How Families Can Think about Care Choices – Before a Crisis

November is Family Caregivers Month. Around 34.2 million Americans have provided unpaid care to an adult 50 or older in the last 12 months. Of those, 15.6 million are caring for someone with Alzheimer's disease or other dementia. 

Caregiving can be meaningful, but emotionally challenging: 38% of family caregivers report finding their situation highly stressful, according to research from the National Alliance for Caregiving and the AARP. 

In addition to the emotional work of taking care of a loved one's needs, caregiving often requires a substantial amount of logistical – and financial – planning. In total, 59% of caregivers report using at least one type of assistance on behalf of their loved one, including home modifications, transportation services, and requests for financial assistance resources.

That's where Antidote's partner, Roobrik, comes in. The company's goal is to help caregivers and their loved ones make informed decisions about their needs, and understand the best next step for them. We chatted with Nate O'Keefe, one of the co-founders of Roobrik, about how to make the caregiver decision-making process clearer and less frightening, and how technology can help support caregivers and families, too.

Antidote: Tell me a little about Roobrik and the problems you're hoping to solve in senior care.

Nate O'Keefe, Roobrik: I came from a digital health background, where I worked for around 10 years for companies that developed technology for healthcare providers. We were helping people make better decisions at the point of care and providing medical education. From that, I developed a good background in user experience.

My co-founder and I started Roobrik after we had separate significant care experiences, actually at opposite ends of the age spectrum. For me, it was with a premature birth at 26 weeks – my third kid was born early and is doing great today. My co-founder was a caregiver for her mother and her in-laws for 15 years. Our shared experience was just how difficult it can be to become informed online when you're in a care crisis or a health crisis. I think we're all familiar with these experiences where there's been a change: there's a diagnosis, an accident, a hospital discharge. You spend a ton of time on Google trying to better understand what you might do next, to get better context for the decisions that you might be making. You tend to get a pretty middling experience. There's a firehose of information, and a lot of it is very good and accurate, but the issue that we saw was that it's hard to see yourself in those solutions, because it feels like a really unique situation when you're in the middle of it yourself.

The information that exists on dementia, or on driving safety, or prematurity doesn't really do a lot to help you move forward in a proactive decision process. So we said, what if there was a platform that asked you a few questions? Couldn't it be much more curated in the results that it drove? So essentially, what if the Internet was a it more personalized and action-oriented for people who were in crisis? That's the general product philosophy. 

We took it to market specifically to address this vast need around aging in general, so all the way from the beginning phases of noticing changes, to end-of-life decision making. Our focus now is on the earlier side of the continuum. The need that we solve is most people we see tend to default to waiting for the crisis to act. It's so easy to not make a change — you don't know if it's the right time and you don't want to make those difficult changes, so you just wait until there is that serious event or hospitalization, or fall. But people do tend to notice changes in the months or years prior. So we said, what if we met people in those pre-crisis research phases with this assessment-based experience, where we asked some questions and provided results and action points?

The first few tools we built were around that. Is it still safe for dad to drive? Is it time for mom to get help at home? Is this dementia? We also worked with Antidote and UsAgainstAlzheimer's on a tool called, “Is clinical research right for us?” that focused on dementia and cognitive decline. It was designed to help people who might not be sure if they're even dealing with a condition decide how they can participate and become part of the clinical research process.

Antidote: I would love to hear more about how you started developing the project. It sounds like you have a user experience background – what kind of conversations were you having for input?

Nate: When we started the company, we were really interested in storytelling, and the power of storytelling to compel people toward positive action. The example that always resonated was NPR style radio, where Ira Glass does such a great job of telling a story, that you can see how that story was resolved for that person and hopefully that compels you towards making some kind of positive changes. Down here [in North Carolina] we have a great public radio station, so we found a producer, worked on some story capture, and built this really rich set of content around the eight or nine components of making a care decision. 

We began testing that. Caregivers were saying this is beautiful content, we love it, but we would never use this in a crisis. What they did like was that we had asked four or five questions leading up to that content that helped prioritize how the content was displayed. That really resonated. They said they felt like it was taking into account what was important to us. So that was a key early insight: focus less on trying to develop a rich content experience, and focus more on developing a more pragmatic, practical assessment. People are interested in answering the right questions at the right time. And that's how we developed these 15 to 25 question assessments based on the principles of shared decision making in medicine. We found that to be a great model that wasn't generally used in consumer-accessible content, or patient-accessible content.

Antidote: Tell me more about the shared decision-making model you mentioned.

Nate: We didn't invent it – we just happened to come across it in our early days. Shared decision making, in broad terms, is your healthcare provider working with the patient and/or caregiver to step through a decision process. Usually it takes longer than most patient visits, and many physicians are not trained to do it. But when it does happen, it results in better outcomes. To facilitate that, clinicians have developed what are called decision aids. A decision aid should do three things: 1) It should inform you about the facts and options of your situation; 2) it should evoke your values and preferences – so, what's important to you and your family; and 3) it should illuminate the path ahead. The idea is that decisions are not being made in a black box. 

We thought that was a really beautiful framework and one that we lamented was not more widely available to people who are in this pre-acute research mode. So we began building these assessments with that philosophy in mind: How can we make sure that we're gathering some information that would be useful to a health care provider, or a social worker, whoever reads the assessment results, but also will engage that patient or family member in thinking about how they can best move forward? About half the questions are those clinically relevant questions, and half are designed to empathize with who that person is, what their concerns are, and give them a safe place to share and explore those concerns.. 

Antidote: What are some of the main concerns people are thinking about in that pre-acute stage?

Nate: There's a geriatrician in the San Francisco area I met who framed the main conflict in family caregiving as the struggle between safety and independence. The older adult is almost always prioritizing their independence. The family caregiver is almost always prioritizing safety. Often, interventions that maximize for safety, don't maximize independence. When people are in these early phases, it is a concern about, is dad going to get lost or drive off the road? Is mom repeating a story a big deal? Should she start seeing a doctor? Should she change her diet? Should she start getting more exercise? Is there something we should do about this? How can we prepare? Unfortunately, I think It's mostly fear and panic driven. We've noticed a change, it's scary, we don't know what to do about it. 

The goal of our tools is to allow you to articulate what you've noticed and give you some sense of what it all means. By the time they've found us, most people discover that their gut feeling is right. There often is something going on, but not always. 

To take one example, there's been a societal narrative around there being a point at which it's time to take away the keys from older adults. That's seen as a thing that has to happen, a milestone. We found that to really not be true. There's a lot more nuance, because people tend to self limit as they age. Even younger people can empathize — maybe even in your 30s and 40s, your vision changes and you start to notice you don't like making a left turn, or driving at night into the rain isn't as easy as it used to be. You might begin to alter your driving habits. Maybe you'll run that errand tomorrow, or you'll go around the block to not have to deal with that intersection. Self-limitation as you age is a natural tendency.. It becomes a challenge when that's no longer a safe option — when there's confusion between the pedals, or someone needs a copilot to help navigate. This goes beyond self limitation and speaks to serious issue and less of a likelihood that it's safe for them to continue driving.

Antidote: It sounds like there's more nuance than what people typically think when it comes to these questions.

Nate: There should be. If you think about those two levers of independence and safety, if the societal narrative is to take the keys away from older people and put them in a home, that's just taking that safety lever and slamming it to the top of its range. Forget independence! 

I think successful caregiving involves constant attention to those two levers. I think that can be a really useful framework for people struggling. When we change one, how does it change the other? Is there something we can do about the other one that can ease that burden? So with driving for instance, if it really is no longer safe to drive, how can we provide opportunities for engagement, how can we fill those needs that driving met that would be more difficult now? Having a plan that you can present to the person you're caring for that shows you're thinking about that can help. None of that's easy. None of it happens instantaneously. You need to plant seeds in yourself and other stakeholders and bring up conversations in gentle ways. 

Antidote: How far in advance do you need to plan for senior living facilities?

Nate: If you think about that concept of Illuminating the path ahead, we all hesitate to make decisions if we don't know what lays down the road. But it's important to understand options. That way if there is a crisis, we'll be more informed than we would be otherwise. It can be as simple as doing an assessment like ours, or reading some articles, or talking to friends who have had those experiences. You can say, this is interesting, it's something that might come up in the future. I can almost be academic in my interest in it. And then you can try to find an intervention that's palatable pre-crisis — maybe it's home modifications, or participation in a clinical trial. That pre-search is never a bad thing. Otherwise, the status quo is that you have a hospital discharge, then you need a full-time residential care option in a day or two. Instead, let's peek our head in that door a little bit earlier, and maybe we'll find that things might not be as scary as we thought, if we have to deal with them.

Antidote: What are some of the startups or new products for aging or care that have caught your eye?

Nate: There are people who do simple but really important things like home modifications that are de-stigmatized, like grab bars that don't look like institutional grab bars. Zero-entry showers, zero-entry doorways. Wider doorways. These are things that could become the norm for people of all ages or abilities. Right now, there's a stigma around things that have this geriatric feel and marketing to them. 

That's the low-tech stuff that's been around for years. From a tech perspective, there's a lot with sensors, things that monitor, theLifeAlert sorts of products. Those can feel stigmatized as well. Having this pendent or this necklace, maybe I do feel safer but I don't want to admit that it's something that brings me comfort.I think one of the things that a lot of people are bullish on is voice. There's much greater comfort with having a device in the house that you can have a conversation with. Even just having a voice that speaks back to you, driven by AI or an algorithm. It does a couple of things: it provides some engagement, and the system can measure signs of activity. There are platforms that can say mom's up and having a conversation, or turned on the coffee maker. Things that are more passive and not stigmatized. There are people who are going very deep on that and have lots of fascinating data there. I'm just scratching the surface. 

Antidote: Have you noticed if there's concern around older people being able to use the technology? Is usability a big topic?

Nate: I think it is. I think generally when it comes up in discussion, it's that we shouldn't have such low expectations, particularly for touch-screen devices. A lot of older adults use contemporary phones and tablets. In our world, whenever we start working with a new senior care provider, they're always blown away by the number of older adults who are willing and interested in going through an assessment that talks about care needs.

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