What Caregivers Need to Know About Dementia

Most of us know that not all diseases are created equal.  A number of chronic diseases include dementia as one of the defining symptoms, although it impacts mental and physical functions differently.  Parkinson’s disease certainly manifests a deterioration of mental functions, but not necessarily in a steadily progressive manner. Harry may be unable to remember his wife’s name today, but next week he appears quite cogent—a pattern of in and out. Congestive heart failure shows up as mental confusion, especially after a mini-stroke, but after the brain re-stabilizes, Mom can suddenly remember where she put her list of drugs. 

The word dementia is a catch-all phrase that indicates a decline in your ability to think, remember and reason. It can be caused by a number of brain disorders, such as a stroke—afflicting 795,000 people in the United States each year—and other ailments. People with dementia may lose the ability to solve problems, experience loss of emotional control and undergo personality changes. They usually develop impairments in their ability to perform daily activities, such as dressing or eating. Many, though not all, dementias cause memory loss. Alzheimer’s disease, among the dementias, is progressive, incurable and eventually kills the patient. 

According to the Alzheimer’s Association, 15 million family members and friends provide unpaid care to people with dementia. Hundreds and thousands of them meet regularly in support groups to exchange information and understanding not available elsewhere. Early warning signs of Alzheimer’s disease are especially relevant.  Although most Alzheimer cases are not diagnosed until mid-stage, medical recommendations urge patients to begin Alzheimer drugs as early as possible to improve and stabilize thinking, language and behaviors.  These drugs treat only symptoms, though, as the disease has no cure, and will continue to advance.

 

The warning signs include:

• Memory loss for recent or new information—for example, repeats self frequently.
• Difficulty doing familiar, but difficult tasks—managing money, medications, driving.
• Problems with word finding, mis-naming or misunderstanding
• Becoming confused about time or place—getting lost while driving, missing appointments.
• Worsening judgment—not thinking things through as before.
• Difficulty problem-solving or reasoning.
• Misplacing things—putting them in “odd places”—the ice cream cake into the oven, the coffee cups into the freezer.
• Changes in mood or behavior.
• Alterations in typical personality.
• Loss of initiation—withdraws from the normal pattern of activities and interests.

Many abilities are affected by dementia—thoughts, words, actions, feelings. It is variable, and affects people differently, depending on which specific brain parts have been impacted. If progressive, more of the brain dies over time and key areas get hit. These typically involve the frontal lobes, our intelligence center. Why is cognitive loss considered to be so devastating in our culture?  Because our over-rational society has put cognition as the most prized part of human activity. Irrational behavior is treated as pathological—out of control, unreasonable and deviant. Without a doubt, dementia can produce extreme behavior that violates anyone’s sense of normal or appropriate.  Teepa Snow, a dementia care and training specialist extraordinaire, offers some examples of deepening levels of concern: Annoying, Risky and Dangerous behaviors.

 

Problem Behaviors

Losing important things, getting lost, unsafe task performance, repeated calls and contacts, “bad mouthing” you to others, resisting or refusing care, not following care plans, being rude, making 911 calls repeatedly, undressing in public.  These are definitely annoying for the caregiver and her family, and become wearing over time. Such behaviors also take time away from other responsibilities.  Still other behaviors are risky, and unpredictable, and could cause harm to self or others. These can include: using drugs or alcohol to “cope,” eloping or wandering, and forcing intimacy or sexuality on another.

 

Dangerous behaviors are especially problematic and put the person, care provider or loved ones at immediate risk for injury.  Paranoid or delusional thinking, threatening caregivers, striking out at others, falls and injuries, infections and pneumonias, failure to eat or drink all constitute behavior that puts self or others in jeopardy. The secret for caregivers is to have a clear understanding of what level she’s dealing with and develop a strategy, rather than simply reacting to difficult behavior.

 

Next: Peter and Susan, A Typical Couple, Confront Alzheimer's

 

(excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)