Jill Rosner, R.N., B.S.N. – Guest Contributor – Rosner Healthcare Navigation
Most of my articles come from my experiences in my daily life as an Aging Life Care Manager. All of the topics are meant to educate my readers and bring awareness to issues related to health and aging. Many of my clients are living with some form of dementia. The take-home message that I want everyone to know is that dementia does not come with a list of manifestations that do or will happen to everyone affected. There is no cookie cutter Alzheimer’s disease or form of dementia.
The most frequently asked question in which I encounter from my client’s family members tends to be: “What is the difference between Alzheimer’s disease and dementia?”
The terms have become almost interchangeable over the years. The reason perhaps is because Alzheimer’s disease accounts for the largest percentage of diseases causing the symptoms, which are referred to as dementia. Dementia itself is not a disease process; instead dementia is a group of symptoms caused by a disease.
It is perhaps easiest to think in terms of diseases that cause symptoms that have other consequences to the rest of the body. For example, diabetes, which causes high blood sugar and the effects of having a high blood sugar. The symptom of high blood sugar and the consequences that accompany diabetes is a result of an unhealthy pancreas, which is not functioning properly. The pancreas either does not produce insulin or produces too little or is resistant to insulin, depending on what kind of diabetes is diagnosed. So, the high blood sugar and other symptoms is not the disease itself but rather the result of an unhealthy pancreas or a disease affecting the pancreas.
The same holds true for dementia. Dementia is not the disease but rather the symptoms caused by an unhealthy brain or neurologic disease affecting the brain.
While Alzheimer’s disease has most often been considered to be the culprit of these symptoms, there are many other forms of diseases affecting the brain causing dementia symptoms. Vascular disease, high blood pressure, stroke or transient ischemic attacks (TIAs) can lead to damage in the blood vessels in the brain, which can lead to a condition called vascular dementia. A condition, which causes formation of what is called Lewy bodies in the brain, which, causes a disruptive in the brain’s functioning, and is referred to Lewy Body Dementia. Frontal temporal dementia affects the frontal and temporal lobes of the brain, and results in symptoms of dementia. These are just the top of the list of causes of the symptoms of dementia. Various other forms of dementia exist.
The most important piece to remember is that all types of brain diseases that cause dementia symptoms may have different manifestations or different symptoms. This has been an increasingly important issue. It’s no longer your great-grandmother’s dementia. Once referred to as senility, the symptoms we think of are those of the very “old” person who has lost their memory and shuffles about – perhaps wandering and eating too many sweets – are the easiest to diagnose. However, the less common symptoms or behaviors are becoming more of a problem in the diagnosis of dementia.
I am seeing more and more patients affected by dementia at a younger age and more and more patients affected by symptoms that are not typical and may be less obvious signs. I have seen patients dismissed and assured that they are just fine because they don’t fit the old, outdated mold. I recently had a nurse say to me “she is too young to have dementia” when my client clearly had been diagnosed and had severe symptoms of dementia. Even modern medicine and practice has not caught up to the realities of the epidemic of brain dysfunction that is causing myriad of symptoms.
The most disturbing lack of insight comes from the lack of knowledge that memory loss does not have to have the primary symptom of dementia. Too may people are being misdiagnosed or not diagnosed at all because they are able to answer the typical type of questions such as “What’s your name? What’s the date? Who is the president?” and a few others. Amnesia or memory loss is just one symptom, and for some forms of dementia, memory loss is not the prominent feature!
In the case where the frontal lobe of the brain has been more severely affected by frontal-temporal dementia, shrinking of the brain or injury of some sort in the case of vascular dementia, the symptoms may be very different from that of Alzheimer’s disease – where the memory is primarily affected.
The frontal lobe affects behaviors such as impulse control, the filter between the thoughts and the spoken word. For example, some behaviors include: blurting out inappropriate language or taboo thoughts and executive functioning. The ability to sequence and organize is affected. Insight and judgment are affected. This sets the stage for exploitation and poor decision-making. Paranoia and delusions can be features of dementia.
More and more I see clients who don’t have the typical memory loss, and therefore are not being recognized as having a cognitive impairment or dementia. These unfortunate people are making terrible decisions, are being financially exploited and are often taken advantage of during everyday life. They are often subject of undue influence where they are easily manipulated into complying with the wishes of another, without understanding the consequences of their actions and acting of their own free will because their judgment is affected. This different or unusual manifestation of dementia often leads to the misdiagnosis and misunderstanding of dementia.
The main messages again is this: Do not assume that all forms of dementia produce the same symptoms or have the same consequences. Just because one’s memory seems to be fairly good does not mean that the person is not impaired. Do not make assumptions! It’s a new and ever evolving world of dementia. If you recognize that something is just “not right” with your loved one, friend or co-worker, I encourage you to tell their doctor, discuss your observations with others who have contact with the affected person, and advocate for intervention. You could be saving that person from being taken advantage of or being overlooked as having a problem. Far too often the problem is not addressed until way too late in the course of the disease process.
For more information contact the Alzheimer’s Association at www.alz.org.
Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at [email protected]