Online Studies for Caregivers: A Participant Shares His Story

Bob Toia, 77, had a career in drug research, developing clinical trials for new drug entities at Proctor and Gamble. During those years, he learned, start to finish, the process of running a trial.

When he had multiple, personal experiences with Alzheimer’s disease in his family — including his mother living with Alzheimer’s — he knew he wanted to be involved in the fight for a cure somehow. He just needed to find the path that was right for him.

He got involved in various fundraisers. In 2016, he and his wife Kathy formed a team to participate in the local Dayton Alzheimer’s Association walk, an annual fundraiser event that draws caregivers and people living with Alzheimer’s. 

Then, in 2019, Kathy was diagnosed with Alzheimer’s, too. 

“I think I was probably in denial for a couple years prior to that,” Toia told Being Patient. “I was periodically getting told by neighbors or friends of ours that they were thinking something wasn’t quite right,” he said of the time leading up to his wife’s diagnosis. “I just said ‘We’re getting older,’ or some other excuse, which was silly — and I should have known better.”

Toia had, in fact, noticed some things were off with Kathy: for example, a lack of alertness, which eventually led him to confiscate her car keys out of precaution. “Then she started to not be able to follow recipes,” he said. “She always did the cooking, and I washed the dishes.”

Toia was motivated to go beyond the fundraising walks. “It didn’t seem like I was doing enough to be an advocate for Alzheimer’s individuals,” he said. Through various newsletters (including Being Patient’s), and online research of his own, Toia discovered different clinical trials he could participate in as a caregiver — and many of them were online, making them much more accessible to someone caring for a loved one full time.

Since 2016 Toia has been participating in trials run by the University of California San Francisco, the National Institutes of Health, Mayo Clinic, and Arizona State University to name a few. According to Toia, none of the studies have required daily participation, and many require quarterly data collected via questionnaires. 

“When I was caring for her [Kathy] at home, the only time I had, really, was when she was in bed because otherwise I’d be monitoring her all the time, so I could do it at night,” he said. “There isn’t a whole lot you can do to be helpful at night, because offices are closed — so this way I could participate and add to my desire to be an advocate for Alzheimer’s.”

After finding a study online that he thinks he is eligible for, Toia participates in a preliminary screening for the study, which is often delivered via a SurveyMonkey questionnaire. From there researchers will contact Toia to let him know whether or not he qualifies to participate.

The focus of some of the studies has been to monitor quality of life and health of the caregiver — only two studies have also involved Kathy. The studies contain questions about Toia’s health, sleep, and exercise patterns. Toia has also been asked whether he practices self-care and in what kinds of ways, what setting he is caregiving in and whether he receives help from other people in caregiving.

Several studies monitored Toia’s cognition to see if it is being impacted by caregiving. According to Toia, he has not shown any decline in the eight years he has been a participant in one cognition study. It’s one of the few studies where Toia is allowed to see the data results. 

“The studies where they are letting me see where my cognition is and where my quality of life is, those have obviously been a direct benefit to me,” he said. “It’s given me directions as to where I need to be headed if I’m not heading in the right direction already.”

A study that involved Toia and his wife monitored their exercise and sleep habits over time through Apple watches, which the pair were required to wear throughout the duration of the study. The researchers also sent questionnaires surrounding the comfortability of wearing the watches. Toia and his wife were both able to keep the watches after the study concluded.

While sponsors of many in-person clinical trials pay participants or at least reimburse them for travel expenses, there is very little monetary incentive for online studies like the ones Toia has been involved in.

“There was one study that we were doing that is over,” he said. “Every quarter they were doing a survey, and at the end of the survey I would get an Amazon gift card. There was another one that sent me a check for $60 or something like that at the end of the study.”

Toia encourages his friends who are caregivers to enroll in online studies, as well. There are studies for all sorts of schedules, he noted, and of all different lengths of commitment. One study he was involved in lasted three months, while he’s been enrolled in another since 2016.

“To me, the whole reason behind it is to be an advocate, and to provide what I can to the Alzheimer’s community — and that’s why I encourage others to participate as well,” Toia said. “I actually have had some friends who have signed up for some of the studies.”

Toia hasn’t given up on the fundraising, either — In fact, this is the ninth year he is captain of his team T-Squared, which blew past its $4,000 fundraising goal this year to raise over $5,000, contributing to the Dayton, Ohio walk’s overall raise this year of more than a quarter million dollars toward Alzheimer’s awareness and research — and they plan to keep it going.

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