in their family with the aging family members that they had the honor to help, support and take care of. Now I'm joined by Dr. Joel Salinas. He's a dementia specialist at NYU and the founder of a telehealth service called Isaac Health that focuses on brain health and dementia. You may have heard him in a past episode we had about a phenomenon called synesthesia that he and many other people experience, and today we're glad to welcome him back as one of our experts for this discussion. Joel, thank you so much for joining us.

Dr. Joel Salinas:
Thank you for having me. I'm looking forward to the conversation.

Dr. Correa:
Joel, let's start off with acknowledging the fact that in Ursula, both of her parents had dementia and Oscar talks about several family members who are impacted by dementia, including his father. In many people's lives, they might wonder, oh, do they need to be screened for genetic causes of dementia? When is it right and when do you consider that discussion about familial genetic screening for causes of dementia?

Dr. Joel Salinas:
Yeah. I mean, my heart goes out to their family. I mean, these are really challenging situations to be in. When you have a family member who's affected by one of these really devastating conditions, it makes a lot of sense that you would be really worried about will this happen to you? I think one of the things that I will first talk through with those that are really concerned is when those types of symptoms of dementia, where they first began, because the age of onset can give you some clues about whether it's likely to be an inherited form of dementia or it's one that we call sporadic, meaning that it's not inherited, which is by far the most common scenario. About 80% of cases are sporadic.
When people have started to develop symptoms younger than age 65, that's when we start to wonder about the possibility of something genetic, especially when people are developing symptoms in their 40s. In some families, it starts even in their 30s. We'll also ask about if there's any pattern. If we're hearing that many people in the family we're developing some kind of dementia earlier in their life, then that might indicate the need for some genetic testing. Usually, when we do genetic testing, we're talking about actually working with a genetic counselor to talk through what the implications of results mean, regardless of what the results may come back as.

Dr. Correa:
I think, yeah, it's important to highlight that aspect, like you said, that it's a risk factor. We've had several past episodes on different types of dementia and dementia overall with excellent expert discussions. So I would encourage our listeners, if you want to learn more specifically about types of dementias and more in background on what is dementia, please go back and check those other episodes.
We're going to continue this discussion on some of the other key aspects about the family discussions and navigating that together with your family. Now, Joel, you see many individuals along with their family members who are starting to have changes in their cognitive function, their memory, or maybe even they just came to you because they're concerned of maybe a cognitive impact of something else going on in their life. When you start to have that discussion with them on really understanding what is cognitive decline for them and what kinds of wishes they have for aging with their family, how do you approach that with the individual and with the family members?

Dr. Joel Salinas:
It's tough when you start to notice these changes because it could be the sign of the early development of a neurodegenerative disease, a disease like Alzheimer's disease, which is the most common, or one of the many other causes of developing progressive difficulty with memory and thinking and other brain functions that can amount to dementia as the disease progresses. One of the most important things to start is just destigmatize talking about these types of symptoms or changes. Our functioning, our independence, these are things that are so core to our identity and feeling that it's at a loss or at risk can be very threatening for the person who's experiencing it. So they may have a lot of anxiety about it, but they may also try to avoid conversations about it. It can be a very touchy subject.
I usually recommend to start having conversations about what would happen if a condition like Alzheimer's disease were to develop way early, early, early on, so that way, if and when that does happen, it's less of an awkward conversation to really broach. I feel like if the conversation is not awkward when you are broaching it, it's probably a little late in the game. It really should feel a little awkward when you start talking about it because that means you're talking about it early. What we really look for for these changes is not the occasional lapse. Lapse is like, "I forgot my keys," or "What was the name of that actor?" Those can happen, but if those changes are happening more and more frequently over time, that might suggest that there is some underlying change and that usually is a good sign that you should talk to a healthcare professional.

Dr. Correa:
I like the cue and the memory that, without meaning to use the term memory there, the idea that if it feels uncomfortable to start talking about your wishes and what would happen with cognitive decline, then that's probably the right time that you're starting to talk about it, that it's early and it feels uncomfortable at that point. Waiting until the stage where it's already the issues are starting to occur is going to make it even that much more challenging because as you said, the person that is experiencing it not only feels defensive but is also now starting to maybe have some limited cognitive capacity to be as engaged and understanding in the conversation. That's a unique way of particularly thinking about it, almost kind of like the importance of having some of those tough discussions together as a family at the Thanksgiving table, but this is just one of those topics to consider in our regular discussions as a family.
It makes me think of maybe a thought exercise we can go through now. I will ask our listeners to acknowledge that both Joel and I are in New York, so we're going to get a little bit of that background music of the city here and there. So let's try that out, Joel. Let's think of some of the people in the context and where this conversation feels uncomfortable. If you're a son, so if you put yourself in that situation, thinking of the ways it would be important to you to have this discussion early when you can fully engage it with your parents and relate that to our listeners, and then maybe we'll try to thinking about yourself in the context of you as the aging family member and maybe you as a care partner or spouse of an individual who is going to be taking care of their parent.

Dr. Joel Salinas:
Yeah. How that conversation could be broached? There's one framework that I find really helpful for these types of conversations. It's a framework that's been proposed by these researchers, Chris Argyris and Don Schoen. It's called the Ladder of Inference. Essentially, this ladder demonstrates how we come up with conclusions of information. So at the top of the ladder is kind of like conclusions. Second rung down is a reasoning and our interpretations, how do past influences lead to the meaning-making that you're doing. Below that is specific data that you've selected. And then the rung below that, it's all available data, the sea or the soup of all available data. The reason why I'm saying this is that when you communicate this, you don't want to start at the headline, at the top. You want to start from the data and slowly work your way up the ladder.
So what I would say if it were my father, I'd say, "Papa," say, "Dad, over the last year, year and a half, we've been around each other quite a bit and I've started to notice a couple of times where you forgot that you had an appointment and that you forgot to turn the stove off and otherwise a couple of times where you put the forks and knives in your bedroom and there was no real reason why that would've happened. I want to tell you that when I see those things, I get a little concerned about the possibility of some changes going on that might be due to a condition. I don't want to say that you have a condition, I just wanted to tell you that I'm concerned about it and I'd like to hear your thoughts and how you feel about what I've just said."

Dr. Correa:
Yeah, I like that there's not a conclusion or stated diagnosis there and that you're starting conversation. Now, what if you're in your father's or that aging family member's position, whether you feel defensive of symptoms you've been noticing or you know about the symptoms or even a diagnosis and you want to start and open that discussion with children and other family members who may be very resistant to you not being that powerful leading family member that everyone sees?

Dr. Joel Salinas:
I think that same framework could apply here. I think one other thing that can be really helpful is really focusing in on coming from a place of values or interests. So for example, if the shared value or interests here is health and well-being, then you can start say, "I care a lot about your health as much as I care about my own health, and I think that whether I'm experiencing some changes or not, I want to do whatever I can to make sure that I'm there as my best self for as long as possible. I was wondering if you've noticed any changes or if you have any specific feelings about what might happen or what we could do if I were to have a condition that would make it hard for me to make decisions for myself."

Dr. Correa:
Lastly, just that idea of stepping in as an outsider to a family. Oscar and Ursula have each had to support each other through this process. So another care partner in the family who's the spouse or someone else joining, how do they engage with everyone else in the family about this coming in as an outsider?

Dr. Joel Salinas:
I think it takes a lot of listening before calling out. I think the more real deep listening you do, the more you understand dynamics, you more you understand what values are, you understand what are big fears that people have, and you also learn a little bit about how to broach a subject like that. I think there's a temptation to avoid confrontation for some people and then for others to steamroll. What you ideally want to do is find a place where everybody is on equal footing and you're not coming from a place of judgment but from a place of love and kindness and compassion without jumping to conclusions, right? This is more of that ladder of inference. "I've noticed X, Y, Z things. I wonder if you've noticed the same thing and what your thoughts are on that because this is what it means to me."

Dr. Correa:
Yeah, that's a unique way and I think important in all the family interactions, especially when you're coming in as an outsider, but just leverages that idea for this and one of the most challenging situations.

Dr. Joel Salinas:
Absolutely.

Dr. Correa:
Now, Joel, somos Latinos, we both come from particularly different cultures throughout South America, Caribbean, in Nicaragua and in many other places of the country. Aging in the family and someone needing more care and support and through activities of their daily life is done uniquely than it is in some other countries. So I'm wondering, now being practicing as a dementia specialist in the United States and helping families from hundreds of different cultures in New York City, how you navigate these discussions and how people consider the differences in their culture and what's available support in society and the different options there are?

Dr. Joel Salinas:
Yeah, you're right. I've been lucky enough to have worked with patients and families from so many different backgrounds, culturally, ethnically, socioeconomically and even different levels of education. I think what's been helpful for me in a lot of these interactions and what I've observed is to really meet people where they're at, and meeting them where they're at does require a bit of listening. So whenever I start my engagement with patients, I first welcome and give a layout of what the exchange will look and feel like, and then I really give them stage time. I just leave a very open-ended question to really describe the series of events that led to coming to see me in the office, and then I let them describe to me. Usually, the first thing that they'll tell you is what they're most concerned about.
I will say that of the many patients and families I've spoken to, there's also different levels of distress around these conditions. There are some families where it's extremely distressing to think that these symptoms are coming on and in a way having that distress really motivated them to be seen by a healthcare professional, which ultimately it does end up helping them. For others, there's not a lot of distress and they end up only seeing a healthcare professional once things have gotten very, very advanced. So I would say that there's got to be a happy medium there of being concerned enough, just like how we are about cancer. There's some concern about cancer, let's go talk to the doctor for early detection and diagnosis so we can have an early intervention.
I think if we can move that same kind of framework into the realm of memory and thinking into cognitive functioning, I think that would help us to know when and feel more empowered to see a healthcare professional when it's really needed, especially now that there's at least one fully approved FDA drug to help to treat the underlying biology of Alzheimer's disease, but there's a very specific window of time when that drug is even applicable, which is in the earliest stages. So it is really important to really be mindful and aware and really broach the subject and talk to the healthcare professional when you are concerned, so that healthcare professional ends up serving as that third person that's more objective, who can take a look at all the facts and put together their formulation of what could be going on, how likely those different things may be and what to do about it.

Dr. Correa:
Yeah. I mean, I think that is an extremely appealing approach and that I think you'll probably have many of our listeners wanting to sign up to either get on your schedule to see you in New York or join your telehealth platform. So before when we were talking about the situations of these discussions in our family, you brought up a few things, forgetting things around the home, misplacing things in places that just didn't really make sense. We as medical providers use a term of activities of daily living. What does that really mean for an individual and their family, and are there certain types of activities in our daily function that might help us cue if a decline is happening that we should pay attention to?

Dr. Joel Salinas:
Yeah. There's two categories of these activities of daily living. There's the basic and then there's the instrumental. Basically, instrumental just refers to more complex activities of daily living. So the basic things are bathing, going to the bathroom, getting dressed, feeding yourself. The instrumental activities, these more complex ones are things like going to the grocery store to run errands, doing daily chores, handling communication like phone calls and emails, being able to manage your finances, being able to solve daily problems, learning how to use gadgets and other technology.
It's a pretty broad category of activities, but those are typically the first that are affected when someone's cognitive memory and thinking issues have progressed beyond just being symptoms, beyond just being detectable in a clinical evaluation to when it's really starting to impact. So that might look like difficulty with taking your medications regularly because missing doses or you're doubling up on doses or you can't sort them. It can look like going to the grocery store and not being able to remember what you needed to buy off of a short list or showing to appointments that didn't really exist or missing many appointments. It can look like missing bill payments or writing the wrong number for checks or another payments that you're making.
So these kind of patterns of difficulty where things are requiring more effort, more time, or there's a lot of mistakes being made are some of these earlier signs of something that's really progressed beyond just symptoms, beyond what we call mild cognitive impairment or MCI and is really meandered into the area of dementia, which is when these memory and thinking issues are affecting your day-to-day functioning. Specifically, if it's just the complex thing, then it's called mild dementia.

Dr. Correa:
Now, let's get to the challenging situation of... I'm thinking of discussions my father, aunts and uncles have had with my grandfather. When challenges with these more complex tasks, driving and going to the grocery store start to occur, how much is it important that people continue to try to do and participate in these activities, or is it really that someone else should be stepping in and doing them for them and that whole sort of issue is being withdrawn from these activities, actually contributing sometimes to decline or not?

Dr. Joel Salinas:
We want to come from a place of avoiding the potential for harm while also not robbing people of their agency or their independence. There's this process of shared decision-making and supported decision-making that can be really valuable here, which is really making decisions together and doing whatever you can to make it easier to make especially really challenging decisions. Just because someone started to have difficulty remembering thinking, it doesn't mean that you need to take keys away and lock them behind a cabinet. It really depends on what the person's able to do, and that involves some supervision. It involves some observation, seeing are there issues happening, are there concerns that are very clear here, because if even though it seems like there might be and you observe and you see that they're actually doing things just fine without a problem, then there's no real reason to take that away from them the independence away.
Driving is one where you want to make sure that things are safe for that person who's driving, who else are people in the car and people around. For that, I usually want to get an understanding as to one, is whether a passenger in the car with them driving feels safe. If the person in the passenger side seat is concerned and doesn't feel safe, that's usually a good indication that the person shouldn't be driving anymore. In a lot of conditions that are progressive, those changes will get worse over time, and so you want to be able to catch as these changes are happening way ahead of the potential of there being a risk to anybody.

Dr. Correa:
So it sounds like in that initial transition, whether it's you, a tía, a tío bringing in a home care aide to help with some of this, that you participate along with them in the activity to observe and support, but don't try to take away everything from them because that's probably only going to start a much more contentious process. When is it time? I'm sure I know that the answer is not going to be a definitive, but when is it time to consider transitioning out of the home or getting more assisted support in the home for someone?

Dr. Joel Salinas:
I think having conversations early about what to do, it's still important here, but that can look like is understanding how much support is needed and whether there is somebody available to provide that kind of support reliably. This is relevant to Hispanic Latinx cultures, which is there's a lot of familism. So in those that have a lot of where family is extremely important, it's very centered, you do tend to see situations where a lot of family really pitches in.
I've seen situations where cousins, uncles, aunts, brothers, sisters, people come and visit and there's a rotating cast of people that are coming in to check in to see how things are going, to help them get into bed at night, making sure that medications are being taken. Those situations, it's pretty clear that you might not necessarily need to bring an outside of home health or home care into the home immediately, only when things really progress much, much further down the line, but not everybody has that sort of situation. Some people live by themselves. Some people don't have a lot of friends or family in the area that they live, and so that's where you want to start to figure what your options are based off of your financial resources, what is possible through your insurance coverage or whatever health plan that you have and any local resources that are available to you. But yeah, it really depends on the individual and it's a big conversation to have.

Dr. Correa:
But it sounds like this is probably one of the most important parts and components to get to when we're having these discussions earlier on. Everyone can be an active member and participant in the discussion within the family that getting through the other parts that are uncomfortable and awkward about what might be happening and what things might look like in the future to really get to the brass taxes of when it gets to the stage when you need more help, where would you like to be having that help, in the home, outside and what is the family's capacity to even get to that stage and what's the reality of that in our society financially, because that's often a privilege that many people don't have.
Now, lastly, I wanted to get to one of the most important parts that we got to with Oscar is at some point, with a lot of the cognitive decline that can occur and the challenges people can have, all of a sudden that comfortable home, you start to see it as a family member as an obstacle course of danger, whether it's the stove and the oven and the knives, the keys to the car and driving outside the home. In some places around the country and in some people's homes, there are weapons like guns.
Now, Oscar brought up the situation where it got to the stage in the family that there were so many guns in the home, that they had to take them to someone to take out the firing pins. There was such a battle about driving the car, that they had to disable the car, whether that's changing the battery or taking out spark plugs. I've had some of these discussions also with families that I've supported in my own care. Are there ways that you suggest navigating those discussions about some of these most dangerous items like driving when you're incapacitated and/or guns before it gets to the stage of having to physically alter and disable the devices?

Dr. Joel Salinas:
Yeah. I mean, it goes back to having these conversations early so that way, they can participate in them. As the disease progresses, they may or likely will forget that they've had these conversations, but you'll know that you're acting on behalf of their wishes when you need to do things, like locking things up or taking away keys. It really is for their own safety and the safety of the people around. If you were to talk to that family member before the condition, I think the chances are they would probably agree that they want to keep themselves and their loved ones safe in the case they no longer had the ability to make sound decisions for themselves. There are some situations where as the disease progresses, you need to make sure that you're not just the healthcare proxy, but you're also the surrogate decision maker and that can include things like a power of attorney. That way, you can rest assure that you have at least the legal support to do all these things.
It can be really distressing, especially when people are just at the place where if their family member who has some form of dementia has a casual conversation with somebody on the street for less than five minutes, that person might not know that there's an issue going on and it can lead to a lot of difficulty around challenging whether or not you're doing the right thing or not. But I think that's why there's a lot of attorneys that specialize in elder law to set up all the things and protections that you need, so that way, even in these really, really tricky situations, you've got a plan in place to keep everybody safe and make sure that you have that additional sense of assurance that you're acting on their best interest based off of what they've expressed.

Dr. Correa:
These are deep and challenging discussions. I mean, you've been incredibly helpful. We've gone into more of these details in several articles within the Brain & Life Magazine, and there's several resources that you mentioned that we'll make sure to include in our show notes. But Joel, thank you so much for all the work that you're doing for our communities and for sharing your time with us and the listeners today.

Dr. Joel Salinas:
Thank you for having me. It was a pleasure.

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 & Life Magazine for free at Brainandlife.org. Don't forget about Brain & Life in Español.

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 & 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.

 

Back to Top