Spotlight on Care: Alzheimer's Caregiving

Caregiver Resource Center

• UCI MIND • Season 1 • Episode 43

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In this episode, Diana Marquez-Siemers and Rachel Smyth from the Caregiver Resource Center (CRC) provide expert insights on the challenges and solutions for families caring for loved ones with dementia. Join Steve and Virginia as they learn about the CRC’s commitment to supporting caregivers. They also discuss the development of their personalized care plans to address each caregiver’s unique needs, offering coaching, training, and ongoing support to ensure quality care. With over 60% of caregivers in Southern California caring for someone with cognitive impairment, this episode highlights the importance of reaching out for help early in the caregiving journey as well as connecting with a supportive community.

From the Caregiver Resource Center OC:
The Caregiver Resource Center OC is a trusted partner for Orange County families, who are coping with the physical, emotional, and financial responsibilities of caregiving. By providing families with individualized supportive services, the Caregiver Resource Center stands apart as the only Orange County agency focusing exclusively on the needs of caregivers, who are coping with a loved one’s chronic illness. The Caregiver Resource Center provides family consultation, support groups, assessment and care planning, counseling, respite planning and community education. 

Since 1988, the Caregiver Resource Center has assisted thousands of families who care for an adult with a brain-impairing condition such as Alzheimer’s, stroke, Parkinson’s, Multiple Sclerosis, head injury, or Huntington’s disease, or for someone who is over the age of 60 and requires daily assistance. The Caregiver Resource Center works collaboratively in the community with other service providers and community providers in the aging and disability network. 

Services are free. For more information, call 800-543-8312 or 714-446-5030 or go to our website: www.caregiveroc.org

The materials or product were a result of a project funded by a contract with the California Department of Aging (CDA), as allocated by the Orange County Board of Supervisors and administered by the Office on Aging. Supporting data is available by contacting Caregiver Resource Center OC at 130 W. Bastanchury Road, Fullerton, CA 92835 (714) 446-5030. The conclusions and opinions expressed may not be those of the CDA and that the publication may not be based upon or inclusive of all raw data. Services are provided free of charge. Voluntary contributions are gratefully accepted, and no one is denied for inability to contribute. 


Steve:

From the University of California, Irvine, this is UCI MIND's, Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello, everybody. Welcome to another session of Spotlight on Care. We're very excited today because we have UCI MIND's, one of their major partners with us, the Caregiver Resource Center, and it's a statewide organization but we're going to be talking to two ladies today from Orange County location, which is in Fullerton. Let me introduce our two guests. We have Diana Marquez Siemers and she is the direct care clinical supervisor at the Caregiver Resource Center. She was hired in 2017 and will be working on eight years coming up pretty soon. She's been in the field delivering programs serving families, caregivers, disabled adults, and other adults for about 30 years. She's also a family caregiver herself, for her mother with Alzheimer's disease, so she's got her own personal experience to dwell on. Her mother was diagnosed two years ago and she's working at the agency and serving family caregivers and being a family caregiver gives her the help that she needs and allows her to operate in an even different better level. In addition to Diana, we have Rachel. So Rachel Smyth is a licensed clinical social worker and has worked with older adults and caregivers for nearly 10 years. Rachel works at the Caregiver Resource Center, and is their education coordinator and family consultant, which means that she works with caregivers all the time, as does Diana. Rachel holds a Master's degree in social work and a lot of the people that are at Caregiver Resource Center have social work degrees -many Masters- and she was currently awarded the Values and Action Recipient at Providence St. Jude Center. Rachel believes that each of us can make a difference in someone else's life and finds joy in serving others. And she's also a caregiver, or has been for her grandmother, who was diagnosed with vascular dementia 10 years ago. So welcome, ladies.

Rachel:

Thank you. Happy to be here. Oh, sorry, Diana, very happy to be here.

Diana:

Thanks having us here today, Steve.

Steve:

Well, as I told you, ladies, both times that we've met, so excited to find this entity because, you know, one of my focuses, of course is on caregivers, an underserved community. Anything you'd like to add, Virginia?

Virginia:

Well, I'm happy to be here with you two. And I'm going to find this very interesting. When my mom was first diagnosed with Alzheimer's, I just felt like I was in the dark. And I would have really loved to have had an organization like yours to go to. So I don't know much, but I'll listen a lot today.

Steve:

You do know a lot about caregiving. Okay, well, let's talk a little bit about a brief description of the organization and its mission.

Rachel:

Sure, absolutely. So I'll go ahead and talk about that, Steve. So Caregiver Resource Center, Orange County, we're a trusted partner for Orange County families who are coping with the physical, emotional, financial responsibilities that come along with caregiving. And we provide individualized supportive services to families, and we are the only Orange county agency that focuses exclusively on the needs of caregivers. We provide family consultation, we have support groups, assessment and care planning, counseling, respite planning, and community education. And our mission at the Caregiver Resource Center is to increase the quality of life of caregivers by helping families and communities master the challenges of caregiving. And we've been around since 1988, so this is our 36th year.

Steve:

Wow, and I just found them, a couple of years ago.

Rachel:

We get that a lot, that we're the best kept secret. But we don't want to be, we want to be the best, but not a secret.

Steve:

You need somebody with a marketing background. I don't know anybody like that.

Rachel:

We do.

Steve:

So are you aware of any other organizations like yours that operate in other states?

Diana:

Yes, there's, you know, each state like here in California, we have the California Department of Aging. And this Caregiver Resource Center is statewide: here in California, there are 11 and we are one of the 11. But in other states, I recommend that you look at your State Department of Aging website, and that will direct you to different providers or contractors, each state runs a little differently. Contacting the local area agency on aging, where you live will also provide you with the resources you need. So, states may have different names, they may call it aging and disability or many states also have many county--in fact there's 622 local area agencies on aging in the United States. So, each state does have some form of support to families who care for loved ones with a cognitive impairment or I was also researching there's a lot of programs also for children who are disabled. So, I encourage you to look up your State Department of Aging and the Area Agency on Aging.

Steve:

Great Diana, that's good to know. I mean, I think this is a special organization, but it's good to know that other states are doing similar kinds of things.

Rachel:

So recently, I was in the process of completing a Dementia Care Specialist certification. And in that training -which was from Johns Hopkins University- California is actually referenced as one of the states with the most comprehensive services for caregivers and Caregiver Resource Center statewide system was actually discussed during that training. So I thought that was really neat to see that California seems to be kind of leading the way in providing services to caregivers.

Virginia:

Oh, that's excellent.

Steve:

So this is an organization that isn't just dedicated to Alzheimer's or dementia patients, it has the ability to serve many other kinds of caregivers who are dealing with other kinds of diseases and so on with their loved ones. But, how many of your clients are dealing with dementia and Alzheimer's here in Southern California, Orange

Rachel:

Like you mentioned, we do serve all caregivers. So, County? there are many other chronic illnesses and diagnoses that our caregivers are providing care to their loved one. But for us, it's about 60% of our current family caregivers are caring for someone who has some type of cognitive impairment. And when I was looking into that, that's just who has already received an official diagnosis. So I'm sure that number is actually a bit higher, because a lot of people come to us feeling lost not knowing where to start, not having a diagnosis, but knowing that there's something different about their loved one. And they're just trying to navigate this complex medical system and figure out how to receive that diagnosis, so that they can provide the best type of care and really understand what's going on with their loved one. But it's about 60%. But I have a feeling it's actually a little bit higher than that.

Diana:

I totally agree, Rachel. In my personal experience, even though my mother was formally diagnosed two years ago, I suspect she had symptoms like maybe five, six years prior to the diagnosis and I did not put two and two together, it was a very gradual. But because I was a sibling who had more contact with her -more frequency- I picked up on the subtleties. And I would share that with my sisters. But it took many years before it got to the point where"Yeah, something's wrong with mom."

Steve:

And that is the case, way too often, unfortunately, finding out about this disease sooner, any form of dementia sooner is is really, especially with some of the changes or evolution that's going on with the care of this disease. What if you had to name a couple of major challenges that caregivers are facing in dealing with their loved ones with dementia? What would you say?

Diana:

Well, I would say financial challenges because the cost of caregiving is very high, and finding the right person to take care of your loved one, it's not easy. We went through many, many, many caregivers. And that was very frustrating and stressful, and also the stress of family not understanding the disease. I think for me, personally, that was very frustrating and treating mom as if nothing was wrong, and that compromised my mother's quality of life.

Virginia:

I think a lot of times the siblings will say: "She's just getting older. What do you expect?"

Diana:

I got that very often. And as well as: "She looks great, there's nothing wrong with her" was probably one of the things that-- it still happens, but not as often.

Steve:

Would you add anything to that, Rachel?

Rachel:

Oh yes, I literally came with a whole list of challenges.

Steve:

Well we only have a limited time.

Rachel:

I know, I know. I'll keep it short. For challenges that dementia caregivers are dealing with, oftentimes, there's a lot of behavioral issues that we're just not understanding that behavior is communication. Just that lack of information, training awareness of what the disease really entails and what can be expected-communication challenges, difficulty figuring out what long term care is going to look like- as Diana mentioned, financial stressors, and there's a lot of grief that's going on for a family caregiver whose loved one has dementia or a different cognitive issue. But

to me, I always think of it as:

it's hard enough to be a person, you know, and manage all the things that we all have to

manage:

our taxes, our car registration, our own doctor's appointments. And then a caregiver is doing that, but they're also living an entire second life for someone else. And so that in and of itself is just a huge challenge. It's time money, emotions, there's just so much that goes into this.

Steve:

That's great. I wanted to ask you what the keys are to caregiving from your experience and having been in this field a few years myself now, I keep remembering that the caregiver needs to remember they need to take care of themself first. Because well, not necessarily first, but they need to be aware of that. And would you agree with that, and what would you add that you think is something that you would tell a caregiver:"Hey, these are the things, these are the three things you need to worry about."

Diana:

You hit it right on the nail. Self care, and that's something it takes practice and skill because I'm still working on it. When you have no choice, in other words -when you're caring for someone- you are responsible for their welfare and safety. So taking a break, whether it be stepping outside or trying to prevent isolation is important, and connecting with others. Sometimes it may not be family, it could be your friends or other people, peers. So the key is really about taking care of your emotional needs, your physical needs, following up on your preventative care, not neglect your health, because it will compromise you in the end. I think I've experienced some of that because I neglected myself, so I'm back on track.

Steve:

Good for you, good for you. Rachel, is there anything you would say to the caregiver, you know, like a word or two that they need to keep up a mind when in their caregiving role?

Diana:

You cannot do it all, you are only one person. So it's important that we get comfortable with asking for help and accepting help, really what I would say.

Steve:

Very good. You know, one of the things that I was particularly impressed with when we first met a few years back was this whole idea of a care plan, because that comes up in conversation a lot when I've talked to caregivers. It's like:"Ah, what's the plan here? I wish I had something to work with or understand." So you guys do that. And I think it would be helpful if you talked about the steps in creating a care plan.

Rachel:

Sure. So a care plan is part of our program that we do with every family caregiver who's connected with us. And a care plan, to me is a living document in that it's constantly changing. It's being updated, it's being worked on and really designed to meet the caregivers needs and their unique caregiving situation. The way that we come up with this care plan is by doing a very comprehensive assessment with the family caregiver. The assessment that we do together, which can be in person, it can be in the caregivers home, it can be on Zoom, it can be by phone, it's really whatever works for the caregiver. We're really here to try to make things easier and less stressful, not more. I think caregivers have enough stress on their plates as it is. But the assessment that we do that helps us develop this care plan is comprised of a number of different areas. One of which is talking about what kind of direct care they're providing with the activities of daily living and medical tasks, health care utilization, memory, behavioral issues, technology, we're talking about care plans related to health, legal financial issues, we talked about placement. We're also really emphasizing a conversation about self care. What does that look like for the caregiver? How are they taking care of themselves, their own health care utilization. We also talked about caregiver burden, depression, we explore other ways of coping that maybe aren't the most healthy, that can be hard for caregivers to talk about, like substance use and suicidality, we talk about loneliness, we talk about all these different areas of a caregivers life, so that we can then collaborate with that caregiver to figure out what it is that they're really needing support with. And that's how we develop that care plan. And sometimes we might have an idea of what we think the care plan should be right? But the caregiver is the expert. And so we work very collaboratively with them to determine what it is they need. And then we break down that care plan into a goal, but then also steps to get to that goal. So that's really how we develop it and what it looks like. And then Diana, I'm not sure if there's anything else that you'd like to add about the care plan.

Diana:

Basically, the assessment she just talked about, we're looking at the big picture, we're looking at all the different components in our comprehensive assessment tool. It's the foundation for we call it the Caregiver Action Plan. So assessment is where we look at where the caregiver is at, at that point in time. And then we collapse what the concerns are, what are the interventions? What is the goal? So it's three different things, but it's client centered. Wherever they're at in their journey, that's where we start.

Virginia:

So they probably don't know, many times what the roadblocks are going to be. And their challenges, because it's new to them. It was to me, right? And I couldn't have done a care plan on my own. That's for sure.

Steve:

Yeah, I think it sounds incredibly comprehensive. I heard you say that before, but now it's on the air and we understand it.

Diana:

Right it is very comprehensive.

Steve:

One of the things you mentioned is updating. So this plan gets created, but what's the frequency of contact or, you know, the execution process?

Rachel:

Sure. So at an absolute minimum, we're doing a reassessment of that original meeting with our caregivers every six months at an absolute minimum, but there is so much contact in between. And like I mentioned, this is a living document and as goals get accomplished, as we make progress, that gets changed and so it really depends on the needs of of the caregiver. Some people, it's you know, they're managing okay right now and so they don't really necessarily need more than every six months. Other caregivers, as we all know, with caregiving, there's peaks and valleys and crises come up and things get very intense. And so in those times, we might be having multiple contacts in a week with a caregiver. And so it really depends on the situation and what their needs are.

Steve:

So there's no limit.

Rachel:

There's no limit. And people can join as many groups as they want, they can participate in as many classes as they want. So really, they get familiar with a lot of our team members. They have a specific family consultant, who is a Master's level social worker, who's their go to person, but they also have their support group facilitator, that person who does the classes. And so they get really connected with a lot of support.

Steve:

That's terrific, I hope you are understanding how valuable this organization is. How have you seen a care plan help a caregiver on a practical level, and maybe on an emotional level?

Diana:

I can share one client that I had followed for a little while. He's no longer with us, his partner passed, but his example would be, you know, a male caring for his best friend, a female, she was much older. But they were both single, there was no children involved. It was just them two. They had family out of the country. So he came to us through a friend who had heard about us and his partner hadn't had any formal diagnosis. But he was just a little frustrated that she wasn't listening to him. And she kept leaving the stove on and sometimes she would just, you know, leave the house and neighbors would bring her home. And they lived in a very cohesive complex. So his care plan was essentially first educating and talking about safety. That's a hallmark. If there's any safety concerns, that's what we talk about right away even in a new client, we may call them very often, or check in to make sure that there's preventative measures to avoid you know, mishaps. So the practical advice was: "Okay, let me teach you about this and connect with the doctor, you need to make an appointment..." So I literally had to like:"Okay, do this first, do this second, when's the appointment, share your concerns..." I was able to get a medical ID bracelet, indicating that she has some tendencies of wandering and a phone number. So that was very practical. And then emotional support, he was very lonely, because he was finding himself spending more time with her and he became isolated. So the next step was okay, let's look into a daycare center. And I helped coordinate-- that was case management. In other words, I taught him what exists and what possibly would help him and his partner, so she can get stimulated; she was just bored, he didn't know how to manage her. So that transpired, he made the appointment, things fell into place. She started attending daycare, and that allowed him time to meet up with friends and pockets of time where he can just not be around her because he said she was driving him crazy.

Steve:

Did he ever tell you how he felt as a result of the help?

Diana:

Well, he was very grateful, because I saw him at a retreat that we had sponsored and he was very grateful. And he said, that's the first time that he's ever met so many caregivers in his life, he thought he was alone. So I think it opened up a paradigm for him that he was not alone and he was very grateful. It sounds very simple, but he just didn't know.

Steve:

Rachel? Do you have a story to tell? I have a feeling you might.

Rachel:

Well I have many, many stories. I mean, it's been such an incredible place to be a part of, both as someone who's serving caregivers, but also in a caregiving role. But less of a specific story, but the way that a care plan helps a caregiver in more practical ways, to me, is I mean, I've never spoken with a caregiver who hasn't experienced stress or isn't experiencing stress, feeling overwhelmed, feeling just lost, not knowing what to do. And when you're really stressed out, and you're just under this immense pressure. It's hard to remember things, it's hard to think clearly, it's hard to focus. And so having something that is concrete that you can look at, refer to when you're feeling like: "Okay, what am I supposed to be doing? What kind of help am I trying to get in place?" Having something that's simple and written down that you can look at can be a really helpful tool. And then not only being able to look at the goal, but we also break it down into what

steps. You know if:

"Okay, start to explore Medi-cal. Well, what is that going to look like? Step one, look at this website, step two..." and so we really break it down, but more so the emotional benefits of this care plan. Our care plan focuses on the caregiver. And just even that emotional support can be a literal lifesaver for our caregivers. And I think we all know that depression and anxiety is extremely high amongst caregivers. And so it really can be a literal lifesaver, and everything is always about our loved one. And that is really, really important. And I'm no mathematician, but if I understand correctly, without a caregiver, there is no caregiving. So it's so important that the caregiver does prioritize themselves and their well being. And oftentimes, I hear that just knowing that we exist that we're there when someone needs something or they know: "Oh I can call Rachel, I can call Diana. I can call my support group," is really, really meaningful. And not everyone understands what it's like to be a caregiver. So finding somewhere that you can share and feel understood, feel seen, be heard, is really, really invaluable.

Steve:

And those were great stories. It just proves out the point, I think you're all dealing with this idea of caregivers being alone. Alone on a practical level, alone on an emotional level, and a sense that there is no one out there. And I hear the same thing, support groups, one on one conversations. I think we're getting kind of close to time. Okay, so I'm going to ask you guys though, a couple of other questions. When should caregivers contact the Caregiver Resource Center? Is it covered by sooner rather than later?

Diana:

For me, the sooner the better. Even if you're not a caregiver yet, or you just want to make an inquiry or you see:"Hmm, I am observing some changes with my in-laws or my grandparents. And I'm wondering what kind of resources are available." You know, it's never too early or never too late, because people feel that it's too late to call and we get

those calls:

"Oh, I've been doing this for 25 years." And

they say:

"Oh, I wish I would have called." But that's okay. So we'll start right there, and then move forward with supporting them through their journey. So as soon as possible is preferable, because then you will have the tools.

Steve:

I think that's true, not only of the caregiver responsibility, but just the idea of identifying this terrible disease and knowing about what's coming is so, so valuable. And we hear more and more, get in, get the evaluation, build the care plan, you will have a chance, and really for the fear of the loved one, they're trying to avoid it. And this is an opportunity for them. Do you guys do anything that deals directly with the loved one in terms of encouraging them in the process?

Diana:

Our client is a caregiver, but we're mindful of who their loved one is and what their needs are, what their deficits are. So in a sense, when we support the caregiver, the care receiver benefits because you can technically even prevent abuse, if you're frustrated, or you know, you're at your wit's end. It's the tools that you need to have good caregiving and preventing abuse and having quality caregiving. And the more that the caregiver is empowered, the better the care receiver will be in their long term care.

Steve:

So you're even able to kind of help the caregiver understand how to help the care receiver. I never heard that term, how the value of doctor's visits or evaluations are part of the process. So that's some of the coaching you've given them.

Diana:

Exactly.

Steve:

Okay. I think there's a lot of caregivers who are like, like you said, Diana, I know something's going wrong. I don't know how to start, I don't know where to go. That's a time to call Caregiver Resource Center, because they'll help you figure that out.

Diana:

Yes, absolutely.

Steve:

Okay, well, any final thoughts that you might have about the whole idea of caregiving or caregivers or what you do as an organization?

Diana:

Well, the final thought that I would like to leave to our listeners is that, you are not alone. It feels like you are, but you're not. Because caregiving is a unique; looking for your village, like who are your village, seek out people, you know, who bring value to your life and to your role and, and support. It can be neighbors friends, but your village is very important. We are part of their village. So in many cases, we are the only people that support them through their journey and capitalize on support groups and classes, because that's also very therapeutic. Not only do you learn, but you connect. And that's how you get valued.

Steve:

Oh, I couldn't agree more. Rachel, did you have anything you wanted to add to that wonderful comment?

Rachel:

Yes, hard to follow up after Diana. But I just want those who are listening to know that, I mean, to me you as a caregiver or doing the most selfless thing that someone can do, and that's caring for someone else who can't care for themselves. Caregiving is often very thankless, either our loved one maybe doesn't want our help. And so they're not very, you know, expressive of gratitude. Or maybe they're not capable of expressing that gratitude. And this is just a really difficult journey. And so those difficulties of caregiving can make it feel like every day is a challenge. But a big part of why I'm here is I really want everyone to know that caregiving is also one of the most beautiful and sacred spaces that you can hold with another person. But it's really hard to see that beauty and the joy of it if we're not taking care of ourselves. If we're not taking time to find our own joy, celebrating each and every win no matter how small they are, resting and recharging and accepting that caregiving includes caring for ourselves.

Steve:

Aren't these ladies amazing?

Virginia:

I have somebody I'm going to give this recording to real fast.

Diana:

Yes, please do.

Steve:

If some of our listeners were looking for a contact, just Google Caregiver Resource Center, or because they may not be just in Orange County, what would you recommend in terms of contact?

Rachel:

Sure, people call us from outside the county all the time. And that's okay. We'll just get their information and give them the correct Caregiver Resource Center's information. But if you're are looking to contact us, you can go onto our website, www.caregiveroc.org. Or you can call us, our phone number is 800-543-8312. We always have a social worker assigned to the phones, so that you'll be able to connect with someone. Whether you're looking for long term support and really getting engaged with our program, or if you're just calling looking for a list of adult day programs. Whatever it is, I always say just call us and we're the best place to start. And then we'll help you get connected to the other areas that you're looking for.

Steve:

Terrific. I think that last line was exactly perfect.

This is the best place to start:

Caregiver Resource Center. Thank you ladies so much.

Virginia:

Thank you so much.

Steve:

We really appreciate it.

Diana:

Thank you.

Rachel:

Thank you both. The materials or product were a result of a project funded by a contract with the California Department of Aging, as allocated by the Orange County Board of Supervisors and administered by the Office on aging. Supporting data is available by contacting Caregiver Resource Center OC at 130 West Best and Terry Road in Fullerton, 714-446-5030, and the conclusions and opinions expressed may not be those of the CDA and that the publication may not be based upon or inclusive of all raw data. Services are provided free of charge voluntary contributions are gratefully accepted and no one is denied for inability to contribute.

Steve:

Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment, should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu

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Steve O'Leary

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Virginia Naeve

Co-host