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Dementia “Ecosystem” Study To Address Caregiver Burden and Benefits of Technology

For those of us who work in the professional caregiving field, the role of the family caregiver is one we particularly honor. Caring for a loved one with a chronic illness or disability is stressful and often thankless. Nowhere is this more evident than in dementia caregiving. Family members of older adults with Alzheimer’s disease frequently struggle with not only the physical demands of caregiving but the emotional toll of watching a loved one “slip away,” sometimes over many years. Up to 50 percent of caregivers for relatives with dementia develop major depression.

Ten years from now, an estimated 7 million Americans will suffer from Alzheimer’s disease. As the 80 million U.S. baby boomers age as part of the healthcare “silver tsunami,” that number will grow even larger. By the middle of the century, caregiving costs for individuals with Alzheimer’s may grow to over $1 trillion per year.

As more individuals develop Alzheimer’s disease and other dementias, the number of family caregivers will only grow. In preparation for the growth in patients, caregivers, and costs, the University of California San Francisco and the University of Nebraska Medical Center is undertaking an ambitious study. The study, funded by the Centers for Medicare & Medicaid Innovation, is designed to plan the development of a dementia “ecosystem.” This network will be designed to reduce caregiving costs and ease caregiver strain.

A total of 2,100 patients will be enrolled in the study. Each will be assigned a “navigator,” responsible for coordinating care or triage calls and keeping patients out of emergency care for manageable issues. Many patients enrolled in the study will also receive activity sensors and trackers, either worn on the patient or placed around the house. Such technology will monitor such problem behaviors as wandering or prolonged inactivity.

A panel of physicians and technology experts, most of whom have family members with some type of dementia, have brainstormed with the researchers about other ways in which technology can be applied to improve dementia care in the new ecosystem. For example, one common concern for individuals who live alone is accidentally leaving the stove on. One suggestion was made to use a temperature sensor that would indicate if someone had turned on a burner and track how long it was left on. Another suggestion was to look at the use of Bluetooth-enabled monitors to periodically check blood sugar remotely, given the fact that up to a third of dementia patients have diabetes.

In the study, researchers will take a close look as to whether certain forms of technology, such as sensors, can make a significant difference in dementia care and reduce caregiver burden. Can such technology improve health? Reduce hospitalizations? Delay nursing home admissions? These are some of the questions the study hopes to address with hard data. Preliminary results may be available as early as January 2016.

For the millions of individuals with dementia and their family caregivers, the answers may influence the future course of care, as well as the quality of life they each experience.

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