Online Learning Empowers Care Partners

Receiving a dementia diagnosis is a life-changing and often traumatic experience for many. Not only can it take a long time to get an actual diagnosis — anywhere from four to 12 weeks, according to the Alzheimer’s Society of Canada — patients and their family members are then also required to spend anywhere from one to two hours in the doctor's office confirming the diagnosis once they receive it.

The process in the doctor’s office usually consists of detailed testing of a person’s vital signs, a physical examination, and interviews with a nurse and, sometimes, a pharmacist.

All of this information must then be synthesized by a physician, who is required, in the same appointment, “to educate [the patient’s care partners] on all things dementia, and provide them with next steps at least,” says Dr. Richard Sztramko, a geriatrician and assistant professor at McMaster University in Hamilton, Ont.

“I just found that it wasn't a great moment to do that, and there's also not enough time to do that,” he adds.

The Idea

After consistently experiencing this issue, Sztramko pondered a different way to provide vital information. What if care partners could access evidence- and science-based information on clinical wisdom from the comfort of their own home, whenever they wanted it?

Sztramko reached out to Dr. Anthony Levinson, a neuropsychiatrist and director, division of e-Learning Innovation at McMaster University and, in July 2018, the idea of iGeriCare was born.

 [ left ] Richard Sztramko & Anthony Levinson [ right ]

The easy-to-use, free and non-profit website provides users with simple lessons and helpful resources. The site’s courses allow caregivers to learn about all aspects of dementia at their own pace and in their own homes.

"It's pretty simple to use; you don't have to create a new account or log in. You just have to go to the website and watch the lessons."

– Dr. Richard Sztramko

The Vision

At each stage of dementia, there is new information for the patient and care partners to learn. For example, when someone is first diagnosed, they'll need to understand the different types of dementia. Then, if the patient wants to start treatment, they'll probably want to know how dementia progresses and how it can be treated.

After living with dementia for a while, care partners might want more information on keeping someone safe at home or how to deal with problematic behaviours. They may then seek information about long-term care facilities.

The resources provided to answer these tough and important questions are often provided in website format, all at once, making it daunting and difficult to know where to start.

With the iGeriCare focused lessons, care partners are provided with what Levinson and Sztramko refer to as "customized learning prescriptions."

In other words, the lessons that are only relevant to the specific problems that a care partner is dealing with at the moment.

The 10- to 45-minute focused lessons, delivered within a simple website design, provide an excellent user experience. So long as users have a WiFi connection, they have access to a series of learning lessons that can be accessed on a computer, phone or tablet.

"It's pretty simple to use; you don't have to create a new account or log in. You just have to go to the website and watch the lessons," says Sztramko.

Users can also subscribe to receive weekly emails that reinforce the information in the multimedia lessons. In addition, iGeriCare provides monthly live events hosted by Sztramko and Levinson on a specific topic. Prior to each event, users can email questions they'd like answered during the discussion.

"I think some people if they're not that comfortable with technology, may be more comfortable with email, or they might like both. It’s the same thing with the live event — you can watch it through the iGeriCare website, or you can watch it through Facebook," says Sztramko.

 The Funding

iGeriCare stemmed from a loose idea between two doctors who saw a significant problem. Still, there was an issue: they needed funding.

Dr. Alexandra Papaiannou, director and clinician scientist at GERAS Centre for Aging research, provided Sztramko with the resources to apply for an initial grant.

Sztramko received a $50,000 grant from the Spark Program, which is an initiative that provides funding to support innovative ideas that can help improve the brain or quality of life in older adults.

iGeriCare also received $25,000 from the Hamilton Health Sciences Foundation – St. Peter’s Division and $10,000 from the RGP Central Program. “Each of these grants were necessary to get the initial product up and running,” says Sztramko.

So far, iGeriCare has also received $5,000 in public donations.

The Testing

Sztramko believes that because both he and Levinson were very familiar with the needs of care partners, the clinical testing for iGeriCare was almost seamless. The entire process took approximately one year to complete. Caregivers, who are the primary target audience for iGeriCare, were the key individuals involved in the pilot testing for the website and lessons.

“We would typically take about a month of testing for each lesson. For example, we would complete a draft of a lesson, our subject matter experts would conduct their review, and we would then update the lesson for review by the caregivers,” says Levinson.

            Photo Courtesy Canva

Following the caregiver reviews, further updates would be made and then lessons would be published to the iGeriCare website.

"When we got to testing, there were a few changes that they [caregivers] wanted us to make, but they weren't that significant," Sztramko says.

Levinson echoes this sentiment.

"I think we had a pretty good sense that we were going to be on track with the lessons, but it was really affirming to know that we were absolutely on the right track … especially when hearing statements like, ‘I wish I had something like this when my husband had first been diagnosed with dementia.'"

The Impact

Since the launch of iGeriCare, the website has helped over 154,000 users, during more than 220,000 sessions across the website.

Not only is iGeriCare helping care partners, it is also reducing health-care costs. Providing information online through iGeriCare is entirely more cost-effective than paying a health-care provider or a nurse for a full one-hour session, for example.

According to Levinson, it is estimated that in the next 10 years the number of people living with dementia will double. This means there will also be more than double the number of care partners, especially if you count family, friends and larger networks of people.

So, not only are resources like iGeriCare important to educate care partners, they are also key to decreasing stigma in a cost-effective way.