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Hello Caregiver: Your Helper in Alzheimer's and Dementia Care (updated 12/26)

A digital conversation tool that informs, supports, and prepares unpaid caregivers of older adults with dementia or cognitive impairment.

Photo of Margaret Spring
30 19

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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?

It is designed for the overwhelmed & isolated caregivers of individuals with dementia or cognitive impairment. Caregivers are often overwhelmed searching online. Many can feel isolated, reluctant to ask for help, and unaware how many share their experience. Our tool provides information in a more approachable way: a private, automated conversation — a safespace to ask hard questions. It raises topics we put off & bridges caregiver out of isolation toward supportive community resources.

OVERVIEW

Hello Caregiver is a digital conversation tool that informs, supports, and prepares unpaid caregivers of older adults with dementia or cognitive impairment. As it learns more about the caregiver and care-recipient, it initiates automated conversations that provide guidance around caregiving & self-care. These conversations explore caregiving techniques, topics, and terminology (e.g. “power of attorney”, “activities of daily living”, “redirection”). They also connect the caregiver with relevant, local services (e.g. adult day care centers). By empowering caregivers with knowledge and support systems, Hello Caregiver hopes to fight caregiver burnout and isolation — and to promote well-being for both caregivers and care-recipients.

To maximize our reach and allow for fast product iterations, our prototype exists as a web-app that’s usable by anyone with access to the web on their phone. Hello Caregiver is a resource that caregivers can access at any time, but what sets it apart is how it reaches out to the caregiver with brief, simple, practical advice. That way, caregivers can cover the broad swath of information in a way that is easily digestible and comes to them

Currently, the prototype reaches out to caregivers by texting them, but we envision this happening across any platform the caregiver already uses (e.g. email, Facebook Messenger); imagine a caregiver receiving a Facebook notification about a new conversation from Hello Caregiver. And because the main web-app experience is simply a conversation, these same conversations can take be recycled for a variety of platforms (e.g. email, texting, Alexa, etc). Our goal is to maximize accessibility, and our conversational approach allows for distribution across a range of communication channels — meeting caregivers on the platforms they have access to and are most comfortable with.


Background

Hello Caregiver grew out of the 2017 Fellowship of Blue Ridge Labs — the tech incubator arm of Robin Hood, New York City’s largest poverty-fighting organization. The Fellowship recruits mid-career product, engineering, design & subject matter experts to research and develop technical tools for communities often overlooked by technology. 

The 2017 Fellowship was centered around building tools for low-income older adults and their caregivers. Starting with an intensive 8-week Research Phase, participants conducted desk research and in-person interviews with members of the community in hopes of generating ideas for technological interventions. This was followed by an 80-day Build Sprint, where various product ideas were tested, validated, and built as prototypes.


During the Fellowship, the Hello Caregiver team focused on the unique challenges faced by unpaid, low-income caregivers of individuals with dementia or other cognitive impairments. While all forms of caregiving have psychological and physical demands, the challenges faced by a caregiver of someone with cognitive impairment are distinct. Aside from the logistical challenges particular to dementia caregiving, this population often experiences the emotional challenges of overwhelm, social stigma, and isolation. Such difficulties only multiply among low-income demographics, where constraints on bandwidth and resources already contribute to overwhelming circumstances.


Although our initial iterations were focused on serving this particular demographic, we’ve arrived at an approach that can serve the entire caregiving community while still remaining considerate of the needs and sensitives of those with constrained resources. As explained above, the goal of our approach is to maximize accessibility. As such, a vital facet of our process is to continuously focus on how our product can reach those who are hardest reach, to serve those who are hardest to serve.


USER STORIES 

Based on the OpenIDEO Challenge Personas we developed User Journeys to explore how Derrick (Persona #1) and Helen (Persona #5) would be introduced to and engage with Hello Caregiver. These provide an opportunity to explore how caregivers of someone recently diagnosed and someone much further along in progression of dementia would be introduced to and engage with Hello Caregiver. 

User Journey for Derrick

User Journey for Helen  


PROTOTYPES & USER FEEDBACK

In a short time, we have already come a long way in the evolution of Hello Caregiver. The earliest iterations where paper prototypes with mock-ups of potential conversations. In late summer, our team had several rounds of interviews with community members, caregivers and potential caregivers at Queensbridge Housing's Jacob Riis Senior Center in NYC. Interviews walked users through the types of interactions we envisioned they might have with our tool, tested their response to content, and included follow-up surveys to better understand the information that would be most useful. 


As we continued development of the Hello Caregiver concept during the early fall, we consulted directly with caregivers and established advisory relationships with clinical and social services partner organizations. Through product-testing and interviews, each stakeholder group provided invaluable guidance on developing relevant and approachable content, optimal ways to guide users to complementary existing services, and how to prioritize the list of desired features.

 

We received invaluable feedback on the tone, content and features that were of the most value to our user population. Users didn't want the tool to be too playful, but they appreciated a more friendly and casual conversation. We had concerns about over-stuffing too much educational information into the conversations but were pleasantly surprised at how positively users responded to the content. There was a hunger for more information about potential causes of challenging behavior, activities to entertain and engage care recipients, resources on services for caregivers, and guidance on how to approach daunting administrative tasks (e.g. figuring out how the care recipient might qualify for Medicaid or estate planning).



By November, we had five extended conversation topics available on Facebook Messenger (available Hello Caregiver V1 Facebook Messenger) for independent user testing by our partners and their caregiver clients. This testing allowed us to observe users interaction with Hello Caregiver without someone sitting with them while they navigated the product. We received highly valuable feedback, a better understanding of the content users gravitated to, and additional eyes for discovering and troubleshooting issues with the content and flow.  

 

Caregivers want their questions answered, not to be asked questions. - Stephanie, Supervisor of CaringKind's 24-7 hotline


REfinement Workshop

Sharing samples of our earlier developmentUpon being accepted into OpenIDEO's Refinement phase, the NYC OpenIDEO Chapter graciously offered to host a Pop-Up Refinement Workshop. The prospect was exciting and the timing was perfect, as the Hello Caregiver team had started designing significant revisions based on the Facebook Messenger tests. 


These updates pivoted the extended conversations to more "bite-sized" conversations that focused more on providing quick, practical information and links to resources. These include resources such as videos, articles, and local organizations that can offer support relevant to the topics raised in the Hello Caregiver conversation. The updates also altered the main way users interact Hello Caregiver: rather than having to remember to visit the service, the service texts you and links back to Hello Caregiver's web app. This allowed us to offer more robust and intuitive user navigation, the ability to navigate between topics instead of trying to fit in all into one ongoing chat, and to provide additional features going forward, such as profiles, an event calendar, a library of resources suggested, and in-context links to define medical and caregiver vocabulary. 


On December 12th, 2017, a version of Hello Caregiver redesign pivot was shared at the NYC OpenIDEO Pop-Up Refinement Workshop. We were fortunate to have a diverse participant audience that included product and UX designers, medical professionals, and caregivers of different age groups.


“Technology is sometimes thought of as distancing people but what this does beautifully is refer people to in-person resources.” - Lola, Former caregiver for her Father


 After presenting an overview of Hello Caregiver including a demo (with an opportunity for participants to text into to receive messages on their own phones), the workshop participants rotated through 3 stations to dive into specific areas where our team was seeking user feedback and guidance. These stations included User Journey & User Adoption, Navigation & "Other" Functionality, and Conversations & Topic Areas.  Below is description of each station & highlights of the feedback gathered and user suggestions for additional functionality.


User Journey & Users Adoption

Goal: to learn about the context around the tool, such as how people learn about and sign up for Hello Caregiver, when and where Hello Caregiver reaches out to you, and who the key players that need to know about the product.

Key Feedback

  • Consider wider range of medical professionals that caregivers might interact with - pediatricians,  gynecologists, etc. 
  • Explore a wide range of ways caregivers could discovery Hello Caregiver. Where are they stressed, what are products we could cross promote with, 1st-responders should know about the tool & have cards to share. 
  • Don't be afraid of levity and humor to establish a personal connection. 
  • Add a User Journey for a long distance caregiver. How would they engage with Hello Caregiver. 
  • Craft the user-tool interaction using practices from the "Anticipatory Guidance" approach used in medical care. 


See all the notes from this station here.


Navigation & "Other" Functionality

Goal: to get feedback on the navigation style and functionality, and to gather thoughts on our list of “other” functions and feature wishlist.


Key Feedback

  • Needs a warmer welcome. More introduction on how to use it.
  • We need to engender trust – why should the user trust Hello Caregiver? What gives us authority?
  • Some found topic navigation overwhelming. Others liked being able to select topics they were interested in. 
  • People loved the idea being able to search and create caregiver & care recipient profiles. Also imaging how the "Other" - calendar or resource features could be used.
  • Ability to re-visit previous chats and having a collection of save resources was popular.
  • Allow users to dip into different topics, at different depths. Support non-linear exploration. 


 See all the notes from this station here. 


Conversations & Topic Areas

Goal: to hone in on particular conversations and to refine how we might organize our topic area navigation. 


Key Feedback

  • Users wanted to be able to search topics based on key-words. They also identified they wouldn't necessarily know the topics to search. Balance between suggesting & search response needed. 
  • Desire for more navigation within chats - to get definitions for vocabulary, re-routing to other, related topics.  
  • Caution around personalization/referring to the care-recipient by name. Don't use their name when describing common symptoms, but OK when presenting more open-ended questions about their behavior.
  • While trying to address common challenges balance that will communicating how every case is different.
  • Be a bridge to community. Make the human element of interactions a priority.  Highlight benefits & opportunities to engage with real-world community - churches, meals on wheels, the VA, etc. (Also tap into these networks as we're working to get the app into users hands).


See all the notes from this station here


Additional User Suggestions

  • A "Call Me" options that triggers a call to a caregiver by service agency or support service. 
  • Have the ability to "Like" particular topics that will generate more such content for the user. 
  • Provide audio version option.
  • Include the ability to send resources to their reading app or e-reader. 
  • Questions in a quiz format could be engaging and provide more back & forth in the chat.


CURRENT PROTOTYPE

To see our current prototype in action, text "Hello" to +1 (724) 749-5982‬!


Roadmap

Following on Hello Caregivers rapid early development, over the next 6 months we target to roll out various pilots with our clinical and social agency partners. During these we will gain invaluable user insight to continue expanding the application content and features. 


Hello Caregiver Roadmap - Proposed 2018


Based on our learnings from these pilots, Hello Caregiver will leverage its functional core with localized resources suggestions to be available in areas beyond our initial pilot areas in NYC. We are also especially eager to work with our partners to culturally and linguistically translate Hello Caregivers content. 

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

We tested earliest ideas using paper prototypes with caregivers at senior centers. Based on feedback, we iterated new designs and moved into testing new approaches to content and features. Our first digital service iteration was a functional chatbot on Facebook Messenger. We tested this version with caregivers as well as clinical advisors, social workers and support group coordinators. This influenced more changes that were tested in a Refinement Workshop hosted with the NYC OpenIDEO Chapter.

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

Based on user feedback & observation, we pivoted our content format & the technical implementation. We're focusing on more bite-sized conversations. Interaction will prioritize providing information over capturing background on the caregiver & care recipient. This requires options for more user driven customization (e.g. ability to skip portions of a topic that they're familiar). We'd love the OpenIDEO folks to check out www.hellocaregiver.org - test drive the tool & let us know your thoughts!

How long has your idea existed?

  • 0-3 months

This idea emerged from

  • A group brainstorm

Tell us about your work experience:

My background is in software product management and entrepreneurship with focus transitioning from "Big Data" and digital comms to social impact tech with direct end-user benefit. I was also a hands-on caregiver for my father as his Alzheimer's progressed. Our team includes a developer and designer.

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

A digital conversation tool for unpaid caregivers of people with cognitive impairment. It learns about the caregiver & care-recipient. It initiates topics, connecting caregivers with relevant, local services. It provides caregiving & self-care advice. Empowering caregivers with knowledge & support systems we're fighting caregiver burnout & isolation. Promoting caregiver & care-recipient wellbeing.

How does your idea demonstrate our Criteria of Accessibility?

Hello Caregiver focuses on accessibility for users in terms of convenience, technology, information, and expense. It's designed for mobile because busy caregivers always have their phone on them. It offers quick, useful knowledge & suggested resources. To eliminate obstacles to access, especially for the large portion of low income caregivers, providing a free tool is a priority. We're seeking financial and development partnerships with clinical & social impact foundations serving this audience.

How does your idea demonstrate or plan to demonstrate scalability?

Hello Caregiver has a two prong strategy for scaling - expanding languages/cultures & expanding beyond our NY area pilots. We will leverage our partnerships with clinical and social services organizations. These organizations know the content, already support caregivers of many cultures, & have national affiliates. Moving into other cities & rural areas, the core features & most of the content will be re-usable. As we roll out in new regions, our library of local resources will be expanded.

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

As we're initially learning about users, our earliest measurements will focus on number of users and count of click-throughs to resources (both informational and activities offered by local organizations). As our prototype moves into pilots as a minimum viable product, we'll actively measure impact by assessing: * Increased Access to Care & Support Services * Improved Mental & Physical Health * Household Income Boost, and * Increased Legal & Medical Preparation

What are your immediate next steps after the Challenge?

Based on recent user feedback, Hello Caregiver is pivoting from being based in Facebook Messenger to a web app that periodically pings registered users via SMS or Facebook Messenger. This will enable more convenient navigation, search options, a cleaner conversation format, and additional functionality such as events calendar, profiles, and shared user stories. Working with our clinical and social work partners, these updates will be tested with caregivers per the roadmap discussed in above.

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Photo of Sarah Giles
Team

What a great idea, do you intend to scale this up to include other countries in the long term?

Photo of Margaret Spring
Team

Hi Sarah - thank you for checking out Hello Caregiver! We'd love to eventually expand to other countries. Right now we're a small team and focused on the New York City area. Figuring out the framework & getting networked with local resources to connect users.

We're already thinking about expanding to other US cities and into other languages. Thinking beyond into other countries would be really fantastic! It'd be amazing!

Photo of Christine Brocato
Team

I like this idea and I think using text as a medium for proactive engagement is smart (its affordable and low tech). Maybe there are other ways you can use text to keep the user engaged.

Photo of Margaret Spring
Team

Thank you for taking the time to check out Hello Caregiver! It has been an ongoing debate figuring out how to strike a balance between focusing on text to ensure access for more low tech users and assuming a higher level of technology that would support video, direct access to websites and interactive features.

While we still want to accommodate less technically savvy potential users, our research has shown a majority of caregivers have smartphones. And, if they are in a home environment in which they live, there is wi-fi available. This has been really encouraging. As a result we're focusing incorporating more interactive and engaging formats for sharing information and resources. We recognize this does exclude a portion of potential users, but based on anecdotal evidence, that is a small portion and those users are unlikely to use technology or phones to access information of care giving for their care recipient.

It's a tough issue, but definitely a case where we've worked too figure out the best way to reach the largest population in most engaging way. Lots of work ahead! :)

Photo of Brian Hui
Team

Hi Margaret and team! It was really cool to see some of your ideas briefly today during your refinement session. Looking forward to seeing how this is further refined and developed!

Photo of Margaret Spring
Team

Brian Hui - Thank you so much for coming by & participating in the refinement session. It was wonderful to show our most recent work & the user feedback was fantastic! Now we're back to work incorporating our learnings from the workshop! Thank you for checking our of idea on OpenIDEO - please come check back to see how the product develops & gets out in the world!

Photo of Tania van Bergen
Team

Hello, sounds like an interesting product! Please let me know if you are interested in some UX feedback. Though I ma not a primary caregiver, one of my family members does suffer from dementia and I would be interested in testing your product out if it helps you. Good luck!

Photo of Margaret Spring
Team

Fantastic! Thank you Tania - We're working on several updates & will be doing a user feedback session next week. But, it'd be great to get you in touch with our designer Torry Colichio .

Thank you for the generous offer! Much appreciated! Good thoughts to your family member & everyone caring for them.

Photo of Tania van Bergen
Team

Hi Margaret - great I will reach out to Torry.
Thanks,

Tania

Photo of Barbara Will
Team

Hi Margaret,
I run a caregiver support group which meets once a month and we talk about ideas on how to handle difficult caregiving situations, but being in a safe group to talk about those frustrations is not the same as being at home, exhausted and overwhelmed by caregiving duties. I think that any tool that reduces anxiety, calms a situation and reassures a caregiver that they are not alone is a positive tool. I look forward to seeing the progression of your idea, also, if you would like feedback I would be happy to share your idea with my caregivers.

Photo of Margaret Spring
Team

Thank you Barbara Will - We're working on some revisions to the tool. We'll be getting our first feedback during an in-person refinement session here in NYC next week. It'd be wonderful to get additional feedback once we've incorporated the updated from the first round. Probably some time on January? I'd love to be in touch with you & get thoughts from your caregiver group. Thank you!

Photo of Adam Vaughan
Team

Hi Margaret
Seems like a great idea. What we've learned at Unforgettable is that caregivers hugely value simple, practical advice. I'd be interested to know if you've tested this with the older generation and how they get on interacting with a chatbot?

Photo of Margaret Spring
Team

We've tested with some caregivers, but while we're still in the early stage it's been easier to work with social workers that work with caregivers. They're more willing to roll with prototype quirks. There's definitely a portion of caregivers that will be reluctant to use a chatbot - because the technology is overwhelming or they are uncomfortable with it. To our surprise we actually have heard from a lot of the caregivers that they like the "robot" aspect so they can share things they might be reluctant to share with friends or family. Either because they are self conscious, don't want to burden others or worry disclosing would be shaming to their care recipient. The fact that more than 60% of caregivers are of a younger generation than the care recipient has also been a consideration when designing the technology.

Our biggest challenge is definitely balancing the technology and content to build off the willingness to disclose and ask to harder questions to a non-person while also keeping the information bite size and relevant to engage busy users that don't want to jump through lots of tech hurdles.

Thank you for your feedback! Exactly the right questions.

Photo of Bettina Fliegel
Team

Margaret,
Congrats to you and your team on the idea moving into Refinement! Please reach out so we can find a date for a NYC OI Chapter Refinement Workshop so you might be able to share the idea and get feedback.

Bettina
blf@earthlink.net

(https://challenges.openideo.com/challenge/caregiving-dementia/refinement/groceries-for-care is also in Refinement. Yay! We can include both ideas in the feedback session.)

Photo of Anne-Laure Fayard
Team

Congratulations Margaret Spring and team! As suggested by Bettina Fliegel we would love to host a refinement pop up for you to be able to get some specific feedback and refine it further. You might want to think of what are the burning questions you have so that we can help you plan the session. Thanks!

Photo of Keith Riggs
Team

Hello Margaret, Just one more thought that showed up as I was thinking about how you can get UX data and rich input. As I realised with my note below, even after a time there is an emotional unload which I hope wasn't too present in my testing and feedback. I wonder if tapping into the large number of caregivers who have gone through the process and have had 5 perhaps more years to consider how caregivers reacted and what they would do differently would be helpful in your deep human researcher + machine learning? I am not sure if it is helpful. Are experienced caregivers "loaded" with the experience and give emotionally driven feedback whereas professionals remain dispassionate. I wonder with old people in general if we are often too dispassionate and respectful of how fragile or easily disturbed they are. In any case I think I am not alone in wondering how you and your team will take this great project. Thanks Margaret, from Keith

Photo of OpenIDEO
Team

Congratulations on being today's featured contribution!

Photo of Keith Riggs
Team

Thank you Margaret Spring and team for the Hello Caregiver contribution. I appreciate that it is really well designed and developed and will only get better with your partners, professionals, everyones input and lots of data for ML. It seems awesome and you have such great contributing partners to build, test and tune as well as spread the word.

I tried out the helpful friend bot as if it was 16 years ago, when my father also had dementia. Unfortunately I lived far away, but the episodes that caused the most stress on his caregiving family and the decisions made for his care were made on the basis of tribunal brain responses to at first wandering, disorientation and at the end threats. The caregivers experience and maturity matter so much in helping to re-orient and refocus the person.

I found the questions and responses very well formulated to guide the experience of the user and help with good suggestions. It is really quite good already. Are the questions so formulated as to be able to read the responsibility level of the caregiver without in any way judging? Will there be reference materials suggested for various stages of Dementia so that it helps to build experience and responsibility of the caregiver? How do you see the bot evolving. This will be interesting and in NYC or other larger city the networks will synergise with professional and lay systems/organisations.

Great project. I look forward to seeing how it evolves and learns.

Photo of Margaret Spring
Team

Keith Riggs - Thank you SO much for taking the time to check out Hello Caregiver! Really appreciate you kind words and sharing your experience with your Father as you walked through testing it out.

Developing the conversation scripts is definitely the most challenging. Based on our user feedback - they want information up front. But, we also want to get a sense of where the caregiver is in their knowledge about the condition and where the care recipient is in term of disease progression - so we can provide tailored information that will be most useful and relevant to them. We're working to expand the library of conversations and resource/reference materials which we'll share with users.

We're also working to determine in Facebook Messenger is the right form factor. It's great for accessing caregivers - social workers have been excited because it's a platform their clients are already using. But, it limits the navigation options we're able to provide. Several ideas for how to balance these needs that we're eager to test!

Thank you again for taking to time to test & leave such thoughtful feedback! Looking forward to reporting out as Hello Caregiver develops!

Photo of Kate Rushton
Team

Hi Margaret!

Welcome to the ideas phase!

I recommend that you sign into your OpenIDEO account and press the 'Edit Contribution' button on your idea submission. There you will see specific questions for the ideas phase and the four opportunity areas for this challenge - https://challenges.openideo.com/challenge/caregiving-dementia/ideas/assignments/mission-embracing-the-role1 Please would you select an opportunity area that you think is the best fit for your idea submission.

If you have any questions, please do tag me here using '@' followed by my name (Kate Rushton).

Photo of Margaret Spring
Team

Thank you Kate Rushton I'll check it out now! Attending the NYC Chapter meeting of OpenIDEO on Monday was great. Great speakers and was really wonderful to meet people I'd exchanged messages with in the community!

Photo of Kate Rushton
Team

Hi Margaret,

That is good news! They are one of the most active OpenIDEO chapters.

Do you have a prototype/MVP that I could test? What differentiates Hello Caregiver from any existing bots etc. on the market?

Photo of Bettina Fliegel
Team

Hi Margaret.
It was great to meet you and John at the NYC Chapter meet up as well!
What type of feedback did you get from the folk you met at Queensbridge Houses? What did you learn from the user testing?
Were the caregivers that you met with seniors themselves? Is it possible to have a meet up with younger family members that might be caregivers at the Senior Center?

I wonder if caregivers that do not self identify will gravitate to using a tool named HelloCaregiver?

Photo of Margaret Spring
Team

Hi Kate Rushton - We're VERY excited to have a version of Hello Caregiver ready for OpenIDEO community members to poke around on. It's very much a prototype, but represents the features and functionality we're hoping to expand upon.

We'd love it if OpenIDEO community members wanted to check it out & give us feedback.
- Check us out our landing page: https://hellocaregiver.org/
- Select the "Chat Now" button (on mobile: below image, on computer: upper right hand). This will take you to our prototype in Facebook Messenger.
-- Login with your Facebook account.
-- Start your conversation by selecting "Get Started."

Once you're in, you'll have some intro conversation with Hello Caregiver. You'll be given a choice of topics. Please select "Preparing for doctor" or "<name you provide>'s behaviors".

There are several other topics you can also step through. As our product is still a prototype, they are under development with our clinical and social work partners.

If you run into a dead end, please just type "Menu" and you'll be brought back to the choice of topics.

Please leave feedback here or email us at info@hellocaregiver.org. Thank you!

Photo of Margaret Spring
Team

Hi Kate Rushton - We're VERY excited to have a version of Hello Caregiver ready for OpenIDEO community members to poke around on. It's very much a prototype, but represents the features and functionality we're hoping to expand upon.

We'd love it if OpenIDEO community members wanted to check it out & give us feedback.
- Check us out our landing page: https://hellocaregiver.org/
- Select the "Chat Now" button (on mobile: below image, on computer: upper right hand). This will take you to our prototype in Facebook Messenger.
-- Login with your Facebook account.
-- Start your conversation by selecting "Get Started."

Once you're in, you'll have some intro conversation with Hello Caregiver. You'll be given a choice of topics. Please select "Preparing for doctor" or "<name you provide>'s behaviors". There are several other topics you can also step through. As our product is still a prototype, they are under development with our clinical and social work partners.

If you run into a dead end, please just type "Menu" and you'll be brought back to the choice of topics.

Please leave feedback here or email us at info@hellocaregiver.org. Thank you!

Photo of Kate Rushton
Team

Thank you, Margaret!

I enjoyed testing the bot. I am wondering if the bot could incorporate visuals and video footage to explain some techniques for caregivers to try in the behaviour category.

I am going to tag some members of the community who might be interested in testing the bot - Bettina Fliegel Devendra Natekar Adam Vaughan Alexandra Quadt Corlynne O'Sullivan 

Photo of Kate Rushton
Team

Hi Margaret,

I am just posting here the comments on your research post that might be relevant:

In the initial version Hello Caregiver doesn't have any audio, but there are similarities to Siri. We chose the automated conversation tool so the product could be scale to serve a large audience. But, also to leverage the increased likelihood for users to share more candidly when they aren't concerned about the judgement of a person on the other end. We diverge from Siri in that we're developing targeted conversation scripts that cover the topics most in demand by caregivers of individuals with Alz/dem. While Siri responds to general searches, we seek to tailor the conversations based on the user response, provide specifically relevant information to their inquiry (rather than just search the whole internet), and always be routing the user to service and resources specific to the needs of the caregiver and their care recipient.


The Facebook url is great or maybe http://www.hellocaregiver.org. Right now it just re-directs to the FB page, but it's our intention to build it out as more of a landing page. Possibly hosting a version of the conversation tool there as well.

The team is John O'Neill, Torry Colichio, and me. Kate Egan has also been working with us on the initial concept development. She's relocating to the midwest, but has offered to continue in an advisory role.

https://www.linkedin.com/in/mspring/
https://www.linkedin.com/in/jconeill/
https://www.linkedin.com/in/torrycolichio/
https://www.linkedin.com/in/kate-egan-758a577b/

We're still in early stages,


Thank you for you interest in our project! Overall the audience targeting has a lot of under diagnosis of Alzheimer's and dementia so they caregivers handle to responsibilities without the support of existing services. We hope to connect them with such resources and specifically aid in applying for subsidies and programs that will reduce financial demands and offer paid support services.

The current version is only scoped to have automated responses. We're designing in a lot of conditional paths, so it will be customized for the user needs. And, we're building in portions where the user can express their concerns, questions and needs. The scripts will route users to a 24-hotline run by one of our adviser organizations for anything needing more immediate attention. Until we can build more sophisticated AI functionality, we'll have our team review submissions on a daily basis. We're set up responses to the users inquiries and build new script content based on their feedback. Overall we seek to offer regular check-ins, but always be encouraging users to connect with services and organizations that can provide more nuanced attention. Our research has shown among low-income communities there is an unawareness/reluctance to take advantage of these options and particularly strong cultural stigmas about Alzheimer's and dementia to overcome.

We did early user testing at Queensbridge Housing's Senior Center. We definitely hope to target caregivers that wouldn't self-identify & who are caring for individuals that haven't necessarily been diagnosed. But, per your line of questions - we're working with some clinical and social work organizations that we're hoping can be avenues for initial pilots. Once we have Hello Caregiver's conversations and platform built out further, then our intention is definitely to turn outreach attention to a larger audience of caregivers that's likely less engaged with support services. Looking forward to meeting & learning more about your work!

Photo of Kate Rushton
Team

Hi Margaret!

I noticed this in your idea - 'The scripts will route users to a 24-hotline run by one of our adviser organizations for anything needing more immediate attention.' When will this hand over occur?

How 'deep' do you plan to go with this technology? Will you need to bring additional expertise on board?

Photo of Margaret Spring
Team

Hi Kate Rushton -

Sorry for the delayed response! Been working away & finally getting back to OpenIDEO to check out all the great happenings.

To answer your question - we want Hello Caregiver to develop an ongoing conversation with users, but we're very careful that it's fundamental objective is to route overwhelmed caregivers to resources that exist & would benefit them. We talk about it as a well-informed friend. If they're just suspecting a loved one may have Alzheimer's or dementia, we can provide information, suggestions of behaviors to look for and record in preparation for the medical appointment for an assessment that we'll encourage. Or, if the caregiver starts using Hello Caregiver later or over the progression of the disease - we'd suggested how to seek coaching on how to lift and move their care recipient safely - for both of them! More an inquisitive switchboard providing information, bringing up questions they might not be thinking about yet (e.g medical directives), and pointing them in the direction of useful resources.

To this end, we have started partnering with several amazing organizations in New York. They are both clinical advisors - helping us guide caregivers to bring the most effective information for their medical support. A team from Montefiore's Center for the Aging Brain (http://www.montefiore.org/aging-brain) has been really incredible partner. We're also working with social work teams from a few organizations - CaringKind (http://www.caringkindnyc.org/ - they have the 24 Helpline) and NY Memory Center (http://nymemorycenter.org/) being two of them. At this point they're looking over our content, helping us prioritize development and beginning to work with us on plans for pilots.

Thanks for the great questions!