The Caregiving Soul:

Innovating How Caregiving Integrates into Healthcare

 

Dannelle speaks with Shaika Alothman about empowering all family caregivers through easy access to resources and expertise in a peer-to-peer fashion. You’ll learn about why current and former caregivers can be a great resource to others in a similar position and how the future of caregiving can be a place of innovation and connection.

“I want to communicate through my work to family caregivers that you actually matter, and your expertise is actually valued. We can see the weight that you bring to the table.” – Shaikha Alothman

 

Timestamps

  • 02:47 How Shaikha got into caregiving and research 
  • 05:44 Why some caregivers have a hard time identifying themselves as caregivers 
  • 09:14 Shaikha’s 3 core values and how they connect to caregiving 
  • 12:49 How family caregivers are an asset to the healthcare system 
  • 14:01 Shaikha’s research on caregiving 
  • 18:34 How Shaikha started support groups for caregivers 
  • 21:11 How Shaikha’s work was able to expand to other healthcare systems 
  • 24:35 The research Shaikha is currently working on 
  • 26:21 What Shaikha is passionate about outside of caregiving 

Actionable Tips

  1. Many family caregivers minimize their roles and experience because their work has not reached a level of intensity that they correlate with being a caregiver. If you know of someone providing care, support them in their efforts no matter what part of the journey they are on.

  2. Caregiving has a history of being stuck from breaking barriers in the ways many other industries have been able to innovate. If you are a developer, consider creating tech resources and communication spaces for caregivers to receive resources and support.
  3. If you are seeking support and resources to provide more effective care, check out Haus of Care.
  4. If you are an entrepreneur, consider creating innovative social causes that are sustainable. There are ways to create supportive resources, while still being profitable.
  5. Caregivers have so much expertise to share. Create spaces for family caregivers to step in and lead. This could be through in-person support groups in medical settings or community centers,

Resources Mentioned in the Episode

  • Aidaly: The startup Shaikha mentions that connects family caregivers with benefits their family member could qualify for. 
  • Haus of Care: The organization Shaikha co-founded that provides support for family caregivers, professional caregivers, and senior care facilities.  
  • Family Caregiver Support Groups that Shaikha helped organize

Additional Resources

About Shaikha Alothman

Shaika is the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to support other caregivers in a peer-to-peer fashion. The system is a free web and mobile platform that “matches” caregivers and then allows them to communicate with each other to provide non-medical home-care guidance.

Transcript

[00:00:00] [Music]  

[00:00:06] Shaikha: I want to communicate through my work to family caregivers that you actually matter, and your expertise is actually valued. We can see the weight that you bring to the table. 

Read More

[00:00:17] Dannelle (Recorded): Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, and how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care. 

[00:00:41] I’m your host, Dannelle LeBlanc.  

[00:00:46] [Music Ends]  

[00:00:46] Today we are speaking with Shaikha Alothman – the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to provide peer-to-peer support. Shaikha has also developed a system that “matches” caregivers to facilitate communication with one another to provide non-medical home-care guidance.  

[00:01:13] In this conversation, we’ll be discussing Shaikha’s personal experience realizing that she was a family caregiver, how family caregivers’ expertise is an asset to the healthcare system, innovative ways to reduce the disconnect between caregivers and resources, and why it’s so important to create sustainable social causes.   

[00:01:38] [Music]  

[00:01:39] Welcome to Shaikha Alothman!  

[00:01:45] [Music Ends]  

[00:01:45] Dannelle: I am so excited to have you, Shaikha. How are you? 

[00:01:49] Shaikha: I’m happy to be here. Thank you for having me. And thank you for doing this show. I think the concept is amazing and I’m very excited to be talking about stories and humanizing the caregiving experience for everyone. 

[00:02:02] Dannelle: Absolutely. I mean, this is a team effort, so it is an honor to be able to speak with you again. We had first connected, in this type of format, for the Caregiving in America live stream series where you were a panel guest along with Dr. Roxana Delgado. And so, I just want to quickly encourage anyone who has not already checked out the live stream series from Good Days, you can watch the Caregiving in America live stream at chronicdiseaseday.org.  

[00:02:43] So, now we have an opportunity to continue that conversation. Shaikha, can you tell our audience a little bit about how you got to this space to begin with? 

[00:02:55] Shaikha: Thank you for the question. And I just want to reiterate, I loved the conversation with Roxana and I say to both of you, we should have time over tea, off the record. That’s how much I loved it.  

[00:03:04] So, how I got into caregiving, I got into caregiving via coincidence. It’s a funny story. I wasn’t even in the United States, it was in Paris, out of all places. There was this organization called OECD, the Organization for Economic Development and Cooperation, and there was a session there about healthcare and about blockchain technology and healthcare. 

[00:03:21] And there was a person there who was extremely passionate, like very angry, talking about how there was a disconnect. He’s the head of the European Federation of Nurses, so he had 3 million nurses under him in this organization. And he was angry and he was saying my nurses, when we dispatch them to the homes for home care, there was a disconnect there between the family members who was going on at home, they’re not supported. 

[00:03:44] Because of the passion, I was just curious what the problem was. We talked to him and we said, you know what, I’m an entrepreneur, I’m in healthcare, public health. I’m gonna try and find a solution for this – communication solution. The irony is I took it to a function at Stanford, in California, later on, and I took it to another function at MIT or in Boston. And the irony is I discovered then it was not the problem of seeing it from the perspective of the nurses, of the social workers, or the professionals. The problem actually existed at home with the family members.  

[00:04:11] And, I later learned that I was a family caregiver myself, but I didn’t know I was labeled that way. Right? It took me actually a long time of doing research, because you can hear all these stories of people who are sacrificing so much. And we know, you know, family caregivers even die before the person they take care of. So, I got to hear so many of these stories. So, it took me a very long time to actually accept that I was a family caregiver because of how extreme these stories were. 

[00:04:36] I was like, “no, no, I’m not that. I didn’t sacrifice that much. I’m not a family caregiver”. It’s so interesting how it was a full circle moment for me once I realized. It wasn’t until the pandemic happened, where I had to take care of my parents, with the changes, and the feelings came to me and it clicked with everything that I did in my research, and I thought, hey, this is caregiving. This is it. 

[00:04:57] Dannelle: Yeah, that is so interesting, and not atypical actually for family caregivers, for us to minimize our role and experience because it has not yet reached an intensity like you described. It’s something that, in many cases, can happen gradually. It’s so important that the type of work that you’re doing, that we’re able to, within the healthcare system, reach people who are care partners and who are growing in that role, as early as possible, so that we can be better prepared for when that medical crisis or intense caregiving experience happens. 

[00:05:44] Shaikha: Just very quick comment about what you said. I have a friend who has a PhD in public health and he takes care of his mom. And because he, it’s not a live-in situation, he doesn’t live with his mom. His mom is in a facility. He still refuses to this day to accept that he’s a family caregiver, even though he organizes everything for her, the paperwork, he organizes visitors for her from out of town, the activities, and everything. But he, he still refuses to accept that he’s a family caregiver, again, PhD in public health. That’s what we’re talking about here.  

[00:06:11] Dannelle: So, that’s interesting, you’re using the word “refusing” to accept being a family caregiver. What is it about that label, I guess term, is it he just doesn’t wanna accept the label or he doesn’t feel that he’s deserving of support? What is that refusal about do you think? 

[00:06:29] Shaikha: It’s the second one. I think just like I went through turmoil, again it took me more than a year of research of talking to family caregivers day in and day out to actually accept myself because I felt like I wasn’t deserving because I think the definition that we have out there, what a family caregiver is, I think it’s not clear yet, to everyone as to what family caregiving is. Just like I did, I had a misconception of, okay, no, you have to be a full-timer. You have to live in with a parent, you have to sacrifice your job. You have to sacrifice so much of your life, like a threshold, to be able to qualify, to earn that name. 

[00:06:59] And I really think it’s the same thing with him that he, you know, because he has a job still, he doesn’t live with his mother in the facility, she’s in the facility. And so, he doesn’t see that what he’s doing is enough to earn that title. It’s interesting. 

[00:07:11] Dannelle: Oh gosh.  

[00:07:12] Shaikha: [Laughs] 

[00:07:13] Dannelle: I’m so glad you shared that because we do need to better define, and emphasize, and repeat what it means to be a family caregiver. Being a family caregiver is providing support for someone, a family member, a friend, who is needing assistance with activities of daily living in some capacity. And it may just be oftentimes that it starts out as just helping with grocery shopping, running errands, helping with household chores. It’s not always in person. It’s not always a live-in situation. It’s not always that the person that we help to care for has a disease like Alzheimer’s. So, it’s a range. 

[00:08:09] And generally the trajectory is that over time that experience is going to intensify. And so, we deserve support at the onset of beginning to help to support someone who needs assistance with activities of daily living so that when it does intensify, or when we get exhausted because of the duration of the experience, that we have the support in place that we need. 

[00:08:42] So thank you so much for bringing that up because that refusal being about not feeling deserving is heartbreaking, because for so many who feel they don’t qualify as a family caregiver end up being more susceptible to all of these negative impacts that can happen.  

[00:09:06] Shaikha: I love what you just shared. I love talking to you, Dannelle. You’re amazing.  

[00:09:09] Dannelle: I love – 

[00:09:09] Shaikha: [Laughs] 

[00:09:09] Dannelle: – talking to you too cutie pie. [Laughs] Shaikha, can you share about what your three core values are to provide further context about your work and how they connect to caregiving? 

[00:09:26] Shaikha: Thank you for the question about the values as well. I really appreciate that you’re taking the conversation from that angle. So, I’m gonna be maybe also atypical and non-traditional in answering the question.  

[00:09:35] Dannelle: My favorite! 

[00:09:36] Shaikha: Awesome! [Laughs] We’re in the right place. [Laughs] I’ve been driven into public health as an entrepreneur for a long time, since 12 years now, and counting, I’ve always approached public health, whatever problem it is that I have to deal with, whether it be obesity, a chronic disease, which are all things that I’ve worked on before, I love taking the nontraditional approach, breaking barriers and trying to, to introduce things that are done in entrepreneurship and outside of healthcare. Because in my opinion, the standards of healthcare are always behind. We’re always like 20, 25 years, even more maybe, behind from other industries. I’m talking about like the Uber and like how the models are changing with the hotel industry. Healthcare is always stuck and I’ve always seen that. 

[00:10:13] So, my approach, the first value is to break barriers, establish a very new standard that is almost there with other things in entertainment industries and transportation. And I think about like how Netflix is changing, and Amazon prime are changing the industry, the standards, how Airbnb is changing how the relationships are happening. 

[00:10:33] And there’s like a, also social concept, element to these systems where I’ve used Airbnb, and I made friends with people in a different way that I wasn’t able to make before. So, I’m not gonna diverge a lot, but look at how, like there’s amazing testing and just breaking barriers, exploring new ways of having relationships between different stakeholders, like a host and a guest, like with Airbnb. Right? This is, to me, this is mind blowing and I can’t wait to see it happen in healthcare. 

[00:10:59] What I wanna say as well is – that’s the first value, right? So, with this value, I think we are at an advantage when it comes to family caregiving, because technically, legally, and in the healthcare system, the family caregivers are invisible, it’s still a green field. And so, I think that actually makes it an advantage where we can actually innovate. So, to bring it all together, the first value is to create a service, or a level of communication with family caregivers that breaks the barriers that actually exist in the healthcare system as it is right now, again, because we are free of that. Cuz the healthcare system does not see family caregiving as a legit part of it. That’s actually a liberating element of caregiving. 

[00:11:37] The second value is, again, with regards to entrepreneurship, I want to see for-profit models happening in the healthcare system in caregiving. And the reason why I say for-profit and maybe this is the controversial, but I’m gonna be honest here. I’ve worked in the nonprofit sector before, and I’ve seen that a lot of people, not everywhere of course, but I’ve seen it enough, where people tend to think that because it’s a nonprofit, it’s the social cause, we can slack down with the level of service that we give. Right? We can take it easy. And then for-profit sector, there is KPI’s, there is like, you know, things that you hit. It’s unforgiving of actually getting results.  

[00:12:10] Dannelle: What’s a KPI? 

[00:12:12] Shaikha: It’s a key performance indicator. It’s just some jargon. Basically, it means that you have a schedule and you have to hit them with the dates. You have to hit some metrics with the dates. This is absent in the nonprofit space, unfortunately, enough times. I don’t think it’s specifically what I’m saying is that we have to be always for profit, but I think we have to stop and look at the nonprofit model and to not give ourselves enough, like a green card, right? To like do things poorly. It’s not enough that we just declare, “hey, we’re gonna do a good social cause” and everybody claps. Right? And yay that’s a good cause. And money is put into the cause. We really have to be more careful about tracking. So, that’s the second value. 

[00:12:49] The third value is, the family caregivers are an asset to the healthcare system, and to society as much as a social worker is, as much as a practitioner is. Again, I’ve seen it in the course of my work over the past four years happen. I have seen family caregivers bloom as advocates, like doing amazing work that the healthcare system itself is not doing, through social media, through Twitter or TikTok or Instagram, and through other avenues as well. And, that’s the value that I really want to bring. I want to communicate through my work to family caregivers that you actually matter and your expertise is actually valued. We can see the weight that you bring to the table. I talked a lot. [Laughs] 

[00:13:26] Dannelle: Well, there’s a lot to talk about.  

[00:13:27] Shaikha: [Laughs]  

[00:13:27] Dannelle: I mean, part of the reason why I was just so happy to have this opportunity to continue the conversation that will continue beyond this moment. This idea, this perspective, about care partners, family caregivers, being an asset to the healthcare system is a change, is a deliberate statement and intention to change our perspective about the role of family caregiver, kind of being on the sidelines within the healthcare system. 

[00:14:01] And it also, it connects to how you introduced your core values when you talked about the healthcare system being decades behind as a, kind of like as a business model, compared to other industries. Part of the reason why I think that might be, that contributes to that, is that in order for this to work, for this system to be sustainable, with family caregivers being the other half, the invisible half, of the healthcare system that happens behind the scenes, is that unlike other industries, healthcare requires a relationship.  

[00:14:38] So, if you’re in an industry, like whatever entertainment, it doesn’t require the relationship with the consumer, the consumer being the patient and the family caregiver, that care partnership, and part of the barrier to that is that, like you said, this lack of awareness about the family caregiver being an asset, how that can build the relationship. How do we do that?  

[00:15:09] Shaikha: Yeah. I came into this space looking for a solution for the Federation of Nurses with 3 million nurses. I was looking for a communication solution for them, and I ended up landing at the other side of the equation where the family caregivers were actually going on with the care all the time. And the problem turns out to be it’s actually bigger at the other side. 

[00:15:25] The first thing that we rolled out with was this app called Waz, Waze, it’s sort of like Google Maps, it’s like a community of people who are on the same road. And the concept is that if somebody is driving on the road and if they hit a bump on the road, or if there’s a stopped car, or if there’s a police car, or a camera, the driver would just click on the right button saying, “hey, there’s a bump here”. And so, the other people on the road behind, like five minutes, three minutes behind, they’re gonna see, which is a fantastic community concept for transportation. It’s amazing. It’s so simple, but it still works. They actually got purchased by Google after. That’s the recognition that they got. 

[00:16:02] We were sitting there like thinking about, okay, how do family caregivers help each other? What do we do there? Brainstorming with this like big white board. And then we mentioned the Waze app. We were like, “hey, you know, the family caregiver actually goes on a journey”. Yeah, like three years in they find out things and I’m sure people listening to this are gonna identify with this. They’re gonna go, “why didn’t anyone tell me? Why didn’t anyone tell me about this? Or why did anyone do something about this or warn me?” We all have been in such situations. 

[00:16:27] That was like the seed of it was looking at innovation outside of healthcare, just trying to find out how the community works and how to create that support system. That was like the foot in, in the work with family caregiving with me. I took it then to a national science foundation program at MIT here in Boston, and I continued doing the research, talking to family caregivers, and it just kept being confirmed to me again and again and again, people were telling me, yes, one of the best things of support, one of the best ideas, tricks and hacks I got from other family caregivers is support groups on Facebook or on Twitter. 

[00:16:59] It just kept coming to me again and again, I’m just like, “why isn’t anyone talking about this or trying to lift this up to the next level?” That’s how I ended up like really valuing the value that family caregivers bring to the table. You can very easily Google, you know, with research studies, what is the value of care, right?Because of some big number of like billions of dollars that family caregivers bring to the healthcare system. We know that, but my question also is, “what is the value that family caregivers bring to each other in supporting each other? How do you quantify that?” Because that exists, that exists like very clear. That’s the one way of looking at things and recognizing that the family caregiving space is not tracked, it’s not seen, is not studied enough. 

[00:17:38] That was the seed of it, of looking at the conversations that the connections that family caregivers have with each other. And so, we continue experimenting today with different models but the whole thing of family caregivers connecting to each other and looking at common grounds between them, that will always be the foundation of my work.  

[00:17:56] Dannelle: I love your approach being as like you’re experimenting, you’re asking these questions, and just your mindset is so refreshing and inspiring. And one of the things that you did with this, understanding that family caregivers learn so much from one another, being able to give other family caregivers a heads up about this bump in the road. [Laughs] 

[00:18:23] Shaikha: I love it. Exactly. [Laughs] Love it. [Laughs]

[00:18:26] Dannelle: Right? Hey, you guys, there’s a bump coming.

[00:18:29] Shaikha: [Laughs] 

[00:18:31] Dannelle: This is where you turn.

[00:18:32] Shaikha: [Laughs] 

[00:18:32] Dannelle: Here’s the detour. You started a support group through Haus of Care. Can you share a little bit about that? 

[00:18:42] Shaikha: That’s one of the things that I experimented with, I’ll tell you what I learned.  

[00:18:45] Dannelle: Yes. What did you learn? 

[00:18:48] Shaikha: I wanted to do things differently because I also knew from my conversations, from my research, that the traditional support groups were mostly offline. So, sometimes they’re too far for the family caregivers to attend. Sometimes the timing is wrong. And the other thing is, the third one, which is very important, was that they don’t happen frequently enough. Bonding does not happen once a month.  

[00:19:08] What I did was I made it a once-a-week thing, in addition to like popups that would happen. If I was in touch or anybody was in touch with someone who needed help, on the spot, we would just have a popup session. It was easy, just social audio. As a lot of us know, with social audio, the benefit’s that you don’t have to look like a certain way, nobody’s gonna see you. It’s just audio. 

[00:19:25] What I learned is that advocacy came out of caregiving, because of their passion, because of the pain, the whole crazy experience of caregiving. So, my question was: how much more are there, of the family caregivers, who are not advocating right now, who have a potential to advocate, or have a potential to actually deliver more value than they do now? How do I set a platform to help them, to encourage them? 

[00:19:47] I opened the support group and it was very organic. I did not appoint, I didn’t hire anyone. All I did was open the space, and I gave the space for the regulars to actually speak, and to answer questions, and to lead. The second thing that I wanted to see is: how do you build points of contact for other people to help other people? How do you create a platform to make it easier for them to help each other out? What I learned is that it was possible and I’m very proud of the people who actually came into the community. They’re fantastic.  

[00:20:12] Dannelle: I was so pleased to have the opportunity to join you. So, I saw this firsthand y’all: the folks that Shaikha had on Haus of Care, these points of contact, these advocates, these leaders. One of the things that you learn is that you didn’t need to be the sole leader, the expert, in spite of your expertise, you just allowed and created space for these family caregivers to just step in. They already knew what to do. They already knew what to say, because they had this lived experience and the assets of being natural leaders. So, that’s something that, a skill set that you either walk into caregiving with or you quickly develop. 

[00:21:04] Shaikha: [Laughs] 

[00:21:04] Dannelle: [Laughs] 

[00:21:06] Shaikha: Definitely. I got goosebumps while you were talking, Dannelle. That’s beautiful what you just said. 

[00:21:11] Dannelle: So, that is an approach that can be recreated within other healthcare systems. It developed very organically. There’s a lot of red tape sometimes involved with implementing a new program within a healthcare system. So, just the idea of the – it’s the simplicity. 

[00:21:34] Shaikha: I wanna add to that as well. From the perspective of health administration, when we rolled out that solution with MIT health medicine in 2018, a hospital on the spot came to us saying, “let’s implement this. We want to use this”. This also struck me, but of course I immediately understood why that was, because if you think about it, the expertise is already there in people’s experiences. Right? That’s one of the things I always advocate for: family caregivers are experts. 

[00:21:56] The other thing that I also see with family caregivers is that they often come to me saying, “hey, by the way, I’m not an expert. I am just a family caregiver”. Like if I want to interview them or if I want to put them on a panel, “Oh, by the way, I’m just a daughter. I’m just a son or a spouse”. And I’m like, “no, no, but that’s exactly what your position is. That is your own expertise. You have your own class of expertise”. 

[00:22:16] So, the reason why the hospital loved this and wanted to implement it is because they saw that the expertise was already there. There’s nothing to research or nothing to develop. If they’re already there, all you do, like you said, is provide space. Find ways of allowing these family caregivers to step into leadership roles. And just like you said, Dannelle, spot on. I think it takes a special kind of person to step into that role of caregiving. Even if it happens organically, without us being aware of it. It takes a special kind of courage and leadership to step into that uncertainty, the madness, how scary it is. 

[00:22:48] And so, you already have leaders anyway, by nature. These are people who are most likely to be leaders. I just want to send a message to say, the reason why the hospital loved the solution is because it doesn’t cost anything. Right? It actually takes care of load on their shoulders with the social workers. Just like I said with Airbnb, or like other systems, where you just redirect the connections of the stakeholders in the system. Right? Very simple tweak, but it brings good results.  

[00:23:13] Dannelle: These results that you’re talking about, so how does this peer-to-peer caregiver support, specifically, can you provide some specific examples about how it better supports and benefits both family caregivers, and clinical social workers, these other stakeholders in those types of settings? 

[00:23:33] Shaikha: So, also in my research, I was able to contact clinical social workers as well. And I’m very lucky and I have to say like, sometimes I’ve been connected with them and they’re like, “hush hush, like please don’t mention my name or my organization. I don’t want problems”. Because the truth is, I use the word daunting, the social workers themselves are like, “we’re tired. It’s daunting for us to try to provide support to families and we’re not keeping up”. It’s not their fault. It’s just the system again. From my experience, social workers have been extremely excited and extremely passionate about finding different solutions because their job is difficult. 

[00:24:05] One example I can use is, I was just attending a support group for families of people with dementia. I saw this before my own eyes. In the session, somebody said, “my person with dementia is refusing to eat. I don’t know what to do”. And then somebody else who was a caregiver, sitting there, raised their hand saying, “I had the same problem. And do you know what worked for me? I pureed the food. And then I put it in the plate, in the original shape of the food”. So, if it was a banana, they would put it like a banana. These are the things that happen. That’s just one example of how information is spread.  

[00:24:35] What I’m working on right now is this repository of clinical social workers, as well as dementia behavior specialists. We have the social workers on command. So, if somebody texts with a question, the social workers are immediately able to answer. The social workers are extremely excited about an alternate solution outside of the limitation of where they work, the traditional setting. What I found is that they are passionate as well of helping family members. It’s just, there’s no channel to connect them with more people. 

[00:25:02] Dannelle: I would love for you to speak more about that program.  

[00:25:06] Shaikha: Absolutely. So, what we’re doing is, we have the specialists and social workers at hand. What I want is, just like we did the support group once a week, right? To be accessible to people because again, dementia happens at the randomest times. We have these social workers who have seen dementia, and we collect what the specialties are, like what kind of areas that they feel comfortable with consulting with: sometimes it is placement for a facility, sometimes it is behavioral, sometimes it is bathing specifically. Whatever it is that they feel comfortable the most. 

[00:25:33] The whole aim is to be available for the family caregivers, like one text away. It should be caught immediately to connect with the resources”. It’s just a test still, but the whole aim is for us to have the expertise be one text away. That’s how it should be for family caregivers. That’s the least that should be done. 

[00:25:51] Dannelle: This mindfulness about, what works for family caregivers, I see it in all of your work. You’re being mindful and thinking about, okay, what’s gonna work in a real-world scenario and I think that is so important because, oftentimes the well-intentioned resources that are available aren’t necessarily accessible in everyday situations. So, I love that. I love that idea. What else are you passionate about outside of caregiving? 

[00:26:26] Shaikha: Ooh! [Laughs] I think it’s one of the values that I reflected on earlier on. Once I was giving a presentation, I called myself a health system designer, cuz a lot of people don’t understand what I do. It’s just designing the system, looking at how we can make things better with simple, small, quick tweaks. I think it’s easier than we think to make these leaps with like small tweaks. It’s so exciting. And I don’t care if it’s healthcare, caregiving, non-health care, it’s just so exciting to rearrange the resources and the economics of things. It’s like a puzzle. It’s like a game. Right? 

[00:26:56] Dannelle: I love that. As a health systems designer, why you find so much success, why you find what works for everyone involved, is because you’re asking such good questions of family caregivers. 

[00:27:11] Shaikha: I’m saying this because I want to encourage more innovation in this space. I want people to be my colleague in this space. I really think that our generation is gonna be the time of changing the landscape of social innovation, with entrepreneurship. I can see brave people putting in money, philanthropic ventures, which is fantastic.  

[00:27:26] There’s a startup called A-i-d-a-l-y, Aidaly, and they are in the family caregiving space. And what they do is they connect the family members of people with chronic disease, with the benefit that they can qualify for. So, what they did was they created the software that scans the databases around, according to their city, according to the situation. And they can very easily tell you, very quickly, saves you a lot of time, which benefits you qualify for. I think they take a cut from that fee, from whatever it is that they give you. And that’s how they make it sustainable. I love that challenge of trying to create a sustainable model but for a good social cause as well. I really believe in that. 

[00:28:02] Dannelle: I am for that. [Claps] Doing good and making money. [Laughs] 

[00:28:08] Shaikha: Exactly! Sustainability, right?  

[00:28:11] Dannelle: Shaikha, thank you so much for joining me today on The Caregiving Soul. It was such a pleasure to be able to speak with you again, and I look forward to continuing this conversation. 

[00:28:22] Shaikha: Thank you Dannelle. I enjoyed this so much more than I can express, I love talking to you. What you’re doing is amazing. I think you bring life into these caregiving conversations. I love your approach. Thank you. 

[00:28:32] Dannelle: Thank you lovie.  

[00:28:33] [Music]  

[00:28:36] Dannelle (Recorded): Thank you for joining our conversation with Shaikha. Shaikha’s idea of empowering all family caregivers through easy access to resources and expertise, shows the future of caregiving can be a place of innovation and connection.   

[00:28:56] For more information on Shaikha and Haus of Care, check out our show notes.  

[00:29:02] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.      

[00:29:18] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.      

[00:29:30] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.     

[00:29:58] And remember, the right care includes care for you.  

Read Less

Innovating How Caregiving Integrates into Healthcare

 

Dannelle speaks with Shaika Alothman about empowering all family caregivers through easy access to resources and expertise in a peer-to-peer fashion. You’ll learn about why current and former caregivers can be a great resource to others in a similar position and how the future of caregiving can be a place of innovation and connection.

“I want to communicate through my work to family caregivers that you actually matter, and your expertise is actually valued. We can see the weight that you bring to the table.” – Shaikha Alothman

 

Timestamps

  • 02:47 How Shaikha got into caregiving and research 
  • 05:44 Why some caregivers have a hard time identifying themselves as caregivers 
  • 09:14 Shaikha’s 3 core values and how they connect to caregiving 
  • 12:49 How family caregivers are an asset to the healthcare system 
  • 14:01 Shaikha’s research on caregiving 
  • 18:34 How Shaikha started support groups for caregivers 
  • 21:11 How Shaikha’s work was able to expand to other healthcare systems 
  • 24:35 The research Shaikha is currently working on 
  • 26:21 What Shaikha is passionate about outside of caregiving 

Actionable Tips

  1. Many family caregivers minimize their roles and experience because their work has not reached a level of intensity that they correlate with being a caregiver. If you know of someone providing care, support them in their efforts no matter what part of the journey they are on.

  2. Caregiving has a history of being stuck from breaking barriers in the ways many other industries have been able to innovate. If you are a developer, consider creating tech resources and communication spaces for caregivers to receive resources and support.
  3. If you are seeking support and resources to provide more effective care, check out Haus of Care.
  4. If you are an entrepreneur, consider creating innovative social causes that are sustainable. There are ways to create supportive resources, while still being profitable.
  5. Caregivers have so much expertise to share. Create spaces for family caregivers to step in and lead. This could be through in-person support groups in medical settings or community centers,

Resources Mentioned in the Episode

  • Aidaly: The startup Shaikha mentions that connects family caregivers with benefits their family member could qualify for. 
  • Haus of Care: The organization Shaikha co-founded that provides support for family caregivers, professional caregivers, and senior care facilities.  
  • Family Caregiver Support Groups that Shaikha helped organize

Additional Resources

About Shaikha Alothman

Shaika is the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to support other caregivers in a peer-to-peer fashion. The system is a free web and mobile platform that “matches” caregivers and then allows them to communicate with each other to provide non-medical home-care guidance.

Transcript

[00:00:00] [Music]  

[00:00:06] Shaikha: I want to communicate through my work to family caregivers that you actually matter, and your expertise is actually valued. We can see the weight that you bring to the table. 

Read More

[00:00:17] Dannelle (Recorded): Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, and how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care. 

[00:00:41] I’m your host, Dannelle LeBlanc.  

[00:00:46] [Music Ends]  

[00:00:46] Today we are speaking with Shaikha Alothman – the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to provide peer-to-peer support. Shaikha has also developed a system that “matches” caregivers to facilitate communication with one another to provide non-medical home-care guidance.  

[00:01:13] In this conversation, we’ll be discussing Shaikha’s personal experience realizing that she was a family caregiver, how family caregivers’ expertise is an asset to the healthcare system, innovative ways to reduce the disconnect between caregivers and resources, and why it’s so important to create sustainable social causes.   

[00:01:38] [Music]  

[00:01:39] Welcome to Shaikha Alothman!  

[00:01:45] [Music Ends]  

[00:01:45] Dannelle: I am so excited to have you, Shaikha. How are you? 

[00:01:49] Shaikha: I’m happy to be here. Thank you for having me. And thank you for doing this show. I think the concept is amazing and I’m very excited to be talking about stories and humanizing the caregiving experience for everyone. 

[00:02:02] Dannelle: Absolutely. I mean, this is a team effort, so it is an honor to be able to speak with you again. We had first connected, in this type of format, for the Caregiving in America live stream series where you were a panel guest along with Dr. Roxana Delgado. And so, I just want to quickly encourage anyone who has not already checked out the live stream series from Good Days, you can watch the Caregiving in America live stream at chronicdiseaseday.org.  

[00:02:43] So, now we have an opportunity to continue that conversation. Shaikha, can you tell our audience a little bit about how you got to this space to begin with? 

[00:02:55] Shaikha: Thank you for the question. And I just want to reiterate, I loved the conversation with Roxana and I say to both of you, we should have time over tea, off the record. That’s how much I loved it.  

[00:03:04] So, how I got into caregiving, I got into caregiving via coincidence. It’s a funny story. I wasn’t even in the United States, it was in Paris, out of all places. There was this organization called OECD, the Organization for Economic Development and Cooperation, and there was a session there about healthcare and about blockchain technology and healthcare. 

[00:03:21] And there was a person there who was extremely passionate, like very angry, talking about how there was a disconnect. He’s the head of the European Federation of Nurses, so he had 3 million nurses under him in this organization. And he was angry and he was saying my nurses, when we dispatch them to the homes for home care, there was a disconnect there between the family members who was going on at home, they’re not supported. 

[00:03:44] Because of the passion, I was just curious what the problem was. We talked to him and we said, you know what, I’m an entrepreneur, I’m in healthcare, public health. I’m gonna try and find a solution for this – communication solution. The irony is I took it to a function at Stanford, in California, later on, and I took it to another function at MIT or in Boston. And the irony is I discovered then it was not the problem of seeing it from the perspective of the nurses, of the social workers, or the professionals. The problem actually existed at home with the family members.  

[00:04:11] And, I later learned that I was a family caregiver myself, but I didn’t know I was labeled that way. Right? It took me actually a long time of doing research, because you can hear all these stories of people who are sacrificing so much. And we know, you know, family caregivers even die before the person they take care of. So, I got to hear so many of these stories. So, it took me a very long time to actually accept that I was a family caregiver because of how extreme these stories were. 

[00:04:36] I was like, “no, no, I’m not that. I didn’t sacrifice that much. I’m not a family caregiver”. It’s so interesting how it was a full circle moment for me once I realized. It wasn’t until the pandemic happened, where I had to take care of my parents, with the changes, and the feelings came to me and it clicked with everything that I did in my research, and I thought, hey, this is caregiving. This is it. 

[00:04:57] Dannelle: Yeah, that is so interesting, and not atypical actually for family caregivers, for us to minimize our role and experience because it has not yet reached an intensity like you described. It’s something that, in many cases, can happen gradually. It’s so important that the type of work that you’re doing, that we’re able to, within the healthcare system, reach people who are care partners and who are growing in that role, as early as possible, so that we can be better prepared for when that medical crisis or intense caregiving experience happens. 

[00:05:44] Shaikha: Just very quick comment about what you said. I have a friend who has a PhD in public health and he takes care of his mom. And because he, it’s not a live-in situation, he doesn’t live with his mom. His mom is in a facility. He still refuses to this day to accept that he’s a family caregiver, even though he organizes everything for her, the paperwork, he organizes visitors for her from out of town, the activities, and everything. But he, he still refuses to accept that he’s a family caregiver, again, PhD in public health. That’s what we’re talking about here.  

[00:06:11] Dannelle: So, that’s interesting, you’re using the word “refusing” to accept being a family caregiver. What is it about that label, I guess term, is it he just doesn’t wanna accept the label or he doesn’t feel that he’s deserving of support? What is that refusal about do you think? 

[00:06:29] Shaikha: It’s the second one. I think just like I went through turmoil, again it took me more than a year of research of talking to family caregivers day in and day out to actually accept myself because I felt like I wasn’t deserving because I think the definition that we have out there, what a family caregiver is, I think it’s not clear yet, to everyone as to what family caregiving is. Just like I did, I had a misconception of, okay, no, you have to be a full-timer. You have to live in with a parent, you have to sacrifice your job. You have to sacrifice so much of your life, like a threshold, to be able to qualify, to earn that name. 

[00:06:59] And I really think it’s the same thing with him that he, you know, because he has a job still, he doesn’t live with his mother in the facility, she’s in the facility. And so, he doesn’t see that what he’s doing is enough to earn that title. It’s interesting. 

[00:07:11] Dannelle: Oh gosh.  

[00:07:12] Shaikha: [Laughs] 

[00:07:13] Dannelle: I’m so glad you shared that because we do need to better define, and emphasize, and repeat what it means to be a family caregiver. Being a family caregiver is providing support for someone, a family member, a friend, who is needing assistance with activities of daily living in some capacity. And it may just be oftentimes that it starts out as just helping with grocery shopping, running errands, helping with household chores. It’s not always in person. It’s not always a live-in situation. It’s not always that the person that we help to care for has a disease like Alzheimer’s. So, it’s a range. 

[00:08:09] And generally the trajectory is that over time that experience is going to intensify. And so, we deserve support at the onset of beginning to help to support someone who needs assistance with activities of daily living so that when it does intensify, or when we get exhausted because of the duration of the experience, that we have the support in place that we need. 

[00:08:42] So thank you so much for bringing that up because that refusal being about not feeling deserving is heartbreaking, because for so many who feel they don’t qualify as a family caregiver end up being more susceptible to all of these negative impacts that can happen.  

[00:09:06] Shaikha: I love what you just shared. I love talking to you, Dannelle. You’re amazing.  

[00:09:09] Dannelle: I love – 

[00:09:09] Shaikha: [Laughs] 

[00:09:09] Dannelle: – talking to you too cutie pie. [Laughs] Shaikha, can you share about what your three core values are to provide further context about your work and how they connect to caregiving? 

[00:09:26] Shaikha: Thank you for the question about the values as well. I really appreciate that you’re taking the conversation from that angle. So, I’m gonna be maybe also atypical and non-traditional in answering the question.  

[00:09:35] Dannelle: My favorite! 

[00:09:36] Shaikha: Awesome! [Laughs] We’re in the right place. [Laughs] I’ve been driven into public health as an entrepreneur for a long time, since 12 years now, and counting, I’ve always approached public health, whatever problem it is that I have to deal with, whether it be obesity, a chronic disease, which are all things that I’ve worked on before, I love taking the nontraditional approach, breaking barriers and trying to, to introduce things that are done in entrepreneurship and outside of healthcare. Because in my opinion, the standards of healthcare are always behind. We’re always like 20, 25 years, even more maybe, behind from other industries. I’m talking about like the Uber and like how the models are changing with the hotel industry. Healthcare is always stuck and I’ve always seen that. 

[00:10:13] So, my approach, the first value is to break barriers, establish a very new standard that is almost there with other things in entertainment industries and transportation. And I think about like how Netflix is changing, and Amazon prime are changing the industry, the standards, how Airbnb is changing how the relationships are happening. 

[00:10:33] And there’s like a, also social concept, element to these systems where I’ve used Airbnb, and I made friends with people in a different way that I wasn’t able to make before. So, I’m not gonna diverge a lot, but look at how, like there’s amazing testing and just breaking barriers, exploring new ways of having relationships between different stakeholders, like a host and a guest, like with Airbnb. Right? This is, to me, this is mind blowing and I can’t wait to see it happen in healthcare. 

[00:10:59] What I wanna say as well is – that’s the first value, right? So, with this value, I think we are at an advantage when it comes to family caregiving, because technically, legally, and in the healthcare system, the family caregivers are invisible, it’s still a green field. And so, I think that actually makes it an advantage where we can actually innovate. So, to bring it all together, the first value is to create a service, or a level of communication with family caregivers that breaks the barriers that actually exist in the healthcare system as it is right now, again, because we are free of that. Cuz the healthcare system does not see family caregiving as a legit part of it. That’s actually a liberating element of caregiving. 

[00:11:37] The second value is, again, with regards to entrepreneurship, I want to see for-profit models happening in the healthcare system in caregiving. And the reason why I say for-profit and maybe this is the controversial, but I’m gonna be honest here. I’ve worked in the nonprofit sector before, and I’ve seen that a lot of people, not everywhere of course, but I’ve seen it enough, where people tend to think that because it’s a nonprofit, it’s the social cause, we can slack down with the level of service that we give. Right? We can take it easy. And then for-profit sector, there is KPI’s, there is like, you know, things that you hit. It’s unforgiving of actually getting results.  

[00:12:10] Dannelle: What’s a KPI? 

[00:12:12] Shaikha: It’s a key performance indicator. It’s just some jargon. Basically, it means that you have a schedule and you have to hit them with the dates. You have to hit some metrics with the dates. This is absent in the nonprofit space, unfortunately, enough times. I don’t think it’s specifically what I’m saying is that we have to be always for profit, but I think we have to stop and look at the nonprofit model and to not give ourselves enough, like a green card, right? To like do things poorly. It’s not enough that we just declare, “hey, we’re gonna do a good social cause” and everybody claps. Right? And yay that’s a good cause. And money is put into the cause. We really have to be more careful about tracking. So, that’s the second value. 

[00:12:49] The third value is, the family caregivers are an asset to the healthcare system, and to society as much as a social worker is, as much as a practitioner is. Again, I’ve seen it in the course of my work over the past four years happen. I have seen family caregivers bloom as advocates, like doing amazing work that the healthcare system itself is not doing, through social media, through Twitter or TikTok or Instagram, and through other avenues as well. And, that’s the value that I really want to bring. I want to communicate through my work to family caregivers that you actually matter and your expertise is actually valued. We can see the weight that you bring to the table. I talked a lot. [Laughs] 

[00:13:26] Dannelle: Well, there’s a lot to talk about.  

[00:13:27] Shaikha: [Laughs]  

[00:13:27] Dannelle: I mean, part of the reason why I was just so happy to have this opportunity to continue the conversation that will continue beyond this moment. This idea, this perspective, about care partners, family caregivers, being an asset to the healthcare system is a change, is a deliberate statement and intention to change our perspective about the role of family caregiver, kind of being on the sidelines within the healthcare system. 

[00:14:01] And it also, it connects to how you introduced your core values when you talked about the healthcare system being decades behind as a, kind of like as a business model, compared to other industries. Part of the reason why I think that might be, that contributes to that, is that in order for this to work, for this system to be sustainable, with family caregivers being the other half, the invisible half, of the healthcare system that happens behind the scenes, is that unlike other industries, healthcare requires a relationship.  

[00:14:38] So, if you’re in an industry, like whatever entertainment, it doesn’t require the relationship with the consumer, the consumer being the patient and the family caregiver, that care partnership, and part of the barrier to that is that, like you said, this lack of awareness about the family caregiver being an asset, how that can build the relationship. How do we do that?  

[00:15:09] Shaikha: Yeah. I came into this space looking for a solution for the Federation of Nurses with 3 million nurses. I was looking for a communication solution for them, and I ended up landing at the other side of the equation where the family caregivers were actually going on with the care all the time. And the problem turns out to be it’s actually bigger at the other side. 

[00:15:25] The first thing that we rolled out with was this app called Waz, Waze, it’s sort of like Google Maps, it’s like a community of people who are on the same road. And the concept is that if somebody is driving on the road and if they hit a bump on the road, or if there’s a stopped car, or if there’s a police car, or a camera, the driver would just click on the right button saying, “hey, there’s a bump here”. And so, the other people on the road behind, like five minutes, three minutes behind, they’re gonna see, which is a fantastic community concept for transportation. It’s amazing. It’s so simple, but it still works. They actually got purchased by Google after. That’s the recognition that they got. 

[00:16:02] We were sitting there like thinking about, okay, how do family caregivers help each other? What do we do there? Brainstorming with this like big white board. And then we mentioned the Waze app. We were like, “hey, you know, the family caregiver actually goes on a journey”. Yeah, like three years in they find out things and I’m sure people listening to this are gonna identify with this. They’re gonna go, “why didn’t anyone tell me? Why didn’t anyone tell me about this? Or why did anyone do something about this or warn me?” We all have been in such situations. 

[00:16:27] That was like the seed of it was looking at innovation outside of healthcare, just trying to find out how the community works and how to create that support system. That was like the foot in, in the work with family caregiving with me. I took it then to a national science foundation program at MIT here in Boston, and I continued doing the research, talking to family caregivers, and it just kept being confirmed to me again and again and again, people were telling me, yes, one of the best things of support, one of the best ideas, tricks and hacks I got from other family caregivers is support groups on Facebook or on Twitter. 

[00:16:59] It just kept coming to me again and again, I’m just like, “why isn’t anyone talking about this or trying to lift this up to the next level?” That’s how I ended up like really valuing the value that family caregivers bring to the table. You can very easily Google, you know, with research studies, what is the value of care, right?Because of some big number of like billions of dollars that family caregivers bring to the healthcare system. We know that, but my question also is, “what is the value that family caregivers bring to each other in supporting each other? How do you quantify that?” Because that exists, that exists like very clear. That’s the one way of looking at things and recognizing that the family caregiving space is not tracked, it’s not seen, is not studied enough. 

[00:17:38] That was the seed of it, of looking at the conversations that the connections that family caregivers have with each other. And so, we continue experimenting today with different models but the whole thing of family caregivers connecting to each other and looking at common grounds between them, that will always be the foundation of my work.  

[00:17:56] Dannelle: I love your approach being as like you’re experimenting, you’re asking these questions, and just your mindset is so refreshing and inspiring. And one of the things that you did with this, understanding that family caregivers learn so much from one another, being able to give other family caregivers a heads up about this bump in the road. [Laughs] 

[00:18:23] Shaikha: I love it. Exactly. [Laughs] Love it. [Laughs]

[00:18:26] Dannelle: Right? Hey, you guys, there’s a bump coming.

[00:18:29] Shaikha: [Laughs] 

[00:18:31] Dannelle: This is where you turn.

[00:18:32] Shaikha: [Laughs] 

[00:18:32] Dannelle: Here’s the detour. You started a support group through Haus of Care. Can you share a little bit about that? 

[00:18:42] Shaikha: That’s one of the things that I experimented with, I’ll tell you what I learned.  

[00:18:45] Dannelle: Yes. What did you learn? 

[00:18:48] Shaikha: I wanted to do things differently because I also knew from my conversations, from my research, that the traditional support groups were mostly offline. So, sometimes they’re too far for the family caregivers to attend. Sometimes the timing is wrong. And the other thing is, the third one, which is very important, was that they don’t happen frequently enough. Bonding does not happen once a month.  

[00:19:08] What I did was I made it a once-a-week thing, in addition to like popups that would happen. If I was in touch or anybody was in touch with someone who needed help, on the spot, we would just have a popup session. It was easy, just social audio. As a lot of us know, with social audio, the benefit’s that you don’t have to look like a certain way, nobody’s gonna see you. It’s just audio. 

[00:19:25] What I learned is that advocacy came out of caregiving, because of their passion, because of the pain, the whole crazy experience of caregiving. So, my question was: how much more are there, of the family caregivers, who are not advocating right now, who have a potential to advocate, or have a potential to actually deliver more value than they do now? How do I set a platform to help them, to encourage them? 

[00:19:47] I opened the support group and it was very organic. I did not appoint, I didn’t hire anyone. All I did was open the space, and I gave the space for the regulars to actually speak, and to answer questions, and to lead. The second thing that I wanted to see is: how do you build points of contact for other people to help other people? How do you create a platform to make it easier for them to help each other out? What I learned is that it was possible and I’m very proud of the people who actually came into the community. They’re fantastic.  

[00:20:12] Dannelle: I was so pleased to have the opportunity to join you. So, I saw this firsthand y’all: the folks that Shaikha had on Haus of Care, these points of contact, these advocates, these leaders. One of the things that you learn is that you didn’t need to be the sole leader, the expert, in spite of your expertise, you just allowed and created space for these family caregivers to just step in. They already knew what to do. They already knew what to say, because they had this lived experience and the assets of being natural leaders. So, that’s something that, a skill set that you either walk into caregiving with or you quickly develop. 

[00:21:04] Shaikha: [Laughs] 

[00:21:04] Dannelle: [Laughs] 

[00:21:06] Shaikha: Definitely. I got goosebumps while you were talking, Dannelle. That’s beautiful what you just said. 

[00:21:11] Dannelle: So, that is an approach that can be recreated within other healthcare systems. It developed very organically. There’s a lot of red tape sometimes involved with implementing a new program within a healthcare system. So, just the idea of the – it’s the simplicity. 

[00:21:34] Shaikha: I wanna add to that as well. From the perspective of health administration, when we rolled out that solution with MIT health medicine in 2018, a hospital on the spot came to us saying, “let’s implement this. We want to use this”. This also struck me, but of course I immediately understood why that was, because if you think about it, the expertise is already there in people’s experiences. Right? That’s one of the things I always advocate for: family caregivers are experts. 

[00:21:56] The other thing that I also see with family caregivers is that they often come to me saying, “hey, by the way, I’m not an expert. I am just a family caregiver”. Like if I want to interview them or if I want to put them on a panel, “Oh, by the way, I’m just a daughter. I’m just a son or a spouse”. And I’m like, “no, no, but that’s exactly what your position is. That is your own expertise. You have your own class of expertise”. 

[00:22:16] So, the reason why the hospital loved this and wanted to implement it is because they saw that the expertise was already there. There’s nothing to research or nothing to develop. If they’re already there, all you do, like you said, is provide space. Find ways of allowing these family caregivers to step into leadership roles. And just like you said, Dannelle, spot on. I think it takes a special kind of person to step into that role of caregiving. Even if it happens organically, without us being aware of it. It takes a special kind of courage and leadership to step into that uncertainty, the madness, how scary it is. 

[00:22:48] And so, you already have leaders anyway, by nature. These are people who are most likely to be leaders. I just want to send a message to say, the reason why the hospital loved the solution is because it doesn’t cost anything. Right? It actually takes care of load on their shoulders with the social workers. Just like I said with Airbnb, or like other systems, where you just redirect the connections of the stakeholders in the system. Right? Very simple tweak, but it brings good results.  

[00:23:13] Dannelle: These results that you’re talking about, so how does this peer-to-peer caregiver support, specifically, can you provide some specific examples about how it better supports and benefits both family caregivers, and clinical social workers, these other stakeholders in those types of settings? 

[00:23:33] Shaikha: So, also in my research, I was able to contact clinical social workers as well. And I’m very lucky and I have to say like, sometimes I’ve been connected with them and they’re like, “hush hush, like please don’t mention my name or my organization. I don’t want problems”. Because the truth is, I use the word daunting, the social workers themselves are like, “we’re tired. It’s daunting for us to try to provide support to families and we’re not keeping up”. It’s not their fault. It’s just the system again. From my experience, social workers have been extremely excited and extremely passionate about finding different solutions because their job is difficult. 

[00:24:05] One example I can use is, I was just attending a support group for families of people with dementia. I saw this before my own eyes. In the session, somebody said, “my person with dementia is refusing to eat. I don’t know what to do”. And then somebody else who was a caregiver, sitting there, raised their hand saying, “I had the same problem. And do you know what worked for me? I pureed the food. And then I put it in the plate, in the original shape of the food”. So, if it was a banana, they would put it like a banana. These are the things that happen. That’s just one example of how information is spread.  

[00:24:35] What I’m working on right now is this repository of clinical social workers, as well as dementia behavior specialists. We have the social workers on command. So, if somebody texts with a question, the social workers are immediately able to answer. The social workers are extremely excited about an alternate solution outside of the limitation of where they work, the traditional setting. What I found is that they are passionate as well of helping family members. It’s just, there’s no channel to connect them with more people. 

[00:25:02] Dannelle: I would love for you to speak more about that program.  

[00:25:06] Shaikha: Absolutely. So, what we’re doing is, we have the specialists and social workers at hand. What I want is, just like we did the support group once a week, right? To be accessible to people because again, dementia happens at the randomest times. We have these social workers who have seen dementia, and we collect what the specialties are, like what kind of areas that they feel comfortable with consulting with: sometimes it is placement for a facility, sometimes it is behavioral, sometimes it is bathing specifically. Whatever it is that they feel comfortable the most. 

[00:25:33] The whole aim is to be available for the family caregivers, like one text away. It should be caught immediately to connect with the resources”. It’s just a test still, but the whole aim is for us to have the expertise be one text away. That’s how it should be for family caregivers. That’s the least that should be done. 

[00:25:51] Dannelle: This mindfulness about, what works for family caregivers, I see it in all of your work. You’re being mindful and thinking about, okay, what’s gonna work in a real-world scenario and I think that is so important because, oftentimes the well-intentioned resources that are available aren’t necessarily accessible in everyday situations. So, I love that. I love that idea. What else are you passionate about outside of caregiving? 

[00:26:26] Shaikha: Ooh! [Laughs] I think it’s one of the values that I reflected on earlier on. Once I was giving a presentation, I called myself a health system designer, cuz a lot of people don’t understand what I do. It’s just designing the system, looking at how we can make things better with simple, small, quick tweaks. I think it’s easier than we think to make these leaps with like small tweaks. It’s so exciting. And I don’t care if it’s healthcare, caregiving, non-health care, it’s just so exciting to rearrange the resources and the economics of things. It’s like a puzzle. It’s like a game. Right? 

[00:26:56] Dannelle: I love that. As a health systems designer, why you find so much success, why you find what works for everyone involved, is because you’re asking such good questions of family caregivers. 

[00:27:11] Shaikha: I’m saying this because I want to encourage more innovation in this space. I want people to be my colleague in this space. I really think that our generation is gonna be the time of changing the landscape of social innovation, with entrepreneurship. I can see brave people putting in money, philanthropic ventures, which is fantastic.  

[00:27:26] There’s a startup called A-i-d-a-l-y, Aidaly, and they are in the family caregiving space. And what they do is they connect the family members of people with chronic disease, with the benefit that they can qualify for. So, what they did was they created the software that scans the databases around, according to their city, according to the situation. And they can very easily tell you, very quickly, saves you a lot of time, which benefits you qualify for. I think they take a cut from that fee, from whatever it is that they give you. And that’s how they make it sustainable. I love that challenge of trying to create a sustainable model but for a good social cause as well. I really believe in that. 

[00:28:02] Dannelle: I am for that. [Claps] Doing good and making money. [Laughs] 

[00:28:08] Shaikha: Exactly! Sustainability, right?  

[00:28:11] Dannelle: Shaikha, thank you so much for joining me today on The Caregiving Soul. It was such a pleasure to be able to speak with you again, and I look forward to continuing this conversation. 

[00:28:22] Shaikha: Thank you Dannelle. I enjoyed this so much more than I can express, I love talking to you. What you’re doing is amazing. I think you bring life into these caregiving conversations. I love your approach. Thank you. 

[00:28:32] Dannelle: Thank you lovie.  

[00:28:33] [Music]  

[00:28:36] Dannelle (Recorded): Thank you for joining our conversation with Shaikha. Shaikha’s idea of empowering all family caregivers through easy access to resources and expertise, shows the future of caregiving can be a place of innovation and connection.   

[00:28:56] For more information on Shaikha and Haus of Care, check out our show notes.  

[00:29:02] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.      

[00:29:18] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.      

[00:29:30] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.     

[00:29:58] And remember, the right care includes care for you.  

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