The article “Did dementia lead to violence?” in The Bee (July 5) was a tragic but poignant reminder of the ravages of the disease on its sufferers’ loved ones. The story’s comprehensive description of three harrowing instances of extreme violence, allegedly perpetrated by three older men with dementia on their wives, lays bare a very rare but serious consequence of dementia.
Missing from the vivid portrayals was a more nuanced understanding of how the brains of these individuals were affected by their diseases and how those brain changes can lead to such tragic acts.
Unfortunately, focusing on acts of extreme violence committed by demented individuals subverts meaningful discussion of the more common – and uncommonly taxing – behavioral changes that weigh so heavily on those caring for loved ones with dementia, at a cost to the U.S. medical system in the billions of dollars.
Dementia is commonplace. Its prevalence increases dramatically after age 65. The oldest of the old, people 85 and older, is one of the fastest-growing segments of the U.S. population. More than 1 in 4 individuals 85 and older is demented.
Dementia has many causes. Loss of memory in dementia is well-known, but less well-known and understood are subtle changes that commonly affect other aspects of behavior, such as difficulty understanding others, difficulty expressing one’s wants and needs, and trouble recognizing – and sometimes even fearing – one’s caregivers.
Dementia patients often slip back and forth between current events and childhood experiences, leading to confusion and severe anxiety because they have lost the concept of time. Individuals with dementia suffer these symptoms because of injuries to various parts of their brains.
These behavioral changes are not under their control. Their symptoms can be treated effectively, but this requires a coordinated effort between physicians, knowledgeable support staff and caregivers. Unfortunately, our current health care environment does not support such an approach. The primary care physician, to whom many of these issues initially are presented, often is underinformed regarding how to best manage some of the more complicated problems that arise and may have a limited ability to effectively educate patients’ caregivers within the time constrains of the typical office visit.
Referral to a specialist often proves only marginally more helpful. While specialists are better trained in diagnosing dementia and identifying the specific cause or causes, they often are neither trained in symptom management nor able to commit the time needed to fully manage the ongoing, and often changing, needs of the patient and their caregivers.
Consequently, the day-to-day management of these behavioral symptoms falls on the caregivers who often are employed and may have additional caregiving responsibilities with other family members. The result is a stressful environment with frequent emergency room visits, undermedication or overmedication, guilt and inconsistent care for the patient and support for their caregivers.
Would a comprehensive approach to behavioral management have prevented the heinous events described in The Bee’s article? I don’t know, but I am certain that it would vastly improve the lives of the millions of individuals who struggle with dementia and their caregivers.
What we need is a health care infrastructure to care for these individuals before their symptoms turn to violence. It is a safe and fiscally wise choice.
Charles DeCarli is the director of the UC Davis Alzheimer’s Disease Center and a professor at the UC Davis School of Medicine.