Over the last month, we have conducted dozens of interviews with family caregivers that have a loved one with dementia. There were consistent threads in every conversation that led to the platform we are calling, ReadyCareConnect. Essentially what is missing from the market is the equivalent of an affordable Geriatric Care Manager and community support.
The reason for this is that caregivers struggle with three core things:
1. Keeping everything organized. From medications, to doctors, to plan of care, there is just a ton of information and as one of our interviewees, Kathy, said, "When you are in the middle of a crisis, it is like your brain shuts off."
2. Finding out information. There are tons of available products, services, resources but most people don't know where to look or even what they should be asking. Having someone tell them what things they need to be thinking about, like getting a will in order, giving someone power of attorney, and thinking about what end of life care would look like and directing them to resources like, grocery delivery would decrease stress of caregivers enormously.
3. Staying connected. There was not one person I spoke with that didn't comment on how incredibly lonely the process was. Many spoke about losing faith in their family and friends. They also don't have time to go to group meetings in person...because time is a rare commodity for most family caregivers.
1. ReadyCarePlan: A digital portfolio that contains all of your important information, learned information, documents, medications, doctor information, etc...It will also have prompts and templates that will suggest things you need to be thinking about doing and thinking about.
2. ReadyCareResponse: A search tool/chatbot that you can interact with to find out information on things like, what Medicare covers in Boston or what to expect in the next stage of dementia.
3. ReadyCareCommunity: A community where you can speak freely with your peers. In this section the message board will also filter answers so that the data from commonly asked questions will get collected so that the knowledge base grows, instead of each question getting asked again and again.
4. ReadyCareNavigators: The community will also have ReadyCareNavigators which are caregivers that have amassed information that you can get matched with who have already learned how to do different things, like finding a dentist for your parent who has mobility issues and dementia, or navigating care agencies in Nebraska. By matching people we both develop community, remind people that what they are doing is important and valuable and are giving people a space to be seen by others.
5. ReadyCareTask: A TaskRabbit section that will allow people find people to do simple tasks for them like running to the grocery store, spending an hour talking to their parent or doing the laundry.
*I think it is possible that we will want to consider some way to conscript friends to help out through this mechanism. One of the people I interviewed made this sheet just because she needs some way to get people involved and it may be worth thinking about.
6. ReadyCareShop: A store that will contain new technologies coming out designed for family caregivers. Things like a startup I ran into that has a lighting system that lights a path to the bathroom from the care recipient's bed to reduce falls.
The story of how ReadyCareConnect came to be...
...over the past twenty years I have worked on one thing: honing in on the reasons why people feel like they can’t do something, and getting them to change their story about themselves, to empower them to change their behavior. I have had two exits using this model, and am about to have a third.
From tablet-based literacy programs in rural India in 2003, to getting college students to be more honest about how much alcohol they consume, to working with the spouses of patients that are HIV positive, but are not out of the closet, to face their lives and start taking medication. Over the last four years, I have been working with professional caregivers in Skilled Nursing Facilities, Independent Living and Assisted Living building programs to inspire them not only to do their tasks but to understand the meaning of the work they did and to become heroes of their career.
As I was more and more immersed in the concept of the "Silver Tsunami", and started to think about all the people that want to age-in-place and how that will play out with the Boomers, I began to consider branching out into homecare. Based on my experience in elder care, and as a serial entrepreneur, I observed that the family caregiver was a huge “market”. That was how I was referring to it. A market. A word inherently devoid of humanity. I know most of the players in this space, and I just spoke at TEDMed on the subject of caregiving for goodness sake.
When I started this IDEO challenge, I had a concept to create a video series and thought that I knew exactly what I wanted to do. I thought you know, 'I have got this down'. But what I realized is that caregivers don't have time to sit down and watch a bunch of videos. They want tools to help them. They need practical help. They need community. They want checklists and templates and things that save them time and money.
This testing process shifted my perspective dramatically. It has been humbling, inspiring, and has served to inform the proposal I am submitting.
The short answer is, they are all of us. Either now, or in the future all of us will either be a caregiver or be cared for. They come from all backgrounds, take Kelly, a 55 year old woman that left her PhD. program in Philadelphia to care for her mother..and then her aunt and uncle..and then a friend...and then rescued an aunt with dementia out of an elder abuse situation. She is working in minimum wage jobs now, and this is what she has to say:
“It is hard. It is hard. Sometimes I wanted to run away. Sometimes I wanted to kill her. You know? You have to have patience. But, I miss taking care of her. I miss that time. With my Aunt Gwen, she was so nasty all her life and I thought how did I end up having to take care of her? But we couldn’t just leave her with her son who starved her to the point that she had only one week to live if we hadn’t rescued her. On a human level I couldn’t leave her. Sometimes I think, what would my life had been like if I hadn’t become a caregiver? Would I have a high paying job? But I would live in a cardboard box if it meant that I could have my mom back and care for her again”
Family caregivers of those with dementia are a reflection of the best aspects of humanity, but they could use some help.
The Business Challenge
As I listened to the caregivers it became clear that they knew what they needed:
1. People need organizational help. They are not professionals. They didn’t go to school for this. They don’t know what they don’t know. They don’t know where they put the medication bottle that has the name of their doctor, what services are out there, what forms they need to fill out.
For instance, Leanne, who cared for both her her mother-in-law and father-in-law as their health and mental health rapidly deteriorated over two years said:
“There are no online things to help. Everything just seemed like a data aggregator. There are things here and things there, but there aren’t even checklists or templates. You are going through this so quickly, and your brain just shuts down and you forget to ask rational questions and I wish I had a list of the right questions to ask.”
Even the most organized people I spoke to need help in this area, like Kathy, who lives in VT, and has a whole network of family that help her aging father be able to age in place. Still, when I asked her if she had a plan financially and logistically if his dementia accelerated before his health deteriorated her response was,
“Oh no. Gosh I should shouldn’t I?” and then with some urgency in her voice, “ I guess we should put away all his guns somewhere.”
2. People feel alone and unseen. They feel resentful of family when they don't step up, and yet grateful and proud of the work they have done. They amass a ton of knowledge as they go through this process, but it is lonely and they feel like their friends can't relate to the challenges.
Take Aaron, a 36 year old man that left his Bachelors program to go home and take care of his mother who was dying of cancer. His mom lived with his grandfather who is blind, has dementia and diabetes. After Aaron’s mom died his grandfather became convinced that Aaron was trying to kill him and that he had killed his mom. Can you imagine? Here is what he had to say:
“I avoided taking calls from my mom for a year because I knew my mom wanted me to come home to take care of her. When I finally went back, I had no idea what to do. I was just winging it. All of my friends were terrible and told me to leave and go back to school. They didn’t understand why I was doing it. And then, after my mom died, when my grandfather accused me of killing my mom and poisoning him because his dementia was accelerating, well that isn’t what I wanted to do after my mom had just died.”
But Aaron didn’t abandon his grandfather, he ended up rescuing him from an elder abuse situation and is still living with him. Aaron also got cancer himself and still stayed with his grandfather. He says he has no friends and he is so alone. No one understands.
3. People have raw, ugly, painful questions, and don’t feel like they have a trusted adviser or coach to help them. They also just wish they could get more information on things like medications and what to ask their doctor.
Take Ellen, after her mother’s mental acuity was slipping “big time” she had this experience:
“Then a real challenge, which still kind of angers me--I worked with my mom after a hospital stay on what she wanted to take to a care facility. I thought she was coherent but learned that the pain killers she was on were still in her system--and she wasn’t cooking on all burners. So we spent her last years with her asking where her things were. I think the meds accelerated her dementia and we weren’t told that it could happen and then they just released her from the hospital and I was like--where is she supposed to go?”
Summary of the Challenge/Problem
The primary areas that need to be addressed are organizational, getting personalized answers to their pressing questions, and finding community.
What is the current process by which people address these needs?
My next step was to look at how they tried to address these challenges. I read about how only 7% of caregivers use technology developed for caregivers, so I knew the last thing we needed to do was just to throw up a another app, service or video program. We need to solve their actual problems and do it in a way that flows into their life process.
So when I asked about technology, the answers I got were pretty clear, people would ask questions in message boards, they would Google, look up things on WebMD, connect on Facebook and would ask trusted family that had gone through this for help. They weren't downloading apps.
They weren't hunting for things that they didn't know existed, like Kathy who said her father, who was a professor of history, now only watches infomercials. When I asked if she would use a tablet with programs to entertain him, she said,
"Of course, but I didn't even know that existed."
Solutions are being built in a vacuum and in silos, and we need to connect users to services, and also let them know that services exist! This is critical at this moment in time as new technologies are hitting the market and yet are not connecting with users at scale.
The caregivers were using technology that answered their problems...approximately. This was great news because it meant they need those questions answered and it is just not working in the current format. Plus, 80% of them had smartphones and 90% had Internet.
What this means for me as an entrepreneur is that we have a demonstration of need/intent and don’t have products that are fitting the market.
To find out how we could develop an application that actually worked for our users we tracked first what a user journey is like now and the difficulties they encountered and then imagined ways that we could help using the platform we were conceiving.
User Journey Without ReadyCareConnect
Kathy, 55 is married with two children still at home. She and her husband work full-time. They have a close-knit family and she has two siblings that help her. They rotate living with their dad who is 86 and has dementia. A typical day for Kathy after a night staying at her dad's would entail:
5:00 am get up and dressed. Get dad his medications out of the lock box (he sometimes takes ones he isn't supposed to.) Dad yells at me because he gets confused and can be grouchy.
6:00 am Make breakfast and get dad settled in the armchair in front of his favorite shows. Get a load of laundry in.
7:00 am Drive home and pick up kids and take them to school.
8:00 am Go back to Dad's. Take him out for his morning drive. Try to talk to him about mom who just passed away. Dad has an accident and we head home. I call my husband to leave work to help him to bathe because I don't feel comfortable as his daughter. I wish I had some help with this but I don't know who can help.
10:00 am Drop dad at home with the home health aide and head to work until 5 PM. Dad zones out on infomercials all day. I ask her if she can help him with his meds but she says she is not allowed to do that because she is only a home caregiver and she could get sued. While I am gone I wonder how he is but I don't have time to call. I realize I missed an appointment at 4pm but call the doctor and he says I can come in at 5pm.
5:00 pm pick up dad and take him to doctor. Doctor confirms that dementia is progressing rapidly. I explain that my dad won't take the medication that would slow down the dementia. I am sure I should ask more questions but I just don't know what to ask! He suggests we take him to the hospital so that dad can get checked out. Dad throws a fit and says he doesn't want to die in a hospital like my mom. I don't know what to do about this. It is so hard to see him this upset.
6:00 pm Go to the pharmacy but realize I left his medication bottle at home and I think the pharmacist has the wrong prescription. Search through my photos on my phone to find a picture of the medicine bottle. Drop dad at home.
7:00 pm Go do shopping for both households. Make dinner.
8:00 pm Go online to try to figure out if dad needs to go to a care facility. Try to wade through to figure out if Medicare would pay for it but I give up. It is like they try to make it intentionally confusing. Try to look up if any kind of caregivers can give medication. Some forums say they can but others say that is only in different states. Get frustrated. I haven't had time to shower or to have a proper meal. I haven't spent time with my kids. I just feel like this is so overwhelming. Thankfully my sister is with my dad tonight.
9:00 pm call my sister and see how dad is doing. He has had his regular two strong drinks and is in bed. I wave goodnight to my husband and go crash.
So how are we going to make this day better? What if we could develop an environment, a habitat, that answered caregiver’s questions and grooved with their life? What would that look like?
ReadyCareConnect is a place where users get their important questions answered by experienced caregivers, a community of caregivers, and our AI engine that aggregates information on issues like Medicare or services available. The system also is an organizational tool that allows you to save documents, get reminders on medications and appointments to save you time and money.
Finally, a single place to go to get all the info you need, to store your important documents, to keep track of doctors and medications, to get suggested documents you need fill out, checklists at each stage, and a community that is staffed with caregivers that have been there and done that.
ReadyCareConnect is the first platform that will be a hub, community and resource all in one place. It will combine four core features:
1. Meet ReadyCarePlan
An organizational portal to keep track of everything when everything is moving so quickly.
- Store documents
- Store medications (with refill reminder)
- Store doctors
- Checklists for different stages and activities
- Store any answers that you get to the questions you ask
- Things to keep in mind - suggest activities
- Service providers that you could consider like eldercare lawyers, food delivery or home health companies
2. ReadyCareCommunity and ReadyCareNavigators
People need community and unstructured places to vent, rant, and share information. We know they want this because this is something they do already. I have spent a bunch of time looking at what we call “Third Spaces”, spaces in-between work and home where people gather to meet and talk. Our community should operate like a third space.
We are creating a habitat where people can connect around different subject areas but instead of the responses getting lost in the shuffle we will be adding the responses to our AI system so it begins to learn about conversations that have already taken places and gives answers from other people. So for instance, the question of “Are these symptoms of dementia”
The answer to that will be from other caregivers and also you will be given answers to similar questions that were posed on earlier threads.
One of the most important things I learned through this Ideo process is that people want to share their stories. They were in the trenches and like someone returning from battle or a woman after she gives birth, they want to share the ins and outs of what they learned.
I want to leverage that idea to create a space where current caregivers or former caregivers that have been doing this for awhile and have learned a lot can become ReadyCareNavigators. Users can request to meet with a RCN to get personalized help to either think through a problem or to hear how they solved the problem. The system will match people (similar to dating) with people that have faced similar issues or have similar demographics.
They share their experiences, learnings, and hope.
There are many benefits to a community system built with coaches like this:
The biggest one is addressing the profound loneliness of caregivers and how many caregivers feel unseen. Being seen and acknowledged by your peers is huge, especially since most people I spoke with felt like their families completely underestimated how much work they were doing. It is an intentional community that is built by people that have paved the way.
The other key benefit is that I think it is possible to structure this in a way where the RCNs receive some payment for either their time or the effectiveness of their responses.
User Generated Data
As RCNs answer questions and help people to navigate the information they provide will continue to inform the AI system, making it more intelligent and responsive.
People have messy, ugly questions that are scary to even think about. Things like,
“What's the rate of suicide amongst Dementia caregivers, because I'm about to lose my sh!t?”
They need immediate answers that can help them to navigate the process. This Answer section also serves as the gateway to the rest of the site. The user journey is such that many will come to the site because they have a question that they want an answer to. But sometimes those questions are more complicated, like signing up for Medicare or understanding what, if any, medical actions a CNA or Home Health Aide can take.
ReadyCareResponse will be driven by our AI system that is ingesting data being fed to it from the community and resources that we determine will help our users. Most of the info is out there but right now it is all noise. This will give us the opportunity to find the information that is hidden in the haystack.
One thing that came out of our interviews is that families that have some financial stability are looking for devices, products and solutions to help them or their loved one to age in place. We believe this could also be a revenue driver for the company.
Many people we spoke with talked about needing help with small things but really only feeling like they could pay for Home Health Aides that often have minimums of four hours. I believe a section of this offering could be a sort of TaskRabbit for caregiving.
Meeting their financial needs
The range of spend by caregivers was a lot; Leanne said at some point they were
"....hemorrhaging money. We were spending $25k a month on 24 hour care, plus food, plus medicine. It was crazy."
Carol said her mom, that she cares for from afar, has financial means and still when she last went to her house no one had changed her mom's sheets for weeks and her sister hadn't checked in to see how she was doing.
But many caregivers are strapped financially. They are juggling kids, careers and their parents and many make tremendous sacrifices.
Because of that we will be testing several models for the product:
1. A freemium model with an option to upgrade to get some of the services. If we do it this way we shouldn't ask more than $120/year.
2. Free to end users and paid product placement in the program.
3. Pay as you go for CareNavigators, sort of like Uber meets care coaches.
In the next phase we will test price points and determine the best way to grow the business while remaining affordable for our users.
User Journey with ReadyCareConnect
5:30 am get up and dressed. Spend 20 minutes meditating, which my ReadyCareNavigator has been nagging me to do (lovingly). Get reminder to give dad his meds. Get dad his medications out of the lock box (he sometimes takes ones he isn't supposed to.) Dad yells at me because he gets confused and can be grouchy. But I know I how to handle it from the checklist I ready on how to handle a grouchy parent!
6:00 am Make breakfast and get dad his iPad with the apps downloaded that are designed for seniors with dementia. Laundry service I found about on ReadyCareConnect picks up the laundry.
7:00 am Drive home and pick up kids and take them to school.
8:00 am Go back to Dad's. Take him out for his morning drive. Try to talk to him about mom who just passed away. Try to use some of the techniques I learned about on ReadyCareConnect. Dad has an accident and we head home. I call my new home care helper who is trained to bathe seniors and doesn't take no for an answer. I am glad I found her using ReadyCareConnect.
9:00 am Head to work. Dad's mind is activated through games, entertainment and music designed for seniors that I learned about on ReadyCareConnect. I know the professional caregiver can't help him with meds. While I am gone I wonder how he is and check in using the iPad to see how often he used it using an app I learned about on ReadyCareConnect.
3:30pm ReadyCareConnect reminds me about a doctor's appointment at 4. Pick up dad and take him to doctor. Doctor confirms that dementia is progressing rapidly. I come with a list of questions for my doctor that I formulated on ReadyCareConnect. I explain that my dad won't take the medication that would slow down the dementia. He suggests we take him to the hospital so that dad can get checked out. Dad throws a fit and says he doesn't want to die in a hospital like my mom. I know this is normal and I text my ReadyCareNavigator to vent. She texts me back that "I have got this."
5:00 pm Go to the pharmacy and look up medication in ReadyCarePlan.
5:30 pm Go home and unpack AmazonFresh groceries, learned about service on ReadyCare. Use Seamless to order dinner because I know I am tired and should take care of myself better, I am glad I learned about self-care on ReadyCare.
6:00 pm Sit down with my family and have dinner. Help my kids with homework.
8:00 pm Log into ReadyCareConnect. Use ReadyCare Answers to figure out how to navigate Medicare. Look up the costs of care facilities in my area that take my insurance in ReadyCarePlan. Touch base with my ReadyCareNavigator and make a plan for tomorrow. Text my sister to thank her and check in on the app to see how much time my dad spent doing activities.
9:00 pm Husband and I sit down and chat and catch up on each other's days. Watch Netflix a bit and crash.
With ReadyCareConnect your life is simplified, less stressful and more connected.
So, why us?
I have a passion for this space, a background in building successful startups, a reputation in the health tech world and the ability to raise money to make this actually happen.
My partner is a Stanford trained mastermind in product design. We have been working on AI for several years and have been IBM partners.
Plus, we have the fire and ability to actually scale. I believe that this is critical for the aging population and caregivers that support them.
How we are addressing the IDEO Challenge
In this challenge, we decided to look at the following four aspects of the challenge. I will describe how we are addressing each of these with the ReadyCare product:
Alleviate the burden of caregiving for dementia by helping to manage complex behaviors of the care-recipient
One of the burdens of managing complex behaviors is knowing and understanding what those behaviors mean and how serious they are. One of our interviewees said the following:
"I don't know when to worry. Is this a big one for me? I don't know how worried to be when every incident is life or death. It is hard to balance how you respond outwardly to the person."
ReadyCareConnect response: we give people peace of mind by helping them to determine the appropriate response to different things happening. Instead of searching on a million sites they can get info right away. In addition, we give them tips on how to emotionally manage the symptoms they are seeing.
Enable emotional and physical resilience of dementia caregivers by instilling a sense of purpose in their work
One thing that came up a lot in the interviews was how much information that people that have been caregiving for awhile had, including perspective on how hard it is and how rewarding.
ReadyCareConnect response: our community is being developed with the idea that caregivers that are passionate about it can become care navigators. This is both instilling meaning into the navigator and the caregiver that is learning from them. How this would work, caregivers when they sign up for the community would have the option of a premium subscription that gives them access to coaches that have been through similar types of challenges. This has the two-fold benefit of decreasing isolation and increasing the emotional resilience and sense of purpose in the newer caregiver.
Improve the ability of the caregiver to provide better quality of in-home care to the care-recipient / loved one
ReadyCareConnect response: we will provide small teaching nuggets on frequently asked questions like, how to safely give an injection or how to bathe your parent. With over 20 years in stimulating education we believe that we can help to assuage any fears and empower people to understand how to technically care for their parent.
Combat social isolation of caregivers
ReadyCareConnect response: finally, social isolation. Caregivers need a place to rant, vent, connect, learn and be with their peers. There are lots of places out there but with the added features of the navigators, the care path and care answers we think we will be able to attract a strong community of caregivers.
Keep people at the center.
Our product is designed for caregivers that specifically are managing the symptoms of dementia. We believe that what caregivers need is a place to talk, learn, and organize. In recognizing their humanity we realize that they need pragmatic solutions that help them to save time and reduce anxiety.
Our products will be tiered:
- ReadyCareCommunity is free.
- ReadyCareResponse platform and ReadyCarePlan platform will be premium services. We anticipate that being between $5/mo to $10/mo. But we will base the price on testing of the price points that work for our audience. This is something that will need to be determined following this challenge but we will be pricing for our audience.
- ReadyCareNavigators: we also intend to have a premium offering of coaches that can connect with individuals to provide help or just a listening ear. We anticipate that the price point for this will be determined as we build out the model, but again this product is not designed for the wealthy. It is designed for people that cannot afford to spend more than $200 combined on these services.
**It is possible that we will determine that the entire product must be free and that we will generate revenue through referrals to services. We will test this in our next phase.
We reviewed how caregivers are operating today and the primary way they are getting info is through Facebook, Google searches, WebMD, message boards and Reddit.
Our product is designed to be an option instead of a message board or Facebook, but to have enough added services to make it a more attractive offering. We are not teaching them to do something new, we are sliding in exactly into their process.
Our intention is to be the portal for all caregivers with loved ones with dementia. In terms of funding, our primary areas that we will invest in are marketing and product design. Getting in front of audiences to get a critical mass is crucial.
Goal: Determine latent user needs
We used an empathetic interviews to illicit the thoughts, feelings, goals, and desires of users.
Here is one example:
Our primary learnings validated the overall question about whether or not caregivers would benefit from a single location that would manage getting you to all the services that you need.
We were able to narrow down the services that should be included in version 1.0 of our platform and will continue to refine as we conduct more interviews.