Moving Dementia Care Forward
Together Senior Health provides digital solutions to combat cognitive decline.
Around the world, more than 50 million people are affected by memory loss, Alzheimer's, and dementia. As a Stanford d.school graduate and early employee at IDEO, Cynthia Benjamin understood the potential of human-centered design to create tools and experiences that could improve health outcomes. In 2017, Cynthia teamed up with longtime friend Dr. Deborah Barnes, a leading researcher in the field of dementia care at University of California at San Francisco (UCSF), to co-found a new venture focused on treating and preventing neurodegenerative diseases. They started Together Senior Health (TSH) and worked to scale their evidence-based lifestyle intervention program, Moving Together. When the pandemic hit in 2020, the program had to pivot to go fully online. With this new format, TSH contacted IDEO to help expand the reach of their program, make it more engaging for adults with early cognitive decline, and create better pathways to diagnosis.
155 Enrolled
in the Boost Your Brain Health Clinical Trial
3 Months
to International Review Board (IRB) approval
Approximately 12-18 percent of people aged 60 or older live with mild cognitive impairment, while memory loss, Alzheimer's and dementia affect more than 50 million people around the world.
An estimated 50 percent of people living with dementia are undiagnosed.
Alzheimer’s and dementia are notoriously difficult to treat—and scientists estimate that some 50 percent of people who have dementia are undiagnosed. Recognition of symptoms and early intervention are key. Together Senior Health (TSH) and IDEO set out to conduct user research to inspire new products that would help patients with cognitive decline take charge of their brain health.
The first priority was to expand the reach of the Moving Together program, which combines group movement exercises with mindfulness techniques led by a licensed practitioner. The team conducted remote and in-person interviews in Florida, where one in five residents is age 65 and older, and rates of Alzheimer’s and dementia are among the highest in the country. One of the key insights the team discovered was that many older adults didn’t understand how behaviors like smoking, exercise, and diet can be risk factors for cognitive decline. Their input inspired a new design principle for the app: “No naked feedback.” Any time patients received health coaching advice about modifying their lifestyle, they would also be given resources on why and how to do it, so they would have a pathway to boosting their brain health.
The IDEO team folded insights like this one into the design for four new product offerings, including personalized brain health education, new online community engagement tools, partnership programs, and health coaching services, as well as a new user interface to illustrate them. Along with TSH, they also developed an implementation roadmap of next steps to bring the new digital product offerings to market, such as hiring a brain health coach and creating a new course curriculum. Now, TSH has enrolled 155 people in the Boost Your Brain Health Clinical Trial, which is looking at outcomes such as reduced risk of Alzheimer's and maintenance of cognitive function for the Brain Health Together program. The trial will be complete in Q3 2024, and the program is scheduled to launch in 2025. TSH included almost all of the elements from the IDEO roadmap into the final curriculum, and the team often refers back to insights the team gathered as guiding design principles.
Fighting barriers to diagnosis
With its online program growing, TSH wanted to take on an even bigger problem: dementia underdiagnosis. Co-founder Dr. Deborah Barnes had recently developed an algorithm that uses patients’ health records to calculate their risk of undiagnosed dementia, called the Electronic health record Risk of Alzheimer's and Dementia Assessment Rule (eRADAR). TSH was looking to find creative ways to equip and empower providers to use the eRADAR risk score in primary care settings.
One piece of the puzzle? Many primary care doctors are unaware that better management of Alzheimer’s disease and dementia can have a positive impact on other chronic health issues—like diabetes, hypertension, and depression. So by encouraging providers to prioritize dementia care, they can help support the overall health of older adults with cognitive decline. The IDEO team designed a curriculum for continuing education courses for doctors that made that link clear—another step toward increasing dementia diagnosis and improving overall health.
Better help, sooner
To understand the patient experience, TSH and IDEO decided to work directly with patients and caregivers to uncover what was stopping them from asking for dementia screening. The IDEO team quickly learned many patients were afraid of facing a diagnosis that signified a loss of agency and control, especially when they didn’t believe there were good treatment options. Often, they were unaware that there were things they could do to improve their brain health. They needed to know what steps to take after a diagnosis, and who could provide actionable advice. In response, the IDEO team designed a digital activity toolkit and physical booklet to guide patient families through the early stages of a dementia diagnosis, including recognizing the signs and symptoms, having better conversations with their doctor, and getting connected to support groups and programs like Moving Together.
Solving the problem of dementia underdiagnosis involves complex systems-level thinking and designing for the entire health ecosystem of patients, providers, and insurance payers, and solutions for Alzheimer’s and dementia care are still in their infancy. But already, this work is empowering patients and doctors to prioritize brain health and get screened sooner, moving dementia care forward.
Alzheimer’s and dementia are notoriously difficult to treat—and scientists estimate that some 50 percent of people who have dementia are undiagnosed. Recognition of symptoms and early intervention are key. Together Senior Health (TSH) and IDEO set out to conduct user research to inspire new products that would help patients with cognitive decline take charge of their brain health.
The first priority was to expand the reach of the Moving Together program, which combines group movement exercises with mindfulness techniques led by a licensed practitioner. The team conducted remote and in-person interviews in Florida, where one in five residents is age 65 and older, and rates of Alzheimer’s and dementia are among the highest in the country. One of the key insights the team discovered was that many older adults didn’t understand how behaviors like smoking, exercise, and diet can be risk factors for cognitive decline. Their input inspired a new design principle for the app: “No naked feedback.” Any time patients received health coaching advice about modifying their lifestyle, they would also be given resources on why and how to do it, so they would have a pathway to boosting their brain health.
The IDEO team folded insights like this one into the design for four new product offerings, including personalized brain health education, new online community engagement tools, partnership programs, and health coaching services, as well as a new user interface to illustrate them. Along with TSH, they also developed an implementation roadmap of next steps to bring the new digital product offerings to market, such as hiring a brain health coach and creating a new course curriculum. Now, TSH has enrolled 155 people in the Boost Your Brain Health Clinical Trial, which is looking at outcomes such as reduced risk of Alzheimer's and maintenance of cognitive function for the Brain Health Together program. The trial will be complete in Q3 2024, and the program is scheduled to launch in 2025. TSH included almost all of the elements from the IDEO roadmap into the final curriculum, and the team often refers back to insights the team gathered as guiding design principles.
Fighting barriers to diagnosis
With its online program growing, TSH wanted to take on an even bigger problem: dementia underdiagnosis. Co-founder Dr. Deborah Barnes had recently developed an algorithm that uses patients’ health records to calculate their risk of undiagnosed dementia, called the Electronic health record Risk of Alzheimer's and Dementia Assessment Rule (eRADAR). TSH was looking to find creative ways to equip and empower providers to use the eRADAR risk score in primary care settings.
One piece of the puzzle? Many primary care doctors are unaware that better management of Alzheimer’s disease and dementia can have a positive impact on other chronic health issues—like diabetes, hypertension, and depression. So by encouraging providers to prioritize dementia care, they can help support the overall health of older adults with cognitive decline. The IDEO team designed a curriculum for continuing education courses for doctors that made that link clear—another step toward increasing dementia diagnosis and improving overall health.
Better help, sooner
To understand the patient experience, TSH and IDEO decided to work directly with patients and caregivers to uncover what was stopping them from asking for dementia screening. The IDEO team quickly learned many patients were afraid of facing a diagnosis that signified a loss of agency and control, especially when they didn’t believe there were good treatment options. Often, they were unaware that there were things they could do to improve their brain health. They needed to know what steps to take after a diagnosis, and who could provide actionable advice. In response, the IDEO team designed a digital activity toolkit and physical booklet to guide patient families through the early stages of a dementia diagnosis, including recognizing the signs and symptoms, having better conversations with their doctor, and getting connected to support groups and programs like Moving Together.
Solving the problem of dementia underdiagnosis involves complex systems-level thinking and designing for the entire health ecosystem of patients, providers, and insurance payers, and solutions for Alzheimer’s and dementia care are still in their infancy. But already, this work is empowering patients and doctors to prioritize brain health and get screened sooner, moving dementia care forward.
"The IDEO team has a unique ability to reach and extract insights from real users, and ours is a particularly challenging audience to build trust with and understand deeply. Their work is at the core of our innovation as we translate our clinical research into impactful products."
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