Baycrest Research Assistant Chanile Vines was inspired to help others after caring for her grandmother who suffered from Dementia. She created iTAV (It Takes a Village): an app to help caregivers of persons with Dementia by providing them with accessible care solutions, a support network, and effective tips to assist in facilitating a rich and full life for aging patients.
One of the things my grandmother always said was, “You cannot be angry at an opportunity to take care of yourself and your family”. This sentiment has shaped my life and the person I am today. Whenever I see an opportunity, I go for it. I’m always willing to do the work it takes to help myself, my family, and my community.
I grew up with my grandmother, Millicent Williams, in Jamaica. People always say that their family members are strong, but my grandmother’s strength was indisputable. One of the most important things to her was her belief in hard work and pursuing an education. She worked to make sure that each of her children had access to education. After her husband passed away, she built a life for herself by running her own business – something practically unheard of at the time, in her community. Our bond was that of kindred spirits. We spent most of our time talking – she had an incredible memory, and she often provided a sounding board for issues that were important to me.
We moved her to Canada when she was in her 80s, as her brain health began to decline. It was heartbreaking to see my grandmother transform from being vivacious and engaging to someone who, at times, seemed to give up on trying to understand what was going on around her. After her diagnosis, she ceased to enjoy the things in life she loved. We weren’t able to converse as we had before. When you’re trying to navigate a new life in a different place, anything that reminds you of home gives you a sense of peace. Not being able to connect with my grandmother, who was a reminder of home and where I came from, was one of the toughest things I’ve ever experienced.
All of my family members pitched in to help her as best they could. We all had different commitments and skillsets, so we divided up the work accordingly; one family member would take her to her appointments, while another would talk to her during meals. As time progressed, I discovered through trial and error what worked and what didn’t; playing videos of her home, for instance, was likely to spark conversation. I figured out what to do because I got lucky. When you’re in that situation, it’s very difficult to determine what you need help with, who to ask for help, and what to do with that help once you receive it.
One unique personality trait I am proud of is how, whenever I’m faced with a situation, I want to help, I throw everything I have at it – my time, talents, and skills, you name it, I’ll bring it! Watching my grandmother decline was horrific. It’s difficult to truly understand what it’s like to have a meaningful conversation about life with someone, and then have that same person be unable to recognize you. Because of the way this impacted me personally, I did everything I could to make a difference. I started volunteering and learning as much as possible. I hosted and participated in events to raise money, and I even altered the focus of my education towards Dementia care.
While I was caring for my grandmother, I was working with the Crisis Hotline in Toronto. One of the questions we ask people who call for support is, ‘What gives your life value?’. One individual told me about her time volunteering at Baycrest, an organization dedicated to caring for people with Dementia.
That call piqued my interest. Soon afterwards, I researched Baycrest and how I could get involved. Two days later, I began the registration process. Thanks to the help of volunteer services, I found myself with both a job, and a volunteer position! I was working with the Dementia help line, which is targeted to provide caregivers with support finding help for their loved ones. I also volunteered with senior support, which involves speaking directly to the individual in more of a companionship role. A year later, I began my Masters in Psychology, and focused my studies on Alzheimer’s.
A year into my Masters, I shadowed Dr. Nicole Anderson. As part of her research, we looked into various cognitive stimulation programs with three different centres in Toronto. Seeing how each centre ran and offered care was an extremely eye-opening experience. Baycrest stood out in terms of the levels of service and care offered to patients.
One of the biggest issues I faced while taking care of my grandmother was figuring out what came next. It was extremely frustrating not to have an explanation for every new trait or behaviour she developed. It didn’t take long for me to realize as I talked to people on the help line that my experiences were actually pretty standard for Dementia caregivers. Nearly everyone believes their loved one’s behaviours are novel when, in fact, everyone goes through very similar things. There is a significant disconnect between amazing research discoveries and getting that information to the right audience – the individuals providing care.
I began thinking about what it would look like if a device or resource existed to help people discover answers to the challenges they faced while taking care of an aging adult. It began as a paper resource that quickly evolved into a web-based application, It Takes a Village (iTAV), because of the sheer volume of information and the rapid changes that information goes through. Resources improve as people conduct research, and then they apply new research that feeds off of those results to provide even better information. I wanted iTAV to be easy to follow. I was disheartened because I went through my journey with no tools or resources and I didn’t want others to feel the same way.
I don’t think that the emotional trauma of caring for an aging adult will ever really subside, but knowing what your next steps are helps both you as a caregiver and the people you care for. It will help with the frustration of never really knowing what to do.
Today, what I remember most about my grandmother is how she shaped my life and helped me become the person that I am. I’ve adopted her resilience – she told me that it’s all going to be alright, no matter how bad things got. Her work ethic is also something I admire and strive for. It didn’t matter how old she was; if it weren’t for her illness, she’d probably still be planting yams and working in her chicken farm, or helping her community by bringing meals to people that couldn’t leave their beds. To her, the idea of not working wasn’t an option. The biggest things that push and motivate me today are the lessons I’ve learned from her.