By Tom Still
MADISON, Wis. – With longer lifespans comes the possibility of dementia in one of its currently relentless forms, as I know all too well from experiences within my own extended family. Watching loved ones as they slowly lose their memories and even their abilities to do simple things such as hold a fork or dress themselves is a shared suffering not to be wished on anyone.
Sometimes, family members can provide care at home in settings that allow for compassionate attention to everything from medicinal schedules to bed sores, and from mood swings to simply wandering off.
For the estimated 6 million to 7 million Americans with Alzheimer’s disease or a related dementia, however, such settings are more unusual than not. The bulk live out their days in nursing or assisted living centers; some go undiagnosed for too long, which can be the case with early onset dementia.
With predictions for a doubling of U.S. dementia patients by 2040, the need to better understand Alzheimer’s and its debilitating “relatives” has intensified. That’s why the five-year, $150-million federal grant awarded to the UW-Madison School of Medicine and Public Health is critical to learning more about root causes, possible disease pathways and better clinical care.
Known as the “Clarity in Alzheimer’s Disease and Related Dementias Research Through Imaging,” or CLARiTI, the UW study will gather data showing the presence, absence or change in characteristic disease biomarkers in people with dementia or at risk of developing it.
It will involve all 37 Alzheimer’s Disease Research Centers nationally, establish standardized brain imaging and blood plasma test protocols tied to known biomarkers, and assess the function of small blood vessels in the brain to analyze signs of neurodegeneration.
Like most clinical research studies, it will involve large cohorts of people. About 2,000 people will be enrolled nationally through the existing network, which will enable collection of magnetic resonance imaging and positron emission tomography, or PET, brain scans. Advanced blood biomarkers will also be collected to help researchers correlate biological changes to clinical diagnoses, genetics and changes in patient symptoms over time.
That combination of medical imaging, genetics and neurobiology forms a sweet spot of research and clinical experience at the UW-Madison, which may explain why the National Institutes of Health chose it for what will be the largest NIH grant in campus history.
The Madison effort will be led by Sterling Johnson, a professor of medicine at UW School of Medicine and Public Health. Quoted on the medical school website, Johnson said one goal of the study is to pin down causes of “mixed dementia,” which occurs when more than one neurological disease is the culprit.
“Without knowing the true cause of a patient’s dementia, physicians can’t properly treat them,” said Johnson, who holds a doctorate in clinical neuropsychology. “By collaborating across our Alzheimer’s Disease Research Centers network, we can shed light on the complex interplay of multiple pathologies contributing to dementia, ultimately advancing our understanding and treatment of this devastating condition.”
Data collected through CLARiTI will be made available to scientists through the National Alzheimer’s Coordinating Center. Analyzed biological samples will be shared through the National Centralized Repository for Alzheimer’s Disease and Related Dementias. Both are tied to the Alzheimer’s Disease Research Centers network and beyond.
For families across the country, this study may not hold out immediate hope simply because it will take time. Researchers and clinicians elsewhere are following other routes to learn more and to develop treatments, so it’s not a case of the rest of the medical world turning a blind eye to the seriousness of the challenge.
Meanwhile, for families and caregivers everywhere, patience and compassion remain two of the best tools for dealing with Alzheimer’s and dementia.
Still is president of the Wisconsin Technology Council. He can be reached at firstname.lastname@example.org.