Tag Archives: behaviors

What Type of Dementia Is It?

When you mention that someone has dementia, the first assumption people generally have is that it is Alzheimer’s disease. However, there are several possibilities as to what type of dementia a person has. Not all are easy to diagnose or differentiate. This leaves us all with some confusion when trying to understand or even talk about what is going on.

Dementia: Is It Alzheimer’s?

To date, Alzheimer’s can only be diagnosed with certainty after death by examination of the brain. However, there are certain ways symptoms progress that lead physicians to conclude a person most likely has Alzheimer’s disease. Hence, the informal diagnosis of Alzheimer’s in someone still alive.

There is much current research with the goal of being able to diagnose Alzheimer’s while a person is still alive. Our population is aging fast and cases of dementia are on the rise. Therefore, such a discovery is high on the list of priorities in medical research. Until that discovery happens, what do we know?

The Types of Dementia

The Mayo Clinic https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447  lists various types of dementia.  They are Alzheimer’s, vascular, frontotemporal, and mixed dementia, as well as dementia with Lewy bodies.  Then, there are the additional disorders with a large dementia component, such as Parkinson’s.

Note: Someone can have some of the symptoms of dementia due to other disorders, such as substance abuse or major depression. However, here I would just like to focus on dementia independent of other “temporary” causes.

Differences in Symptoms Per Type of Dementia

Again, per the Mayo Clinic, the following progression of symptoms help determine what type of dementia a person has.  Clearly, there is a lot of overlap.

Alzheimer’s Disease:  Memory loss of recent events gradually progresses. Language difficulties, impaired judgment, and mood changes are common. Rarely occurs before age 65. (See below for more detailed information regarding the stages of Alzheimer’s.)

Vascular Dementia: Onset is abrupt, caused by a large stroke or a series of smaller strokes. In comparison to Alzheimer’s, memory loss is generally milder and physical disability is worse. Repeated strokes cause additional brain damage.

Frontotemporal Dementia: Personality and behavior problems are usually the first symptoms to appear. Memory loss happens later. Usually occurs age 40 to 70. (The December 2017/January 2018 edition of AARP magazine describes this disorder.  Read this very sad article, “What Happened to My Husband?”)

Dementia with Lewy Bodies:  Concentration problems and disorientation are usually the first symptoms. Visual hallucinations are common. Active symptoms can alternate with periods of apparent normalcy. Stiffness, tremors, and slowed movement may develop.

Mixed Dementia:  A triple whammy of the symptoms of Alzheimer’s, vascular dementia, and dementia with Lewy bodies.

Additional Causes of Dementia

Huntington’s Disease:  Severe decline in thinking is the hallmark symptom.  Age 30-40

Parkinson’s Dementia:  Symptoms mimic dementia with Lewy bodies. However, the problems with body movement begin a year or more before there are cognitive difficulties.

Creutzfelt-Jakob Disorder:  There is rapidly worsening confusion, disorientation, and problems with memory, thinking, planning, and judgment. Depression, mood changes, difficulty walking, muscle stiffness also mark this disorder. Rare. Age 60

Traumatic brain injury:  Signs are memory loss, depression, explosiveness, impaired speech, and slow movement. Symptoms can show up years after the trauma.

Primary progressive asphasia: Impaired speaking and language are the primary symptoms. Short term memory is usually not affected. Age 50-70.

Further Complications

To make things even more complicated, symptoms of Alzheimer’s or dementia with Lewy bodies, for example, can be accelerated by eventual strokes in the elderly.

Also, there are ways dementia can be brought on that affect the progression of symptoms. For example, a medical emergency can abruptly bring on symptoms, effectively skipping the early stages of dementia.

The Stages of Alzheimer’s Disease

Because Alzheimer’s is the predominant label we hear, it may be helpful to know how the National Institute on Aging (NIA) describes the stages of Alzheimer’s.  (See “Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging.”)

Mild:  There is some memory loss, and small changes in personality. The person may not be able to solve simple math problems or may lose the ability to plan and organize.  For example, making a grocery list and then being able to find the items in the store may become impossible.

Moderate:  At this stage, there is more obvious memory loss and confusion, more trouble organizing, planning, and following instructions. The person may need help getting dressed, start having problems with incontinence, and have trouble recognizing family members and friends. They may not know where they are or what day or year it is, become restless, and begin to wander. Repeating movements late in the day and having trouble sleeping are common. More serious personality changes may include making threats, accusing others of stealing, becoming physically aggressive, cursing, screaming, or grabbing things.

Severe:  The person needs help with all daily needs. They may not be able to walk or sit up unassisted, not be able to talk, and often cannot recognize family members. They may have trouble swallowing and even refuse to eat.

The NIA describes these stages as Mild, Moderate, and Severe.  However, you could also describe them chronologically as Beginning, Middle, and End stages.

So, What Type of Dementia Is It?

Yes, it might be Alzheimer’s, but it also could be one of the other types of dementia listed above. Yet again, it could be dementia of a type and due to causes that we just don’t know about yet. We are living longer now. It is not strange that our brains, as well as other parts of our bodies, are showing wear in new and sometimes inexplicable ways.

Socialization and Dementia

Is someone with dementia able to socialize with new acquaintances, or is socialization limited to family, known for a long time, and interactions with staff, vital to survival?

A Great Setup for Socialization

Because Mom is in a care home, I thought she would enjoy socializing with the other five residents as well as with the staff. I couldn’t have been more naive. Mom has been in her care home for almost nine months. She still doesn’t even know the names of the other residents let alone displays enough interest in them to talk to them. I find this loss of socialization and the state of isolation it brings very sad and incomprehensible.

Lost Opportunities for Socialization

Mom has at least formed a good opinion of one of the other residents. “He’s such a nice man,” she will say of one of the two male residents. It is the only positive statement she has made about any of the residents. The other male resident is bedridden, so it is not surprising that Mom doesn’t know who belongs to what is merely a voice down the hall.

There are three other female residents, as well. All the four women spend each and every day in the living room together, sitting in the same chairs, each covered by a blanket. Mom is aware of only one of them.

No one can fail to notice Betty. Betty is the source of drama at Mom’s care home. Betty goes on a jag about every three months and gets nasty and rebellious, refusing to eat or take her medications. Her appalling behavior, including stomping out of the front door with her walker and screaming for the police and berating the mail carrier, inevitably escalates to a call to the police and the ensuing 72-hour hold at the hospital.

Betty is equal opportunity mean. She distresses the staff as well as the other residents and any unsuspecting visitors.

Mom doesn’t like her. Betty targets Mom because Mom gets visitors, otherwise known as me, whereas Betty’s children refuse to have anything to do with her for some unfathomable reason. I have arrived and been told that Mom has been crying because Betty was being a harridan again.

Because Betty makes life miserable for everyone, staff has been trying move her elsewhere, preferably to some gulag in Siberia. So far, no cigar, not even poor quality vodka.

Then there is Sarah. Sarah is a very sweet, gentle lady. Mom’s awareness of Sarah is limited to the following:
Sarah sneezes.
“Bless you,” I respond.
Mom asks (every single time), “Who are you talking to?”
“To Sarah. She sneezed.”
Mom peers over the great expanse of approximate five feet that separates her from Sarah as if she never knew someone else was there. This is in spite of the fact that any time Sarah is taken to the bathroom or to her room for an after lunch nap, Sarah passes within inches of Mom’s feet. And yet somehow, Sarah does not exist for Mom.

The final resident is Grace. Mom completely ignores Grace when Grace starts talking.  Admittedly much of the time, Grace is talking in her sleep. Grace sleeps much of the afternoon due to age and medication. When she is awake and moving, Mom will come up with some truly stellar questions and remarks.
“Is that a real person?” Mom asks.
“Yes, Mom.” (You’ve got to be kidding me. Really? No, Mom. that is really an artificial intelligence creature placed there to take up space.) That’s Grace. She was taking a nap.” (I may think exasperated and snotty, but I somehow never express it in the moment. I am a coward.)
Mom then launches into one of her soto voice tirades. I can only get the gist of her disapproval that someone dares to be sleeping out in the living room all afternoon long. I guess when Mom falls asleep, time just stands still, and it does not violate the strict manners of a proper lady.

Socialization with the Staff

Mom does much better with the staff. No, she still can’t remember any names, not even Anne’s who is there five or six days a week. However, Mom banters and jokes with the staff, if by joking we include threats to kick them in response to their reminder to keep her feet and arms in so as not to get hurt while being wheeled to and from the bathroom. They act as if she is funny whereas my eyes get wide, and I want to apologize.

I guess they are accustomed to her aggressive/critical ‘humor.’ I remember Anne’s story about lunch being delayed for some reason while all the residents were waiting at the table. She related how she told them, “Sorry we are running a little late. Lunch is coming.” Mom replied, “So is Christmas.”  Ha! ha! ha!

I don’t find it funny. I find it rude and critical, but then I grew up with Mom, and Anne didn’t. Anne thinks it indicates that Mom is still sharp in some ways. Right. Sharp as a knife shoved in your gut and then twisted. But, we all have a different perspective, and I am truly grateful that the staff seems to find her amusing rather than acerbic. However, If Betty ever does get shipped out, Mom may be in trouble.

Socialization Conclusion

So, the answer to my question is that, in my mother’s case, she is not able to socialize other than with me, with my husband, and with my sister when she visited, and with the staff. She is unable to reach out to the residents around her. They serve no purpose for her, and that I find very sad.


Sundowning and Dementia

Recently Mom has exhibited increased agitation and anxiety especially at night. When symptoms increase at the end of the day, doctors refer to it as sundowning.

Mom’s Symptoms of Sundowning

Previously, Mom went to bed around 6:00 and slept through the night.  Now instead, she talked to herself until 10:00, repeatedly wadded up her blankets, called for staff several times during the night, maneuvered herself sideways in the bed or scooted up against the headboard until her neck was cranked. Overnight staff repeatedly repositioned her and settled her. For the first time, she fell out of bed.  The second time it happened, it became clear she was trying to get out of bed, forgetting that she couldn’t stand or walk.

I consulted with Mom’s doctor who prescribed a sedative commonly used for sundowning in dementia. It would calm Mom and make her sleepy, theoretically anyway.

The Effects of Sundowning During the Day

All this activity during the night naturally resulted in increased napping during the day.

My visits with Mom deteriorated to five or ten minutes of conversation at some point in the two-hour visit, or none at all. The rest of the time, she was deeply asleep. Occasionally, she talked to herself in her sleep. The snippets I could hear over the tv music channel were “She didn’t have that on her,” an annoyed “Don’t look at us” as if she was talking to staff, and a complaining “She comes in and sits down and gets up and leaves.” I wondered if she was referring to me.

A Related Complication

A few days during that three-week period Mom was actually awake and alert. It was then, I discovered that even during the day she no longer understood that she couldn’t stand or walk. During my visit, she tried to get out of her recliner three times. I watched her scoot herself forward until stymied by the challenge of the footrest.

“Do you need something, Mom?” I asked.

“Oh, I was just wondering what we have for dinner.”

Since that was my first experience of Mom attempting to get up, I thought it was an aberration and joked, “Oh, a little bit of this added to a little of that.”

She laughed and sat back.

The second attempt came about twenty minutes later.

“Do you need to go to the bathroom, Mom?”

“I thought I’d turn the oven on.”

Okay, so now I understood she was truly concerned about dinner and thought it was her responsibility to provide it. So this time I answered her seriously.

“I think Alice is getting dinner, Mom.”

“But does she have enough for . . .”  Mom gestured around the living room where three of the other residents were sitting.  “ . . . all of us?”

“Yes, she is cooking dinner especially for all of you.”

“Oh. Well, that’s nice of her.”

I thought I would put her mind further at rest by actually going to the kitchen. I told Alice that Mom was trying to get up to help with dinner, and that I was just trying to settle her mind by checking on it. Then I returned to the living room with the affirmation that indeed Alice was making dinner and all was under control.

Less than ten minutes later, Mom made her third attempt. What now, I wondered?

“What are you trying to do, Mom?”

“I thought I’d set the table.”

Oh, great.  “It’s too early Mom. It’s only 2:20. It’s more than an hour and a half before dinner.”

Before I left, I let Cassie also know that Mom was trying to get up. Cassie promised to keep an eye on her.

Ready for Another Solution

At the end of the three-week trial, we all agreed the sedative was not working, and I sent an email to her doctor with the report, which was basically “no improvement.”

The doctor has other possible solutions.  I just hope we don’t have to go through too many before finding one that helps.  I miss being able to spend time with my mother awake.


Hide and Seek, The Dementia Game

Hide and Seek was a fun and exciting game when we were kids, but now not so much. Our current version goes like this—Mom hides objects (usually her wallet or her apartment key), and my sister who lives closest to Mom searches high and low for them. The rest of us receive emails like this:

“She has turned into the Easter Bunny who loves to hide her precious eggs—her wallet, jewelry box, money, keys.”

Another time—“So, this weekend I searched for keys, glasses, and wallet. Found all three, and $20 stuffed at back of her undie drawer. Got to laugh.”

After a while though, it became less amusing.

The Game

My sister soon caught on to Mom’s favorite hiding places just like when you were a kid, you knew that your younger sibling tended to always hide in the closet or behind the drapes in the living room. At various times, my sister found Mom’s wallet hidden under clothes in the dresser, shoved in the bookcase, or under her pillow. One day, she looked in all the usual places to no avail. Getting irritated and frustrated, she then branched out, searching all over Mom’s apartment, including in her walker and even in the refrigerator. Still no luck.

Frustrated and out of time, my sister got our mother up out of her armchair to head down to the dining room. Just to be thorough, she lifted the chair cushion. Yep. There it was. My mom had been sitting on it all along.

I think my sister was internally blowing her top. She confiscated the wallet and took it home with her. “I now have her wallet as she is getting better at hiding with each visit. So, if she says she is missing her ‘purse’ or says that someone took something, you will know it is her own doing or that I have it and you can reassure her.” I applauded my sister’s self-defense measures. Problem solved.

Level Two

The keys presented a different problem. Mom had an apartment key and a mailbox key. My sister confiscated the mail key early on, but Mom had to maintain possession of her apartment key. Frequently Mom thought she’d lost the keys, but had merely shoved the plastic bracelet they were on so far up her sleeve that she couldn’t find it. It wasn’t unusual to experience what my second sister did during a visit. “When I got her for lunch, she said she couldn’t find her keys and was looking all around for them. They were on her wrist!”  (For an example of how Mom losing her mail box key complicated life, click here to read “Immigrations and Dementia.”)

If the keys weren’t actually on Mom, there were some other obvious possibilities. Sometimes, in taking off her shirt the night before, the keys came off with it. A quick search in the hamper or amongst the clothes by her bedside usually turned up the missing key. And sometimes not. Then it was check the walker, check her dresser, check her bedside table, check her armchair. The key generally turned up. “She lost her key again this week. I found it in a drawer.”

However, as with her wallet, Mom seemed to get better at hiding the key. Over a year ago, we started receiving emails from her assisted living facility. “Your mother has lost her key. We searched her apartment on Monday to no avail and as of yesterday they are still missing. Please contact us regarding a new set.”

My sister dutifully went in and hoped to find them. Most of the time she did, but sometimes they were not to be found. “After 45 minutes searching today, I gave up.” My sister let us know that she could order a new set at a cost of $25.00 from the facility, “but given how frequently she loses them, I’d like to wait a week or two to see if it surfaces. I have ordered four sets so far. I’m thinking an implant might be a good idea. If she can just scan her forehead to open the door, then I think we are good!”

This went on and on, with all of us frustrated with the situation and the unnecessary mounting cost. And then the day came when Mom got to the point where she needed help with all her transfers due to her fall risk. The responsibility of the key fell to her aides. It’s an ill wind that blows no good. Another problem solved.

The Tissue Issue

So, with no wallet or keys to hide, Mom moved on to hiding tissue boxes. I know. Huh? You have to understand that tissue is very important to Mom as her nose is running daily even though she is not. My sister once found four boxes hidden under her armchair as if they were golden tickets to Willy Wonka’s chocolate factory. My sister sent out another venting email. We joked about gluing boxes to the walls of her apartment.

My brother put the problem in perspective, “I don’t see losing Kleenex as an issue since she usually has half a box stuffed up her sleeves.”

Good point, but Mom worries about her lost treasures.

Hide and Seek, Solitaire Version

As annoying and time consuming as Hide and Seek is, it is occasional and nothing compared to Mom’s internal version of the game. Instead of objects, she loses and hunts for her memories. Playing Hide and Seek with your memories is absolutely no fun at all, and increasingly she is unable to find them.