$726K grant will seek to provide resources for bereaved caregivers of late dementia patients.
A growing group of people who feel “ultra-invisible”— bereaved caregivers of late dementia patients— will be the focus of a study funded by a $726,000 grant to Arizona State University from the National Institute on Aging.
Most support available to caregivers focuses on those currently providing care, rather than those whose difficult days of caregiving are behind them because of the death of their loved one, hence the feeling of being “ultra-invisible,” said Zachary Baker, an assistant professor with the university's Center for Innovation in Healthy and Resilient Aging and the study’s principal investigator.
This quantitative study, however, will compile the largest sample of bereaved dementia caregivers to date with the purpose of providing tools and resources that could improve their lives as they grieve the death of their loved one.
"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," Baker said. "And what I mean by that is not just normal grief or sadness but something that is stopping their life."
Goals for the study include understanding how a caregiver is feeling after the person in their care has passed away, looking at the methods those who are coping well are using, and sharing those solutions with those who are struggling.
"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.
Caregivers whose symptoms aren't at a clinical level will still have higher rates of depression and loneliness. Baker added that within 10 years, most patients with Alzheimer's or another type of dementia will die, which will result in more than 9 million bereaved caregivers.
Those interested in participating in the study, or know someone who may be interested, can call 602-543-4492, extension 34492 or email formerdementiacare@asu.
Baker and other researchers are also currently working on an initiative that would expand the study to Spanish-speaking caregivers.
“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.”
Zachary Baker, assistant professor, ASU Center for Innovation in Healthy and Resilient Aging
Jasmyne Ray is the revenue cycle editor at HealthLeaders.