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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.

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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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