Thinking about disease, disability, and death is difficult at any age. But it becomes ever more important as our loved ones get older and need to start planning for a time when they can no longer make decisions about their own health and long-term care.

In an effort to promote these vital conversations, University of Utah Health scientists are developing a website to help those who are in the early stages of dementia share their desires for late-life medical treatment with their care partners.

The research, supported by a five-year, $3.1 million grant from the National Institute on Aging, a branch of the National Institutes of Health, will evaluate the feasibility of using a self-guided, interactive intervention to simplify and expedite advanced care planning.

“Advanced health care planning is important for every individual to engage in,” says Kara Dassel, the study’s principal investigator and assistant dean of the Gerontology Interdisciplinary Program in the College of Nursing. “It’s even more important when you have a progressive memory condition like Alzheimer’s disease or another type of dementia.”

In earlier research, Dassel and her U of U Health colleagues Rebecca Utz, Sara Bybee, Katherine Supiano and Eli Iacob created and validated the “LEAD” (Life-Planning in Early Alzheimer’s and Dementia) Guide. The booklet is designed to help guide individuals who are at risk for, or who are in the early stages of, dementia through crucial end-of-life conversations with their care partners. The LEAD Guide is available on the Utah Geriatric Education Consortium website under  “resources.”

Later, with support from the Alzheimer’s Association, the researchers developed an intervention study for community-based participants that combines the LEAD Guide with other educational materials such as how to document advanced directives.

Over the next five years, Dassel and colleagues will use the NIA grant to recruit and follow a set of 60 pairs nationwide consisting of care partners and individuals who are in the early stages of Alzheimer’s disease or related dementia. For more information about participating in this study, email lead@utah.edu.

The pairs will use the newly developed LEAD website to make step-by-step end-of-life care decisions and outline other health care preferences such as whether doctors, family members or anyone other than the care partner or the person with dementia should have a role in these medical and long-term care choices.

The researchers will evaluate the usefulness, acceptance, and efficacy of the web-based tool. They will also assess if the intervention reduces anxiety and boosts the decision-making confidence of the care partner and care recipient.

If successful, the researchers believe the LEAD Guide website could be implemented more broadly and help alleviate care partners and families of any potential lingering doubts about their care choices made on behalf of the care recipient with dementia.

“We’re hoping that over the course of the study, the person with dementia and the individual caring for them will have a shared understanding of the care recipient’s values and preferences for medical and long-term care,” Dassel says.

“Engaging in these difficult conversations and documenting one’s wishes for care, can help reduce the burden, anxiety and guilt associated with making care decisions on behalf of a person with dementia,” she adds. “We want to avoid these negative outcomes and make dementia care as straightforward and smooth as possible for families.”