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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
15 22

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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

15 comments

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Photo of Brittany Margot
Team

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 bmargot@ideo.com.

Photo of Kevin Shields
Team

I think this idea would benefit from tools people can use as part of their experience.
Examples:
1. A team effort is always the best to reduce the overwhelming nature of 24/7 care. Some friends and family may be able to help, even if it is limited ways. Create a system to send out to your circle for people to sign up on tasks they can do, or have talent at. Such as Driving to appointments, arranging appointments, sitting in while you take a breather, managing insurance, finding resources etc. A tool to help people find ways to help and put the puzzle pieces together.
2. A link to a calendar system friends and family can use to schedule in what they can help with based on needs.
3. Tip of the Day. A bulletin board where people can list tips that have worked for them. Reviewing such a list could be overwhelming. These could be 'up voted' by attentive readers to be broadcast as "Tip of the day" -If your loved one freaks out at doctor appointments, have the doctor meet you at the cafeteria or coffee shop and tell your loved one "let's get some tea".
4. A link to standardized legal forms that care givers would need- Release of information, Consent to act on my behalf etc.
5. A state by state template to show what social services your loved one qualifies for and what adjustments in the situation would help them qualify for the resources they do not currently qualify for. In California, if you have less than $2,000 in the bank, you qualify for Medi-Cal insurance, which qualifies you for In Home Support Services offering up to 283 hours per month funding for a personal care assistant. That would be a huge help for a care giver on their own, but it takes years to learn the little tricks needed to get those services. A survey of your family resources that shows what support services you could qualify for with a little twist here and there could be a huge game changer.

Photo of Kate Rushton
Team

Hi Dianne,

Have you thought about how this could scale?

Have you seen this idea in the new life challenge - https://challenges.openideo.com/challenge/new-life/evaluation/postpartum-pay-it-forward-project? It could be an interesting source of inspiration.

Photo of Dianne L Chen
Team

Thanks for the link, Kate Rushton !

In terms of scale, we are looking to streamline or automate as many administrative tasks as possible. Other possible avenues to scale may be through: searchable FAQ/Q&A bank (similar to Quora), virtual mentorship sessions, showcasing mentors of specific topics, and partnering with support groups/chapters in recruitment and programming.

Once we prototype and test, we can take findings into a pilot program to further refine the mentorship experiences.

Photo of Susan
Team

This idea awesome - a better version of a respite care idea I had suggested, and which is covered in your bigger idea. I hope you win!

Photo of Dianne L Chen
Team

Thank you, Susan. Your research contributions and insights are very helpful!

Photo of Barbara Will
Team

Hi Dianne,
I really like this idea. I work for a non -profit senior support program as the Family Caregiver Coordinator and any tools we can come up with to support a caregiver is valuable. I run a monthly support group and currently have three clients who have lost their loved one but return each month to the meetings because they still feel they can offer advice and help to those that are just starting the caregiver journey. If you would like feedback during the refinement process I would be more than willing to share your ideas with my clients.

Photo of Dianne L Chen
Team

Hi Barbara Will ,
Thank you for your insight and feedback! My team and I would love to stay connected for feedback as we move through refinement. Please send me an email at hi@diannelchen.com (your private messaging is disabled).

Photo of Tonia Porras
Team

Hi,

This is an interesting concept. But how do you plan to "screen" these caregivers? And what about the non profits. Similar to the internet, there are so many avenues to go down that it can get overwhelming for a caregiver, along with not knowing what advice, programs, etc are legit, successful, and the like. Do you have a "screening" process of any kind?

Photo of Dianne L Chen
Team

Hi Tonia Porras ,
Great point. Screening would be an important part of maintaining quality in the network. We will initially partner with a few select nonprofits that are well-known in the space. With further testing and feedback, we will be able to revise the screening criteria for our pilot mentors and to refine the mentoring experience.

Photo of Sarah Dzida
Team

Hi Bettina Fliegel Thanks so much for your comment and questions. Let me give you some answers! :D

With regards to who keeps the website updated, we haven't designated a specific party for that. But we would most likely start with the nonprofits. They have the resources to populate the site and make it valuable region to region. They know each other and can bring other organizations into the fold. And they want people to know they're available. So at least for starting out, that's probably where we'd begin. The mental model we used was how master gardening programs work; people are trained and certified by academic institutes then volunteer in the community to maintain their active "master" status. Those institutes and those volunteers form the networks that define the what a master gardener is.

Nonprofits like our teammate Monica already have lists of mentor caregivers—people who have used their resources and whom these organizations link to new caregivers. So these are the community groups we'll tap into first. In Kevin's case, that's how people reach out to him. Through the organizations he's worked with or by word of mouth. It's a great idea to reach out to groups people are already affiliated with, and what we would hope for would be for those groups to add to our database of active mentors.

And the fee-for-service model is very interesting. That would be something to test out in the prototype. But overall, what we found in our empathy research (there was also a alzheimer's walk in LA that weekend before), was that former caregivers were very passionate about helping out no matter how much time separated them from when they did the caregiving themselves.

Thanks so much for the feedback!! And good luck to your teams!

Photo of Bettina Fliegel
Team

Thanks for the info Sarah.
Do you envision a certification of some sort for the "master caregiver" in this program, as a master gardener has?

Photo of Susan
Team

"former caregivers were very passionate about helping out no matter how much time separated them from when they did the caregiving themselves."

As a former caregiver myself, I can vouch for the truth of this statement!

Photo of DeletedUser
Team

DeletedUser

Sarah Dzida Bettina Fliegel Dianne L Chen - I love the cross-pollination that's happening across the events and Chapters :) This is awesome.

I wonder what you might be able to learn by showing the prototype of Hive Mind and have interested caregivers like @Margaret Spring and @Kevin Shields interact with it and give you feedback.

I also wonder if you could go deeper into the incentives both to participate as a 'master caregiver' and as someone who is learning. This is so great, excited to see how it's developed since the events! Great work team.

Photo of Bettina Fliegel
Team

Hi Team.
This is a great idea! A similar idea was shared during ideation at the NYC OI Dementia Workshop last week by the caregiver in our group, Margaret Spring . She was interested in exploring how former family caregivers might utilize their skill sets going forward.

In Hivemind who will update the website so that local resources are there when a new caregiver goes onto the platform? What will motivate non profits to input former caregivers to the platform? In Kevin's case how are people finding him as a resource? Is it word of mouth?
I wonder if there is a way to use Hivemind to connect new and experienced caregivers within local community groups that folk might be already be affiliated with? (religious organizations as an example.)

Have you thought about a fee for service model in which former caregivers share knowledge and skills with new caregivers? I wonder if this might benefit caregivers who may have lost income due to their caregiving responsibilities.

Looking forward to watching Hivemind evolve!