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Hivemind - caregiver mentoring network [updated 12.25]

Hivemind is a pay-it-forward social network where former caregivers can offer support, aid and resources to new caregivers and nonprofits.

Photo of Dianne L Chen
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Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

New family caregivers are overwhelmed and lost with how to navigate their new realities. Former caregivers are still passionate about giving back and can participate actively in this community based on their schedule and knowledge base. Also, nonprofits can connect those caregivers with their resources and networks.

Refinement phase update

After ideation, we sought to gather feedback and understand the needs of new and experienced caregivers. 

From our survey results, we received a short sample that indicated that new caregivers have a strong interest for a mentorship network. We also found that while former caregivers definitely wanted to be available to new caregivers, they were particular about how they were communicated with.

Therefore, we are planning to conduct more research and gain further insight, to develop the mentorship structure and framework, and to test a pilot program and learn from the findings.

Original Empathy Research

At our Los Angeles design workshop, our team had a unique insight because of our empathy research. Our two caregivers were not looking after loved ones currently. Instead, Kevin had been the primary caregiver for his grandmother 20 years ago, while Monica worked with caregivers and dementia patients at a nonprofit to help them navigate this disease. What we learned from our empathy research was that they had a long perspective of the whole process. 

Caregiver Journey mapping

Even 20 years later, Kevin still receives phone calls from new caregivers asking about what they should do, and he is actively engaged in helping them. He had gotten more involved in caregiving in his career after his grandmother passed. And Monica, of course, had a very good understanding of all the resources that organizations could make available to families and patients; Kevin also agreed with this. Each felt that the resources were out there, but that new caregivers were so new to an overly bureaucratic system, that they felt unmoored.

Enter Hivemind.

The online interface attempts to connect three user groups. 

  1. The first user group is new caregivers. They have just entered a fraught time period at the beginning of the diagnosis. They are looking for answers and help. They will most likely start by searching online for some key phrases.
  2. The second user group is non-profits. These organizations have lots of resources and people to help. It just requires time for these new caregivers to potentially tap into them.
  3. The third user group is former caregivers who still are tapped by these organizations and new caregivers AND want to give back anyway.

New caregivers go to the website and input their location via zipcode. The interface provides results of nearby organizations and resources. It also provides profile results from a directory of former caregivers. In the profile, new caregivers will be able to see how close the former caregiver is, if they’re willing to meet up for coffee, if they know about resources, a description of the type of care they had to provide for the disease, etc. 

These former caregivers are recruited into the directory by organizations and nonprofits who most likely already have these contacts. By having automated profile setup and matching, this frees up administrative time for nonprofits. Each former caregiver signs up and fills out a profile. Their profiles show up in results only if they are “active.” Active profiles agree to provide a set amount of volunteer time every month. For example, they might agree to be available to field phone calls 24/7. Or they might decide to host local workshops. Or they agree to watch dementia patients to help out a new caregiver.

Hivemind sketches

All in all, what Hivemind tries to do is connect robust resources that already exist to new caregivers and their families. Our hope is that this will benefit pain points felt by anxious new patients and the people who love them and only want to do what’s best.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

Two of our members work with Mary S. Easton Center for Alzheimer's Disease Research at UCLA and Cedar Sinai's neurological department. We can test, prototype, and refine with them and their organizations. In fact, the day after our design thinking workshop, one of those teammates said how an immediate a difference our idea might make for one of her support groups.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

We welcome feedback from new caregivers, former caregivers, and other nonprofits in this space.

How long has your idea existed?

  • 0-3 months

This idea emerged from

  • A group brainstorm
  • An OpenIDEO Outpost or Chapter

Tell us about your work experience:

Monica and Kevin work closely with caregivers and their families. Dianne and Sarah are UX Strategists. Hever has experience in marketing research and caregiving. Kim is CEO of a digital healthcare product. Our combined industry experiences cover healthcare, consumer products, and nonprofits.

How would you describe this idea while in an elevator with someone?

Hivemind is a volunteer network that connects new caregivers to experienced/former caregivers in a structured mentorship. The mentorship focuses on sharing caregiving experiences, emotional support, and orienting people to caregiving resources and nonprofits. New caregivers that join the program make a pledge to give back and mentor.

How does your idea demonstrate our Criteria of Accessibility?

Hivemind seeks to augment the efforts of nonprofits and facilitate more access to mentorship and support. Nonprofit operators will scale from Hivemind framework of templates, processes, and platforms. - Nonprofit personnel costs are only 1-2 hours per week or month. - Responsive website (accessible for all devices) will be paid for by donations. - Mentor are unpaid volunteers. We can consider aggregating discounts and benefits. - Mentee access is free, with a pay-it-forward pledge.

How does your idea demonstrate or plan to demonstrate scalability?

We are planning to first nail down the framework & run a pilot program. Through a co-development process, we will incorporate findings from different cultural groups to evolve Hivemind to be flexible & culturally relevant to diverse, underserved communities. From there, we will roll out the mentorship program with established partners before releasing it as open-source to all. The outreach/recruitment for the “mentor pool” can be scaled via assisted living facilities and memory centers.

How do you plan to measure the impact of your idea?

Impact measurements could be: - Overall satisfaction of mentees (new caregivers). This could include pre and post-use measures by mentors and mentees. - Positive feedback from mentors and mentees - Positive effects on nonprofit resources - Growth rate of the program and mentor participation turnover and future use consideration

What are your immediate next steps after the Challenge?

We plan to conduct more research: - Interview experienced/former caregivers on communication preferences - Ask for feedback & interest levels - See if & what social/cultural variables affect caregivers to develop flexibility - Uncover the motivations why people share or are looking for info, and also how they want to do it AND why they won’t. - Run a pilot program with Monica's group and participants - Identify orgs to help scale into & address underserved communities


Join the conversation:

Photo of Brittany Margot

Hi Dianne L Chen + Hivemind team - welcome to Refinement!

We're eager to see updates to your idea and learn more. Don't forget there are a few additional questions now that you're in the Refinement Phase. You can see them by clicking "Edit Contribution" and scrolling to the questions that don't yet have answers from you. We also encourage you to add a user journey map and start thinking about a small experiment you could test in the next few weeks. Perhaps testing with both caregivers and care-recipients? Gathering feedback? Please reach out with questions! or feel free to email me at

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