Family Caregiving
There’s an app for that!
LEXINGTON HIGH SCHOOL SENIOR LAUNCHES APP TO REDUCE STRESS AND ISOLATION OF CAREGIVING FOR FAMILY MEMBERS
By Jane Whitehead
While most of his peers worry about college application deadlines, admissions and rejections, LHS senior Logan Wells, 17, has a different focus. He has a business to develop, following the launch in November 2017 of CareZare, an app he and family members created to streamline family caregiving, now downloadable from the App Store and Google Play.
AN APP FOR THE HOME TEAM
Eric, Logan and Hallie Wells
When Logan’s grandmother, known in the family as “Nannie,” was diagnosed with dementia four years ago, the Wells family mobilized to provide the help she needed to stay safely in her own home. After taking the hard decision to remove her driver’s licence, Logan’s parents Hallie and Eric, with his aunt Lisa Wells, organized a roster of companions so that she could still go shopping and see friends, and not miss the three-mile daily walks that she loved.
The Wells family faced a challenge familiar to growing numbers of Americans. A joint study published in 2015 by the AARP Public Policy Institute and the National Alliance for Caregiving estimated that 39.8 million Americans are providing unpaid care to an adult relative, with carers spending an average of 24.4 hours a week on caregiving, often with negative effects on their own health, as well as on their professional and personal lives.
As Nannie’s condition advanced, and her need for more constant and more specialized care increased, Logan saw the dramatic impact on his mother, who with his aunt was the main care coordinator. “Her free time was gone – she was always contacting caregivers, getting updates from them, texting, making sure everyone was on the same page,” he said.
“When we first started,” said Hallie, who works full time for Lexington Public Schools, “there were pieces of paper all over Nannie’s house: the chore chart on the fridge, the calendar on the kitchen counter, the medication check-off.”
Logan saw that juggling the different record-keeping systems and dealing with multiple emails, texts and phone calls among the three professional and six family caregivers was a major source of stress. “You see the toll it takes on your parents,” he said. “It’s something that’s hard to ignore, something you want to improve.”
Not one to turn away from other people’s struggles – he’s also involved with teen suicide prevention efforts through Lexington Youth and Family Services – Logan started teaching himself programming from online tutorials so he could develop an app that would allow all the caregivers to coordinate and share information.
With help from his father, Eric, whose background is in technology, though not in programming, and input from his twin brother Devin and older sister Delaney, Logan produced a prototype app that was field-tested by his mother and aunt and tweaked according to their feedback.
Prompted by Delaney, the family developed their own terms for the different people involved in caregiving. The person receiving care is the “CareStar,” round whom everyone else revolves. The “CareCaptain” is the administrator or coordinator, “CareGivers” are family members, friends or hired care providers invited to join the “CareTeam,” that includes everyone involved, including the person being cared for.
FIELDWORK
Over two years, Logan developed the app to allow members of the CareTeam to post four different kinds of information: heads up alerts, calendar notifications, tasks, and daily journal entries. Now, when caregivers start their shift, said Hallie, “they look at the app and read the recent journal entries and heads up alerts, so if there’s anything significant, they can deal with that.”
A typical journal entry – completed by every member of the CareTeam at the end of a shift – may include observations of Nannie’s mood, activities like having coffee or browsing catalogs, any chores or tasks completed, and maybe a general assessment. “Lots of laughs, great day,” concluded one recent note.
“When we receive these journal entries at the end of the day,” said Hallie, “it’s such a beautiful snapshot – it doesn’t always go well, but all of this is data.” The journal record is a way of tracking and meeting changes in Nannie’s needs. When carers began to note that she was not getting dressed by 2:00 p.m. or that she was starting to resist taking showers, “that was a cue to change to someone skilled in dementia care,” said Hallie.
A recent heads up alert via text from the carer on duty notified the CareTeam that Nannie’s washing machine had started spurting water all over the floor, mid-cycle. Hallie could respond immediately, contact a local plumber, let the next carer know to expect his visit, and share his assessment with everyone. “In that moment we can try to problem solve and have a whole cast of characters get that information in a timely way,” she said.
Lisa Wells manages all her mother’s health care appointments – “her eye doctor, her dentist, the neurologist, primary care, lab tests, all of that,” – and she has found the app’s calendar feature invaluable. The information that used to be in her head, or on a piece of scrap paper, waiting to be transferred to the paper calendar, can now be immediately shared with the CareTeam. And when Nannie’s medications change, Lisa can post information about the new prescription once, in one place, rather than calling or emailing five different people.
The CareZare App makes it easy to coordinate care for family members and the entire caregiving team.
SCALING UP
Seeing how well the app performed in meeting their immediate family needs, Logan and Eric started to think bigger. “We started to think – we can build this so it’s useful to other people,” said Eric. “We felt there were opportunities to really promote team-based care at the family level,” he said, as well as focusing on the role of the CareCaptain, and giving that person maximum support.
As self-taught programmers, said Eric, both he and Logan recognized their limitations, and they engaged another father and son team, Bruce and Bradley Stuart, of Arizona-based Software Studio, as technology partners. They worked closely together to ensure the app’s functionality and security and the ability to scale it as more people start to use it.
Logan and Eric also sought input from professionals in senior care, running test groups at Brookhaven in Lexington, with workers and residents, and meeting families facing different care-related challenges, such as those with adult children with developmental issues. “Gaining those new perspectives and applying them to the app was invaluable,” said Logan.
To drive revenue from the app, said Eric, they considered different options – advertising, a one-off download fee, or a subscription model – and Logan favored the subscription model. Currently, CareZare is available for a 30-day free trial, with a monthly fee thereafter of $9.95 for each CareStar. “We’ll try it,” said Logan, and if we find it doesn’t work, we’ll adjust accordingly.”
GAP YEAR CHALLENGE
“There’s so much to learn in doing a start-up like this,” said Eric. “There’s the caregiving side, then there’s how to build a business, how to build the product, how to keep focus, the marketing side – it’s such great fertile ground for learning.” Although it goes against the grain in a college-fixated town like Lexington, Eric and Hallie completely support Logan’s decision to spend a year focusing on CareZare after he graduates from LHS later this year.
“It’s definitely scary” not to be heading off to college immediately like most of his peers, said Logan, but at the same time it’s exciting to build on what he’s already accomplished – taking an idea from concept to marketable product, and learning a host of skills on the way, from programming to time-management.
He’s also keen to roll out new enhancements, including simplifying the design of the user interface, enabling the calendar to display Google and Apple calendars in the app, and – prompted by the recent snap of severe weather – providing updated weather information and warnings for caregivers.
With a background in hi-tech marketing, Logan’s aunt Lisa Wells is a valuable source of development ideas. She recently installed a Blink wireless home security camera system in her mother’s house, to monitor the night hours, and is encouraging Logan to incorporate notifications from that system into the app.
For now, though, she’s hoping that more people learn about the app and benefit from it. “It has been a godsend, honestly, from the communication point of view,” she said. “Before, you could spend half your day just calling people and trying to figure things out. I think my dad is up in heaven looking down, very proud of his grandson!”
Online Resources for Family Caregivers
American Association of Retired People (AARP): https://www.aarp.org/caregiving/
The organizations below are listed on the website of the National Alliance for Caregiving: www.caregiving.org
Eldercare Locator
www.eldercare.gov/Eldercare.NET/Public/Index.aspx
The service links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers.Next Step in Care
www.nextstepincare.org
Provides easy-to-use guides to help family caregivers and health care providers plan and implement safe and smooth transitions for chronically or seriously ill patients.Lotsa Helping Hands
www.lotsahelpinghands.com
A free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted.Caring.com
www.caring.com
Expert-reviewed content includes advice from a team of more than 50 leaders in geriatric medicine, law, finance, housing, and other key areas of healthcare and eldercare.Financial Steps for Caregivers
WISER (Women’s Institute for a Secure Retirement)
Being a caregiver can affect both your short-term and long-term financial security, including your own retirement. For more information on planning for a secure retirement, please visitwww.wiserwomen.org.
Family Caregiver Alliance
caregiver.org/node/3831
A central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders and family caregivers throughout the country.Caregiver Action Network
www.caregiveraction.org/
Resources include a Peer Forum, a Story Sharing platform, the Family Caregiver Tool Box and more. CAN also provides support for rare disease caregivers at www.rarecaregivers.org
