~The Filing Cabinet~
Dementia takes a huge structural toll on the brain. For many persons this “toll” is two pounds or so of the original three pounds of brain tissue lost as dementia kills the brain cells and the body removes them as waste. As we work through what dementia is, sometimes it helps to think of the brain as a set of filing cabinets.
Each of the drawers of the cabinets is full of files. The files in each drawer represent memories. Decades of memories, files of persons or events, files of early childhood, teenage years, young adulthood, parenthood, etc. Every part of a person’s life is in a file.
As the disease progresses, the files are corrupted. Typically the destruction is backwards in time, especially with Alzheimer’s. That’s why it is no longer this year or this decade, but last year or last decade. The damage in the files is bit-by-bit, piece-by-piece. In the beginning, the disease is very slow. Pieces of information, steps to tasks, names, coordinated movements are gradually lost. First a word here or there is lost, then a sentence, a paragraph, a story and finally the file itself is gone. Eventually the brain’s memories (files) are empty.
This slow and subtle loss can make it appear as though the person really understands what is happening around her and that she is pretending not to understand or remember. But in actuality, it is the brain trying to find information that is forever lost or located in a part of the brain that the cellular structure can no longer reach. It is trapped in a bit of healthy tissue surrounded by holes or badly damaged tissue.
As time goes on and the disease continues, some files are lost completely, while others suffer severe damage. I often hear families complain about how their mother is being “stubborn” or “refuses to do therapy” or some other task. We now know that she is not refusing to participate in therapy or being stubborn or trying to make your life harder, she has damage in her files. People with Alzheimer’s simply cannot take advantage of the memories in their files to help with their everyday activities, because the files are damaged or gone.
This means she is not just being stubborn, although it may certainly appear that way. Instead it means everything she does, from recognizing her children to feeding or dressing or cleaning herself, to behaving in a socially acceptable way is happening the way it is, because her files are damaged.
Think about the sudden need to go to the bathroom. You and I get up and go without a second thought. We finish and return to the previous task. But for a person with dementia, the corruption of the files by dementia means that memories that are second nature to a healthy adult will have vanished, because of destroyed brain cells. The bathroom is only one example of what makes up each of our days. The same challenges faced in the bathroom eventually happen in all of our daily activities.
Think about a bath, getting dressed, or cooking a meal. Taking a bath is more than four-dozen steps, starting with remembering you need to take a bath, knowing where the bathroom is, knowing how to undress. It is getting water to turn on or off, setting the right temperature. Bathing is knowing what to do, how to do it, knowing you need to rinse the soap off and dry. And then she must know how to dress in a clean clothes.
Getting dressed means removing soiled or dirty clothing and replacing those items with fresh clean and appropriate clothing. Making the process more complex are shoes that tie versus slip-ons, or belts, buttons, zippers, and bras. Think about the last one for a second. Bras are pretty complex to get on and off, usually about 10 steps. And there are dozens more for each level or phase of dressing or undressing.
Cooking means remembering how to prepare food to eat and how to remember to prepare safe foods. It means dealing with heat and fire, and unspoiled food and pots, pans, seasonings, etc. And it means remembering to turn the stove on and then off after the task is complete.
Memory for persons with dementia also tends to slip away in a reverse chronological manner. We begin storing memories from the time of our birth and we build on those memories throughout life. We learn to hold our heads up, hold our body erect, we lean on our hands, and knees and rock, we start pulling up and trying to balance, we take a few steps and fall, over and over again. Then suddenly it seems we are walking and running and moving in a coordinated and safe manner. No more bumps on the head, no more bruises on the knees.
The reality is walking consists of files and files of memory learned over months of time. The files are stored in some very specific brain areas (motor and pre-motor cortex) but also some component of balance and walking and steps and procedures to movement is in different areas or lobes. Alzheimer’s disease, and all other dementias, changes all of this, robbing an adult of movement, memories and abilities in reverse order of how each skill was learned.
This means the most recently stored memories are often the first to go missing. A man in the middle stages of Alzheimer’s disease may be able to describe in detail the first car he bought 50 years ago, but may not remember where he lived after retiring. A woman who can describe her first date in high school may not recognize her grown daughter.
You may already realize your loved one can talk longer about events from the past. That’s because these memories, these files, are more deeply embedded. The files are bigger; there is more material there to draw on. There are more of these files stored in the brain and many of them may have been in place since early childhood.
Think about what is in these early files. They include family, social skills, ADLs, language, singing, cursing, movement, etc. First we learn our parents and family, brothers, sisters, grandparents, cousins, aunts and uncles. We learn social skills like “please” and “thank you.” We learn an entire conversation known as the social conversation. It starts with “Hi, how are you?” And immediately follows with “Fine, how are you?” This memory is so ingrained in your files, your brain, you don’t even think about what the conversation even means. It’s automatic.
You learned to eat with your fingers, then a spoon, and finally a fork and knife. You learned to hold a glass and drink without spilling. You learned to bathe. But now the disease is progressing and everything is going backwards In time, your loved one will start looking for home, but it is not the home you know. It is the home with Momma and Daddy. Understand?
Use these old files to enjoy time together and help your loved one’s world make sense one more time. Respond to the emotion, not what was said. If she asks or talks about wanting to go home, respond to the emotion of the memory and ask about her home. Ask what her home looked like, smelled like, ask was her mom a good cook? Talk about the ones she loved. You might just find a wonderful memory left in there that’s not been heard before.
Martha was a wonderfully pleasant lady living in Washington DC. She was 81-years-old. Her daughter’s name was Judi. Judi was 53 and prematurely gray. A loving and kind daughter, Judi visited her mother everyday in the dementia community where Martha lived. But the visits were unsettling for Martha. After each visit, Judi was upset, Martha was upset, and the other residents were upset. After meeting with the daughter I went to see Martha.
We exchanged social pleasantries, those “Hi, how are you?” conversations and Martha was fine. Eventually I began to ask about her life. Then I asked her if we were a country at war.
“Well of course we’re at war,” she replied.
“Who are we at war with?”
Giving my question careful thought she replied, “Well, I can’t remember his name, but he’s got a funny little mustache.”
I continued, “Who is our president right now?”
Without hesitating and speaking with what appeared to be great pity for me that I would need to ask her such a question she answered “Why FDR of course.”
“What year are we in?”
“Why it’s 1944.”
To fully comprehend this story, you have to understand what Alzheimer’s was doing to Martha’s brain and her filing cabinet.
In 1941, Martha moved to DC from her small hometown in the mid-west to work at “the War Department.” (The Pentagon was called the War Department in WWII). She was one of the millions of women who left their homes and families and relocated to support the war effort. In 1944, Martha was a 24-year-old secretary to an Army general. She didn’t meet her husband until 1950 and didn’t marry until 1951. Her daughter was born in 1952.
Have you solved the mystery?
Because Martha’s files are being destroyed in a backward fashion, her current beliefs about time and her orientation have changed. Her reality was not the year 2005 (the year I met Martha) and a war in Iraq, but 1944 and a war with Germany, Japan, and Italy.
Every day, her daughter came to see her, always bringing her some chocolate candy. Every day the daughter called Martha “Momma.” And ever day the daughter said, “I’m your daughter,” when her mother would thank her for the candy and then ask who she was.
Were you able to solve the mystery?
If Martha thinks it is 1944 and she is a single, 24-year-old woman, then how could this “old” woman be her daughter? Martha doesn’t remember the year and doesn’t understand she is 81 and not 24. In Martha’s memories, she can’t have a daughter because she didn’t remember having a daughter. She didn’t recall her husband or her marriage of 48 years because those files are gone, erased by the disease. In her mind, if she doesn’t have a husband, she can’t be married. If she isn’t married, how could she have a daughter?
We solved Martha’s daily dilemma by having the daughter continue the visits, but not focus on her role as a daughter. Instead she would relax and enjoy the candy as they chatted. Judi became that “nice lady who brings me chocolate,” rather than that “strange old woman who calls me ‘momma.”‘
This article and many others are in my book, Untangling Alzheimer’s.
Tam Cummings, PhD, Gerontologist