Pandemic highlights importance of supports for people with dementia
A new healthy living program and a virtual reality exercise game will support people living with dementia at home and in long-term care
A new healthy living program and a virtual reality exercise game will support people living with dementia at home and in long-term careBy Heather Bean University Relations
Laura Middleton became passionate about Alzheimer’s research after a much-loved aunt was diagnosed with early-onset Alzheimer’s at age 47.
“Her daughters were 12, 14 and 16, and she was my mom’s best friend, so it had a huge impact on our family,” says Middleton, a Kinesiology professor in the Faculty of Health. “I was interested initially in strategies to help reduce the risk of developing dementia. But gradually, I realized that if we had had better supports, if we could reduce stigma, if we could promote inclusion, her life after her diagnosis also could have been so much better.”
The Dementia Lifestyle Intervention for Getting Healthy Together (DELIGHT) program offers support for healthy diet, exercise, social engagement, mental well-being and sleep quality tailored to people living with dementia. Middleton is developing the DELIGHT program with colleagues Heather Keller and Carrie McAiney and graduate students Lauren Bechard and Cindy Wei with funding from the Canadian Consortium for Neurodegeneration in Aging.
The broader co-design team reaches deep into the community, including people living with dementia and their caregivers, staff from community agencies and municipal government and health-care providers such as dieticians, nurse practitioners and exercise providers. “We didn’t want to create a program for people living with dementia. We wanted to create it with them, and with the people who would be delivering the program,” Middleton says.
The pandemic changed their research plans. But for Middleton, there were surprising benefits to working together online. “Forcing us to work remotely meant that we could meet more frequently. It doesn’t take as much time to meet that way. And I think this process was more appreciated than usual, especially for the people living with dementia and their care partners, because many were pretty isolated otherwise.”
With DELIGHT, the goal is to make a program that can be delivered across a variety of Canadian communities. “In a city like Waterloo, it would be easy to link with the Alzheimer’s Society, the City of Waterloo, and maybe the YMCA,” Middleton says. “We want to make it as flexible as possible so that the one or two providers in a smaller community can also deliver this program — not just specialized therapists.”
Middleton expects to pilot the project in about six months. In the past, a program like this might be tested locally before it’s rolled out to smaller communities. But the pandemic led her team to develop a program that’s accessible for everyone. “COVID-19 has forced us to develop a program and resources that can be tested online and accessed by people who are in rural locations. We might not have developed this as quickly otherwise.
“This program is meant to be inclusive over much of the dementia journey, but specifically targets people shortly after their diagnosis. Often, they feel despair, and they’re told to think about getting their affairs in order and to plan for the end. We want to give people a sense of hope and optimism, and strategies for living well as long as they can with dementia.”
As a complement to the healthy living program, Middleton has been working with Jen Boger and Shi Cao in Systems Engineering, Lora Giangregorio and Michael Barnett-Cowan in Kinesiology, trainees John Munoz, Chris Li, Samira Mehrabi, and Aysha Basharat, and an industry partner, VR Vision, to finalize a virtual-reality exercise game. Players are encouraged to do rowing movements as they explore a natural setting. There are trees, beaches and cliffs they can explore. There’s a little dolphin that follows them and birds in the sky.
“When we talk to people living with dementia about physical activity, often being outside in nature is really meaningful,” Middleton explains. “There are benefits to being outside that are independent of exercise itself — benefits that can be difficult for people with dementia to access.”
In addition to these programs, recent funding from the Public Health Agency of Canada will help Middleton and her colleagues give community service providers the knowledge and skills to better meet the needs of people living with dementia within any diet and exercise program — not just those designed for people living with dementia.
As Middleton notes, full access to and inclusion in physical activity and leisure activities “is a fundamental human right.”