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Giving older adults and their caregivers a voice in research

Jim Mann is one of more than 747,000 Canadians living with Alzheimer’s or another dementia, but don’t ask him what new technologies would make his life easier and safer. “That’s the wrong approach. For me, that’s like asking where to put the chair before the house plans are on paper. Because, quite frankly, you just don’t know what’s possible.”

In February 2007, at the age of 58, Mann was diagnosed with early onset Alzheimer's. The former airline employee works daily to cope with a disease that could be better managed, he says, if researchers and companies that make assistive technologies better understood the day-to-day challenges facing older adults with dementia, and their caregivers and families. That will require engaging care receivers and their caregivers early in the design and testing of new products and services.

“A group of doctors and techies sitting around a board table are not going to understand the intricacies of an individual’s life and their needs,” he says.

Mann continually reminds technology developers of this divide between design and practice as a member of the Research Management Committee of AGE-WELL. As the Alzheimer’s advocate on the committee, Mann plays an active role in reviewing proposals and helping shape the network’s investment decisions.

AGE-WELL addresses a wide range of complex issues in technology and aging through end user-driven transdisciplinary research, training programs, partnerships, knowledge mobilization and the commercial development of assistive technologies such as artificial intelligence, e-health and mobile technologies.

“One of the main reasons so many products and services fail is because they don’t meet a consumer need,” says Janet Fast, a University of Alberta professor and AGE-WELL researcher focused on assistive technologies that support family and friend caregivers. “The AGE-WELL program is trying to address this problem by understanding those needs and how a product or service can meet those needs. It’s a well-accepted principle that if you’re trying to develop or market new products, you have to understand the consumer’s viewpoint.”

Listening and engaging with technology users through all stages of the development process is a core principle in AGE-WELL’s mission. It is why Mann accepted an invitation to be the keynote speaker at AGE-WELL’s first annual conference.

He says many of the challenges facing assistive technologies aren’t technical; often they relate to consumer acceptance and the stigma and stereotypes around dementia. Understanding those issues requires ongoing communication and collaboration. He suggests that researchers visit people where they live.

“Have them (the person with dementia) talk about their day and from that insight will come valuable nuggets to guide in the creation and development of products. Technology is only useful if people are willing and able to use it,” Mann told AGE-WELL delegates.

“My speech to AGE-WELL was trying to get across to people, especially when we’re talking about assistive technology, to make sure it addresses a need. Don’t assume you know what that need is.” By participating in groups like AGE-WELL and the Alzheimer Society of Canada, Mann says, “I’m able to bring the real-life voice to these issues, compared to a theoretical voice.”

Dr. Fast leads an AGE-WELL program that examines how assistive technologies can make the lives of family caregivers more manageable. For example, she says communications technologies can help a caregiver who doesn’t live with an older person monitor what’s happening in the home.

“A caregiver’s mind can be set at ease if they have a good sense of what’s going on in the care receiver’s life … and be prepared to respond when something needs to be dealt with,” she says.

Developing technologies that caregivers need starts with identifying who they are and what they need, and that’s not easy, says Dr. Fast. Current research often relies on secondary data, including from Statistics Canada, which is often too broad to provide a detailed view of caregiver needs. In her AGE-WELL project, one of 25 recently funded by the network, Dr. Fast will consult with both caregivers and technology producers to learn what the consumers’ needs are and what producers have to offer.

“The project also offers an opportunity for caregivers and producers to talk to each other, because sometimes producers might not have a clear sense of caregivers’ needs and the challenges they face,” says Dr. Fast. “Sometimes the producer just assumes that everyone has the capacity—the digital literacy—to use these technologies appropriately. Sometimes those assumptions are wrong.”

Mann agrees. He says many older people are often suspicious and fearful of new technology, “so you need to introduce these new technologies with patience and empathy.”

Dr. Fast says the results of her research will provide other members of the AGE-WELL team and its partners with a deeper understanding of how existing technologies can be adapted or new ones developed, to meet the unique needs of caregivers.