Good Neighbor Podcast: Bergen
Bringing together local businesses and neighbors of Bergen County
Good Neighbor Podcast: Bergen
Ep. # 109 Navigating Dementia: A Family-Centered Approach with Sarah Gorenstein
Sarah Gorenstein takes us on a journey through the evolving landscape of dementia care, sharing insights from her transition from the United Kingdom to becoming a pivotal figure in reimagining how we support families facing cognitive decline in America.
The conversation reveals how our understanding of dementia has transformed over generations. What was once dismissively labeled as "going senile" is now recognized as a complex condition requiring specialized, thoughtful approaches. Sarah explains how Lizzy Care was born from her own experience working with a family struggling to navigate care options during the pandemic, despite having significant resources at their disposal.
What sets Lizzy Care apart is their recognition that dementia affects the entire family ecosystem. Their innovative model creates personalized care plans factoring in family dynamics, financial realities, and the patient's evolving needs. Sarah emphasizes the value of early intervention through companion care – providing meaningful social interaction for those with early symptoms while offering essential respite for family caregivers before they reach burnout.
Technology emerges as a game-changer in their approach. Through a custom-built platform, family members scattered across different locations can stay connected to their loved one's daily care. Caregivers document observations that might signal changes requiring attention, while Lizzy Care's clinical team analyzes patterns to prevent potential crises before they occur. This proactive stance represents a fundamental shift from the traditional reactive approach to dementia care.
The discussion touches on practical considerations too – from navigating difficult family decisions when siblings have varying levels of involvement, to understanding payment options including long-term care insurance and upcoming Medicare coverage starting July. Sarah's insights offer a roadmap for families feeling overwhelmed by the complex terrain of cognitive decline.
Ready to explore how Lizzy Care might support your family's dementia journey? Reach out to Sarah directly at sarah@hilizzy.com, call 234-567-9449, or visit www.hilizzy.com to learn more about their services throughout the tri-state area.
Lizzy Care
Sarah Gorenstein
234-567-9449
info@hilizzy,com
This is the Good Neighbor Podcast, the place where local businesses and neighbors come together. Here's your host, Doug Drohan.
Speaker 2:Hey everyone, welcome to another episode of the Good Neighbor Podcast. I am your host, doug Drohan from the Bergen Neighbors Media Group. Today we have a great guest. We're going to talk about dementia care with Sarah Gorenstein from Lizzy Care. Welcome to the show.
Speaker 3:Hi everybody, Thanks for having me, Doug.
Speaker 2:Absolutely. It's funny. A guest I had earlier today is an estate attorney and elder law attorney. So we talked a lot about preparing and planning for your loved one's next phase in their life and how a lot of people don't plan and then they find out that their mother or father or their spouse has dementia and they haven't fully, you know, planned for it financially in protecting their assets or saving enough or how they're going to pay for it. So you know, it's a nice kind of segue from that discussion to talking with you. So, sarah, tell us a little bit about yourself first before we even get into Lizzie Care, like where are you from and you know what's your background.
Speaker 3:Yeah. So some of your listeners may be able to determine that I'm not actually a Native American. I grew up yeah, yeah, no Queens.
Speaker 2:Actually, people have said Queens Okay, all right, yeah, yeah, the original Queens.
Speaker 3:The original Queens. So I grew up over the pond in the United Kingdom. I grew up in Nottingham, I went to university in Leeds and then I was in London for about 20 years and then I met my husband and he lived over in the States and that's what brought me over. So people often ask which is better London or New York, and all I'll say is I was a single woman while I lived in London and moved to New York, and I'm a married woman with two teenage sons now, so my lifestyle is very different yeah, yeah, you know, I've been to London many times, once as a student, and I used to go back for work a lot, and I think if you like New York, you like London.
Speaker 2:it's a similar. Obviously they're different cities, but there's a certain vibe about the two of them that I think you can compare. Obviously, london is much bigger and the nice thing about the New York City subway system is you pay one price to go all the way from Coney Island to the Bronx. Or in London you have to pay more the further out you go. But the tube system is a lot nicer and that's it, but organized. But that's me saying that. Maybe someone who lives in London doesn't think that. But it is funny. Like, what do you like more in London or New York? I mean it's, there's a lot of different things, but in some ways it's a cosmopolitan city on both sides.
Speaker 3:So it is, I feel, very fortunate to have had living experience in both, and I think London is great, new York is great. They are very similar but they're also very different, very different characters.
Speaker 2:Yeah, yeah.
Speaker 3:But yeah, I love it over here. You know, maybe one day I'll go back. You never say never.
Speaker 2:Right right. Yeah, my niece married someone from Birmingham and, going way back, my uncle was stationed in the Air Force Right right. Yeah, my niece married someone from.
Speaker 3:Birmingham, uh-huh.
Speaker 2:And going way back. My uncle was stationed in the Air Force in the 1950s in England and married my aunt Daphne, so oh, yeah, well, I think the yeah.
Speaker 3:My grandmother, if she knew that I lived in America, she would unfortunately she passed away many years ago she would be very excited because, uh, the American GI certainly had a, a glamorous um maybe not so much anymore, but yeah so, all right, so let's fast forward.
Speaker 2:So you moved to the States. You're in the city. How did you get involved with dementia care?
Speaker 3:Well, interesting, very circuitous route. Actually, I don't have a healthcare background. I was working with a family who had a family member who was suffering from dementia and during the pandemic prior to the pandemic and during the pandemic they needed a lot of assistance with her and really my role became finding care for her and putting together a holistic care system for her to age in place at home, and it was a real journey. It really became very meaningful for me and understanding that even people who may have sizable assets and access to a lot of resources, education found it incredibly difficult to know how to navigate this care landscape, and you spoke a little bit earlier about estate planning and having the money.
Speaker 3:That is something that is very important and I would urge everybody at earlier stages of their life to start having those conversations, particularly with their parents, about what their wishes would be should something happen in this scenario. You know, if something happens, what would you prefer? Would you want to be aging in place? Would you be happy to move into a community? Let's talk about it in the cold light of day, while we're not in crisis, so that's, that's kind of. I'm sure you had similar advice with the estate attorneys.
Speaker 2:Yeah, and that's that's a tough thing, though is a lot of people avoid it because it's a tough subject to to really think about or discuss, and then there's an expense involved, and I just find that people keep putting it off and putting it off and then all of a sudden it's too late.
Speaker 3:But specifically with dementia.
Speaker 2:Now, that's something that you know. It seems to me like autism, dementia. These are things that didn't really exist in our lexicon a generation ago. I mean, maybe we had different words for somebody with dementia. What's that?
Speaker 3:Yeah, I was going to say. I remember growing up with a grandfather who I knew, even at an early age. There was something that was a little bit unusual about the way he behaved and I would ask my family you know what's wrong with grandpa? And I was always told, oh, he's going senile.
Speaker 2:And I think that was the lexicon we used back in the day, that kind of ageism.
Speaker 3:Yeah, he's going senile right Going senile. I think the last, particularly the last 20 years, maybe even more accelerated over the last five to 10 years, there has been much more awareness of, I think, any kind of cognitive impairment, be that mental illness, be that a neurodegenerative disease. I think the fact that people are talking about it and it is being discussed is only good for all of us.
Speaker 2:Right, right, yeah. And I know people whose parents or grandparents are suffering from dementia and it's kind of sad for the whole family. And I had someone on my show a couple of weeks back who's a certified dementia care specialist show a couple of weeks back who's a certified dementia care specialist.
Speaker 2:But what I, you know, I noticed about Lizzie Care is it's, you know, your tagline is re-imagined dementia care for the whole family, because I'd imagine, you know, once your parent doesn't remember your name and is kind of just, you know, from one conversation to the next doesn't remember what they were talking about, it's got to be a really, you know, debilitating for the entire family. So tell me more about this approach where it's care for the whole family.
Speaker 3:Yeah, I think it's really interesting. You touch on a very important point there. I think what we know as experts in this field is every family's journey is going to be a little bit different. The presentation of the disease is going to be a little bit different as well. So forgetfulness, memory loss is certainly part of it. But we have many families that we're working with where there's full familial recognition, maybe two or three years into the disease. So it doesn't happen gradually, it does happen quite gradually.
Speaker 3:A lot of these hallmarks of the disease.
Speaker 3:When somebody mentions the word dementia or one of its forms Alzheimer's I think most people go to this memory loss thing and, of course, for the family members, when they don't remember who the family member is, that's incredibly painful on an emotional level. So one of the things we lean into with Lizzie Care is understanding the individual family dynamics, and that can be anything from financial to relationships, to situations, to the support system, family support systems that are available. We really try to get close, or we do get close and we understand, we work alongside all of what we call the stakeholders. Those stakeholders could be family members, they could be medical professionals, physical therapists, pcps, and also understanding what a family's, what really what a patient's desires were. Maybe they did have that conversation at an earlier time and the family knows that they are actually quite happy to move into a senior living facility and, trust me, there are many, many gorgeous senior living facilities. There's a. I think there's also a myth about what they look like, um, and it's quite different in today's.
Speaker 2:Yeah, yeah, many of them, and they look like you know beautiful college campuses. Some of them, that's right that's right.
Speaker 3:I mean, really what we're looking for is providing the best level of care for the care recipient and their family. We include the family as part of that piece that needs supporting and we really surround them with all of the services they need, based on really where they are in their journey and what kind of resources they have available to spend on it.
Speaker 2:So that would be anywhere from home care right to giving them guidance of where to move and to say it's a memory care facility, or I shouldn't say facility, community, or maybe it's an assisted living community that has memory care.
Speaker 3:Yeah, and we're also very conscious of how people want to spend their money or should be spending their money. And early on in the disease there are challenges that the family faces, really, as the disease is kind of kicking in, where you aren't at that place where a family member forgets who their loved ones are, but at the earlier stages where you understand there's something not quite right and you're noticing maybe some forgetfulness or some anger or some depression, all of those signs.
Speaker 3:We really believe and are proving out that people don't need what we think of traditionally as hands-on dementia care at that point, but what they can really benefit from is some socialisation and some friendship and we lean very heavily into providing bespoke companions. So people who will come in and if the family is the primary caregivers they often are, especially in the early stages maybe a husband and wife who've lived together for 50, 55, 60 years and the the wife is noticing there is something not quite the same with her husband, may talk to the family about it. The children will probably get involved. Um, and there's a lot of frustration and a lot of impatience with the patient who may be displaying what other people might see as signs of dementia, but for that spouse it's incredibly difficult to understand that that's happening to this.
Speaker 2:The denial could be both the family and the actual person who's starting to decline.
Speaker 3:Very much, very much. And so we recognize that at that point it can be extremely beneficial for the spouse and the care recipient to not be in the same place all the time and to give permission really permission to that spouse to say go out, go do what you need to do, have a little bit of self-care for yourself and we'll bring somebody in who can engage with your loved one and really form a relationship.
Speaker 2:Is that the same person who's going to be doing the in-home nursing, or is that a separate person?
Speaker 3:Occasionally it will be the same person, but quite often, you know, we start with what we call companion care and then we may transition over time into more hands-on care. Sometimes that person will be able to perform those duties and sometimes it will be somebody else. It really depends on the case, and it may be that somebody decides they they have it makes sense for their family situation, for them to be living in another, in another community, not living at home. There is no right and no wrong and it definitely is not one size fits all.
Speaker 3:But, understanding and giving that support to the family in the earliest stages of the disease can really help everybody come to terms with the situation and be making decisions that are not crisis-driven.
Speaker 2:So basically, the reason they they reach out is when, at the first moment, they think that their loved one is starting to decline mentally and may fear that they have dementia. Now shouldn't they go to the doctor first to get a diagnosis?
Speaker 3:They should definitely, definitely speak with their doctor and then their doctors may well recommend that they get in touch with us, because the typical scenario at the moment so we deal with everybody at every stage of dementia Typically somebody will receive a diagnosis from their PCP or their neurologist and then they are said come back in six months and if we need to put you on medications, we will, or we'll see how you are in six months. Meanwhile, the family goes back home and things can decline during those six months and they're noticing things and they're not really sure what to do. Who can help? How do we move through this? How do we even tell my husband that we think he has dementia?
Speaker 3:Because it's still got that stigma, especially for the generation that are beginning to receive the diagnosis. So, yeah, there's a lot of parts to it, but we really try to be there as a support system for the families. So they have a resource, they have someone in their corner that they can talk to and they can plan and strategize with, and then, as we create what we call a care plan, we do that together with the families and we have everybody's. Everybody is a stakeholder in that.
Speaker 2:And is that, together with their doctors or you, provide?
Speaker 3:We consult with their doctors, so we have a medical team as well, and we do all of this through a platform, through an app that's on people's phones.
Speaker 3:Through an app that's on people's phones, our caregivers, our companions, our caregivers, whoever is part of what we call that care circle will write notes on the platform. If there's a family member who's living on the other side of the country or, as in my case, in another country, they can see what's happening really in real time and on a daily basis. Oh, my dad went for a walk with the caregiver today, but she noticed that there was some unsteadiness with his walking. The lizzie care team then reviews those notes on on a regular basis, talks to the pcps, we discuss what the best plan is and we're trying to stay one step ahead of a crisis by working together with the families. And then, as we recognize that more care is needed, we do this through. You know we have. We analyze the data, we look at it with our clinical teams. Then we can step in and provide additional services with the agreement of the family.
Speaker 2:Right, okay, and then if they decide to go through a senior living or memory care, do they then employ the use of an assisted living kind of locator, or is that where you would? Somebody from Lizzie Care would take them around to the different communities for you know to decide what the best option is it's really up to them.
Speaker 3:It is a service we offer as part of our um you do offer that we do yes, yes okay and we have done that quite successfully with a with a couple of people recently, but we're trying to maximize everybody has a finite budget at the end of the day that that finite budget may be bigger and for some people than it is for others, but we are trying to manage that money with them and make sure that they're making the right decisions for their situation so when did uh lizzie care, like, where did it start?
Speaker 2:Where did the company start, in terms of what part of the country, and why is it called Lizzie Care?
Speaker 3:Yeah, good question. So we started in New York, just outside of the city, and we started two and a half years ago. My background is really as a geriatric care manager. As I mentioned, I started working with a family and, as a result of the work I did with them, I was recommended to numerous neighbours and started working with them as well, and then I was actually introduced to one of my co-founders, ollie, through a New York City playground convoluted connection.
Speaker 3:He and I got on a phone call together. He had built a technology platform and one of the things that I had understood when I was building out these systems in the early days was how important communication is between family members, between care team members, providing that consistency so that the the care that the care recipient was receiving was always consistent and based on what had happened the day before. For example, if she had eaten something and had an upset tummy, we would know not to give that to her again or there would be a reason why she had an upset tummy quite often carers, caregivers are not given enough support with the work that they're doing and we're trying to avoid always trying to avoid hospital appointments and hospital admissions.
Speaker 3:ollie had my, my co-founder, ollie fielding, had built a technology platform based on at-home caregivers, trying to connect them, because not only does the care recipient sometimes suffer from social isolation, but their caregivers can as well.
Speaker 3:So, we came together and we realized there was some magic that could happen together. Realized there was some magic that could happen together, and a few months later we were fortunate enough to bring in our CEO, who is Dr Mark Rothman, who has been a geriatrician for the last 20, 30 years and is completely passionate about dementia care and is able to provide some clinical oversight. That really differentiates us from other people.
Speaker 2:Wow, and then you know who's Lizzie.
Speaker 3:Lizzie. So Lizzie was the first. Lizzie is named in honor of Dr Elizabeth Blackwell. Dr Elizabeth Blackwell for those of you who may not have studied the history at school was the first female MD in the United States and purely coincidentally, she also was born in England. But I'm not, I'm not pretending to be Lizzie. Yes, yes. She was the first female MD in the USA.
Speaker 3:Wow yeah, so we, we, we there has been a tradition of women being the primary caregiver in this field, so we wanted to honor that with our name yeah, that's great.
Speaker 2:And so how do people pay, like, how does it work?
Speaker 3:with with Lizzie Care. Does insurance cover it? Is it a monthly plan? How does it work? Paid? We do have a monthly subscription and that will really depend on the level of service, and I'm happy to discuss that with anybody that wants to call us. I'll give you those details later. We are covered as well by long-term care, so the Lizzie Care component is often covered by long-term care insurances, depending on how the insurance policy is written. And, most excitingly, come July we are going to be covered. Some of our services will be covered by Medicare, so that is going to be a big game changer for people who are not able to use our services as of today.
Speaker 2:Right, that's great. Yeah, so I have, you know, a couple of other questions, and you know these are things that I think people would you know, and I guess you guys can answer some of these things right, but you don't have to answer them now, but you know it's. I think the biggest thing that faces families is how do I know, you know, if my mom's just forgetting things or if she's in cognitive decline? And then if you've determined that, like, how do I know if we should bring her to a memory care community or if she could stay at home with home care, right? And and I guess, as a family, like, how do you deal with it If you have multiple siblings and you have different relationships and one's maybe caring more for their parent because they live nearby, where the other ones have moved away? I'd imagine there's a lot of that that goes on, like who's the main stakeholder when there's many kids and some of them don't live here, and these are all the types of questions and, I guess, experiences that you can help with. Is that true?
Speaker 3:That's, that's exactly why Lizzie Care was born, because of all those variances. So instead we are we, we care, we start with somebody wherever they are on their journey and we stay with them. So we don't just come in and do a job and then move out.
Speaker 3:We stay where we business model is a subscription service, so we help set up a care plan and then, as I said, through the app, we monitor that care plan and, as we're noticing changes, we talk to the family members and we help to make decisions. It's also quite beneficial for families, because having a third party who is not emotionally attached or involved with it is really a very useful it. It can help keep people accountable. We we employ people that we as coaches, so they are social workers and RNs and they do. That's exactly the type of work they do for us.
Speaker 3:They speak with the families and help to make decisions together.
Speaker 2:I mean, I think it's again I'm, I'm fortunate, my parents are 90 years old and they're okay, but my, my son's godmother is, I mean godfather, his mother is. He said yeah, she's, she's gone.
Speaker 2:You know you go talk to her and she has no memory recollection of anything and it's and they're spending, uh I don't know, like 120 000 a year. Yeah, um, you know they sold their house and all that is going to her. You know memory care. So, um, you know it's definitely a daunting, um, you know experience to go through, but unfortunately it seems to be more and more prevalent. But, but fortunately there's people like you and Lizzie Care to help guide us. So you're based or started in New York City, but we're in Bergen County in New Jersey. If someone is in Bergen County can they call you for help?
Speaker 3:Absolutely. Yes, we are fully all over the tri-state and we have a number of clients that we're servicing at the moment in Bergen. We have patients we've worked with in Teaneck, in Tenafly, in Florham Park, and we also cover Morris and other parts of and Paramus. Yes, we've got patients all over Bergen.
Speaker 2:I should have asked how do they get a hold of you? What's the best way to reach you?
Speaker 3:Okay, so they can call us on 234-567-9449. That's 234-567-9449. 234-567-9449. They can visit our website, which is www. highlizzy. com. That's H-I-L-I-Z-Z-Ycom.
Speaker 2:Or you can email me directly if you would like to. My email address is Sarah. That's S-A-R-A-H at highlizziecom. We're going to have that at the bottom of the podcast too, so there'll be a summary with all of your contact details. So, sarah, thank you very much for joining us. This was great. I think we could continue on with maybe some specific subjects and we could talk about that. Maybe we can have you back on.
Speaker 3:Thank you. Thank you so much for having me. I appreciate it.
Speaker 2:Absolutely All right, bear with me for a few seconds. Chuck's just going to say goodbye.
Speaker 1:Thank you for listening to the good neighbor podcast. To nominate your favorite local businesses to be featured on the show, go to GNP Bergen. com. That's GNP Bergen. com, or call 201-298-8325.