Around 5.4 million people in the U.S. suffer with Alzheimer’s disease. The number is even higher when other forms of dementia, such as vascular dementia, are included.
Dementia, defined by the Alzheimer’s Association as “a decline in mental ability severe enough to interfere with daily life,” can be devastating to its sufferers as well as their loved ones, who in addition to the pain of watching a friend or relative deteriorate mentally, often must give of their time and money to care for the sufferer.
As the population ages, the numbers will increase. Worst of all, there is no known cure for dementia, nor is there currently an effective medical method of slowing its progress.
The use of health informatics in the treatment of dementia patients, though, is offering a bit of hope.
At the 2013 G8 Global Dementia Summit in London, better use of available data, resource sharing and researcher collaboration were identified as key priorities, and mandated a report on how data can be gathered, shared and used most effectively in dementia research.
The report, “Big Data for Advancing Dementia Research,” points out that while most data for research into dementia is acquired through medical settings, other sources may prove especially valuable in understanding and treating this condition.
“Dementia is an outcome rather than a disease,” said Paul Matthews, head of the brain sciences division at Imperial College London, in the report.
“Onset is influenced by biological factors, education, exposures and lifestyle. Outcomes often are determined as much by social context as they are by any treatments delivered within the confines of the medical care establishment,” Matthews said.
Medical data only one part of the equation
In other words, medical factors, or those likely to show up or be discussed during a doctor’s visit, aren’t the only things worth looking at with dementia patients.
The study suggests that the minutiae of one’s digital footprint – phone records, Google searches, banking, even loyalty card use – may offer valuable insights into dementia.
How so? According to the study, even before symptoms have been detected, some dementia sufferers begin developing coping strategies. One coping strategy is developing strong and strict routines, such as shopping at the same store in the same location. Hence, loyalty card data and bank statements could potentially provide insights into dementia patient’s behavior, as well as help identify cases before they advance.
A main thrust of the report is the importance of and value to be gained by sharing data, a primary function of health IT.
Sharing data, the report said, “has the potential to create deeper, broader, more complete and simply better data, and allows more researchers to use these data in innovative ways.”
The report adds: “More researchers using the shared data allows for more thorough exploitation and examination of the data by those who otherwise would not have access, including researchers from other disciplines or data scientists bringing their analytical knowledge into the medical world.”
Symptoms inhibit data collection
Collecting vital data directly from dementia patients can be difficult and confusing, as memory loss is one of dementia’s primary symptoms.
Patients can’t be counted on to take required medications in the correct dose. They can forget that some over-the-counter medications are harmful to them (Benadryl, Dimetapp, Zantac, Imodium, Tylenol PM can speed the decline of seniors’ mental capacity). They may not remember vital information they need to share with their caregivers and physicians.
The Aging Brain Care Model is addressing these situations and more through data collection — and data collectors.
This model employs teams of non-medical staff who check on patients in their homes. These staff members make sure patients are following various regimens such as medications and exercises designed to promote brain functions.
These workers also provide services such as:
- Bringing meals to patients
- Arranging transportation to doctor’s appointments
- Supporting caregivers
- Gathering data on the patient’s day-to-day physical, mental and emotional states.
Frequent and regular interaction lets staff members view and make note of patients’ progress or decline. They also earn the trust of their patients, who are then more comfortable sharing information that may help their treatment.
Led by Indiana physician Malaz Boustani, the Aging Brain Care Model gathers vital data that might go unrecorded otherwise. Studies have shown that Aging Brain Care patients are less likely than other dementia sufferers to need an emergency room visit or to take medications that can harm them.
Studies suggest the treatment model can also reduce cognitive decline. It’s also a less-expensive way to care for dementia sufferers. That’s a big deal considering that dementia costs $236 million annually in the U.S. alone.
This form of care also helps alleviate patients’ depression, a condition that often goes hand-in-hand with a decline in cognitive ability.
“The loneliness is difficult,” David Johnston, an Aging Brain Care patient, told the Indianapolis Business Journal. The visits that are part of the Aging Brain Care model, he said, “are like a breath of fresh air.”