As you deal with dementia, you may hear your doctor or health professional use specific medical terms – amnesia, aphasia, agnosia, and apraxia – to describe the effects of the disease. These “A’s” are seen in all types of dementias, not just Alzheimer’s.
Understanding the A’s and their associated behaviors is important. This knowledge will allow you to provide better information to your loved one’s medical professionals. Changes in your loved one’s affect (how she shows emotion on her face) may be an early sign of dementia. Increased anxiety or sudden and uncharacteristic episodes of anger might be a first clue.
You may have noticed fluctuations in her ability to pay attention, an increase of agitation or an overall apathy. These first A’s are subtle and can make us not want to be around our loved ones. But at the same time, they can also provide clues to the beginning and very subtle symptoms of dementia.
Another reason to be familiar with the A’s is that the strange confusing and hurtful behaviors you may experience from a person with dementia will have reason and meaning. The more you’re aware of these, the more prepared you’ll be to care for your loved one and for yourself.
As you read about the A’s, keep in mind the behaviors of each “A” can be seen individually and eventually, in conjunction with each other as their specific components begin to overlap. In other words, both amnesia and aphasia can lead to confusion about a person’s identity but for different reasons.
Let’s get started.
Amnesia: Inability to Use or Retain Short-Term or Long-Term Memories
Amnesia is the inability of the brain to use, make or retain short-term (new) or long-term memories. This is generally the first sign of dementia that families report noticing. Remember that regular onset Alzheimer’s starts in an area at the front of the temporal lobes and the back of the frontal lobes, the two brain lobes that control hearing, language, smell, personality, attention, cognition, rational thought, judgement, imagination, and of course, for the Four A’s purposes, memory.
Amnesia impacts different kinds of memory, including language, procedures and life events. Amnesia is seen early in the disease process and can cause caregivers to become impatient and frustrated.
Your loved one may forget words. One of the earliest signs in the disease process is often heard rather than seen. A mom, for example, may remember a child, but not remember the correct word to describe that child. So she may introduce her son as her husband or her daughter as her mother.
She is pulling words to describe family members from the memory file of family words, but she is getting the wrong one in spite of knowing who each child is. Perhaps you’ve seen when she is trying to express the need to go to the bathroom or for a drink of water, she may talk about rain or wetness. Again, she is in the file containing words for wet or water, she’s just getting the word wrong.
She may repeat questions or stories, often within minutes of hearing the answer. You might, for example, pick up your mother and tell her you’re taking her to an appointment with the eye doctor. Five minutes later, she asks where you’re taking her. You tell her again that you’re driving to the eye doctor. Five minutes later, she turns to you again and asks where you are going. It is critical to remember in this early stage, your loved one will not appear to be physically ill.
She may be unable to perform tasks. Eventually amnesia causes a person to forget procedures needed to perform specific tasks, such as writing checks, cooking a meal or taking a bath. Many family members begin to realize they are facing a serious problem when they find bills unpaid or hidden away, or when a normally fastidious parent stops taking showers or washing dishes.
She may misplace belongings. Because of amnesia, the person with dementia often cannot remember where she placed items. This often results in accusations directed toward family members or caregivers such as “You stole my purse” or “You hid my keys.” This type of behavior is a hallmark feature of Stage Five of the disease process.
It is hurtful and embarrassing to be accused by your own mother of stealing her car, jewelry, or bank accounts. Try to understand this behavior is a result of physical damage in the brain that has changed her reality.
In your mom’s world, she knows she always puts her purse on the chair by her couch. Her brain tells her she does this and she remembers doing this, but now the purse is gone. Because you are with her, her logic tells her you must have stolen the purse.
Later on when she finds the purse in the freezer, she doesn’t think, “Oh I should call and apologize to my daughter.” Instead she thinks something like, “What a sneaky person. Look where she hid my purse. I better hide it from her or she’ll do that again.”
And the cycle of losing and hiding and accusing begins anew. Understand that most families who have a loved one with dementia are hearing the same sort of accusations and that no amount of reasoning with that person will help her see the truth of the situation.
She may lack sound decision-making abilities. Memory lapses can cause poor decisions. Alzheimer’s people simply forget that they are not allowed to drive a car or that they must turn off the stove after making a grilled cheese sandwich.
Even though she looked sincere and was truly sincere when she promised not to drive the car or turn on the stove, her damaged brain didn’t take in and hold onto the new information. What her brain remembers is she can drive a car, because she’s been driving a car for decades. Or she knows how to safely cook food. She may give away large sums of money to family members or strangers. (Be aware this can happen in person, via mail or over the internet.)
Keep in mind memories are typically lost in the reverse order of how they were formed, as explained in Chapter 5 of my book Untangling Alzheimer’s. This is why recently learned information – someone’s short-term memory – goes away first and why a normally organized mother continues to ask the same question over and over. She may insist she wasn’t given breakfast even though she ate a stack of pancakes five minutes ago.
This inability to form new memories is why she gets mad she wasn’t told about a family gathering for a birthday or forgets where she put her keys and accuses her husband, children or caregiver of hiding them.
Using the files
Eventually the Alzheimer’s person will turn to older memories, to fill in gaps in the current memory. This explains why a mom who doesn’t remember where she has lived for the past 40 years asks to go home. She’s looking for that particular home where she grew up because those are the memories her brain is now using.
When she looks around at her current home, she doesn’t recognize it. Instead her brain remembers her parents’ home is located in the small town of Pearl, Texas. And that’s where her brain tells her she needs to go. This is a common occurrence when a person is moved into a community, or when you move your loved one in with you.
You’ll find many residents or your mom continually requesting to go home. She may tell you it is because her mom and dad are waiting for her, she needs to cook for her children or she has to got to work. This happens despite the fact her “home” no longer exists except in her mind (and heart).
Amnesia’s reverse chronological memory loss pattern also helps explain why the youngest child may be forgotten first while memories of the oldest child remain. (This is not true for all dementia patients as some retain the memories of all their children). In some cases, a parent who doesn’t recognize her own children may refer to them by the names of a relative – a father, mother, sister or brother; a cousin, aunt or uncle – who that child resembles.
What is happening is her brain is drawing on familiar facial features that make individuals from one family tend to resemble each other. When your mom doesn’t recognize you, your file is damaged or gone. However, because your resemblance to her sister remains, her brain says you must be that sister.
We all carry our family features. Some genetic characteristics are stronger than others, but they are there. For example, if you looked at all of my nieces and nephews, you would be able to tell they are related. They are the products of my four siblings all with similar features.
Without a doubt, amnesia behaviors are confusing and stressful for family members, especially because dementia doesn’t cause anyone to look sick in the early and middle stages. Also, in the beginning stages of the disease, the memory can be slippery. Sometimes she can grasp it completely, and sometimes she can only use a portion of it. One consequence of these behaviors is that family caregivers can easily lose patience and snap at their loved one because it seems as though she is doing these annoying behaviors on purpose.
However, if you look at memory loss through the eyes of the person with Alzheimer’s, you can envision how confusing life can be. Imagine being told over and over that the strange woman with the gray hair is your daughter when, in your mind, you work at the war department and never married. Or imagine thinking that your husband has turned into a sneaky, mean and spiteful man who continually hides your slippers and newspaper.
Her Reality is Your Reality
Unfortunately, trying to correct amnesia creates greater confusion and paranoia for your loved one, and may lead to outbursts or aggression if she becomes convinced you are lying. This means the best way to deal with amnesia behaviors is not to correct the individual or to try to get her to remember. This is hard to do because as humans we are natural teachers who have to correct mistakes. Think about the thousand times you corrected your child’s speech, or said, “No do it this way,” when explaining something.
In caring for a person with dementia, you need to go along with her perceptions and memories by understanding that her reality must become your reality. We used to believe that we could reorient a person to reality if we just repeated enough. So every morning, in every community, the activity department or the caregiver would say the day’s date, year, president, month, week and so forth.
But what we began to understand was insisting to a lady who thinks the year is 1942 and she is single, that the year is 2019 and she is a great-grandmother not only scares her, but it also makes her paranoid. Imagine if right now all the people around you began to insist the year was 2030. You would wonder what was wrong with you that you didn’t know the correct year, or you might decide to stay away from those “crazy” people.
If your mom asks for the salt and you know she meant the sugar, just hand her the sugar. Instead of insisting to Mom she was actually invited to the birthday party but forgot, just move on. If she can’t find her purse, but you find it in the cupboard with the cereal, don’t berate her for putting it in the wrong place. Just hand her the purse. If she inquires about where you found it, just tell her you found it.
Aphasia: Inability to Use or Understand Language
The second “A” of dementia is aphasia, or the inability to use and understand language. This gradual loss of communication skills takes place as the temporal lobes are attacked and damaged. Aphasia will begin to overlap with amnesia because memory, speech, language, and hearing are closely linked. The left lobe of the brain contains words and name memories while the right side holds pictures and faces, all key objects we need to recall and use language.
The level of language loss depends on the stage of the disease. In the early stages, you may just see occasional word substitutions of related words, such as using the word “son” when referring to a husband or the word “coffee” when talking about tea. Or similar sounding words may be interchanged, such as the use of “bat” instead of “hat.” These so-called slips of the tongue happen to everyone occasionally. Only when they become regular occurrences should a family begin to suspect a problem related to dementia.
As the disease progresses, additional language problems will surface, and a person’s speech will grow more confusing and difficult to follow. For example, instead of substituting a related word, the person may begin to use an unrelated or unintelligible word. Pronunciations may be incorrect or words may run together. And as someone has more difficulties retrieving correct words, she may start to use vague terminology like “whatchamacallit” or else launch into a lengthy description of an item to substitute for a loss of vocabulary fluency. “You know, that thing, you know we use it to you know, that thing.”
Toward the later stages of the disease, expect a lot of repetition of words or phrases. Eventually, the Alzheimer’s person will be unable to follow simple directions or even express through words that she is hurt, sick or hungry. And you can anticipate a loved one who speaks more than one language to revert to her original one, as these files of her first language have existed longer in her memory.
If you don’t know your mother’s native language, you will need to prepare a communication book of common words such as bathroom, water, thirsty, doctor, pain and hungry. If your mother is in a community and no caregivers speak her language, the facility will need a book as well. I was once in a dementia community in Virginia where 10 separate language books were being used by the staff to communicate with its diverse residents.
Aphasia behaviors can be frustrating for families. Early in the disease, an Alzheimer’s person will laugh off a mistake, deny she made one, or simply nod and pretend to understand. As language skills deteriorate more and the capacity to communicate plummets, you’ll find it even more difficult to meet your loved one’s needs. What’s important to remember is this is not happening because your loved one is absentminded, stubborn, or cruel. Instead, her brain is under attack and she cannot help or stop her increasing confusion.
Many families have difficulty understanding the extreme loss of language a person with dementia suffers. Because the person doesn’t look sick, because the automatic “yes/no” speech is still functioning, or because you love this person very much, her language loss can be hard to accept. Once the subtle changes in the use of language occur with speech, the person is also having difficulty understanding what is being said.
I tested a man once whose wife insisted he understood at least 90 percent of what she was saying. The test indicated a rate of about 30 percent. Imagine how angry she was with him at times because he didn’t respond to her or do what she asked? He wasn’t trying to be difficult; his brain just didn’t understand the words.
To accommodate the changes in language abilities caused by aphasia, family members and caregivers will have to adjust how they communicate as the disease progresses. Chapter 8 of Untangling Alzheimer’s is dedicated to dealing with communication issues throughout the course of dementia and provides tips about how you can accommodate these challenges.
A man I know was struggling with his mother’s advancing dementia. She had been a bright and vigorous little woman until being diagnosed with Progressive Aphasic Dementia, a lesser-seen Frontotemporal Dementia that causes significant damage to the lobes of the brain involved with memory, speech and language.
After years of the disease, she had little speech or language abilities left, and had not spoken a complete coherent sentence in months.
One day John was confronted with a tearful, flustered mother who’s language loss kept her from telling him why she was perturbed. Not only was John at a loss of what to do and how to comfort his mother; he harbored great guilt about his mother’s disease.
As a younger man, John had struggled with addiction. He had been lost to his family over the years and the overwhelming loss of his mother to dementia threatened to stop him from ever making his apologies.
Because John’s mom was in an assisted living community, he could have easily alerted the staff to his mother’s condition and left the building. Nonetheless, as she struggled that day with her agitation, John remained near in her room. When she allowed it, he began to pat her hand. He spoke soothingly to her and told her repeatedly how much he loved her.
As she calmed, John began to pour out his heart to her. He told her how sorry he was she was upset and how he wished he could help her as she had so often helped him. John told her he loved her for being his mother and how he wished he had gotten sober before the disease had taken her away. John sobbed as he apologized for the hurt and pain he had brought to the family and for the years he had stayed away.
John’s mother, who had calmed down by this point, held tightly to his hand and looked squarely at his face and said, “I thought of you always.”
That was the last complete sentence she ever spoke. The following year as she lay dying, John and his sister Mary stayed by her side. “I thought of you always” became the final powerful memory John kept of his mother.
Tam Cummings, PhD, Gerontologist