Wednesday, January 2, 2013

Can people with dementia fake their symptoms? Dementia -- Faking It?

One of the most common questions caregivers ask is regarding the behaviors of their loved ones. These are generally inquiries about their loved one's "pretense" of not understanding "clear" instructions or concerns that they are "faking" confusion or are not able to perform a task out of "spite."

Let me give you an example.
Recently I saw a man in his seventies -- let's call him John. I met with his family around the kitchen table and we discussed his diagnosis (Alzheimer's), his stage of the disease (late Stage Five), his weight loss (gradual but continual), and his prognosis (terminal). Surrounded on both sides by his wife, his two siblings and his children, John was alert and engaging and interested in what we were talking about, but only socially. He was sitting quietly because that was the polite thing to do. He laughed when we all did, he looked concerned when everyone at the able did, he looked to his wife to answer questions directed at him. He wasn't really able to comprehend the depth of the conversations around him.
When it was time to develop the care plan, his wife cut John a slice of pie and made him a snack table in another room. She poured him a glass of milk, turned on one of his favorite television shows and returned to escort John. As she motioned for him to get up from the kitchen table and follow her, this slightly stooped gentleman, who only an hour or so earlier had walked steadily to the table was suddenly frozen.
John gripped the table tightly and tried to rise from his chair, but he couldn't. With a look of surprise and confusion, he made several more attempts to stand, but couldn't figure out how to do so. Within a few seconds, his children realized their father couldn't stand and came to assist him. John was supported and lifted away from the table, up and out of his chair. Standing erect, he motioned he was ready to move now and with his son guiding him, John walked slowly to his chair and the waiting slice of pie.
Incredulously, I listened as his siblings, both in their 60s, complained.
"Did you see that?" his sister asked. "He does that all the time. Pretends he doesn't know how to walk. He's doing that because you're here. He wants us to feel sad for him."
Makes you stop huh? In spite of all we had just talked about, the damage in John's brain, the literal loss of brain tissue, how this tissue loss changed John's abilities, all of it, the course of the disease, the stages, the decline. And through it all, she shook her head. "Yes," she understood. "Yes," this was the disease causing John's declining memories, health, etc. "Yes," his brain lobes are damaged. "Yes," he's getting worse.
But when she saw the results of dementia, she still didn't get it.
John had just experienced a flash of apraxia, one of the four A's of dementia. That is, John's brain couldn't figure out how to coordinate purposeful muscle movement. His brain literally couldn't find a pathway to tell him how to stand. Specifically, his brain couldn't find the working links from his frontal, occipital and parietal lobes to help him hold onto the table, balance and push up with his legs while scooting the chair backwards and using his arms against the chairs arms, push his body to an erect stance -- all while maintaining balance -- all in a single fluid motion. But to a couple of family members, John was faking his inability to stand and move away from the table.
People like John, that is, people with dementia, aren't faking anything. The damage in their brains won't allow them too. To lie, deceive, pretend, or exaggerate the loss of abilities requires a three-pound, fully functioning brain. People with dementia don't have three-pound brains, their brains are shrinking. Given his stage of dementia, John had lost between one-half and two-thirds of a pound of tissue already. Like all people with dementia, he wasn't faking an inability to stand, he wasn't trying to get special attention. He was simply doing the best he could in that moment. It's the dementia, not the person.

The Do's and Don't's of Talking to Kids About Dementia

One of the most common questions I am asked is "How do we tell the grandchildren about Mom's dementia diagnosis?" It is estimated we currently have 3 million teens and pre-teens helping as direct family caregivers in our country alone. Talking to them about what dementia is and what it is doing to their loved one is a critical part of helping them to cope with the burden of care.

Explaing dementia to children is not easy, after all dementia is a terminal disease and obviously affecting someome they love.  Here are some of the "Do's and Don't's" related to the age of your grandchildren.


Do: Just try to keep the information on their level. Young children don't have the ability to process illness and disease. This means saying things like "Gran has a sick brain," or "Gran may not remember your name sometimes."
Don't: Try to avoid saying "Gran is sick" as children can draw inferences from that information. In other words, everybody, including children, gets sick. It's better that the children understand Gran's behaviors or changes are because of a "sick brain." It helps them begin to make the step to understanding she has a specific illness.
Do: You will probably need to repeat the information several times as younger children live in the "here and now."
Don't: Pretend to know everything. Don't be afraid to admit you may not know all the answers. Children need to feel secure and safe. As long as you can be calm, the kids will probably be okay. Remember, children, even preschoolers, can be quite direct with their questions and they expect answers. Don't make anything up, but try to be honest. Pre-schoolers don't need a lot of detail, they just need an answer.
Do: Remember it's okay to be sad and to tell this age group you are sad about Gran's sick brain. Chances are they are already aware people in the family are sad. Talking about it helps them adjust to these new feelings in the family.
Do: Be sure to tell them Gran's sick brain is not their fault. Children, both pre-schoolers and pre-teens, can take on a burden of guilt and feel like their behavior may have caused Gran's brain to be sick.
Do: Be sure to tell them that sometimes a sick brain can make Gran do things that seem silly or odd. She may forget their names or her manners or say something out of character. Or she may appear to be upset or lost at times. Remind them these things are because of her sick brain and not because of them.

School Age and Pre-Teens

This age group is quie capable of understanding complex feelings and events, but they will still need your guidance.
Do: Be prepared for discussions. Eight and nine year old children can process that dementia is a terminal disease and what that means. They can understand illness and death. They may ask detailed questions about the disease progression. And because they are more likely to have a literal thinking process, they may ask painfully frank questions. "Is Gran going to die?" "Does she hate me?" "Is she sick because I was bad?"
Do: Watch for signs they are suffering emotionally and physically. Stomach aches, headaches, withdrawn or depressed behavior, strange aches and pains, or bad dreams are not uncommon. Let the teacher know about Gran if schoolwork suffers or seek additional support for your child.
Don't: Pretending nothing is wrong when the children are around can have serious negative impacts on them. Dementia affects the family cycle and it's dynamics. Keeping information secret can lead children to believe they are somehow responsible for changes.


This can be a challenging group. A child that has been very close to Gran may withdraw or be easily hurt by changes in her behavior. At times, teenagers may appear uncaring or refuse to visit. The perception of appearing not to care may be related more to what is occurring with the teenager -- school, hormones, physical changes, etc. Or the teenager may be overwhelmed at the thought of losing Gran or seeing declines and changes in Gran's abilitites.
Teenagers can also be easily embarrassed. They may be afraid of experiencing or exhibiting emotion about Gran's dementia. They may be unable to talk about their feelings or fears.
Do: Offer to be available to talk about what is happening to Gran.
Don't: Trying to force teenagers to respond may only push them farther away.
Do: Allow teenagers time to adjust to the announcement of Gran's dementia.
Don't: Everyone gets frustrated. Some people experience this as anger. Don't tell your teenager to stop having his or her feelings. After all, a dementia diagnosis starts the process of grieving and remember, all of us, regardless of our age, grieve differently.

Seven top things to keep your brain active

As we learn more and more about brain function, we are certain staying active is a key feature of aging well. Research from the National Institute of Aging and the Nun Study ( and the Cambridge Study ( all point to the same thing -- use it or lose it! Staying brain active and brain healthy keeps us aging normally. And at a time when so many questions about dementia go unanswered, we've pretty much got this part down. Brain exercise helps your brain function as you age. Exercise isn't going to stop dementia from happening, but it appears to alter the course a bit for some, just check out the attached article from the University of Syndey.
So in light of that, I've got some cognitive exercises for you. These activities are not only available to you for free, but these are considered the top brain exercises! And if you can work several into each day, you are doing great!
1. The number one exercise is dancing. Dancing requires all four lobes of your brain to focus and coordinate movement between large muscle groups, rhythms, beats, sequences of steps and music. If you are dancing with a partner, well for ladies this can be even more of a challenge. Just remember what was said about Fred Astair. "Sure he was great, but don't forget Ginger Rogers did everything he was doing high heels!" The great thing about dancing is you don't need a partner or a ballroom. Just get moving to music!
2. Playing card games, board games and dominoes are wonderfulf activities for your brain. Poker, bridge, blackjack, etc. all require your brain to pay attention to colors, suits, numbers, make judgements, draw inferences about what hands others might be holding, and to observe carefully others behaviors and draw inferences from those behaviors. All four lobes are needed for this exersise as well. Turns out that friendly Friday night game has great benefits!
3. Playing a musical instrument lights up the entire the brain. Ideally, you are reading music and playing your instrument, but even if you are just learning the harmonica or dulcimer and reading the notes through a tab system, your brain is still happy!
4. Riddle me this Batman! Puzzles, number games, word games, crosswords, or picture puzzles excite and challenge your brain. All four lobes are required to make puzzles work. To complete these tasks, the brain has to draw inferences, add, subtract, jump ahead in cognition, imagine and use higher functioning, all good things!
5. Google, Google, Google. If you on the Internet, using Google is a free game for the brain. When you look up information and then that piece leads you to look up something else, and then that leads to something else, and so on and so on, your brain is having a ball! Your four lobes are cranking on this exercise! Not only are you learning, but your memory files are growing and than means more brain tissue and thicker and richer dendritic growth in the cellular structures!
6. Take a hike! Or just a walk around the block. If you are a caregiver, even a ten minute stroll to the end  of the block and back helps release anxiety and relieve tension. Being outside and moving ramps the brain up. Vision, memory, coordinarion, recall, imagination, touch, smell, picture recall, all of these and more are used during a brief stroll. The birds, the breeze, the crack in the sidewalk, the color of the leaves, a squirrel chattering, this multitude of stimulation combined with the physical movement is a great brain exercise!
7. Read a book! Remember in addition to your favorites, reading needs to stay challenging. New stories introduce us to new words, concepts, ideas, characters, and places and form new connections in the brain. The key is to keep your brain busy!

Why Doesn't Mom Recognize Herself?

It can be confusing to caregivers when their loved one no longer seems to be able to recognize his or her own face. That thing we would think could never be lost, even in the depths of dementia. Yet there is is, an inability to know the features that define each of us, eyes, nose, smile, hair, that tiny scar on the chin. The ability to know one's own self in the mirror. And it can seem so confusing to the caregiver as well as making certain tasks more difficult to complete.
Like needing your loved one to go into the bathroom and trying to reason with his or her refusal because some older person is already in there. Or trying to explain to your mom why that old lady , her own reflection, won't wave back at her from the window.
But if you understand what dementia is doing to the brain, the confusion suddenly makes sense.
Imagine the brain and its memories are like a filing cabinet, full of files. There are files with information about your mother and father, files containing your social skills, files that tell you how to sit up straight, hold your head erect, files for the people you know and love. There are literally files for all of our memories, whether those memories are how to walk or chew food or knit a sweater. The files exist for everything around us, everything in our world. And there are files for us at each age. How else would we recognize that photo from the sixth grade or our first dance?
Dementia, whether it is Alzheimer's or Vascular or Lewy Body, is destroying those files. Often, the files are being removed from the brain in a reverse order of how they were learned. For example, your loved one can't recall information from 2005, but can remember the family/holiday vacation from 1990. The files from 1990 are still intact, the newer files are corrupted and damaged by the dementia. Because of dementia, the brain is not only destroying files, but it is also unable to make new files, to take in new information.
So if my brain contains files only from when I was 30, I can no longer recognize myself at 70. My brain simply doesn't contain those files anymore, so when I see that 70 year old in the mirror, I believe that must be another person. It can't be me, after all I'm in my thirties.

The corruption and destruction of the files each of us hold in our brains, those files of memory/information that make each of us unique, drastically changes the experience of care for families amd professionals as well as the person with the disease. The loss of files can be painful for families to experience as their loved one forgets who they are. For some families this loss of information results in a general confusion about who you are, for others it is a total loss of any memory of you at all.
It is key to remember that during the dementia process, dead brain tissue is being removed from the brain. As individual cells are killed off, the body's systems remove those dead cells as part of waste. It is the normal system for how our bodies replace and repair cells throughout our lifetimes.
But in the process of dementia, these cells are not replaced and eventually the removal takes its toll. The brain, which weighed three pounds during adulthood, ends up weighing only one pound, because of this process. This drastic loss of tissue means the body runs less efficiently, and the memories held in the brain are damaged and destroyed and finally lost.
So mom doesn't recognize herself at her current age, means she also may not recognize you at yours.
But because each of us carries that familial link, that physical link that makes us resemble someone in our family, your mom may be convinced you are her sister or brother or mother or father. Is because those files still function. They are longer term memory, older files more deeply imbedded, therefore, still functioning as her current memory.

Sundowning Syndrome -- What Do I Do?

Sundowning Syndrome is frequently considered one of the most challenging behaviors facing caregivers and persons with dementia. And while some persons struggle with this behavior daily, others persons never exhibit any symptoms. Sundowning is a behavior, presented with or without aggitation, in which the person with dementia attempts to leave his or her current environment (home, community, etc.) or is exhibiting a higher or unusual state of agitation.  
This behavior may present at anytime after 2 p.m., but most often it occurs between 3 p.m. and 6 p.m. Most likely connected to a hardwired human feature of changing afternoon activites to prepare for evening activities, i.e. going home from work, preparing a meal, preparing for bedtime. Sundowning is frequently considered to one of the most challenging aspects of caregiving, for both the at home caregiver or the professional in a community.
There are a variety of activities designed to address Sundowning and each caregiver has to find the one that will hopefully work best for your loved one. And remember, if you find one that works at home, be sure to let the staff know should your loved one be moved to a dementia community.
1. For the majority of persons with dementia in Stages Three, Four, Five and Six, design activites that allow your loved one to use up energy during the day. But remember that these physical activities, such as dancing, walking, exercise, etc., need to take place in the morning (10 a.m.) and in the afternoon (around 2 p.m.). Starting the afternoon activity after 2 p.m. appears to help increase Sunndowning, rather than burnng up energy that would be used in Sundowning.
2. Other persons react better to earlier physical activities (10 a.m. and 1 p.m.) and then respond positively to an afternoon "nap." Remember the nap needs to take place in an area other than the bedroom, as waking up in the bedroom can further confuse your loved one into thinking it is morning time again.
(But because humans are unique, other persons react negatively to too much activity. Caregivers are tasked with finding which schedule works best for their loved ones)
3. During the day, keep the home or community as well lighted as possible. High wattage bulbs, all lights on, blinds pulled, etc. to allow maximum daylight helps your loved one stay better acclimated to day activities.
4. Should Sundowning begin, look for activities to engage your loved one. This might mean a walk, music, favorite movie, helping with a task, or rubbing lotion on the hands, paying special attention to the palm area. (This is often a soothing activity.)
5. If your loved one becomes physically aggressive, back away from him or her and try to reduce noise and movement in the environment. If your loved one is agitated by your presence, try stepping out of his or her sight for several minutes. (Make certain your loved one is safe however.) You might even try to change your shirt or hairstyle before your reapproach, at times this change in appearance will result in a change in behavior.
6. In the event your loved one is able to leave the home, keep a recent photo and medication list handy and do not hesitate to contact the authorities. Remember a dementia alert bracelet can be ordered from your local pharmacy and can be worn on the wrist or ankle.