Creating a virtual village for caregivers

Baycrest research assistant Chanile Vines knows what it’s like to care for a loved one with dementia. She remembers how disoriented she felt adjusting to her new role as a caregiver when her late grandmother was diagnosed.

“My family left the hospital with only a pamphlet about dementia and no next steps,” Vines recalls. “The confusion we felt trying to figure out what roles to play and how to help my grandmother – we really struggled.”

Inspired by her own caregiving experience, Vines began volunteering at Baycrest’s Dementia Helpline for Families, providing emotional support over the phone to isolated or overwhelmed family caregivers of a loved one with dementia. There she developed a series of questions she’d review with callers to pinpoint overlooked resources that could relieve some of their load, like other family members, community groups, or public services.

When her prompts began making a real difference in the caregivers’ lives, Vines thought she might be onto something.

“Caring for someone with dementia really is a situation where you need more than one person to stand up and help. You need a village.”

“I thought, what if I could develop this tool into an actual product? So if you’re caring for your loved one who’s been diagnosed with dementia, you have somewhere to start,” Vines says.

She approached the Baycrest-led Centre for Aging + Brain Health Innovation (CABHI) with her idea and was encouraged to apply to CABHI’s Spark Program, which supports the development of early-stage innovations by point-of-care staff who care for older adults. She submitted an application, expanding on her original set of prompts and turning it into part of an extensive app for caregivers. She called the app iTAV: It Takes a Village.

“I decided on that name because caring for someone with dementia really is a situation where you need more than one person to stand up and help,” says Vines. “You need a village.”

CABHI awarded the project $50,000 to develop and test the iTAV app over a 12-month period. The app is currently in development and will be tested in caregiver focus groups later this year.

iTAV founder Chanile Vines

iTAV founder Chanile Vines

How iTAV works

iTAV’s goal is to decrease a caregiver’s burden by building an easy-to-access ‘village’ that can help them care for their loved one. Friends and family will be able to download the app and receive alerts when help with a certain task is needed, and caregivers will be able to source additional support from programs and services in their area with iTAV’s pre-vetted care resources directory. iTAV will come with useful features like a community programs locator, caregiving training resources, a medical appointments calendar, a smart journal, and a goal-tracking tool.

The goal-tracking feature is one of the app’s most novel elements. Caregiving goals could include anything from making sure the older adult is eating meals, to taking their medications, to getting weekly exercise. iTAV’s smart journal will prompt the caregiver to track progress of these goals. If the goal is not being fulfilled, the app will automatically suggest nearby resources or programs to fill that gap.

“Often caregivers just don’t have the time to do this kind of research on their own,” Vines says. “iTAV will help make the information accessible.”

By centralizing care coordination in one easy-to-access place, iTAV will decrease stress and feelings of isolation, allowing caregivers to better care for their loved one—thereby increasing the quality of life for the individual living with dementia.

Collaboration with CABHI

The support from CABHI provided not only the funding needed to develop and test the app, but also acceleration services such as business development support. Vines credits CABHI with helping her hone the project focus and connect her to the mindset of the caregivers she hopes to help.

“I’m working with CABHI’s Innovation Office to make sure the app is a viable product that meets the needs of the community I’m trying to serve. I’ve gotten so much help rethinking the value proposition,” Vines says. “CABHI is very connected to the dementia community, and having that expert guidance is so helpful.”

Vines hopes that ultimately her innovation will build wider awareness of the caregiver experience.

“We tend to think about technology as a disruptor, but I think of it as a helper and connector,” she says. “I’m hoping iTAV will be not only an app but a rallying call.”