Caregivers overseeing adults living with Alzheimer's disease manage reams of information daily - information they receive, seek, navigate and translate from doctors and health-care providers, from support services, even from friends and family members. But despite the thousands of caregivers across the country dealing with these challenges, researchers have long disregarded information as an area of health-care study.
One Western researcher, however, is shining a light onto this topic with hopes of informing the conversation of what she calls "information as work."
"There is a trend towards encouraging people to age at home as long as possible. But how does this trend increase the workload on family caregivers?" said Nicole Dalmer, a Library and Information Science PhD candidate. "The information activities they have to do to provide care is increasing with aging-in-place policies. It's becoming an increasingly visible form of care work - one that has always been invisible.
"Information has a real role in and impact on people's lives. Information can really help - but it can also complicate the care process."
Dalmer, whose academic background in neuroscience and neurodegenerative disorders, is helping inform this current work.
"In LIS (Library Information Science) literature, we've researched how caregivers use information and their information-seeking behaviours. All the studies report that information is really scattered. And that is frustrating," she said.
Information becomes 'work' when caregivers have to seek out, understand, organize and translate what they need to care for an ailing family member, Dalmer explained. Information comes from doctors and health-care providers who explain the patient's condition and care needs, from support services, agencies and even online searches.
Family members caring for loved ones aren't generally well-versed in illness and the provision of care, she added, and they have to work to understand and organize information they receive from various sources. They also need to translate details surrounding the condition or the required care to the patient and, possibly, to family and friends.
All of this constitutes work. How such work is treated and defined in research can impact and reverberate beyond one individual's care.
"When talking about the different work and tasks caregivers have to do, the literature lists things like toileting, bathing, finances and legal work. But information never falls as a highlighted task. (Information work) needs to be highlighted in aging-related research because it is such a source of frustration and effort for family caregivers. It informs important legal decisions, finances, power-of-attorney decisions and even a decision like where to buy a raised toilet seat."
Dalmer is approaching her dissertation "as different pieces of a puzzle" that will hopefully come together and help shed light on why caregivers' information work is invisible. Her approach is an institutional ethnography, which emphasizes connections among the sites and situations of everyday life, professional practice and policy making.
This approach allows her to focus on the lives of caregivers and trying to understand how their everyday lives are organized or invisibly controlled by larger social decisions and policies.
Dalmer is examining how social policies related to aging in place come together nationally, provincially and locally to inform caregivers and influence their information-seeking behaviours and care work. She is working on recruiting participants to interview, including families, caregivers, health-care professionals and other service providers, at places such as the Alzheimer's Society, to better understand what information they deem necessary to share with caregivers and the methods of communication they think are best to use.
There are only two other studies that have used this concept of information work. This is the first one to look at dementia within information work, Dalmer noted.
She knows she is looking to speak with individuals seeking information on a topic that doesn't necessarily have answers to specific questions. And she knows their information work - what they seek out and where they go to find it - changes as the disease progresses and manifests itself in different ways.
Two pilot studies revealed a general comment of frustration of not knowing where to go for answers. Information is scattered and caregivers don't always know what to look up or which person to speak with, depending on needs or concerns.
"With time, caregivers have to acquire this sense of expertise, knowing almost the proper information or lingo to use to access services. They know the right thing to say to the right person to get that information. It's a lot of work to be able to figure that out," Dalmer explained.
"Information is so nebulous; that makes it tricky and fascinating to study. Information can be anything and anywhere. It's a big source of frustration for caregivers - we don't have a lot of information on this disease," she continued.
"(Information work) might also influence the relationship between the caregiver and the older adult living with dementia. Information can be really powerful. I'm curious to see what impact it has on the affective component of relationships between families. If there is one main caregiver who has information, how does it influence power dynamics?"
Dickson Wong hopes, in some small way, to make a real-world impact with his research. That's why he chose to pursue a PhD in Medical Biophysics combined with an MD at Western, after completing an undergraduate degree in Electrical and Biomedical Engineering.
"You hear talk of translational research from the bench to bedside. But, in the future, I would really like to have a flow of bench to bedside and bedside back to bench - more of a cycle. That's what I envision myself doing," said Wong, who hopes to spend about half his time in the lab conducting research and the other half working with patients in clinic.
"It's important to straddle both sides because not very many people have proper research and medical training. If I could keep both sides active, I could ideally have a patient population I'm studying and be able to figure out clinically relevant problems and then have the research tools, experience, lab and resources to answer those questions properly."
Currently, Wong is working with Schulich School of Medicine & Dentistry professor and Robarts Research imaging scientist Robert Bartha to conduct brain imaging research to address questions related to Alzheimer's disease.
Of the two projects he's presently focuses on, the first involves using numerous magnetic resonance imaging (MRI) techniques to detect early signs of Alzheimer's disease in a human patient population. As part of the project, Wong uses:
With each technique, Wong and his team are looking for differences between people who have normal cognitive function, mild cognitive impairment and those diagnosed with Alzheimer's disease to determine what's unique or different in the brains of each group.
"We're kind of throwing everything but the kitchen sink at the problem," said Wong, with a laugh. "The data isn't all collected yet. But, hopefully, what we see will help guide more basic research to understand why these changes are happening, and we can get closer to figuring out the cause of Alzheimer's. We want to detect the disease early because we're pretty confident if we treat it early, we can delay or slow the symptoms for longer. That will help improve quality of life for patients."
Wong's second research project involves using imaging techniques to study the effect of vitamin D supplementation on mouse models exhibiting symptoms of Alzheimer's disease. Vitamin D is a known neurosteroid hormone - one that gets into the brain and has an effect on the neurons - with antioxidant and neuroprotective properties. According to Wong, it's been noticed that 70-90 per cent of Alzheimer's patients are insufficient in vitamin D, although whether it's a factor in the disease or not is unknown.
"What if we rescue patients' vitamin D status? Will it improve their cognition? Vitamin D is a very easy thing to implement in the clinic, since it's not a prescription drug. If it did provide benefit, we could give patients the guideline to take more vitamin D than they normally would," said Wong.
As part of the 12-month study, Wong is tracking mice who have been taking memantine - a drug used to help improve cognition in Alzheimer's patients. His team has noted the mice who have been taking the drug for an extended period of time show a decrease in glutathione (a chemical that picks up harmful free radicals) in the brain. This suggests that, over time, memantine could become harmful to patients taking the drug.
Although the study is not yet complete, Wong said some promising preliminary results show that mice taking memantine in combination with vitamin D do not experience the same drop in glutathione.
"Maybe vitamin D has an antioxidant effect that is helping the brain and allows you to take this drug - which has been shown to improve your cognition - for longer," Wong explained. "So that's a very clinically relevant result."
Although Wong admitted he's knee-deep in "learning the ropes" as a researcher and his projects are far from complete, he said he feels good about the potential of his work. "If we do find positive results, it could really impact clinical practice, even if in a small way. This makes me feel like I'm doing something really meaningful - and that's important to me."
One thing Wong feels very strongly about is the value of interdisciplinary teams working together to solve the more complex medical issues of our time.
"It doesn't matter what your background is. While a lot of easy medical problems have been solved, the difficult problems really require an interdisciplinary team. So, I'm an engineer coming into medicine and I'm bringing those skills but, if you're in social science, you can potentially bring something unique and help solve a problem that we don't have a solution to yet."
Natalie Kozyrev sees it as eating the elephant one bite at a time.
"Most diseases scientists work on don't have a cure. But what you can do is make little discoveries, take small steps in order to get to the next step, so eventually, you will find a way," said the Western postdoctoral scholar.
"If you have a big plan, and you're trying to cure Alzheimer's disease, it won't happen quickly. But if you try and ask certain questions, and make small steps towards your goal, then you're more likely to succeed."
At the Robarts Research Institute at Western, Kozyrev is doing just that. Supervised by immunologist Greg Dekaban and aging expert and physiologist Jane Rylett, she is studying the role of the immune system in Alzheimer's disease, and specifically, the role played by inflammatory cells in the body.
"For a long time, it was thought the main player in Alzheimer's was beta-amyloid plaques," Kozyrev noted.
These plaques form when protein pieces (beta-amyloid pieces) clump together and form a larger protein found in the fatty membrane surrounding nerve cells. Clumped together in large groups, beta-amyloid pieces, observed in the Alzheimer's brain, are particularly damaging and may block the brain's signaling at synapses. Kozyrev's lab is looking at how these plaques interact with the immune system - a relatively new approach to studying the disease. Plaques may also activate immune system cells, which trigger inflammation.
"With more and more research, it has been found that actually, the immune system plays a big role in Alzheimer's, and it's something that needs to be investigated further to figure out what the exact role of the immune cells is, and what they are doing in the brain - whether they are helping to clear the plaques, or exacerbating the disease further," she explained.
While there are other researchers looking at the role of immune system cells and their relation to beta-amyloid plaques, Kozyrev's team has an advantage, she noted, as it is the only one able to differentiate between different types of cells present at the site of plaque clusters.
Two types of cells exist at the sites researchers are studying, Kozyrev explained. It is generally difficult to determine what type of cell is clustering around plaques present in the Alzheimer's brain. The first type of cell - microglia - is a resident cell in the brain and closely resembles a hematogenous cell, which originates in the blood.
"Here, we have the ability to visualize certain immune cells in the brain using enhanced green fluorescent protein, which marks cells that emerge from the blood," she said.
"Because they look exactly the same, it was hard to determine what type of cells cluster around the plaques - whether they are there from the blood, or whether they have always been in the brain and returned into this pro-inflammatory type of cell. At Western, we have the ability to distinguish between the two."
Kozyrev's team is working to characterize Alzheimer's in the brain using a mouse model at different stages of progression of the disease, starting at the earliest stages when plaques first begin to form, all the way to "major progression" and cognitive decline. Researchers are comparing findings between males and females to further investigate the discrepancy of the disease visible in clinical inpatients, she explained. It is already known that women tend to develop Alzheimer's earlier and at a more frequent rate than men. Her team is trying to identify what that looks like inside the brain by looking at the relationship between plaques and inflammatory cells. The next step would be to figure out whether the immune cells are pro-inflammatory or anti-inflammatory and whether they serve to worsen the disease or improve functional outcome.
"I hope we will be able to figure out what's going on in the brain in terms of what's happening with different changes in immune cells. Perhaps that will lead to some sort of new therapies that can be utilized to help humans, and to either treat Alzheimer's, or stop the progression of the disease, or reverse the damage that's already been done," Kozyrev explained.
"Alzheimer's is such a prevalent disease in Canada and it's getting to be more and more common. Nobody is protected, not me, not you, and it happens so sporadically. There is no genetic basis for it - it's really hard to predict who is going to be next. It's such a burden on the health-care system and I thought it would be worthwhile research to pursue."
Hadir AlQot, a Physiology and Pharmacology PhD student in the Schulich School of Medicine & Dentistry, is studying the cholinergic system of the brain and how it is linked to Alzheimer's disease.
It was that "intimate link" - one between Alzheimer's disease and memory loss - that first attracted Hadir AlQot. Today, it's what continues to motivate her quest to identify a single certainty in a research field of countless unknowns.
"Memories are what make me, me, and you, you. If you lose them, it's like you're losing yourself," said AlQot, a Physiology and Pharmacology PhD student at the Schulich School of Medicine & Dentistry. "(Memory) is a very intimate link to a person. It's your whole life. Losing that means not knowing where you are or where you belong."
The progressive nature of the disease is devastating for all, she added. As a patient suffers and loses their sense of self, caretakers and family members are likewise affected. There's no reversing the effects of Alzheimer's; researchers don't understand causes and far too much remains a mystery.
"We still have no idea what's going on. Different theories are out there but so many are conflicting. Different treatments are failing. I thought I would do my part by trying to figure out what is going on," she said.
AlQot's work focuses on the cholinergic system of the brain and how it is linked to Alzheimer's diseases. Its cells are a specific type of brain cell which researchers have found to be commonly affected in Alzheimer's patients, she explained. The cells don't appear to instigate the disease, and are present in healthy individuals and Alzheimer's patients - just manifesting in different ways. Alzheimer's patients tend to lose these cells as the diseases progresses, and some believe this is what's causing memory loss and learning difficulties.
Her research, which she started in early 2016, is funded by the Alzheimer Society of Canada.
"I'm looking at the interaction between this system and the progress of the disease. In our lab, we're interested in one protein in this system. We found a new isoform (a type of protein) that appears to be different in an Alzheimer's patient," said AlQot, who is supervised by Jane Rylett, a professor in the Department of Physiology and Pharmacology and scientist at the Robarts Research Institute.
"(The protein) is situated in one location within the (healthy) cell, but in an Alzheimer's patient, it moves to different locations. In normal cells, it's in the nucleolus, and in Alzheimer's patients and aged people, it tends to move out of the nucleus. We are thinking (this protein) might play a protective role and that's what we're trying to understand - its role in an Alzheimer's patient."
Moving forward, AlQuot's research team hopes to find the link between the loss of cholinergic cells, their mobility and the progression of Alzheimer's. If the identified protein within the cells does have a protective function, it may open doors to potential treatment studies. Looking at the changes in these cells could also be useful in identifying early diagnostic tools for the disease, she added.
"If (the protein) is doing what we think it's doing, we're hoping that once we cross it with an Alzheimer's model, it would delay disease progression. So, if we normally start seeing signs (of the disease) by six months, maybe we could start seeing them by 9-12 months."
The biggest challenge for her team is working with animal models in which the protein is not expressed. Researchers first have to establish the expression of the protein in a mouse model, ensuring it behaves the same way it does in humans, before crossing it with an Alzheimer's model in order to study the protein's effects on the progression of the disease.
"We're trying to see if we can maintain its function in the model to be able to say 'Hey, we might have a treatment here that could work,'" she continued. "Sometimes it's frustrating. Other times, it's thinking that it might prove the hypothesis we have that motivates me. It's exciting to see where this is going and how it could help someone else to move this forward, especially to a clinical or translational application.
"Alzheimer's is one of the Top 10 diseases leading to death worldwide. There's no cure, no treatment and nothing to slow it down. Until I came to work with it, I didn't know we weren't sure of its pathology. Now, working with it, no one knows what's going on. It's a field that requires much more research to be able to understand what is happening. It motivates me. Not knowing makes you want to know more. It's a force pushing you forward."