Older adults with dementia are often excluded from decisions about their transitions in care as their condition worsens. And little is known about how to best incorporate their voices and their preferences in such decisions.

Anne M. Turner from the University of Washington School of Public Health and her research team hope to change this thanks to a five-year, $3.3-million grant from the National Institute on Aging. Turner is a professor in the School's Department of Health Services and associate director of the Health Promotion Research Center, which sits in the department.

With this study, Turner and her team plan to provide a better understanding about preferences of older adults with dementia in relation to their transitions in care by interviewing them, their caregivers, and dementia care staff. Using information from these interviews, researchers will develop and validate a tool for caregivers and staff to use in eliciting the preferences of older adults with dementia when it comes to their transitions in care. The tool will ultimately elevate the voices of these older adults so they can be involved in the decision-making process.

“There are a lot of transitions in care when it comes to dementia, and often as the dementia worsens, people are left out of decisions because we don’t have a clear way to include them,” Turner said. “What we want to do is figure out a way to keep the person with dementia in the conversation by documenting their preferences and values.”

Turner acknowledges there is still much to learn about how far into dementia certain methods can work, and the team will need to tease out the most important factors of complex decision-making options when it comes to dementia care.

Turner and a small team were able to do preliminary work last summer that explored the factors that contribute to decision-making about transitions. “We were able to see that older adults with dementia could tell us their stories and why they made the decisions they did,” Turner said. “They might have repeated it three or four times, but older adults with dementia that we interviewed could share their experiences with us.”

Researchers will build and maintain relationships with organizations that serve older adults with dementia in order to gain the needed insights for the tool. They will also work to reach and include people from diverse racial, ethnic, and socioeconomic backgrounds so the developed tool can support a variety of communities.

Ultimately, Turner said she hopes this research will facilitate progress towards patient-centered care that is responsive and inclusive to the needs of older adults with dementia.