Alzheimer’s Diagnosis: What Now? Caregiver Support, Survival and New Discoveries (Part 2)

Alzheimer’s Diagnosis: What Now? Caregiver Support, Survival and New Discoveries (Part 2)

Brain Health, Memory Changes, and Alzheimer’s 

Welcome to Part 2 of our special series on Senior PrimeTime, where real people and real conversations come together. In this episode, host Bonnie Keith continues the discussion with featured specialists Sivana Lavine Waller from the Alzheimer's Association and Geriatric Care Manager Ronda Wilkin to explore actionable strategies, medical evaluations, caregiver support, and emerging hope in Alzheimer's and dementia care.

Building on the foundation laid in Part 1, this episode tackles the difficult moments families face when cognitive changes become apparent. The experts address the complex challenge of denial and anosognosia, explaining how brain changes often prevent individuals from recognizing their own deficits. To help families navigate these sensitive situations without destructive arguments, the guests introduce compassionate communication techniques, including the Art of the Fib, therapeutic white lies, and the LEAP method of listening, emphasizing, agreeing, and partnering. Listeners learn why arguing with a progressive brain disease is a battle caregivers will always lose, and how shifting communication strategies preserves dignity while ensuring safety.

The conversation examines what a comprehensive cognitive evaluation entails, from ruling out reversible medical causes to conducting physical workups, mood assessments, and MoCA testing. The specialists discuss groundbreaking advancements in diagnostic medicine, such as FDA-approved blood biomarker tests like p-Tau 217, which enable early detection and allow individuals to access disease-modifying treatments that slow disease progression. The episode emphasizes why early intervention is critical for buying precious time and quality of life.

Finally, the episode closes with a powerful message of optimism. With expanding research pipelines, findings from the landmark US POINTER study, and an unprecedented array of community support resources, families are reminded that they do not have to navigate this journey alone.

Guest Contact Information:

Sivana Lavine Waller, MPH Senior Program Manager, Alzheimer's Association California Southland Chapter Direct Phone: 818-446-1573 Email: sclavine@alz.org Alzheimer's Association Helpline: 1-800-272-3900 Website: alz.org

Ronda Wilkin Geriatric Care Manager and Senior Advocate, Dementia and Alzheimer's Specialist Direct Phone: 818-667-9133 Email: ronda@dementiapartner.com

Presented by The Foundation for Senior Services:

Senior PrimeTime is proudly brought to you by The Foundation for Senior Services, connecting seniors and families with trusted education, valuable resources, and vetted specialists. Special thanks to CEO and Co-Founder Joyce Robertson and the Foundation's AgeWell Academy for providing essential community education to help older adults and families better understand the issues that affect aging.

The Foundation for Senior Services Toll-Free Phone: 855-836-0807 General Email: info@TheFSS.org Website: FoundationForSeniorServices.org 

Senior PrimeTime is brought to you by the Foundation for Senior Services and hosted by Bonnie Keith.
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Transcript

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SPEAKER_01 0:04

Welcome back to Senior Prime Time, where real people and real conversations come together. I'm your host, Bonnie Peter. Senior Prime Time is proudly brought to you by Joyce Robertson and the Foundation for Senior Services, connecting seniors and families, trusted education, valuable resources, and specialists. Today we are diving into part two of our series on brain health and Alzheimer's. Joining us once again are two of our senior specialists. Savannah Waller, Senior Program Manager at the Alzheimer's Association, and Rhonda Wilkins, the geriatric care manager and dementia partner. In part one, we broke down the difference between dementia and Alzheimer's, how to protect your brain health, and how to recognize the beginning signs of dementia. Today in part two, we are tackling the hard questions: how to help a loved one in denial, what a comprehensive cognitive evaluation involves, legal and financial planning, surviving character burnout, and reasons for real hope. This is an important conversation with so much valuable information to cover. So let's get right to it. Okay, so we recognize something is wrong with a family member. The harder moment comes when the person you love says, I'm fine. There's nothing wrong with me. So what do you do when they are so strongly in denial or fear? What do you do then? How do you get them to go even see a doctor to start to confront what's happening with them? That one is hard.

SPEAKER_02 1:43

Oh, yeah. Yeah, that one is always hard. So um I'm a believer in what I call the art of the fiblet. And it's uh actually a class that I teach. It's those tender white lies that we use to get around a sticky situation. And they're absolutely ethical and correct. I've worked with many families, especially loving spouses, who are like, I could never lie to my wife. I just can't do it. And I'm like, but this is a little different. So, how to get someone to the doctor? I've told the healthy spouse to say, Oh, honey, I have a doctor's appointment. I want you to come with me and make it all about you. And then when they get there, you can have a conversation a little different, but you can get them there by a little fiblet saying, Oh, I have a doctor's appointment, will you come with me or whatever? What you're talking about is anosognosia, you know, where it can be very frustrating where a loved one vehemently doesn't believe that anything is wrong. And their safety is actually compromised. They truly don't understand, they can't understand that they have a disease and they lack, they literally lack the capability to recognize their deficits. And it makes our it truly makes our work more difficult. And we need to just understand and do the workarounds for that. I have I have clients with this particular diagnosis, and we are repeating why they need extra help. We've been saying it for months. There's something in our industry that sometimes is useful called the leap method with this disease, where if you want to better communicate, it helps you to listen, leap, listen. You want to emphasize, you want to agree with them, and then you want to be their partner. You don't want to be the angry spouse. The other thing I often teach is I'll use you as an example. Bonnie, you're no longer arguing with Paul, you're arguing with the disease. And if you're arguing with the disease, you're going to lose. So let's figure out better strategies of communication where you can get the result that you're looking for. And that's really hard, right? It looks like Paul, it sounds like Paul, talks like Paul, but with cognitive disease and brain shrinkage, it wasn't you're going to argue with a disease, and you are always going to lose. So, what's the workaround? How do I teach you to better ask questions? For example, I had a client whose husband was in memory care, and having her leave a visit was often tough, as it so often is for lovely couples, right? They've been married, they're soulmates, and having them leave. I asked her, so what would be something that you did that he would never want to go with you, never questioned, wasn't an issue. So we talked about it, we strategized, and she was very active in the women's club at church. Her name was Lynn. I said, Lynn, every day when you go to leave your husband, you just tell him you have to go to the women's club at church, even if it's not every day. Why? Because it gets you out of the community, it leaves him in a good place. He's comforted, he's not feeling like you've abandoned him when you've left. He's never been to the women's club at church. Why would today be any different? Again, it's the art of the fiblet. You're just gonna say it every day because every day is a new day. It didn't matter. It easily got her out of the community. And that is what the communication strategies that both Savannah, the Alzheimer's Association, when I teach, it's about how we make it a better day. We want people to live well with disease. How are we going to do that for a cognitive disease?

SPEAKER_00 5:51

Ronor brought up a lot of um good information. It's true, you know, the the white lie, the fiblet is very much um a used practice. If someone does potentially have some awareness that this is what they're going through, a loved one can approach that individual and say, I noticed some changes in you. I'm concerned. Have you noticed anything? And it doesn't have to come from a place of, oh, you definitely have dementia. You know, we should definitely know we should go to the doctor because it could be so many other things. And it's that's a very intense way of saying it. So it's coming from a place of concern, of empathy. Of course, there might be pushback, there might be denial, there's a lot of fear. But just making sure that everyone's in a calm space when there's that conversation, it's the right person having the conversation, and then of course, offering to go to the doctor with that individual and making it something that afterwards they're going to their favorite lunch spot or they're cueing it so that it's a a better experience than um one based in fear. But it it really can be like, hey, it would really make me feel better if we got everything checked out completely, just a full checkup. So that's what I would add. But if someone has uh a situation where they can't understand that they have anything wrong with them, it yeah, it makes it quite a bit more difficult.

SPEAKER_01 7:09

So we get to the point where somehow they're agreeing or you fibletted your way to get them to see a a doctor, hopefully a neurologist. What does a thoughtful cognitive evaluation look like?

SPEAKER_00 7:21

As I mentioned just before, they want to rule out that it could be anything else. Um that's really important. So the full medical workup includes the vitals, the full physical, looking at all the medications they're on, the blood and urine tests, mood assessment because depression can mimic some of the symptoms of Alzheimer's. And then they'll go into some type of cognitive testing. So a mini cog or the MOCA test that primary care physicians who are trained can do this, of course, neurologists, geriatricians, et cetera. And then, if needed, they move into the brain imaging. And now we have FDA-approved blood tests, our biomarkers as well, that they can see the biological elements in the blood. So that's very important. So, with all of that holistically, they get to the decision of what that diagnosis is. But it can take a while because of all those elements and going through all the history and all the workup.

SPEAKER_01 8:15

Could you just briefly talk a little bit about the biomarkers? My husband never had that. He had the Mocha test and then he was sent for some some blood work and some ultrasound. Can you talk a little bit about the this new advancement?

SPEAKER_02 8:28

So we've got a biomarkers test now that can test for the PTAU 217 Alzheimer's. It's really important for people, I believe, to have access to this test for early diagnosis, early intervention. So Alzheimer's, again, is a disease of time. Again, we are only trying to buy time. So as an advocate for the Alzheimer's Association, I am often in DC and Sacramento. And recently in DC, we are calling this our mammogram moment because very smartly so, many years ago, people decided women should have mammograms as early as 40 with no symptoms of any sort of breast cancer. Why? To find it early, to get early treatment. And in the end, it saves lives. So we've got some early treatment. We are truly in an era of hope. Like I said, I've been doing an Alzheimer's memory walk for more than 20 years, and I am so incredibly proud to see the difference in the story that we are now going to tell at walks this year. That with early intervention and early treatments, we can slow disease down. We don't have cure, we have treatment. And I think that's a huge difference for the audience to understand. And again, it's a disease of time. I would rather have dementia in my 80s and 90s than I would following my sweetmother and aunts in my mid to late 60s, having it start. I would do anything I could for those extra 20, 25 years. Or maybe I'm physically unhealthy enough, I'm gonna be a lucky one, right? But I want the answers. And I think most people would. So we have early biomarker blood tests, we have treatments. Now, since we're talking about this, I will just spend a moment to tell the audience where we're at, because everybody who's 65 or over is now going to run into their doctor and say, Oh, I heard Ronda Savannah. I want this blood test, I want this blood test. And unfortunately, the way Medicare is set up, the law of Medicare says that they can't treat unless there are symptoms. If you have symptoms, it's too late to start screening and taking the treatments that we want you to have early on. Remember my breast cancer mammogram story. So folks like myself, and I hope many members of the audience listening are asking our representatives. That's why one of the reasons I was in DC in June, because it's going to take an act of Congress to override Medicare law. It's not Medicare's fault. Somebody like myself, if I was 65, would have no reason to get the blood test except for family history. Medicare is not required to cover it. I'm not showing any symptoms. We want early intervention because it brings hope, because the research is working. We have earlier treatments, but we have to get you there early. That's key, and that's what we're fighting for.

SPEAKER_00 11:46

And that act is called the ASAP Act. Thanks. And it's bipartisan, and we're urging legislators to co-sponsor that legislation.

SPEAKER_01 11:56

They were diagnosed and a diagnosis, like it was with my husband, he wasn't going to eat for three days. He was very depressed. And uh, so it can feel like a door's closing. But in reality, an accurate diagnosis can also be the point, at least which a family can start making choices. After a diagnosis, what are some things that in the first couple of days and weeks of family start thinking about? One thing that happened right when he was diagnosed, the neurologist said to him, By the way, you can't drive anymore. And and my husband heard part of that and he went, Oh, yeah, I don't go very far. He goes, No, no, no, no, no. You cannot drive anymore. He said, Once you're diagnosed with this, that his license can be taken away if he has to had to send the report to the DMV and looked at the doctor and like, he's not, he's not going to stop driving. And he said, You have to take away his keys and hide them. That's a big thing, driving. That's the person's independence. That's the person's identity. Can you talk about all of this after the diagnosis of what everyone's going through?

SPEAKER_00 12:53

It's it can be a shock to the family and the individual, definitely. And all the sort of rippling effects that happen, one of them being driving, which of course, as you mentioned, is closely tied to independence. And it's really important to make sure that the person that has the disease knows that there's alternatives, right? Because if they're left with nothing, that's going to make them, like you said, even depressed and inward. And so who can drive them somewhere? Can they use a city transportation like access? You know, what's going on where they could still have some interaction? But one of the most important things I always talk to individuals about is the legal and financial planning. You can start, obviously, it's very overwhelming if you haven't started yet. But it is really important because as Rhonda mentioned, this is a disease of time. So as the individual progresses, they will no longer have the capacity to sign some of these very important documents, like the power of attorney and advanced health care directives, putting a trust and a will together. Those types of things are extremely, extremely important and have time elements to it. The other thing that has a time element to it is if the individual is in the early stages of the disease, then looking with the care team to see if there are any clinical trials or any treatments that would be appropriate for the individual, of course, in correspondence with the healthcare provider, but those need to start early. Um and just getting connected. I think unfortunately, people put that on the back burner. But from the Alzheimer's Association perspective, all of our free care and support resources are available immediately to someone who gets a diagnosis as well as their family. So everything from our 24-7 helpline to our support groups to we have something called Miles Journey, which is a free app for those who are care partners and those in the early stage. That's, you know, all available to them. Of course, they may not want to access all of that all at once, but taking that step to not feel so alone is really an important component. So these are the some of the things that families and individuals can start thinking about in the very early stages because waiting is the problem, unfortunately. Some people become paralyzed, they're in denial, fear, and shame. But looking at what has happened to some individuals when they wait is terrifying, honestly, because sometimes you have to have your loved one conserved. There's no plan in place for future care. Things go into probate eventually, right? Things can get really ugly. And so I just caution people if they wait.

SPEAKER_02 15:27

And then for both of us, that caregiver, that stress on that caregiver for me becomes so important. When I take on a client, a new client. Of course, I'm gonna do what I can to have somebody live well with disease and make sure they're cared for and wrap around all the services. But I look right at that spouse and say, I want to make sure that you get through this also, because caregiver stress is absolutely real. My personal family history, my grandparents, does come with the healthier spouse, my grandmother, having a massive coronary stroke six weeks before my grandfather, who was the one with late stage Alzheimer's. So within six weeks, my family and I lost two people to one disease. And that sort of, I said, that's never happening again. And so, like yourself, Bonnie, I can only help him live well through the journey and make sure he's comfortable. Bonnie, I want you to survive this. Most of my families that I care for, there are children and grandchildren, and there are reasons to live. And so, what can we do for caregivers? We have over 7 million people in the United States with disease, and we have over 12 million unpaid caregivers. We have more people now taking, according to Harvard Business Review journal from last year, more people taking off time from work for an elderly parent than they are now for a young child. Now, that's a switch of what we're also used to. And so we do know the impact. So the Alzheimer's Association, myself, most geriatric care managers, we are hypersensitive, uber focused really on that care family piece. We want to make sure that you guys are okay. How are we gonna help you?

SPEAKER_01 17:24

For me, I knew that I could not have Paul continue to live at home, and that became a big thing. So what do you do about that? Well, especially when he just wasn't safe anymore. He was a big man, and I could not be the one to be taking care of him. How do you advise people? I had the help of Joyce Robertson from the Foundation for Senior Services, as I said, by my side every step of the way. And it was with Joyce's help that I was able to find an assisted living for Paul. But what advice do you give people for in-home care or out-home care or adult day care programs, memory care? What are you talking about?

SPEAKER_02 18:02

Bonnie, every case is different. Different. Okay. And just like every every case is different. When I counsel families, it's looking at the resources, doing home safety checks where I've got homes of people that were putting in chairlifts and elevators, and those were moving into assisted living. And it's never easy, but often has to be done. And the truth is, having come from the assisted living world, I will say that when done right, they are cruise ships that don't move with tender loving care and clinical oversight. And I've been saying that for more than 25 years because the engagement, the activities are there, the care is there, and family gets to be family. I want you to be a wife. I want an adult child to be an adult child and have that life back. So everything is taken into consideration when we make decisions. I usually look at the spouse when they are crying on my shoulder and they say, Rhonda, how do I know when it's time? And I I just look at them when you tell me you've had enough. Like Bonnie, you came to the point where it was about you, right? And I'm telling you, that's often where I come from. It is about you. When you've had enough and you can't do it, it's time to move someone into an appropriate memory care setting. Right. That's my philosophy.

SPEAKER_00 19:33

I agree with you that it oftentimes is about the caregiver because the individual themselves, not always, but oftentimes they don't want, you know, someone unfamiliar in their home. They don't want to move to a different place that's not their home. Maybe they do, but oftentimes no. So it becomes evaluating, yeah, that particular family's needs and also the caregiver framing it around them, saying that I need help, right? Like, not, oh, you need help. It's really how does this support the caregiver? And some tactics we've used over time have been, you know, this person's here to help me with the lighthousework and cleaning, right? And eventually that person gets used to it. Oftentimes we have the skiblets. Those spiblets staying in the house with them so they get familiar with them. Oh, this isn't so bad. Or the care needs to be person-centered, which I really think is very important, right? So that the people taking care of them, whether in an ADHC, home care, assisted living, know the individual's preferences, likes, dislikes, right? And how do you make that a comfortable situation and transition for them? Whether it's photo albums, pictures, that comfortable blanket they've always had, something that anchors them in their identity and their independence, because that's what they feel is being taken from them oftentimes when there is conflict. So I think, yes, it is an evaluation, but most times it's when the caregiver has come to a crossroads. Um, like you said, Bonnie, whether it's safety issues, right? There's caregiver burnout, which is very real, as Rhonda was mentioning, whether it's exhaustion, irritability, depression, complete withdrawal, exhaustion, and those have real consequences for their health. And so, yeah, how do we make sure that both people in this situation, both the primary caregiver as well as the loved one with the disease, has that support and is comfortable and safe, which we always focus on because if there are safety issues, wandering, they're leaving the you know, kitchen stove on, uh we've seen them many times before. That's when the caregiver stress goes way, way up. So I would just say it's looking at the whole picture there.

SPEAKER_01 21:46

So as memory and judgment change, what should families realistically expect from behaviors such as repetition, anger, suspicion, agitation, withdrawal? How can they respond without becoming Not just the memory police, but without becoming agitated themselves, which I was all the time. How do you preserve their dignity?

SPEAKER_02 22:07

I call the Alzheimer's Association, get a geriatric care manager, or the Foundation for Senior Services. Get the professionals on your side who have dealt who have dealt with this. Get yourself a shoulder to cry on. Yeah, we'll get you through it.

SPEAKER_01 22:24

Yeah. Uh with that, I mean, I'm telling you, without without Joyce Robertson, I probably wouldn't be here today talking to you guys. And mom is going to get a little a little emotional, but she was a friend before, but she became beyond. And she knew what to ask. Again, I didn't know, not just didn't I have the answers to the questions, I didn't know what questions to ask to get the answers, and Joyce did. So if a listener is recognizing their own family in this conversation, and I'm sure that there are a lot out there, what's the greatest reason possibly for realistic hope right now?

SPEAKER_00 22:56

Hope is very real right now. We've been talking about it the whole time, but I'll re-emphasize it, right? We have treatments that can slow down the progression of the disease with well's cognitive impairment and early stage dementia. So we encourage everyone to get early accurate diagnoses to be able to do that. We have blood biomarkers that we've never had before, which is incredible, that can help with that early accurate diagnosis. And we're on our way to really understanding all these lifestyle risk reduction factors with the U.S. pointer study, which is an incredible body of work that's telling us that health monitoring, exercise, diet, cognitive stimulation is all working and it's supporting our cognitive functioning. So I'd say that yes, there's a ton of hope right now. Don't wait, as we've said that the whole time. Don't wait, get tested, go to your doctor, ask the right questions, get support from the Alzheimer's Association with the free care and support we have, whether it's a support group, the helpline, our education classes. We're talking about behaviors. We have a lot on behaviors, all these coaching moments. So it's it's really important to get support and not wait. But the hope is is definitely there. I'm really excited for our walk this season, the walk to an Alzheimer's, because they will be filled with hope. We have more in the research pipeline than we've ever had, ever. We have more knowledge and understanding of this disease, and it just continues. And so Alzheimer's Association is the largest nonprofit funder of research in the world, and we ha convene the largest research conference every year in the world. And so we will continue to push forward all this uh research and policy and breakthroughs. So I just encourage the families to get started because uh we're not in the same place we were even five years ago.

SPEAKER_02 24:40

There are resources, as there are resources, there are experts, there are people out there that can help. And I just want to reiterate we truly are seeing the wins. It is. It is about hope. It is about hope.

SPEAKER_01 24:53

I thank you both so much for sharing your knowledge and your uh experience and your compassion. You've helped in clarity to an overwhelming and deeply emotional subject. One for me and I'm sure for many of our listeners and viewers, while giving individuals and families practical guidance and genuine reasons for the hope that we're talking about. So I appreciate your time and everything that both of you do to support people navigating cognitive change and dementia. And just thank you so much for being here. Blessings to you both.

SPEAKER_02 25:25

Thank you.

SPEAKER_00 25:25

Thank you for having us. Thank you. Yeah, and being so vulnerable with your story as well.

SPEAKER_01 25:31

Yes. Of course, you guys. And again, thank you to Joyce, who sorry that you couldn't be with us today, and the Foundation for Senior Services, who is also a wealth of information and resources for the seniors, their families, and the senior community. And with that, this is Senior Prime Time, and we'll catch you next time. As we wrap up this special two-part series, one message stands out above all. You do not have to walk this road alone. And there is genuine reason for hope. You can find all contact information for our guests, as well as the Foundation for Senior Services, right in the episode description below. Please follow, subscribe, and share these episodes with a family member or friend who may find them helpful. This is Senior Prime Time. Real people, real conversations. See you next time for another senior conversation. You won't want to miss the next one.