Advice For the Sandwich Generation

In this conversation, Dr. Mia and Dr. Catherine Madison discuss the complexities of caregiving for individuals with dementia, drawing from personal experiences and professional insights. They explore the importance of understanding advanced care planning, and the vulnerability of dementia patients to health challenges. The discussion also covers legal considerations for caregivers, tools for initiating end-of-life conversations, and lifestyle changes that can enhance brain health. Dr. Madison emphasizes the need for open dialogue about death and dying, as well as the significance of research in improving dementia care.

Dr. Catherine Madison, a board-certified neurologist and author of Navigating Memory Loss: Essential Questions and Answers on Alzheimer’s and Dementia. With over 40 years of experience in clinical neurology, Dr. Madison has dedicated her career to helping individuals and families understand, manage, and live well with cognitive decline.

As the founding medical director of the Ray Dolby Brain Health Center in San Francisco, she developed a groundbreaking model of care that supports both patients and their loved ones, a holistic approach that has since influenced dementia programs nationwide. She continues this work through her private practice and her role with Jewish Family and Children’s Services (seniors at home), where she educates families on brain health, cognitive aging, and care planning.

Dr. Madison is known for blending clinical expertise with a deeply human touch. Her new book translates the most current research on Alzheimer’s and dementia into clear, compassionate answers for those facing these conditions. She’s an engaging and empathetic guest who can speak on:

• How to recognize the earliest signs of memory loss—and what to do next
• The latest science on Alzheimer’s and other dementias
• How families can plan for care, maintain connection, and protect quality of life
• Practical steps for supporting brain health as we age

Goodreads: https://bit.ly/4h7UbN5

Amazon: https://bit.ly/4of9qGv

Book: navigating memory loss

https://codaalliance.org/go-wish/#faqs

https://seniorsathome.jfcs.org/

Chapters

00:00 Navigating Memory Loss: Introduction to Dementia Care
02:31 Personal Journey: The Impact of Caregiving
05:16 Understanding Anosognosia: Awareness in Dementia
08:08 Advanced Care Planning: Preparing for the Future
10:55 The Vulnerability of Dementia: Health Challenges
13:43 Legal Considerations: Directives and Estate Planning
16:22 Conversations About End-of-Life: Tools and Techniques
19:07 Lifestyle Changes: Enhancing Brain Health
21:19 Research Insights: The Future of Dementia Care

Transcript

0:01

Welcome back to Ask Dr. Mia podcast. I am here today with Dr. Katherine Madison. We are going to talk about uh what to do as a uh midlife adult child who may have been dealing with an aging parent with serious illness like dementia and her new book, uh Navigating Memory Loss. Dr. Madison is a board certified neurologist who has over 40 years of experience in helping individuals and families understand and manage and to live well with cognitive decline. She is a founding medical director of the Ray Dolby Brain Health Center in San Francisco and joins us today from California. And I know from reading her book, that she also has a family history of her mother dealing with Alzheimer's disease. So thank you so much for joining us today, Dr. Madison. Thank you for having me. All right, well, one thing that I want us to start out with is if you can tell us kind of what inspired you to write this book. Well, as you mentioned, I lived through my own mother coming down with a dementia. And I'm the youngest of four, but I'm the doctor in the family, so obviously I was the one who was supposed to take care of things. And as many are familiar with, I was sandwiched between both aging parents working and three small children. So I literally came up with the phrase of walking in the trenches and not knowing if the light coming over my shoulder was the sun or the moon because you cannot take your eyes off your feet. You have to keep trudging forward. oh I became much more interested in dementia related to that experience I had with my mom. And over 20 years ago, there was hardly any place to go for advice. So, you know, the void was evident. And then later, I was able to take care of a well-known individual, Ray Dolby, who's responsible for the sound system we're all using today. came down with an Alzheimer's and I developed a very close relationship with him and his family. The family was very grateful for the level of care that I gave them. We envisioned and then started the Ray Dolby Brain Health Center in San Francisco, California. to give care to not just the individual with the dementia, but the whole family. Because dementia is what I call a horizontal illness. It affects the person as well as every other individual who's connected to them. And so by just treating the patients, we're not really helping the problem. In my work over the years, I found myself offering the same bits of advice again and again. And after I left the Dolby Center, because I'm no longer the director there, I left the Dolby Center and I work with a large nonprofit called Seniors at Home, and I wanted to try and share those bits of information that were the most valuable. And I thought, well, the best way to do that is to get it out in a book or get it out in video vignettes, because you can't keep giving advice one on one. This is the way now to share information that's valuable. Exactly. And that's why I started this podcast with that same idea of kind of reaching more than one person in my clinic at a time. And what kind of advice do you wish you you had known earlier in your own journey? Well, what I focus on a lot in my book is the concept of anosognosia. So anosognosia is a medical term describing a neurologic or psychiatric condition where an individual is unaware of their own illness. It results from structural changes in the brain so that our normal self-referential thinking breaks down. And so someone who has a dementia, like when I was in an office and I would be talking to a patient and say, well, how often do you exercise? And the patient would say back to me, I walk two miles every day. And the daughter would look astounded and say, mom, you haven't done that for a year. the patient, she has anal psychnosia and so she's lost the ability to cross-reference time in her brain. in her reality, her walking one year ago is equal to her walking yesterday and the day before. and the day before. So a lot of my book focuses on you, the family member, the care provider, using that information to more effectively communicate and care for your loved one, also to plan for yourself. Exactly. I think that planning for yourself as the caregiver is the thing that I'm really excited to kind of delve deeper with you today. I know there's one thing that we don't oftentimes talk about is asking the care partner themselves to think about their advanced care planning. What are your thoughts? I think we should all have our advanced care planning in place now. uh I have three daughters and they have said to me on multiple times, mom, not everybody's as comfortable talking about death over the dinner table as you are. Yet that's how I am. And I think the more we talk about this, the better. And so I have put together something which is called an addendum to your advanced healthcare directive that is specifically for neurocognitive impairment. And what I've got is really what I consider the short and essential points because there are many letters. Stanford, for instance, has, you know, letter of my doctor and uh Compassionate Choices has a good uh Directive around dementia there. There are lots of different choices, but I think things simple because I think that's more effective in communicating and so my directive simply states kind of is an introduction that if you are reading this because my physician is determined that I have a dementia and I'm no longer able to independently control my life, I want you to understand that I don't necessarily want my life prolonged as if I'm not controlling it, I don't consider that living. a control freak. You know, and I say I know that dementia can have significant emotional and financial burdens on a family. And so I ask you to follow my wishes for care as outlined below. And then I list off several things, including no CPR, no feeding tubes, and I don't ever want anyone to coax or cajole me to eat or to feed me. I want hospice involved as soon as possible. And if I come down with an illness, I don't want diagnostic tests or treatment that could be burdensome. I want comfort care. And so our middle daughter who has been determined the first decision maker, because everybody agrees she'd be willing to pull the plug if needed. uh Every now and then she'll say to me, so mom, do you really mean if you like came down with an infection and you had dementia, you wouldn't want antibiotics? And it's nice we've got this all written down because I can keep saying to her, yes, I really mean that. Now that is changing. as you and I know, because you recently had a podcast about everything from AAIC, and you've had podcasts on the treatments. And so now with this knowledge about anasognosia for caregivers, I'm hoping that everybody will understand, number one, you need to make your own decisions widely available to your family and your partners in care. but also we're coming up with treatments. And so we should all, if we see suspecting changes in ourself or our loved one, we should really seek out diagnostic treatment because there are now treatments which are helping, which is new in neurology. Exactly. Yeah. And I think that that is so important. I oftentimes see that the people who are very clear about what they want or don't want, health care professionals, you we were talking about this before the recording that something like over 90 % of health care professionals will not want themselves to undergo CPR because we have seen what happens when you undergo CPR. But most people who are not in health care who are Intimately thinking about death and dying and dementia on a daily basis like you and I Oftentimes don't really know I think they don't necessarily know what what they want and they don't know what the future hold and it does make it really challenging for Their loved ones whether they are surrogate decision-makers or power of attorney to really interpret how that Person who is living with memory loss? living with dementia would want to do. ah And this happens so commonly where people might have a mild degree of memory loss and then they get COVID or the flu. We are in respiratory season and that additional illness really sets off a chain of events that dramatically worsens their underlying dementia and their overall function. uh a patient right now whose family is struggling with kind of just how rapid things have changed. And I think most people don't necessarily realize that, um you know, having a diagnosis of dementia really counts up. In my mind, I picture it's almost like you're at the edge of a cliff. A very little wind can just kind of push you over. And that frailty or that vulnerability is what makes dementia so distinctive than perhaps some of the other chronic illnesses. And having diabetes most of the time doesn't make you so vulnerable that something a little bit will tip you over, but that is not the case for dementia. Yeah, and so for when it comes to, yeah, go ahead. Well, you touched on a couple of things there and you talked about someone who's got like a mild dementia, then they come down with an illness like uh a COVID for instance, and they get really, really sick with it. And they have a hard time coming back if they, well, unfortunately I'll tell the family it's unlikely they'll ever come back to the level they were before they came down with that illness. And it's related to the illness itself. And as you know, inflammation that it can trigger in the brain, which can cause more pathology, pathology and more damage to the brain. And in addition, we all have cognitive reserve. And so people can manage in a dementia with loss of short-term memory, even with some impairment and executive function, yet still maintain reasonable social skills. So they keep up this facade. that things are okay. And so then when they get sick and all of those defenses come down, that's when they fall off that cliff. Exactly, exactly. think our social graces can fool a lot of people a lot, even our family members who may not be there every day. You you talk to someone for five minutes and they seem okay, but they're actually not okay. And I think that's also another reason why sometimes different family members have such a different interpretation of what's happening. The family that's farther away are almost in disbelief of the family member that is the primary caregiver in really believing that primary caregiver on how bad things are. And it's not uncommon where I see adult children who don't agree with each other about how bad something really is or what the decision next points are. So when it comes to that uh addendum to the advanced directive, um Is that something that you put in place with a lawyer to get that uh added? how does it work? Because I know there are different states with different laws. right. That's a good question. So I put together my own addendum based on my professional experience in different books, which I read. ah And then I was able to, after years, oh convince my husband to sign it because he always equated caring for someone with dementia as love. And it took me many, many years and stories to convince him, no, but if that person doesn't want to live in a dependent state, that changes the equation. So made the directive up and here in California, you know, you have to have an estate if you own a house in the state of California or it's going to go through probate. And so, you know, we have a home and so we set up our estate and I actually brought it to our estate attorney and it was very interesting that the attorney didn't see the need for this because he thought that his company pretty much had it covered. So I looked at what this estate planning group, you know, had as their boilerplate. ah And in their document was the term, you're going to love this, that you would allow only gentle CPR. And right, you're laughing. I like what? is that. So included in my addendum is no CPR under any circumstances ever. So you get the document, you got to discuss it with your decision makers in your family. The one that I've made up, you you sign it yourself and then have someone witness it. And so then I basically had it included in all of our trust documents. uh I also, with the trust document, sent it out to all three of our daughters and I did it in an email because, you know, they're all digital. And so I'm like, well, I'm not going to tell you where this paper is filed in the, you know, whatever, in the safe. ah And so I sent it by email and only the middle daughter replied to me. And her answer was just perfect. She said, kind of morbid mom, but thanks. You made her decision any future decision she has to make a lot easier because you're very clear about what you don't want and yes. Yeah. yes. Yes. the important thing is to continue to have conversations. One thing that I um bring up in my book is something called go wish cards. Have you ever seen those? Let her go wish carts. Go Wish is a card set developed by a nonprofit in Berkeley called the Koda Foundation. And what they are is a set of cards which offers choices that you might want to prioritize if you were at the end of life. And so it's, uh they're choices like I don't want to be short of breath. I'm an asthmatic. And so that's a number one choice stream because that's an absolutely terrifying experience. I want to have my family with me. I want to die in the hospital. I want to die at home. You know, I want to have my financial priorities in order. I want to be able to pray all sorts of different priorities and. I believe now they sell them as sets of four, so there's four different colors of cards. And so this is like how to start a table conversation. And I have actually done that when people have been guests at our house. What is important to you at the end of life? So you go through the cards and you sort them into three piles. And one pile is what's the most important to me. As I mentioned, not being short of breath goes right into my most important pile. Then you have a middle pile and having my family with me is kind of middle. I'm not sure if I want them with me or not. And then there's a discard pile. I mean, that one, I am a spiritual and religious person, but I might put pray in the discard pile because I hope I've got that all handled before I come to the end. uh And after you've done that, then everybody, compares their list of their top priorities. And that's how you then start this conversation around the table about what is important to people. And it can be a really, really valuable conversation. You find out things about other people and even yourself that you didn't necessarily know coming into this sort of a meeting. I... recommend something like that when people are like, how do you start the conversation? Number one, acknowledge it's really tough. And here's the way to do it. That's really great. Yeah, I have not heard of the Go Wish cards, but I um have seen cards of similar type where it's kind of a conversation starter. I have heard of Five Wishes, which is another kind of format that leads people through, it's not in the format of cards, but kind of leads people through kind of the decisions at the end of life and what would be important. um Yeah, no, I think that's a great tool to use. mean, I think it's always hard having those conversations. And I remember talking about end of life with my mom before she passed away was challenging, even though we both knew that she was dying. It was still hard to kind of talk about it ah because it's uncomfortable and we don't necessarily want to face our own mortality nor our parents mortality. um But I remember asking her, you know, are you afraid of dying? And her answer was actually surprising to me. She said she was not afraid of dying, um which kind of gave me some comfort. uh And knowing that she very much priced her independence. And when she got to a point where she did need some help to go to the bathroom and, you know, it was a mix of her Parkinson's and her cancer. interplay making her very, very weak and having a lot of mobility issues. She really, I mean, she said that this is not the kind of life that I want to prolong. Like this is not a worthwhile life to me. And, and sometimes, you know, oftentimes people living with dementia don't necessarily have that insight to be able to say it, although there there can be surprises in terms of very lucid periods that still happen. But I want to focus a little bit away from the very end of life and talk about kind of the lifestyle changes or things that you have mentioned in your book for caregivers to focus on. Because I think we do have a lot of power in what how we want to control our life and our health. What are some things that you typically suggest to your patients to your caregivers? Well, after we've had the discussion about them making their own plans and documenting that well, I talk with people about the lifestyle interventions which research continually supports will keep our brain healthier. It may not necessarily prevent dementia, but if it kicks it that condition three or five years down the road, my goodness, that's worth the investment. So I believe in just that multi-pronged approach, which has also been supported by research in terms of uh a healthy diet, uh physical exercise, the standard recommendation is 150 minutes of an activity each day. Keeping your brain stimulated. Our brains are hardwired. to seek out novelty, you know, and they kind of need that sort of stimulation. So keeping your brain stimulated. For exercise, I oftentimes recommend dance. because it's got both the social side of it for stimulation and it's physically active. you know, so I think that's a real good strategy. ah Looking at your over-the-counter medications, understanding that maybe even a third, I've heard it said that up to a third of medications seniors take can have cognitive side effects, adverse. cognitive side effects, so it's important to look through your medications. It's extremely important to get a good night's sleep. Our sleep is not a passive process. We now understand that during our sleep we consolidate memories during the day. So even if you take young healthy people, and that's been done over at UC Berkeley, where they take healthy students and they deprive them of sleep, and the ones who stay up all night cramming consistently perform more poorly on the test the next day than the ones that got a good night's sleep. So... the sleep becomes more important to us as we age. And then the new research about the glymphatic drainage system in the brain actually draining toxins from our brain during our deep stages of sleep. So emphasizing sleep for all of us, I think is really, really important. I know you've talked a bit about diet and I actually worked with Dr. Dean Ornish on his lifestyle study. Alzheimer's and early dementia and was able to see firsthand how this really intense dietary program along with exercise, along with the group support and emphasis on health could really change people's lives. So it's effort. But for all of us who want to have a healthy life, now we're using the term health span instead of lifespan, if we want a longer health span, we should invest the time in taking care of ourselves today. Absolutely. I know we underestimate how much these lifestyle factors and improvements in our lifestyle can improve our brain health. I get some sometimes patients, not everyone, but sometimes patients get disappointed when they hear me talking about the lifestyle. uh factors and say, okay, that's it, just eat more fish. I'm like, no, that's not that's not what I'm saying at all. I'm saying that all of these things in combination could really improve your memory as we have seen in the finger study and the pointer study, and that people's memory actually improve over time, uh which is better than you know, even the anti amyloid of these this isn't people who are cognitively normal, but even when you think about anti amyloid drugs, they don't improve people's memory. They only slow down the progression of the disease. And if you catch people early enough, that's where the biggest bang for the buck is. uh So yeah, I what what specific things do you typically recommend for people who want to, you know, do more in terms of their diet? uh to follow the MIND diet. Do you know, I think that's a tough question. It's very individualized. uh And I like the guidelines of the MIND diet, concentrating on a diet which has more vegetables and fiber and fruit, staying away from the processed foods, simple foods, limiting your saturated fats. You can't do too much fish either, you know? I mean, you've got to keep to moderation with everything. but keeping with simple foods, staying away from processed foods, making as much as you can yourself, which is hard as a parent with young children. oh It can be done though. It takes effort. I've been very impressed with my middle daughter with three children, six and down to two. ah And she will have all three of them in the kitchen with her. baking, which I think is fabulous. So the more we can take on control of our own lifestyle and what we eat and put into our bodies, I think the healthier we're going to be. Yeah, absolutely. I'm still working on getting my children to eat more vegetables. We're just trying different vegetables to see which one they like a little bit better than, you know, my son only likes carrots and my daughter likes bell peppers. That's where we have got stuck on. And it changes. Exactly. Anything ah else? Yeah, anything else you would like to leave our audience with, anything that has been surprising to you in recent years, whether it's related to research or in the field of Alzheimer's disease and related dementias. I don't think there've been any single big surprises. There's been cumulative hope. Maybe that's the surprise. Because it is every single time I go to AAIC, either in person or virtually, I kind of like the virtual too. I'm always invigorated. with the amount of research being done. And so we're talking about the combination benefits of lifestyle. It's wonderful to see the way they're doing combination in the treatments as well. And it looks like in combination, they're finding that treatments will have a cumulative benefit for individuals. And I think my biggest take home point for everybody is to simply understand that aging remains the highest risk for dementia and we're all aging. So we want to implement as many steps as we can to take. care of ourselves, understanding that anal psychotinology is present in the majority of individuals with cognitive impairment and clearly stating what we want if we come down with a dementia and those, the medicines which have been able to finally turn neurodegenerative illnesses into other chronic illnesses like heart disease if they're not around yet. how we want our family to take care of us so that we can maintain as much dignity as we can with our life. Absolutely. Thank you so much for joining us, Dr. Madison, and we will link. the book, Navigating Memory Loss, Essential Questions and Answers on Alzheimer's and Dementia to the show notes. And I read it and I think it's a really easy to read format. And I like that it's kind of Q &A. So some of the questions that was featured in the book were definitely questions that I've been asked as well in my memory clinic. So thank you for putting the book out there and for joining us today. and thank you all for listening. Talk to you all next time.