An Introduction to Dementia
Reasonable thoughts from a Geriatric Nurse Care Manager & Daughter
By: Hildy Sheinbaum, RN
The Dementia Series: Part 1
So many of us are dealing with loved ones at various stages of cognitive impairment, and it is so common to hear friends talking about needing resources and help with “figuring things out.” During this holiday season, when we can once again be together with family and friends, I anticipate that we may begin to see changes in our aging parents’ ability to remember, reason, and respond.
Recently, my colleague Amy Burckhard (Director of Memory Care at Sterling Care) and I put together a series of workshops called “Dementia, Everything You’ve Always Wanted to Know but Were Afraid to Ask.” Our goal was to provide simple, understandable, and useful guidance to those who have a loved one afflicted by dementia. We received great feedback and so I thought I would share some of the information here in a few different posts in the hope that it will be helpful during this holiday season, and thereafter.
We know that the mere word “DEMENTIA” can bring up so much emotion; it can be something that people find difficult to discuss. The Alzheimer’s Association states, “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.” Memory loss is one characteristic of a general dementia, but there are many different dementias known to us today. I won’t go into great detail, but want to just mention the most common types of dementia for informational purposes:
- Alzheimer’s Dementia: is the most common type of dementia that affects memory, thinking and behavior. Two abnormal structures called plaques and tangles are suspected to damage and destroy nerve cells. Plaques are deposits of a protein called amyloid. Alzheimer’s is a degenerative brain disease that causes a slow decline in memory, thinking and reasoning skills.
- Frontal–temporal Dementia (FTD): is caused by progressive nerve cell loss in the frontal and temporal lobes of the brain. It is characterized by a deterioration of behavior, personality, and language.
- Lewy Body Dementia (LBD): is also a common type of dementia that is associated with abnormal deposits of a protein (Alpha-synuclein) in the brain. These deposits, called “Lewy Bodies,” affect chemicals in the brain that can lead to problems with thinking, movement, behavior, and mood. LBD currently affects more than 1 million people in the U.S.
- Parkinson’s Dementia: A decline in thinking and reasoning that develops in many people living with Parkinson’s. There is a change in memory, ability to pay attention, make sound judgements and plan the steps need to complete a task.
- Normal Pressure Hydrocephalus (NPH): is a brain disorder in which an excess of cerebrospinal fluid accumulates in the brain’s ventricles, causing thinking and reasoning problems, difficulty walking, and loss of bladder control. This is one of the few types of dementia that can be controlled or reversed through a surgical intervention called a shunt.
- Vascular Dementia: is a decline in thinking skills caused by conditions that block or reduce blood flow to various regions of the brain, depriving them of oxygen and essential nutrients. This can occur in people suffering a stroke.
- Huntington’s Disease: is a progressive brain disorder caused by a defective gene. This usually manifests during ages 30-50, and can be characterized by uncontrolled movements of the arms, legs, and upper body. People with Huntington’s Disease suffer a decline in thinking and reasoning, loss of memory, poor concentration, impaired judgement, and have difficulty with planning and organizing.
- Creutzfeld Jakob Disease (Mad Cow Disease): is a rare disease where a Prion Protein found on cell surfaces in the body begins to change shape and destroys nervous system tissue. This leads to a rapid decline in thinking and reasoning, and is accompanied by involuntary muscle movements, confusion, difficulty walking, and mood changes.
- Wenricke-Korsakoff Syndrome is a chronic memory disorder caused by severe deficiency of thiamine (Vitamin B-1). This is most often attributed to alcohol abuse or poor nutrition.
Each of these dementia types has specific defining characteristics and a comprehensive work up is crucial in order to get an accurate diagnosis. It is important to understand that people present quite differently and no one person has all of the characteristics of each type. As a result, diagnosis can be difficult, and it may sometimes take months and even years to get an accurate identification. Dementia is not only a disease of memory or communication, but rather it can be so much more. It can impair thinking, speech, movement, and problem-solving abilities. It interferes with family roles and can pose tremendous stress and loneliness onto those going through it.
Acknowledging that there is an issue is one of the most difficult challenges, as well as telling others that a diagnosis of dementia has been made. There can be anxiety about who to tell, how to tell, and there can be an overwhelming fear of social stigma attached to it.
It is important to talk about what general changes in mental acuity are expected during the “normal” aging process in order to understand when we should become concerned. Think about losing your keys, or walking into a room and forgetting why you are there. Have you ever lost your cellphone, or your glasses (that happen to be on top of your head)? As Amy Burckhard says, “these are most likely not a question of forgetting, but more a question of NOT GETTING.” We are so busy most of the time doing too many things at once that we are not paying attention to most of what we are doing. So, we didn’t pay attention to where we placed the keys or where we put the cellphone down, or we got distracted on our way to a room and completely forgot why we were going there. That’s actually quite the typical forgetfulness….. BUT, on the contrary, early signs of dementia are more often things like: forgetting how to do simple familiar tasks (for example, the small steps needed to prepare a meal), not losing your car in the parking lot, but rather not knowing where you are, not knowing the time of year, dressing inappropriately for the weather, putting the car keys in the freezer, or not knowing what the keys are for, forgetting to pay bills, or getting lost on a familiar route.
Remember what the Alzheimer’s Association says: Dementia is a decline in mental ability severe enough to interfere with daily life. SO, what is the first thing you should do if you or a loved one exhibits symptoms of dementia? Don’t ignore the symptoms. I strongly suggest making an appointment with a physician. Remember to make a list of things you want to address and questions you have. The doctor will advise you on what’s next. He/she might recommend a geriatric assessment (locally, The Center for Healthy Aging at Greenwich Hospital, The Adler Geriatric Assessment Center at Yale, or the Memory Evaluation Treatment Service at Burke Rehabilitation Center in White Plains are all wonderful resources). Or, perhaps an appointment with a neurologist may be recommended.
Denying the possibility of dementia may lead you into a false sense of security and put you or your loved one into an unsafe situation. It is so important to be able to understand that dementia is a DISEASE, just like cancer, heart disease, and diabetes. This is truly a disease of the brain and body, and to deny its presence denies you and the person affected with dementia the ability to be free to address the very real challenges you are facing.
As geriatric care managers working with individuals with memory impairment, my former partner and I used a tell-tale indicator to shed light onto a person’s degree of compromise as well as associated safety risks. A person’s response to the question, “What would you do if the curtains are on fire?” gave us so much insight into the situation; while this may seem so simplistic to many of us, it is hardly so for a person with memory impairment. I’ve heard the answers: “I’d blow on them,” “I would call someone,” “I’d hit them,” or simply, “I don’t know.” What is so important to recognize is that for a cognitively in-tact person, it is impossible to understand what a person who is afflicted with dementia is really experiencing. What may seem like common sense to you, is the furthest thing from that to a cognitively compromised individual. Along these lines, the simple concept of “home” may be completely abstract to an individual with dementia. “Home” is a very basic and comfortable concept to a healthy individual; yet very often a person with memory impairment is sitting in his or her home saying over and over again, “I want to go home.” The sense of comfort and familiarity is completely lacking.
Community settings can provide structure, freedom, and safety— things that can often be obscured in a home setting. Community settings can provide the safe space for a person with dementia to walk within or wander both indoors and outdoors. They also can provide individuals with the stimulation that can be lacking in a home setting: current events classes, music, art, theater, etc. in addition to a therapeutic environment with professional staff who can monitor medications and behaviors, as well as provide support for family members.
Over the years I have worked with families who struggle with making a decision to move a person with dementia into a community setting. Some have “promised” not to “put” their loved one “in any of those places” and may feel trapped. But the very promise made at a very different time may be the very thing that ends up making a situation untenable. Something that is so important to keep in mind.
My next blog will focus on strategies to use for managing care for persons with memory impairment.
In the meantime, please refer to some helpful resources:
Normal vs. Abnormal Aging with Teepa Snow
https://www.youtube.com/watch?v=geOFu6iU_Uw
Bookcase Analogy
https://www.youtube.com/watch?v=kkvyGrOEIfA&t=2s
Stay Well!
