New study to help bereaved caregivers

A new grant from the National Institute on Aging, a division of the National Institutes of Health, will fund research at Arizona State University to collect the largest quantitative sample of bereaved dementia caregivers to date, in order to provide tools and resources to improve their lives.

Assistant Professor Zachary Baker with ASU's Center for Innovation in Healthy and Resilient Aging is the principal investigator of the study. He says former caregivers are a growing, diverse group that often feels "ultra-invisible" as most currently available support is focused on those actively providing care.

“The reality is they lost their mom or their husband, or somebody really important to them, and as many as 25% of these former caregivers are getting clinical symptoms, and what I mean by that is not just normal grief or sadness but something that is stopping their life,” Baker said.

Even those whose symptoms don’t rise to the clinical level still suffer from higher rates of depression and loneliness. And their numbers are increasing. According to Baker, within 10 years, most people living with Alzheimer’s disease and related dementias will die, creating 9 million-plus new bereaved caregivers.

“So aside from a lot of sadness and subclinical depression and less quality of life, we’re talking about millions of people who can’t function, but nobody is talking about them or thinking about their needs,” he said.

With $726,711 in funding, this three-year study is looking to change that.

The research aims to understand first, who is going to do better or worse after the person in their care has passed away, and then try to figure out the things that people who are coping well are already doing that work for them and share those solutions with others who are struggling.

“I would love for that 'ultra-invisibility' term to be completely irrelevant,” Baker said.

Researchers are actively recruiting former dementia caregivers to join the study and working on an initiative to try to expand the study to Spanish speakers in order to reach more communities.

If you are interested in participating or know someone who might be interested, please call 602-543-4492 (x34492) or email formerdementiacare@asu.edu to learn more.