S1: It's time for Midday Edition on KPBS. On today's show , we're talking about treatment and caregiving for those with Alzheimer's disease and dementia. I'm Andrew Bracken in for Jade Hindman. Here's to conversations that keep you informed , inspired , and make you think. The number of people living with Alzheimer's and related dementias in San Diego is expected to pass 115,000 in the next six years. And new treatments for Alzheimer's and dementia are bringing hope to patients. But the medicines come with limitations.
S2: It is. It is a brave new world now and we with it comes , you know , risk and benefits.
S1: Plus what it's like to be a caregiver of someone with Alzheimer's. We talk about the challenges that come with it and provide resources. That's all ahead on Midday Edition. San Diego was among the top ten US counties with the highest number of Alzheimer's cases. That's according to the Alzheimer's Association. Nearly 59,000 people over 65 are diagnosed with the disease in San Diego County. It's now the third leading cause of death for adults over 80 as well. But there are some new medications on the market bringing hope to those Alzheimer's patients. Joining me now to talk more about it is Doctor Jose Soria , neurologist and director of clinical research at the Neuron Clinic in Chula Vista. He also treats patients with dementia at UC San Diego. Doctor Cirillo , welcome. Hi.
S2: Hi. Thank you for having me. And thank you for bringing attention to this very important topic.
S1: Doctor Ian Neil is also here with us. He's a geriatrician and consultant for UC San Diego's Brain Health and Memory Disorders program , where he's also a professor. Doctor Neil , welcome to you.
S3: Thank you very much for having me. It's a pleasure speaking with you all today.
S1: So , Doctor Saria , let's start our conversation with some definitions. Can you walk us through the difference between dementia and Alzheimer's disease ? Yes.
S2: And thank you for that question. And as it does come up frequently in clinic in our outpatient clinics. Dementia refers to a more general term describing a slow and progressive changes in and cognition , declining thinking and memory that is subsequently accompanied by functional changes. Functional decline as a result of the cognitive changes.
S1: Doctor Neil , many of us , you know , have heard of these conditions Alzheimer's and dementia , but we may not know the early signs.
S3: Um , and geriatrics were always focused on this key word of function. Um , and what defines a disease , especially a disease such as dementia , is specifically what Doctor Soria mentioned , a loss of function. And so what we're looking for as early signs is change , change from baseline. We all have issues with memories from day to day. You know , there's times where we always forget things. So , you know , forgetting somebody's name here and there , for instance , isn't a marker that , oh , now we need to get cognition assessed. It's more if there is a change , if we're suddenly having trouble with remembering information that we used to not be able to have trouble , or if that issue with memory is starting to affect our function , for instance , if we're having more trouble with the complex finance management or , you know , logging in to bank accounts or making missing payments on cheques or forgetting to take medications on a regular basis , things like that are more of a kind of sign that maybe something is amiss in terms of cognition. Uh , there can be earlier signs than that , but again , those tend to be more insidious. And really what we're looking for is this change , a change from baseline.
S1: So I mean , I mean , one thing I think about is , you know , sometimes you might forget where your keys are , forget where you put your car keys , where your wallet is. Is that something that may not be as is , you know , much to worry about compared to some of these , a little bit more complicated tasks that you're describing. Absolutely.
S3: Absolutely. It could be a it could be a problem. It could not be a problem. You know , back in medical school , they used to teach us that , you know , if we forget to turn the stove off. I had a professor tell me that was the sign that , you know , clearly there's something wrong that's beyond the norm. Then I had a kid , and I forgot to turn the stove off twice in the first week of life just because I was exhausted. Memory is something that can be affected by many different factors in our life. So while misplacing of an item could be an early sign of cognitive decline , if it's something we do here and there , then it's not necessarily a problem. And , you know , the pandemic , for instance , showed us this with misplacing as well. You know , it could be a sign in that , you know , how many times do we put our glasses down and somebody tells us , hey , you forgot your glasses , but if there's nobody around to tell you , you forgot your glasses , and suddenly you're at the eye doctor for the third time in a week , replacing your glasses because you keep losing them. Now , that may be a problem. So really , what we're looking for is that there's a change and that that change is affecting our function in life.
S1: So the number of people living with Alzheimer's and related dementias in San Diego is expected to pass 115,000 in the next six years.
S3: You know , number one is that San Diego is a large retirement destination. Um , and so we do have a large population of patients over the age of 60. And age is the biggest risk factor for dementia. Um , and so if we have. Of higher age adults living here. We're going to have a higher incidence of dementia here. Part of it , too , I think , is that San Diego is really had a huge focus on early detection. I'm part of a group called the San Diego Alzheimer's Project , and we're a group of physicians and other specialists in memory disorders that meet on a quarterly basis to come up with clinical guidelines as well as develop educational programs to try to help teach primary care physicians in the community how to diagnose dementia , how to detect it , how to screen for it. And we hope that some of it is that because of these educational programs we've put together , that we are seeing an increased screening and detection rate in San Diego. But we've also seen this nationally as well , through things such as the Medicare annual wellness visit , which requires some form of cognitive screening to be done as part of that visit. These focuses on detection are going to increase our rates of Alzheimer's disease , not because there's more disease , but just because we're actually looking for it.
S1: Doctor Soraya , I want to turn our attention now to treatment and some of these new medications.
S2: The medication was approved based on the properties and the evidence on a phase three trial , and a study showing that the medication would remove amyloid from the brain. But it particularly the main evidence and data , is that it would slow cognitive decline and functional decline. Uh , the medication was used in this study and approved for use in early , very early stages of the Alzheimer's disease. Uh , thinking how it changes the landscape , how does it change the field ? I think it elevates the attention that is brought to to the field. It becomes very important , uh , to be able to have early detection , diagnosis and confirmation of the disease.
S1:
S2: So these are , uh , patients who have , uh , changes in their thinking that is noticed by them and or family members , but they have preserved activities of daily living. They're mostly independent and continue to be independent. It is also indicated for patients in a in what it's called a mild dementia stage of the disease process , which is those patients who have cognitive changes and they are beginning to have the decline in their independence , in their activities of daily living. Uh , for example , is our patients who can , uh , have difficulty managing their finances , medications , medical appointments , but they're still in a , in an early stage of the disease process.
S1: And Doctor Neil , I want to turn to you now. I mean , there has been some skepticism about these medications.
S3: They've been discussed for over a decade now. Um , the first drug in this class , uh , sought FDA approval and was rejected from it back in 2012. And there were actually two drugs that were rejected by the FDA for showing lack of benefit. But what we saw is that two drugs then sought then sought approval and were approved first aducanumab and now lecanemab. Um , but but there's been question there of , you know , how different are they from these other ones that were rejected. And then the other thing is , what are the risks ? And there are significant risks that are associated with this medication. Um , there is a high incidence of it causing something called aria amyloid related imaging abnormalities , which can be edema or hemorrhaging into the brain. And Aria can be asymptomatic , but it also can cause symptoms. And these can be significant and debilitating symptoms , you know , and the most extreme cases , there have been some cases of death. There have been some cases of patients with permanent stroke like symptoms. But it can also cause more mild symptoms such as numbness or , uh , headaches or vision changes , etc.. The question then becomes , well , what are we getting for that ? It's what we call statistically but not clinically significant. So the improvement. While it showed a discrepancy in the curves didn't actually show necessarily. Uh , you can put your finger on it. This is what this drug did for this patient. So from the geriatrician perspective , the risk benefit ratio is tenuous at best. And so that's why we want to be really careful about who we prescribe this to. So , you know , it provides hope. But we also don't want to provide false hope with this drug. Right.
S1: Right. And on that sort of weighing the risks and benefits , I mean , aside from drugs , what other treatment options are there for patients today ? Absolutely.
S3: And this is why I think , you know , early detection is so important. You know , the earlier that we can intervene on brain health , the better our brain tends to be. And there are many things that have been found to help improve brain health and to reduce rates of developing things such as dementia. Um , the biggest are physical exercise , staying mentally active and engaged in things such as hobbies , um , as well as making sure that we're maintaining good physical health , you know , eating right , seeing our doctors regularly , not taking too many medications that have cognitive side effects , um , making sure that the medications that we're on are adequately treating our cardiovascular and cerebrovascular risk. And these things have pretty profound impacts in terms of our functional improvements over time.
S1: I mean , we hear a lot about , you know , sort of like brain training games and apps and all that stuff.
S3: Yeah. Um , the yeah , the evidence tends to say that if you do those brain games over and over again , you'll do better at them as time goes by. But you won't think better as a result because they're just too simplistic of tasks. So it's better than nothing in keeping your mind stimulated. But I wouldn't put all your eggs in that basket. I'd be interested to hear Doctor Sarah's opinion on that as well.
S2: Yes , and thank you , Doctor Neil. Uh , with regards to to Brain Games , uh , there is uh , as there's some evidence supporting the use of brain games and the effects and benefits they can have while you're using them. So there the patient , uh , does respond to the brain games. There's an improvement as the patient is using the this exercises. However , it doesn't always generalize to the time after they stop using the brain games. I can tell you I wanted to , uh , to to highlight and I , I agree with everything that has been said. Uh , so far , I think we've we've come a long way. It is , uh , it is a brave new world now. And we with it comes , uh , you know , risk and benefits. So there's definitely a level of expertise that will be required to make sure that this is , uh , the medications are used properly and safely in the population.
S1: Doctor Soria was curious.
S2: And it likely it relates to , uh , something that was mentioned by doctor O'Neill , which is that there is an increased attention to early diagnoses. There's an increased attention to the early symptoms of Alzheimer's disease , dementia. And so patients are effectively reporting symptoms to primary care doctors , uh , their physician , the physician that they know best. And they are now starting to be effectively referred to a specialty , uh , clinics and neurology clinics. And so we are seeing it more , uh , but likely as a result of the awareness , increase awareness of early symptoms and the need for early detection and confirmation.
S1: And on that topic of awareness and education , um , I want to talk about racial disparities in Alzheimer's diagnosis and treatment. For example , Latinos are one and a half times more likely to develop Alzheimer's disease. Can you break that down for us , doctor ? Syria.
S2: Um , there is , uh , evidence and information supporting the idea of higher cardiovascular risk factors. So other medical conditions and risk factors for dementia , uh , the patients who are or Latino origin have and the we don't know exactly , uh , the extent to which , uh , this additional medical conditions are driving the increased diagnosis in the population. But we do know that it's something we have to , uh , um , consider when we're thinking about , uh , treatment and disease modification so that in addition to are more traditional approach to dementia , we also focus on interventions for the cardiovascular risk factor. So management of the blood pressure the cholesterol and other other. Cardiovascular risk factors that are going to be very important , particularly in this population.
S1: Doctor Neal , later this hour , we'll be talking about what it's like for caregivers and loved ones of those living with dementia. What advice do you have for caregivers and the challenges they face on a daily basis ? Absolutely.
S3: It's , uh , uh , a highly important topic. Um , you know , one of the things that's associated with the greatest and most rapid loss of function , loss of independence is caregiver stress and burnout. Um , and so the most important thing that I tell caregivers is to talk to your doctor about finding ways in which to offset the amount of time that you are spending caregiving , so that that way you can take some time for yourself , not out of selfishness , but it's that whole physician heal thyself mindset of you can't care for others if you're not caring for yourself. Um , and so there are lots of resources that exist to try to help with that. And one thing that I always strive to try to , uh , encourage is to look into caregiver support groups.
S1: Well , thanks for that. Yeah. And we'll be hearing more about , you know , some of those support groups. We'll also have a link to some of those resources on our website at KPBS. Org. I've been speaking with Doctor Ian Neil. He's a geriatrician and consultant for UC San Diego's Brain Health and Memory Disorders program. Doctor Neil , thanks for being here today.
S3: Thank you so much. It's been really a pleasure talking with you.
S1: And I've also been speaking with Doctor Jose Soria. He's a neurologist and director of clinical research at the Neuron Clinic in Chula Vista. Thank you , Doctor Saria.
S2: Thank you for having me. It's a pleasure.
S1: When we come back , we talk more about new Alzheimer's medications and their limitations.
S4: Well , at first I was very happy because a lot of people will benefit from it. But unfortunately , when it came to my parents who were diagnosed when they were in the moderate stage , uh , couldn't benefit from it.
S1: That's ahead on Midday Edition. Welcome back to KPBS midday Edition. I'm Andrew Bracken in for Jade Hindman. We just heard from two doctors about new medication that's changing how we treat Alzheimer's disease. Now we turn to concerns over accessibility of those medicines. We'll also talk about what it's like to be a caregiver for someone with dementia. Joining me now is KPBS health reporter Heidi DeMarco. Hey , Heidi.
S5: Hi , Andrew.
S1: And Patricia Hernandez is also here. She's a full time caregiver for her mother , Virginia , who has dementia. And they live in Claremont. Patricia , welcome to you.
S4: Thank you.
S1: Also , Shannon Patel is here. She's a licensed clinical social worker with the George G. Glennon Alzheimer's Family Center. Shannon , welcome.
S6: Thank you so much.
S1: So , Heidi , we just heard from these two doctors about some recent Alzheimer's medications. But as you report there's concerns around accessibility here.
S5: So many patients who might otherwise benefit from the drug will simply be diagnosed too late. Latinos and blacks , for example , tend to be diagnosed at later stages of the disease , so that automatically excludes them from the use of la combi because it was designed and approved to treat early stage Alzheimer's. Right.
S1: Right. And I think another factor here is the cost. I mean , the drug is priced at $26,500 a year. That's a lot of money.
S5: Medicare is crucial for patients hoping to afford Lacombe , especially with that high price tag. Even though Medicare is picking up the majority of the bill , many patients are still responsible for 20%. So that means that they still have to pay more than $5,000 annually in out-of-pocket cost. And that's still a significant cost , especially for Black and Latino Medicare recipients. About 25% are reported to live on incomes near the federal poverty level. Here in San Diego County , more than one third of Black and Latino residents report to live on incomes about $28,000 a year or less.
S1: And cost isn't even the only barrier to medication.
S5: Alzheimer's advocates I spoke with say that transportation is also another barrier. The drug is given through IV infusions every two weeks at an infusion center. So for some people , getting to and from medical appointments is already difficult. Cost of transportation or reliance on other people can also pose an issue.
S1: So , Patricia , you know , as a caregiver for someone with dementia , what was your reaction to the FDA approval of this new medication ? Lacombe.
S4: But unfortunately , when it came to my parents who were diagnosed when they were in the moderate stage , uh , couldn't benefit from it because their , their disease , of course , had already progressed right.
S1: So it wouldn't apply to them. It was only for people in those earlier stages. Right.
S4: Right. So it's a bittersweet thing.
S1: Yes , I understand , I mean , I want to know more about your mom , Virginia.
S4: I'd never seen bills in in different colors before. And now I know that they come in different colors when they aren't being paid. So I urged her to go to the doctor and I would go with her. And when I did have that meeting with the doctor , I found out that she had already been diagnosed , and it had been many months from the time that she had been originally diagnosed. So when we went together , that's the first time that I knew that well. I was informed that there was medication that she should be taking. So when I intervened , she started taking that medication regularly , but she had been without it for many months already.
S1: I mean , earlier we talked to a couple of doctors about some of the , you know , risks and benefits of the medications. What was that conversation like , you know , with your mom's doctors about the medication at that time ? Once she was diagnosed.
S4: I didn't hear about too much about the risks that were involved. Um , and I didn't even hear too much about the benefits either. All I was told was that this is the medication that that health care provider was allowed to give. And , um , she would take it every day. And that was about it.
S1: I mean , do you do you wish you had opportunities for more support during that time , during those early times of kind of coming to terms with.
S4: Um , the health care provider , uh , they had a social worker come in for me about things that I thought were going to be helpful. And it was a very brief meeting with that social worker , and she handed me a couple of brochures about meetings in the community. And within ten minutes , that was the end of our conversation. Um , when I did go to one of the seminars that were offered to inform me about what to expect about Alzheimer's and the symptoms , it was , uh , things that I already read about , and they were very common sense things. Uh , and they were very general things like your your loved 1st May wander. Um , which is something I already knew , but yet I wasn't informed of any , uh , things to help me with my dad , because my dad also had a diagnosis of Alzheimer's. So I found that the resources out on my own.
S1: Oh , so , I mean , your you and your mother , you're. She was diagnosed with dementia when your father was also suffering from Alzheimer's.
S4: My mom fortunately progressed at a very slow rate. But my dad , once he was diagnosed , um , and unfortunately came very fast.
S1: I see , I want to bring in Shannon Patel now. She's a licensed clinical social worker with the George G. Gleaner Alzheimer's Family Center. Shannon , you run several resource groups for caregivers like Patricia and those living with dementia.
S6: I feel like it is a little bit of a similar situation of what Patricia has experienced with a lot of the family caregivers that are coming to our centers , their loved ones are typically in that moderate stage or do not have a diagnosis of Alzheimer's. They may have a different type of dementia that won't benefit from these new drugs available. So it is a little bit of that , um , bittersweet feeling for for the community right now that we hope that other types of drugs will come out and be able to help some of these other dementia subtypes , or help some of the later stages of Alzheimer's and other types of dementia , so that everyone can kind of feel that sense of of hope that that this new drug has given to this certain but quite small , um , population overall.
S1:
S6: Um , some of our families are , um , spouses that are still caring for their loved one at home. They're not quite at the point where they need or want to be in a residential type care facility , but they aren't safe to be at home alone anymore. For , um , we also have a lot of the sandwich generation , these caregivers who have a young children at home , high school students , maybe they're going off to college and their parents living with them , and they're still trying to hold down full time jobs. So having access to these caregiver supports , but also the adult day programs that our organization offers for people with dementia , gives them the ability to continue to try to manage all these different components of their life while keeping their loved one with dementia safe and healthy.
S1: And I want to hear your thoughts , you know , on what Patricia shared with us about about her situation.
S6: I will say that one of my favorite parts about my job at the Glen center is I do get a long , a long term relationship with the family caregivers that we serve. So part of our program is actually , you know , calling and checking in on the family caregivers. We offer not only support groups and education classes , but also creative gatherings called , you know , Glen or Care Connect , where caregivers can come just meet each other and create support systems on their own , or caregiver wellness retreats , where we bring together caregivers from all of our different centers and have a variety of different , you know , resource fairs , motivational speakers , and education opportunities all rolled into one day. So we are trying to really push the mold of what we can do to support family caregivers who are caring for someone with dementia beyond just the traditional , um , support systems that maybe have existed in the past. And we're also trying to create that longer relationship so that families don't feel like they get those ten minutes of face time , and then they're kind of left to their own devices.
S1: And it's not just as easy as asking for help. Also , there's resources involved. I mean , not not everyone can afford some of these programs. Right.
S6: Right. Of course , you know , programs do come at a cost to many families. Some of them are connected to different resources , such as the Veterans Administration or a Pace program , where they might get some of that care covered. But other families are trying to piece together the resources that , you know , Medicare or Medicaid , Medi-Cal might be providing them while still trying to make ends meet in other areas of their life.
S1: And we'll talk more about what resources may be available for caregivers after the break. Coming up , we hear more about some of the challenges caregivers face , along with resources to help.
S6: We always try to remind our caregivers , you know we can't pour from an empty cup , so caring for yourself is also caring for your loved one with dementia.
S1: You can also find links to resources for caregivers at our website , KPBS. Org. You're listening to KPBS Midday Edition. Welcome back to KPBS midday Edition. I'm Andrew Bracken in for Jade Hindman. We continue our discussion now on new Alzheimer's drugs and the caregiver experience. Two and three caregivers have difficulty finding resources and support for their needs , according to a march report by the Alzheimer's Association. Joining me is Patricia Hernandez , the sole caregiver for her mother , Virginia , who's living with dementia. And KPBS health reporter Heidi DeMarco is also here with us. Also , Shannon Patel is here. She's a licensed clinical social worker with the George G. Glennon Alzheimer's Family Center. Heidi , you've been reporting on Alzheimer's and dementia for some time now. I want to talk now about trends we're seeing around education and awareness.
S5: Alzheimer's organizations are focusing on gaining access to different communities. For example , in the Latino communities are trying to teach them about the disease in a relatable manner. So they're using traditional cultural celebrations and adding an educational component to it. So the meaning of awareness , importance of early detection , they want to promote these conversations about the disease at home.
S1: And what about questions of , you know , stigma or hesitancy to get , you know , to seek diagnosis and to kind of get health care for these conditions ? Or are you seeing a change there ? Sure.
S5: You know , many people mistake it for a natural part of aging. And so they avoid , you know , avoid the diagnosis altogether. But in the Latino community , particularly among men , there is a reluctance to admit that they need help. And so there's an issue there. But also in the Latino community , there is this deep respect for your elders. So it's trying to talk about the issue without disrespecting them. And , you know , talking about the disease and making sure that they understand it's a disease and not a mental health issue. So there's some sort of confusion there as well.
S1:
S4: So I found out about my dad's diagnosis the way the same way I did with my mom. So he had been diagnosed. I didn't know about it , and when I noticed he started to have symptoms , we went to the doctor together. From then on , I took care of him. Um , but yeah , I think that he may may have been reluctant to tell me because he was embarrassed. And later on , I did find some things that he wrote in a journal , and he wrote that he just wanted his memory back and he didn't feel smart. Um , and also my mom , too. So my mom speaks Spanish. And at a time she was able to remember that she had diagnosis. She would tell people that she had dementia. And in Spanish , uh , she would say she had dementia , which translates in Spanish is I'm the dumb one. So she would laugh about it. But I think inside she did. There was some shame there. Yeah. She would also say sometimes that she thought she was going crazy because she forgot something. And I said , no , mom , don't worry , we all were all forgetful.
S1: Shannon , is that is that a pretty common experience ? You see.
S6: That ? I do think we still see a lot of that , um , fear of the unknown. And we have caregivers and even people with dementia who are hesitant to put a label on what they're experiencing because of this fear of what's to come next. But I do agree with Heidi that we are seeing shifts in the positive direction of a reduction of stigma , especially as younger people are being diagnosed. I mean , our age range is now from the 50s to over 100 years old. We have a 50 year age span in some of our centers. And so with the younger populations , I think they've been brought up to , um , address some mental health concerns more so than previous generations and be more willing to ask for help. So I do think that that is paving the way a bit for , um , more acceptance in asking for help early , especially as we continue to educate people of all the benefits that you can receive with getting access to medications , the earlier diagnosis , the more likely a medication could potentially help you.
S1:
S6: It's going to take 2 or 3 , four attempts of talking to someone about your concerns in a loving way before something might actually happen. As far as them being willing to go to an appointment or accept help. And I love how Patricia said that she went along with her loved ones. That's also an important step of trying to help , um , really get to understand what's going on behind the curtain. A lot of people with dementia are able to hide what's going on for a long time. So until we're able to open that curtain , we don't know how to help them fully.
S1: So , Patricia , I mean , what's what's your experience like as a caregiver ? You said , you know , your full time caregiver for your mom.
S4: As far as fixing her breakfast , um , making sure she eats it , uh , she has problems swallowing , and sometimes she doesn't want to finish her food , so I have to literally feed her. So I have to make sure she gets enough calories in. And then if I have to clean the house. And sometimes , actually , most days out of the week , I take her to the Alzheimer's Association , where they have different activities there. And there's also another senior center at the Salvation Army , and they have a karaoke. So I always try to make sure , uh , I take my mom to some type of music oriented or oriented activity.
S1: And is music really something that still connects with ? She really connects with and helps.
S4: It's amazing. She can remember words to songs , but sometimes she can't remember who I am. So it's it's very important. She also likes to dance , so that's another reason I take her to these , uh , these little concerts , many concerts in the community so she can get up and and move around.
S1: And , you know , obviously , there's a lot of work for you. Must be hard on your , your daily life there.
S4: So when I take my mom out , those activities are for me too. So I , I try to really engage in that while I can still watch my mom , which is still kind of hard. But fortunately , I've met friends in the community that attend these concerts also , and they will watch my mom. As you know , I can get up and do some dancing myself. Um , and caring for my dad. Uh , he had a stroke , which led him to be bedbound at home , and , uh , so I was bedbound for two and a half years , and I did not take care of myself. My friends warned me , go outside and get some exercise because I wasn't able to. And I developed some autoimmune deficiencies that were directly related to lack of sunlight , so that for some reason , taking care of myself is something that I still haven't balanced very well. Yeah.
S1: Yeah. I mean , it also can be so isolating and probably hard to , you know , find time to see friends and connect with others too.
S4: Isolating is yeah , I felt very isolated and I have had friends that come over and , uh , you know , some friends have asked if I wanted to play a certain game at home. Um , but they have jobs and not everybody can come over to my house all the time. But , uh , yeah , that's been a big part of , uh , of me trying to to get up in the morning and pull myself forward. Um , that isolation thing does get in the way. Shannon.
S1: Shannon. I mean , you know , talking , I imagine in your work you also work with caregivers , too. I mean , what what suggestions do you have to make sure caregivers take care of themselves , you know , and kind of help with this kind of problem of isolation and all these things that Patricia's talking about here. Yeah.
S6: Yeah. It is so important for caregivers to figure out what works for them. It's definitely not a one size fits all. And oftentimes , you know , we throw around words like self-care. Um , but that can also feel very overwhelming for a caregiver who is trying to be the sole provider and , you know , maintaining the safety and health of their loved ones. So sometimes it's starting small , you know , doing that sunshine exposure for five minutes a day or treating yourself to a , you know , a brand of tea that is maybe more expensive than you're used to , but it really brings you joy when you take each sip , or it's finding an online community if you can't leave your home easily. But really , it's figuring out what works best for you. I have caregivers who bake , um , that brings them joy. We have people who will meet up with. Other caregivers that have loved ones with dementia where they feel more accepted than in the community at large. So , um , just doing trial and error for yourself of what is going to be practical , but also what is going to fill your cup. We always try to remind our caregivers , you know , we can't pour from an empty cup. So caring for yourself is also caring for your loved one with dementia.
S1:
S4: Um , I didn't sign up for it , but when I did sign up for was caring for my parents for as long as they needed me. Um , I would like other people to know that there is a financial cost that we've paid for taking care of a loved one. And when people people have said to me , you know what ? You need to get some help. Well , that involves money , of which many of us don't have , because we put our finances aside to take care of our loved ones. Um , it would be very nice to have heard more that people want to step in and help. So I've been very blessed by good friends , and some family members have done that. Uh , but , uh , yeah , it was it's just hard to find.
S1: Well , I think it can also be something that really can divide families. Right ? You might have certain family members that are more involved , some that have moved far away. That may be a factor as well. Right , Shannon ? Definitely.
S6: We do see that with a lot of our families that , you know , there are a lot of different perspectives on how a loved one should either age in place in their own home. We have family members who tell their other loved ones , well , you know , why don't we just , you know , have mom move into a nursing home and there is a lot of discord between family members , and that can really start to tear a family apart. So when we can get on the same page , you know , utilize help of social workers , therapists , professionals to help kind of navigate some of those more difficult conversations and preserve some of those relationships. It can be beneficial for everyone in the family , um , to to feel supported as opposed to divided.
S1:
S6: There are a lot of organizations out there that I would encourage them to try to become connected to and figure out a way that they can feel a little bit more supported and engaged. Some of these organizations , most of them operate , you know , free of charge to caregivers. You know , the Southern Caregiver Resource Center , Alzheimer's Association , Alzheimer's San Diego , just to name a few. So trying to find those entities to build those support systems and networks and finding those professionals in the field who are really knowledgeable about how to support you and what you should ask for to have the best experience you can as as a caregiver and someone with living with dementia.
S1: And Patricia , earlier you mentioned , you know , music and going to concerts with your mom. I mean , I imagine there's um , also some really nice intimate moments you spend with your mom during these times. Some of these resources , Shannon , meant mention earlier.
S4: And what we've done when I've met some , they wanted to know where I take my mom around the community. So we exchanged with 1 or 2 people I've met. We've exchanged lists of where to go out and find , uh , small concerts , the the organ pavilion they have every Sunday. They have free concerts , um , libraries have little concerts. Balboa Park has a summer concert series , um , old town. So , yeah , that's something I actually would have liked to know before. That would have been very helpful. Mhm.
S1:
S4: There's , there's so many things. Um , I think I would have liked to have known or reminded to just , uh , cherish the moment because that moment is going to , uh , not be there. The symptoms progressed so slowly sometimes that before you know it , when ability is gone , I would would have liked to know. Just take in that moment. Uh , it may be the last time that you hear your mom repeat something , and I might look back and and think , gosh , I would give anything just to hear repeat something that she said in regards to , like , where's that person ? Or. Yeah.
S1: I've been speaking with Patricia Hernandez , the sole caregiver for her mother , Virginia , who has dementia. I want to thank you for sharing your story and joining us here today , Patricia.
S4: Thank you.
S1: I've also been joined by Shannon Patel. She's a licensed clinical social worker with the George G. Glennon Alzheimer's Family Center. Shannon , thanks so much for being here as well.
S6: Thank you for having me.
S1: And lastly , Heidi DeMarco , health reporter with KPBS. Thanks , Heidi.
S5: Thank you.
S1: That's our show for today. Thanks for joining us. I'm Andrew Bracken in for Jade Hyneman. Have a great day , and we'll catch you next time.
