We Are Not Our Disease

Alzheimer’s is a terrible disease. Besides ultimately ending the life of the diagnosed, it takes a tremendous toll on all family, friends, and loved ones involved. However, Alzheimer’s disease or any memory disease under the umbrella of dementia, does not define the character of your loved one. Rather, it is the disease they have, and the unfortunate burden with which theyve been dealt. We are very good as a society at separating the person from their cancer, diabetes, or arthritis. We even go as far as to say, You beat cancer! So, why does society as a whole have a much harder time separating memory loss, or change in cognition, from who we are?

Your loved one is: a professional, a spouse, a parent, a cherished individual with dreams, hopes, and feelings.

Your loved one is not the symptoms of their disease.

Say you were to stumble while walking at the park, and felt a very sharp pain in your ankle. A trip to the doctor will give you a definite answer about whether it is broken, the treatment necessary, and an expected resolution date. If you started getting angry and agitated in the evenings, the natural response from most of us would not be a trip to the doctor. If we even comprehended the change, many of us would spend a month or even years, trying to figure out what had changed. On the flip side, if youre the spouse or child viewing these changes in your loved one, you might just assume they were having a bad week or any number of external factors. If you ultimately do go to the doctor, because you might decide that this is more than just dad’s temper, your doctor could give you a very generic answer. He might give you a blanket diagnosis of 294.8 Dementia NOS without behavior disturbance, with no known onset date and no knowledge of what the future. This is not to say that the medical community isn’t doing all they can to combat Alzheimer’s and dementia, but because it is a brain related disease, we just don’t know as much as we would all like.

The good news is there is a treatment that improves the health and quality of life in most people who have dementia. Proper medication (some of which can be dementia related), nutrition, hydration, and dementia specific caregiving, (keeping them safe, redirecting, allowing them to make choices) can drastically improve someones health and quality of life. However, they still have this disease, and the best treatments are already in place to treat the disease process. For example, when a doctor diagnoses someone with insulin dependent diabetes, which is causing a decline in their health and lifestyle, the treatment is insulin and most likely their condition will improve. We know dementia is a disease where the most common symptoms affect memory and behavior, so we should expect an improvement in health, behavior, and lifestyle with proper memory care related treatment. It is because of this continuous proper treatment and care for the disease process, or previous lack of care, thats causing the person to thrive. Just because you are in great health for a month, while you are taking insulin, it doesnt mean that you should cease the treatment.

The goal when someone has dementia or is suspected to have dementia, is to separate the person from the disease. They should be allowed to have the best quality of life during that challenging and dynamic process, whether that lasts six months or ten years. It may be counterintuitive, but one sign of a good memory care setting can be an improvement in your loved ones daily function. If they are on proper medications as ordered by their doctor, proper nutrition and hydration, and surrounded by respectful, dementia specific caregiving, they can improve both in health and in lifestyle. This alone, is the best reason to ensure that they continue to get necessary memory care.