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For the last 20 years of her life, Janelle Taylor’s mother lived with advanced dementia.

“Toward the end, I had a lot of responsibility for her care,” says Taylor, a professor of medical anthropology in the University of Toronto’s department of anthropology in the Faculty of Arts & Science.

“So, dementia was very present in my life. And being a scientist, I used my research ‘tools’ to make sense of my mother’s condition and I learned a lot. Also, maybe because I myself was middle-aged, I found everyone I talked to was dealing with dementia in their lives in one way or another.

“And so, for over a decade now, dementia has been the primary focus of my research.”

Throughout her career, Taylor has studied the social and cultural aspects of health, illness, aging, care-planning and end-of-life decision-making. Her research into dementia examines such aspects as the experience of older adults with no living spouse or children and how dementia affects the nature of friendships.

“The changes that dementia brings pose such a challenge,” says Taylor. “They make us think about memory, personhood, relationships – all the things central to our personal identities.”

Taylor recently became a member of the (ACT) project, a long-term study of individuals aged 65 and older that’s designed to gain a greater understanding of dementia and Alzheimer’s disease and make possible more effective prevention and treatment. Since it began in 1994, ACT researchers have tracked an active cohort of 2,000 individuals to see which remain healthy as they age and which develop dementia.

Alzheimer's is a chronic neurodegenerative disease characterized by a deterioration with age in cognitive ability and memory. It is the most common form of dementia, accounting for 60 to 80 per cent of dementia diagnoses. Today, hundreds of thousands of Canadians live with Alzheimer’s.

ACT is led by Kaiser Permanente Washington, the University of Washington School of Medicine and the University of California, San Diego, and was recently awarded a five-year grant of US$56 million by the National Institute on Aging, part of the U.S. National Institutes of Health. With the new funding, those involved in three projects within the study will grow to include 41 investigators at 10 research institutions in the United States and Canada. It will also allow ACT to increase the number of study participants to 3,000.

One of the three projects looks at physical activity and sleep and their relation to brain aging and dementia. A second investigates differences in subtypes of Alzheimer’s and whether patients with different subtypes experience the disease differently. A third examines the efficacy of drugs commonly used for treatment.

Taylor is one of ACT’s 16 co-principal investigators. Her team will be part of the second project investigating subtypes of Alzheimer’s. Unlike the majority of ACT researchers who focus on biological and medical aspects of dementia and Alzheimer’s, Taylor and her collaborators will be taking the study in a new direction by investigating the experiences, care needs, caregiving challenges and caregiving networks of participants.

They will focus on questions such as: How do people experience this condition? What are their resulting needs? What difficulties arise for caregivers trying to help them? And what kind of impacts might there be on caregiving networks?

For example, ACT researchers have identified a subtype defined by deterioration in executive function characterized by an increase in impulsive behaviour, a loss of inhibitions or a decline in an individual’s ability to make judgements. Knowing more about challenges specific to this subtype could lead to insights into better care and decision-making for individuals within this group.

“Getting questions about care, caregiving, social experiences and networks onto the radar screen of a big, well-funded medical research study like ACT is important,” Taylor says.

“What we're doing is different from what’s been done in the past in this study. We’re looking at information collected by the ACT study that no one's ever used for research before.”

Taylor hopes that this approach will lead to a better understanding of people's needs, and a better understanding of the challenges and the impacts on their families and social networks.

“We can’t cure Alzheimer’s yet,” she says. “But what we know is that caregiving is the one thing that makes a difference. And with this research, we can gain a better understanding of how best to provide care and make people's lives better.”