Dementia starts with problems in memory and thinking, but it ends in miscommunication between the brain and the muscles. Starting with the most complex brain functions, dementia steadily steals a person’s abilities until she can barely communicate, or do anything for herself.
Healthy brains receive continual signals from the rest of the body and return directions for action. For example, a limb tells the brain, “I itch;” the brain sends back the message. “So, scratch.” With dementia, the brain doesn’t receive the input, doesn’t understand the information, or doesn’t give effective instructions. Direct testing shows that the nerves and muscles can work normally, but without the brain’s instruction, they don’t know what to do. This explains why some dementia patients “forget” how to use buttons, zippers, toothbrushes, and eating utensils. Doctors call this condition apraxia, which also affects nerves and muscles in the legs, causing dangerous falls,
Apraxia also involves the epiglottis, a muscle in the back of the throat that flips over your airway when you swallow, so mouth contents don’t get into your lungs, and flips over your esophagus when you breathe, so air doesn’t get into your stomach. When the epiglottis becomes apraxic (uncoordinated), food and saliva injure the lungs, leading to infection. This condition, aspiration pneumonia, is the usual cause of death among dementia patients. Hoping to avoid aspiration, some families request feeding tubes that supply nutrition directly into the stomach. Unfortunately, feeding tubes neither change apraxia of the epiglottis, nor protect life. Feeding tubes prolong dying.
Testing for Dementia
Dementia testing usually involves a detailed description of symptoms, and thorough examinations to rule out illnesses that mimic dementia. In people with a strong family history of dementia, tests for certain genetic mutations may identify the risk of developing the disease. There are tests for abnormal proteins (specific levels in blood and cerebrospinal fluid , collections identified with special chemicals in Computerized Tomography (CT), or Magnetic Resonance Imaging (MRI) brain scans,) or demonstrating areas of abnormal brain function (Positron Emission Tomography (PET) scans.) All of these tests are very expensive, and health insurance may cover the costs only in very specific circumstances. Also, since there is currently no cure, there are philosophical questions about reasons to gather information that cannot change the situation.
In genetic forms of dementia, testing could guide decisions about child-bearing in future generations, but in early-onset forms (when symptoms occur before age 60,) pre-clinical diagnosis could severely jeopardize insurability (health, life, disability, and long-term care.) Of course, testing would allow for advanced planning, but since none of us know what the future holds, I believe all adults should prepare for financial and physical care planning, irrespective of their medical history.
In his November 5th blog on this site, Dr. Neil Pliskin told us about neuropsychological testing, which I find more valuable to caregivers because we need to know what our loved ones can and cannot DO. Some families believe Dad “won’t do this on purpose;” testing can confirm that he is not capable of the task. My family learned not to call and remind Mother of anything; she remembered what she saw much better than what she heard; labels, lists, calendars, and written directions prolonged her independence.
When you have concerns about someone’s brain health, don’t wait! Find a health care professional who is skilled in dementia evaluations right away. The problem could be one of the masqueraders, but if it isn’t, we want to lose unrealistic expectations, and learn to give the best care.