Over 10% of the US population is in some way affected by Alzheimer’s Disease. For the second episode of our San Diego Series, and our 99th long form conversation, Fran Racioppi visits Alzheimer’s San Diego to discuss Alzheimer’s disease, a progressive brain disorder that affects millions of people worldwide.
Fran is joined by CEO Eugenia Welch and Clinical Care Specialist Preston Stocking to explore what Alzheimer’s disease is, what the symptoms are, and how it impacts both patients and their families. They also cover Alzheimer’s San Diego’s pillars of support including a unique program training law enforcement officers on the signs of dementia and how to best handle affected citizens.
Fran, Eugenia and Preston share their personal stories of coping with loved ones affected by Alzheimer’s. Whether you are someone with a personal connection to Alzheimer’s disease or just interested in learning more about this topic, this conversation will provide valuable insights and information that can help all of us in the fight against this dark disease.
Learn more about Alzheimer’s San Diego on alzsd.org and on social media at @alzheimerssd.
Special thanks to the San Diego Military Advisory Council for their support in producing this episode.
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Eugenia and Preston, welcome to the Jedburgh Podcast.
Thanks for having us.
This is an impactful and important episode for me. Thank you so much for helping set this up and welcoming us to Alzheimer’s San Diego. I told you when we were doing some of the calls before we met that my grandfather suffered from dementia and he was 89 years old. He was a role model in my life and was a part of almost every single day of my life growing up. I was in college when he passed away but it stuck with me. You remember him as he was a chemical engineer in the Army Corps of Engineers and worked on the Manhattan Project.
In the last few months of his life, it was hard to see it. It will be with me those last few months for the rest of my life. When we were introduced and had this opportunity, we haven’t done an episode on Alzheimer’s or had this discussion on the Jedburgh Podcast. I was immediately and very excited to come to San Diego. It’s part of our San Diego series. It’s episode two of that. It’s also episode 99. It’s another benchmark there. We’re going to close out single digits on this episode but thank you so much for spending some time with me.
We’re happy to have you here and always happy to raise awareness of this topic. It’s important.
Let’s talk about the topic for a minute with Alzheimer’s and throw out some stats. I’ve been doing the research but Alzheimer’s is the top six leading causes of death in the US, California and San Diego. It’s up there with cancer, COVID, disease, accidents and strokes. In San Diego County alone, there are right around 100,000 residents aged 55 plus with diagnosed Alzheimer’s.
That number by 2030 is expected to grow to about 115,000. The number that I found staggering is that it takes almost 300,000 people to care for 115,000. That’s almost a 2.5 to 3 to 1 ratio of caregiver to patient. There are 3.2 million people in San Diego County and 3% suffer from Alzheimer’s. The more important number is that 10% of people are in some way affected by Alzheimer’s. Why are these numbers so important for everybody to digest?
It’s important for people to digest these numbers to see the scope. There are a few things about these numbers that aren’t shown in the statistics. One of the most important things or one of the biggest difficulties is people even getting a diagnosis. When you’re stating all those numbers, they’re true as far as we know them to be but we also know that it is very hard to get a diagnosis and a large percentage of the people that we work with and help regularly don’t even have a diagnosis of dementia, Alzheimer’s or any of the related diseases. Those numbers that you quoted are much higher in all actuality. They’re just not recorded. The other staggering thing is that we know that 25% of people who have a diagnosis of some form of dementia live alone.
There’s nobody looking at them every day to even address change and identify the behavioral change in the pattern of life.
You also talked about the fact that that’s 55 and over. We hear from people all the time that are in their late 50s and early 60s have to stop working because of this. Maybe they’ve lost their health insurance. Often people think of Alzheimer’s as an older person’s disease. They think of somebody who’s 89 like your grandfather. When it impacts younger people, it’s even much more difficult. I was talking to someone, the husband’s 52. He’s the breadwinner for the family. They have children that are still in high school. He had to stop work. The wife had to go back to work. Now she’s caring for teenagers and her husband with much fewer resources and a very different healthcare package than they had before. It bleeds into every aspect of family life.
You’re the CEO of Alzheimer’s San Diego. What drew you into this type of work?
My grandmother is the youngest of nine. I come from a big family. I was around all my older aunts and uncles my whole life. I was always around people in their 60s, 70s and 80s. From the time I was a child, my great-grandmother was still alive. We cared for her at home as a family. My mom worked in this environment in a residential care setting.
When I turned sixteen, I got a job there. I liked it. I went to school. My background is in Health Administration and Gerontology and I’ve worked with seniors my whole life. To begin volunteering many years ago with Alzheimer’s San Diego was that I have family who died of Alzheimer’s disease. They were on the East coast. I wasn’t there to help like, “What can I do here?” I got involved with the local organization here. One thing led to another and here I am.
Preston, I want to ask you because you’re on the clinical services side of things here. I want to talk about the disease itself. It’s a slow disease that progresses. In some terms, at a snail’s pace. It’s one of those things where the onset is slow but then it can turn up very quickly. There are three phases, early preclinical stage and almost no symptoms. You have the middle stage with mild cognitive impairment and then there’s this final or later stage. Progression varies from person to person. Not everyone experiences even the same symptoms. People live 2 to 20 years. The average I understand is 3 to 11 years. What do you see in patients as they progress through these phases?
We have a saying at Alzheimer’s San Diego, “When you met one person with dementia or Alzheimer’s, you’ve met one person.” The typical progression. We see people who come in and are in the early stages get a diagnosis. They’re still highly functioning and can communicate well. You don’t know these many symptoms at all until you start talking to them on a one-on-one level. It progresses into disorientation and confusion. Unfortunately, they’ll have to stop driving at a certain point.
[bctt tweet=”You don’t know the symptoms of dementia at all until you start talking to them on a one-on-one level. It progresses into disorientation and confusion.” via=”no”]
From a timeline standpoint, the early stages are 2 to 3 years and there are the long middle stages. Once we start seeing some physical declines, needing help with what we call activities of daily living, being able to pay bills on time, dress, feed yourself and things like that, then that’s when we start transitioning to the later stages and starting to see the physical toll of it. It’s a horrible disease. You see these common symptoms but everyone has their unique journey with it.
What controls that pace of how quickly somebody progresses?
I wish I had the answer to that question but I would say it’s a myriad of other health factors that are involved with it. Some people are incredibly physically active and they can have great physical health but their mental deteriorates at a slower pace. It depends from person to person but the important factor is if you can have a healthy heart along the way, that’s going to improve your chances of living a longer period.
What brought you to the organization?
I was going to San Diego State and finishing my Master of Social Work Program. I was in my second-year internship and looking to connect with older adults. I loved working with that population previously. During my second year at San Diego State, I interned here at Alzheimer’s San Diego and enjoyed the work. I did something right because I got a job offer when I graduated. It was a great place to learn and I’ve been here ever since.
One of the most frustrating parts of Alzheimer’s is the inability to figure out the true causes. We’ve already alluded to it here even a couple of times in a few minutes. Some people can talk about genetics, environmental factors and lifestyle. When you work with a patient, how important is the cause? What does the science say about the root cause of the disease?
First of all, when we work with people, the cause means nothing to us for how we’re going to be able to offer assistance and care for them because whether it be frontotemporal dementia, Lewy body vascular dementia or any of those, a lot of the behaviors manifest the same. It’s coping with those things. The science of how it’s caused is attributed to everything.
I looked it up. That’s why I’m asking.
Did you also find some of the cures that are out there? For every cause, there’s also a corresponding cure.
The answer to that is there is no cure.
Desperately, people want to be there and be like, “Have you tried this supplement?” There’s not. Our focus is to try to help people live the best life they can with the disease. Alzheimer’s can get very dark. If you’ve seen it, you know but that doesn’t mean the whole time that you’re dealing with it has to be that dark. You can try to have as much enjoyment as possible while you’re working through those stages.
You talked a bit ago about early-onset dementia, people who are aged 30 to 60. It’s a small percentage. About 5% of people with Alzheimer’s fall into this. They’ve also found that there are demographics of people who are more susceptible to the disease. People with Down syndrome, for example, and certain ethnic backgrounds may also fall into that. What’s the difference between these early-onset cases versus the elderly?
The one main thing is that we typically see someone with early onset progresses through the stages much quicker. The younger you are when you are diagnosed, the quicker you’re going to progress through the stages versus somebody older.
When we see those families come in, we’ve talked about the typical progression is very typically slow. The changes when they come, whether it’s a result of a fall or something like that, can make the changes happen a little bit quicker and hits harder for the family to deal with.
I did not find that in trying to understand the difference between those two. If it’s coming on earlier, you’re going to be on the shorter end of the lifespan.
We’ve all seen the movies where it’s like, “If you talk to them this way, they’re going to remember you or you do this.” Unfortunately, Alzheimer’s is in some ways made fun of, “It’s funny. It’s this and that,” but it’s a real safety issue. People don’t think about that. Somebody with dementia gets to a point where they can’t make safe decisions, which is why they can’t drive anymore. Not just because they can’t find their way home but because while they’re out driving, they might not recognize they’re turning the wrong way on the road.
One of the hardest things for families dealing with someone or caring for someone with dementia is that they’re having to make all the decisions themselves. That’s can lead to a lot of caregiver stress because people are wanting to wander off, wouldn’t take their medications safely or can’t be left home alone. The safety risks are very high.
[bctt tweet=”One of the hardest things for families dealing with someone or caring for someone with dementia is that they’re having to make all the decisions themselves.” via=”no”]
I have a very good friend of mine whose of his in-laws have dementia. They’re in their 70s. They have full care 24/7. There are so many factors that go into that, the cost and the stress on the family because what I found through being close to him and his wife is that even though they’re not there caring for the parents every day, they have to manage a staff who’s doing that.
It’s running a small business.
One doesn’t show up that day. They call out and no one’s there. They can’t get someone to fill it and then they can’t go to work because they have to go take care of their parents. One of the programs that you have is designed around respite and giving breathing room to those who do care for them. It’s a 2.5 or 3 to 1 ratio for caregivers to patients. Can you talk for a minute about that program? Why do we have to think about the people who are giving care? We want to put the patient first and at the forefront of everything but there is a true mental, emotional and physical strain that’s put on the caregiver.
There’s a huge strain on caregivers. It’s 24/7. For somebody with Alzheimer’s, their sleep schedule might be all mixed up. They might sleep all day and be up all night. If you’re caring for them, that makes it very difficult for you to get rest. Maybe they can’t be left unsupervised because they will go for a walk down the street or whatever it might be. We all need that time to ourselves to recharge a little bit.
Through our ALZ Companions Program, we recruit and train volunteers to be able to go out and provide some free respite in the home to families. Our volunteers go out and they’re not doing hands-on care. They’re not bathing people or taking them to the bathroom but they’re providing that break so that if I’m caring for my husband, I can go to a movie, go have lunch with my friends and get some time to myself. A lot of people go take a nap when the caregiver’s there because they need to be alone in a room. Preston has been very much involved with ALZ Companions Program.
From helping manage it to also being an actual volunteer during my internship was a fantastic experience for me to get to know this veteran and I was fortunate to be able to tell his stories. That was awesome to hear. At the same time, I spent my weekly visit for about ten minutes with the care partner when she would arrive, go and then come back four hours later.
Even in that ten minutes, I could see the stress relief that she had when she’d come back. She could go run an errand and see a friend. It may not sound like that much but one of the most common things I hear from our clients is that they feel trapped in some ways because they’re in caregiver mode 24/7. The fact that they have some time for themselves is a gift. Not all the way is gone but it’s partially gone. It’s such a big stress relief for them.
A lot of caregivers are family with a lot of respect. A lot of times, the caregivers are also the ones who are going to identify that their family member has the onset of this disease. Can you talk for a minute about what do you look for? You have this list of these different symptoms but what is the point at which you yourself or you look at somebody, your loved one and say, “We need to go get looked at. We need to go talk to somebody?”
A lot of times, people will joke around and say, “I can’t find my keys. I must have Alzheimer’s.” It’s not that you can’t find your keys because we all do that. We’re all busy. It’s when you have your keys in your hand and you don’t know what they do. The signs to look for are people not sequencing things appropriately. Maybe their shirt is on over their sweater or bills not getting paid. Things that would’ve always been done religiously fall through the cracks. If you look at medication and the medication should be time to be renewed but it’s still a full bottle. Those are a few subtle things.
Any possible social withdrawal is a big one. It’s important to go get tested because a lot of the early stages of these symptoms and signs can look very similar to untreated depression but at least an untreated depression is theoretically treatable. We can at least pinpoint that and get the right treatment in place. If your gut feeling is saying, “This is off. They’re not the same person that they used to be,” then I would say, “Let’s go to the doctor, try to get a referral to a neurologist and go from there.”
It can be hard because sometimes there’s no baseline. Even the caregivers who are seeing the signs don’t necessarily want to hear this diagnosis. They’ll try to cover a little bit too and say, “She’s always been forgetful. He’s always been a little flighty,” or whatever it might be but there’s no baseline. I feel like there should be a baseline memory test and memory screening given to everyone at their doctor’s office maybe every two years once you reach a certain age. People get mammograms at a certain age. There are all kinds of tests that we do but we don’t do that with memory. If we did that, we could pick up on things sooner. That’s my belief.
The mission of Alzheimer’s San Diego is helping people impacted by dementia, fighting stigma and supporting research. There are three pillars of support that you focus on, education, social work and patient care. I want to dig into each one of these. Let’s start with education. You run events and seminars. Who’s the target audience? What are the components of those educational courses that you’re running?
The target audience is everyone but we have a few avenues to do that. There’s community education, which is the education for the person diagnosed with dementia and/or their care partner. We do have classes that are specific to the care partners that maybe the person with dementia would not be appropriate to attend. We have somewhere both can attend. We also have a lot of community education that we can tailor to specific groups. Maybe it’s medical professionals, grocery clerks or librarians.
A couple of years ago, we did a lot of training with utility employees, people that go out to the house and see people in their homes. We did training with the local cable company. You’re a cable employee and you’ve been out to this house three times because the person says their TV doesn’t work but it’s because they don’t know how to use their remote. It’s to help make some referrals and get resources that way.
One of the big things we’ve been doing a lot of and focusing on the last few years is more first responder training. People go out and respond to a scene. Officers don’t often get a lot of information before they get there. They’re dealing with what they’re seeing in front of them. Somebody with dementia could present as often as they’ve been interpreted as maybe under the influence of drugs or alcohol, being belligerent or resistant. We are trying to provide those tips and cues to recognize that maybe this is dementia or Alzheimer’s issue and to better handle the situation.
That kind of training fascinates me. It’s critical. It’s difficult to be a first responder. Let’s not sugarcoat it. It’s hard. You’re under the microscope. This is a point of differentiation. This is an opportunity for a first responder to truly be trained differently so that they can interpret those things. I don’t have the numbers on this but I’m sure that there’s a decent percentage of cases that involve people with Alzheimer’s who are interacting with first responders. Is that training widespread across the country? Do you know?
From what we’ve heard, it’s not prevalent across the country because we’ve had a few grants. We’re working on a grant with the Department of Justice for that training. We’ve been asked to speak at different conferences and things across the country. It’s always been, A) Very well received but B) “How do we get this? How can we do it in our area?” It’s not widespread. We’ve been lucky that it’s been very well received here in San Diego.
We are dealing with San Diego City Police and the sheriff’s department. There are a lot of different first responder entities. It’s not like you can just get to one and have the training go everywhere but when we’re able to get to them, they’re very receptive and able to make time for us in their schedule. Think about it. The first responder could get a call that focuses on someone from a newborn to 100 years old.
You can’t be a specialist in everything. Being able to have the resources, we’ve built some strong relationships. I never knew this but it makes sense. The computers that are in police cars can only access authorized websites. They can’t just surf the web, which makes sense. One of the local sheriffs saw our training as valuable. He got permission so that they can access our website from their vehicles because they see the value and they know that they can benefit from it. We also set up a specific referral line for first responders so that they can send their referrals to a separate box. We pay different attention to those to make sure they’re responded to even more quickly.
It’s one of those things when you brought it up here. People look at it and say, “Think about it.” Now that you’ve brought it up, you asked the question, “Why wouldn’t we do that?” Social work. Preston, this is your lane because this is what you focus on. Talk about the support groups and the social work that you are doing.
We have a lot of different services that are offered by our social work and clinical services team. One of the best things that we have is when we’re open, our phones are open. You can call in and clients can call in, whether it’s looking for a resource or like, “I’m having a crappy day. I need to talk to someone.” It’s something that there’s going to be someone on the other side of the line and being able to talk to you and get that information as quickly as possible. It’s something that we pride ourselves on. There’s so much stress in the daily lives of our care partners. We want to make sure we can get them accurate and good support as quickly as possible.
Being available to them is excellent. I don’t know how many support groups we have currently but we have a myriad of different support groups throughout San Diego County that some of which are in person but because of the pandemic, we had to transition to Zoom and talk about resilience. Our care partners were able to adjust to that pretty quickly. Building that sense of community in a support group is so important.
I facilitate one of the support groups for adult children that are caring for their parents and the support that they give each other. I pride myself in trying to give as much information and support as I can but it doesn’t match the type of support that you receive from another care partner who is in a similar situation, understands it and gets it. That’s the power of a support group that you see every time. I always encourage our care partners if they can make it to try out a support group.
We have under 40 support groups going on. They’re all around the county or virtual. Years ago, we never would have thought we would be doing a lot of virtual stuff but the whole world had to do that. We thought people would be anxious to get back to in-person support groups and some were but the other thing we discovered is for a lot of people, the idea that they can still do the support groups virtually and don’t have to get someone to come to stay with the person they’re caring for so they can drive to a support group alleviates that other burden as well.
Social work support and respite care are all free. To get someone to come into your home to provide four hours of respite care would cost, with the market, probably $200. For a lot of families, they can’t do it. They can’t afford it. Even if you could afford to pay for social work support, it’s not out there in our healthcare system. Our system isn’t modeled to have access to a social worker in that way. The only time we encounter social workers in our healthcare system is if you’re in the hospital and you’re being discharged or maybe if you’re in skilled nursing and you’re being discharged.
The services that you provide in Alzheimer’s San Diego are free. We dug into some of the numbers here. I’ll give you a couple of more that I found in “data” showing the internet. Google shows, “$4 billion in unpaid care is required for $100,000 that suffer from Alzheimer’s here in San Diego County.” You can do the math on that. It’s about $40,000 per year per patient.
That’s at home.
What does insurance cover? What does insurance not cover? How does the gap get covered?
As far as care at home, insurance doesn’t cover anything. Insurance is going to cover your doctor’s visits, any medications that might be prescribed that you need or if your doctor thinks maybe you could benefit from some physical therapies to prevent falls.
It’ll cover some hospice care at the very end stage.
That’s one of the great frustrations. I’ll speak on behalf of the clinical services team when we get asked that question. It’s like, “I have Medicare. What can I get from this?” We, unfortunately, have to present the bad news like, “It’s not going to get you that much or what you’re entirely looking for or what you need now.”
It’s coming out of your pocket. Anybody living in an assisted living community and long-term skilled nursing is paying out of pocket.
[bctt tweet=”Anybody living in an assisted living community and long-term skilled nursing is paying out of pocket.” via=”no”]
What if they don’t have it?
You move to a different facility that costs a little bit less. It’s a question that doesn’t have a good answer. The system is not prepared for the wave of older adults who are going to continue to have this disease that’s going to impact our system. We’re now prepared for that.
That $40,000 number you’re talking about is the cost of caring for somebody at home. That’s the cost of general living expenses at home. Maybe they’re getting a little help once in a while but most families can’t do that. What happens very often is someone giving up their job to stay home or what we see a lot of time is three-generation households where maybe instead of going to college, somebody’s after high school staying and taking care of grandma and then later maybe they can try to go to school or people patching it together. We see a lot of that where the person with dementia stays one week with this daughter and then this week with this daughter. It’s a solution but it’s not the best.
They need stability by creating change.
When you talk about moving into some care facility, that $40,000 number goes up significantly because, in any care facility, you’re looking at $5,000 to $10,000 a month.
Every once in a while, you will get at least through Medi-Cal, which is California’s version of Medicaid, the state insurance, there are a few things there that can help pay for some of the care in an assisted living facility or a memory care community. With the waitlist to get on, first, you have to qualify for Medi-Cal, which is hard to do. They’ve changed some of the things over the past years where, hopefully, a lot more people get access to that but still there’s this gap between the lowest of the lowest income and the people who have all the resources in the world. There are all these people in between who are stuck in these difficult situations.
You end up with people living in less-than-ideal situations safety-wise. Not because anyone is being negligent or not wanting to do their best but because they can only do what they can do. There is long-term care insurance, which is the only thing that will pay for assisted living or skilled nursing. You’ve had to have had the forethought to buy it early enough. Even those typically last for X number of dollars or X number of months, whichever happens first. It’s not a solution forever.
The third pillar is patient care. What is the role of the clinical care coaches when we talk about patient care?
We don’t do hands-on care but the clinical care coaches help guide the families towards a workable care plan on how to best care for their person at home, as well as trying to hook them up with all the available resources.
One of the difficult things is there isn’t a cure but we can focus on the quality of life aspect of working with this disease. This is so individualized. I want to hear from the care partners and hear exactly what’s going on and their unique challenges so I can personalize their care options to what’s going on in their life. The symptom of disorientation and confusion can look different for ten different people.
It’s like, “How do we approach that? How do we personalize that to their unique circumstances, not just to improve the person that has dementia and their quality of life but for the care partners as well to gain their confidence so that they can address it?” They all have the ability to do it deep down. It’s just they may need a little help and guidance to get there.
What do you tell the family that comes in this situation?
I never try to sugarcoat anything. I am always honest with them about what expectations are and answer their questions. I always want to go back to, “This disease can get you down but it doesn’t have to be the only defining aspect of your relationship with your person or your life.” There are a lot of different coping mechanisms, resources and support that you can plug yourself in as a care partner to feel like you can tackle it daily. There are moments throughout that are going to shine through and you’re still going to see the person that you love. It’s not going to be this disease all the time. It’s important to separate what is the disease and what is still your person. If they’re able to do that, it can certainly help along the way.
That is one of the things. Just because you get a diagnosis of dementia doesn’t mean automatically that day you can’t carry on a conversation or participate in your care. That time will come but it’s not immediate. We hear from people too that they’re so nervous about telling someone that they have a diagnosis because they know people immediately start deferring questions to their spouse or stop treating them like a real person.
They humanize them. What do you say to the person who comes in and says, “I’ve been diagnosed with dementia?”
A lot of times, there’s an underlying fear there but I go back to a strength space perspective of looking at what they’re still capable of doing. It’s so easy to get into a negative mind space and think, “I can’t do this anymore. I’m going to need help with this.” It takes a little bit of time to still realize, “Here’s everything that you’re still doing and capable of doing.”
I bet for most people it’s almost everything.
At the onset, some people drove themselves here and are still able to tell a funny joke or be able to connect on that emotional level. That doesn’t go away immediately
There are going to be things the person can’t do anymore but let them do as much as they can. Don’t take it away before you have to. If somebody’s still able to cook their favorite recipes, do the crossword, garden or whatever it is, let them enjoy as much as they can.
What’s the most rewarding part of being in these roles?
It’s when you see people live with the burden lifted a little bit. We’re not going to solve all their problems because we don’t have a cure. That would be the best thing and that’s not going to happen but when we are able to give them some tips, tools and things that can make their life a little bit easier, to me, that makes a difference.
A lot of times, I view it when someone comes in and they say, “I have A through D things that are going on that are stressful.” I’m able to connect them with a resource or look at this big puzzle that they’re presenting in front of me. I can point them in the right direction or move a piece closer together. That’s rewarding because they’re the ones doing the hard work. The majority of my clients that I interact with are able to put their puzzles back together in a way.
Sometimes they need a little bit of support. Whatever that answer is, it’s when that burden is looked at a little bit and they walk out and say, “This was not only useful for me in my time.” The most important resource they have is their time and energy. When they feel like, “This has been useful for me and I feel a little bit better. I can breathe a little bit easier,” that means the world to me.
The Baby Boomers are coming into this era of their life where many are going to be affected by Alzheimer’s. This is one of the largest population groups in America. We’ve talked a lot about the preparedness of the system to be able to absorb this many people. Is the healthcare system prepared to absorb an influx with the largest generation in the country?
In my opinion, no. We don’t have the resources in place to handle the people that are impacted. They call it the silver tsunami for a reason. It’s a lot of people coming. We don’t have the infrastructure. We’re not set up for it. One of the biggest shortages we have is for geriatricians. A geriatrician is generally a general practitioner who specializes in seniors. We don’t have hardly any. We don’t have enough. There are entire medical systems here in San Diego that don’t have one geriatrician on board.
It’s serious to be saying, “It’s a hospital without an obstetrician.” Who’s going to deliver the baby? I don’t think we’re set up for it. In my opinion, this is a generation of people very different from the greatest generation before them, which was a generation of people who didn’t buy anything until they had enough money to pay for it. They didn’t finance things and single-family marriages.
We’re talking about this Baby Boomer generation who’s a credit card generation. A lot of them have second families and don’t have the same resources or personal resources as a whole to care for themselves. It’s going to be interesting. The disparity in this generation is, in my opinion, very different. There’s going to be very low-wealth people, high-wealth and then the people in the middle. It’s going to be tough.
That’s not going to be the only generation that’s affected.
No. It’s going to be every generation coming after.
It’s going to be Generation X and Generation Y, Millennials who are going to have to take care of this generation. They are not necessarily prone to the same level of caregiving that the Baby Boomers have been. We’re talking about a digital generation. We’re talking about in a lot of ways a generation that’s very self-centered and self-focused. They’re the ones who are going to be the caregivers.
It goes back to those stats that you were talking about where the system is built off of family support, not from a doctor, any state or Federal system. You’re relying on family support to carry this where the system itself, the Federal system, is not set up to get to a neurologist to get a diagnosis. At least in San Diego, you’re talking three months. It’s not too bad but that’s also a frustration that a lot of families come across.
When we’re thinking about this silver tsunami and the overwhelming amount of people that are going to be impacted, we’re asking a lot from our families to step up to the plate and provide the care that our medical system isn’t providing. At some point, in my opinion, there’s going to be a point where these people are going to say, “We’ve had enough. You need to step up here. We need that extra support. What are you going to do?”
What’s the action step? What’s the call to action then for everyone to say, “How do we avoid the silver tsunami? How do we react? How do we respond and not react? If we do nothing, then we’re going to be reactionary. It’s not going to be effective.” The tagline of the show is, “How you prepare today determines success tomorrow.” We’re talking about a generational issue here. How do we prepare today to some level of whatever we define success as in handling this?
The key is going to be research. We have to get to a point where there are some better treatments and ways to help people deal with dementia and maybe slow down the progression or reduce the symptoms. As a country, we’ve not focused on Alzheimer’s research. In my lifetime, AIDS has gone from a terminal disease and a death sentence to something people live with.
As a country rightfully so, we threw a lot of money into research and focus and made that happen. It’s an amazing thing. We have been talking about needing more funding for Alzheimer’s research. I’ve been lobbying for it in Sacramento and DC for many years but it hasn’t increased. The amount of federal research dollars for Alzheimer’s is so small compared to other diseases. We need to focus on that research. There’s not going to be one silver bullet like there can’t be one silver bullet for cancer because there are many different types but we need to have something.
The healthcare system on the other side for the people who are already diagnosed needs to figure out the best way for us to spend our insurance, Medicare or Medi-Cal dollars. Is it best to provide some extra services at home? Is it best to provide some services for people to live in a community? There needs to be some reallocation and that’s beyond my expertise. We’ll be dealing with it. It’s very sad.
We all know how our lives changed when the pandemic happened. We all went from living 100,000 miles an hour to living in our homes for a short time. I will never forget talking to one of our families after that happened and her saying, “My life hasn’t changed because I’m a caregiver. I already can’t go out, go anywhere and do anything.” We have one support group participant who manages to participate in the support group virtually by sitting in her bathroom because that’s the only place her spouse won’t bother her and can get one hour to herself. These are anecdotal stories but these are people’s lives.
People are living that every day. Ten percent of the population in some way. As we close out, Jedburghs had to do three things every day to be successful. They had to be able to shoot, move and communicate. These are core foundational tasks. What are the three things that you do every day to set the conditions for success in your world?
I have my plan of what will happen but I also know that could go out the window quickly depending on who calls in that day. It’s having that open mind and being adaptable to
whatever situation comes across my phone or desk that day. Honestly, at times, it’s challenging but it’s also exciting because it lets me stretch my creativity and figure out what different types of support I can give that client for their unique situation that day. At certain points in the day, I got to find some humor in the day whether it’s related specifically to my job or not. There’s laughter. At the moment, it can alleviate a lot of the stress that comes along with some of this work.
Finding the humor, especially within dementia. We had a lot of negativity towards it but there are those moments where if you can find the humor and appreciate some of the absurdities that come out with it and be able to laugh at it, it takes the strength and the negativity away from this disease a lot. Number three, being able to go back after the day is done and set those personal boundaries for me and be able to have that well-rounded experience whether that’s spending time with my partner and getting that personal time in so I can unwind and relax and come back to the job ready to go and be more focused, have that personal time away from it. It is a luxury that a lot of our families don’t have but it also allows me to better support them too.
[bctt tweet=”Being able to laugh at some of the absurdities that come with dementia takes the strength and negativity away from this disease a lot.” via=”no”]
For me to feel successful, I want to know I’ve been able to offer a solution or solve a problem in some way to help somebody on a given day, whether that be one of our clients, the staff or anyone. I like to do that to be successful and allow some time for myself for something, whether that be going to the gym or reading a book. Allow some of that personal time because everything we do is serious. It’s a successful day if I’m able to sit down, have dinner with my family and have that family time. Those are the things we have. We have work, our personal health and our family. If I can do something in each one of those, it’s not shooting straight but it works for me.
Eugenia offers solutions to solve a problem, allow time for yourself and spend time with family, press and be adaptable, find some humor and find balance away from the job that allows you to reset and come back. We talk in a lot of our episodes about these characteristics that are used by Special Operations Command to develop, assess and recruit talent. I tie them into my work with any organization. I’m specifically talking about drive, resiliency, adaptability, humility, integrity, curiosity, team ability, effective intelligence and emotional strength. When we look to build organizations, we need people who demonstrate this character. To do that in your world, it certainly takes each one of those every single day to combat and fight this very difficult yet critical disease.
There’s one here that comes to my mind and it is emotional strength because although we need to demonstrate all those things and caregivers do, even patients and those who suffer from Alzheimer’s have to demonstrate much of this, it comes back to how emotionally strong you can be. You’re going to have to have some dark days that you’re going to have to go to sleep, wake up the next day and be ready to combat it again, fight for those good days, be on a high on those good days, don’t diminish them, then prepare yourself for the next difficult day and understand the challenge that faces you, your family and those who suffer from it. I do think about emotional strength. We need to think about and revere all those who are involved in some way in combating this disease.
That’s why it’s important for our team to have each other to rely on because other people out in the world don’t get the calls or understand. That’s why support groups are so important. Everybody walks into a support group with a situation that they think they’re the only ones dealing with it. They walk out with five other people saying they’ve dealt with the same thing. It makes you feel better.
When I was reading those nine traits that you’re talking about, effective intelligence was one that I resonated with honestly. I’m going to borrow that when I’m working with my clients. We talk about, “How do you build your support system as a care partner?” You’re going to be dealing with these “experts” in a lot of different ways. That’s social workers here at Alzheimer’s San Diego, a bunch of different healthcare providers and social workers in other organizations that you’re working with. You want to rely on that expertise to get that support as best as possible.
What I always tell my clients is, “You are the expert in the person that you are caring for. If you are afraid to not push back on something when you’re communicating with your support system that isn’t a right fit, you’re going to set yourself up for failure.” When I’m talking to my care partners, I tell them, “You know your person better than anyone else. A good support system is going to be able to adapt to the challenges and unique situations that you are facing.” Don’t be afraid to be that advocate and push back and say, “I understand that this medicine may be how this usually works but I’m seeing something that is not working at home worth so can we change it?” A good doctor or social worker should be able to come back and say, “Let’s try this.”
You have to be an advocate for your person and yourself as a care partner.
This has been eye-opening. I’ve learned so much in studying more about Alzheimer’s. I’m learning from you. I look forward to continuing to spread the word. We’ll be directing as much traffic as we can over to you. I wish you the best of success.
Thank you so much.
