Posts Tagged ‘Alzheimer’s symptoms’

Realistic Expectations

Friday, March 4th, 2011

First, there are the excuses and rationalizations, the reasoning away of the increasingly frequent memory issues.  “He’s had surgery and is still confused from the anesthesia.”  “She’s just getting older.”  “I’m not surprised she got lost.  With all the road construction, the route to our house doesn’t look the same anymore.”  Usually, there is some type of event that brings the family to reality.  With my father-in-law, it was being fired from his “retirement job” of valet parking cars at the local hospital.  Unknown to us, he would lose cars, lose keys, stay gone for over an hour to park a car, etc.  Then, his doctor confirmed the diagnosis we were by that time expecting:  Alzheimer’s disease.

At this point in the process, every family wants to know what to expect. However, there are difficulties predicting the disease course in an individual, because it is different in every person.  I thought I was familiar with Alzheimer’s disease, having had two beloved grandparents who died of it and who had similar disease courses.  My father-in-law’s course of disease was very different, much quicker with many more behavioral problems.  Forming realistic expectations of what your loved one with Alzheimer’s disease will go through (how long he will live, what difficulties he will have, etc.) is at best a moving target.  There are some common themes, though, that you can reasonably expect over the rest of your loved one’s life.  In previous blogs, I’ve addressed most of these issues individually and how to deal with them.

  1. How long will it last?  Once a person has Alzheimer’s disease, he will live 7 – 10 more years on average.  You can reasonably expect to add to or subtract from that number based on your loved one’s general health and age when he gets the disease.
  2. The Search for Home:  People with dementia are constantly searching for that which is familiar, and the most familiar place is home.  Usually, this is the home in which she grew up, and not the home in which she lives now.  Because of this, someone with dementia may go to the mailbox and wander away on the way back to the house, because it doesn’t look like “home” to her.
  3. False accusations:  People with Alzheimer’s disease often falsely accuse people of things, often bizarre things.  The most common of these accusations is stealing.  These accusations are commonly directed at the caregiver, but often at others, too.  These “others” can be either real or imaginary people.
  4. Hallucinations:  These can take many forms.  Your loved one may see herself in the mirror and believe it is someone else.  She may believe people come to her house for evil purposes, that a photograph is a real person, or that what is on the television is happening in her living room.  These hallucinations also can have no basis in reality (i.e. insisting that a non-existent cat who recently birthed kittens is under her bed, that she received phone calls from strangers, etc.)
  5. Increasing forgetfulness:  At first, the forgetfulness mainly takes the form of forgetting to do common tasks (forgetting to take medication, brush teeth, change clothes, etc.) and forgetting things that happened (forgetting conversations, events, what she has for breakfast, etc.)  As time goes on, your loved one will forget how to do normal daily living tasks (dressing, bathing, eating, brushing teeth, etc.), and finally, will need these to be done for her.
  6. Wandering:  If your loved one can walk, you can expect wandering.  Every person with dementia who can walk should have a GPS bracelet.  They prevent horrific tragedies.  (
  7. Sleep disturbances:  People with Alzheimer’s disease often have difficulty sleeping the entire night.  When combined with the tendency to wander, this can be especially difficult to manage.
  8. Fixation on a few phrases or stories:  As he loses more of his memories of the past, a person with Alzheimer’s disease tends to repeat a few stories (and later phrases) over and over again.
  9. Incontinence
  10. Inability to recognize family members and other loved ones:  The person may call his wife’s name, but not recognize her.

Less common things which also occur:

  1. Combativeness, verbal or physical abusiveness in people who have never had this issue before
  2. Loss of Speech relatively early in the disease process
  3. Loss of ability to read, write and / or spell relatively early in the disease process
  4. Improper and embarrassing public behavior (yelling, sexual behavior, talking to strangers as if they are friends, disrobing, etc.)
  5. Personality changes

End Stages:  Currently, Alzheimer’s disease is a terminal illness.  Many of those who have it die of other causes and never reach the end stage of the disease.  For those who do, here is what you can expect:

  1. Loss of the ability to walk and later, to sit up
  2. Loss of the ability to eat unassisted
  3. Loss of the ability to communicate
  4. Withdrawal from surroundings (Although with techniques like music therapy, the person can often interact with others.)

I wish there was a moral and ethical way I could sugar-coat the realities of Alzheimer’s disease.  There is not.  However, my hope is that families who are prepared for the realities of the disease will be better able to deal with them.


Thursday, December 2nd, 2010

Most people can do anything required of them — if only they can get a decent night’s sleep.  If your loved one with dementia is up several times during the night, this can be the most difficult part of being a caregiver.  There is no magic cure for this situation, but there are several things you can try (often in conjunction with each other) that may improve your life.

  1. Make certain the dementia patient has NO CAFFEINE whatsoever after mid-afternoon.  If this doesn’t have an effect, move the “no caffeine” rule back to lunch, then to breakfast if lunch doesn’t work, or perhaps to no caffeine at all.  Remember many teas have more caffeine than coffee.  Many soft drinks also have caffeine.  If your loved one is accustomed to drinking coffee, tea or other caffeinated beverages all day, substitute the decaf version.
  2. Don’t feed the patient high sugar foods (desserts, candy, non-diet soft drinks, etc.) in the evening.  Sugar can agitate people.  Remember that bread and other carbohydrates turn into sugars in the bloodstream, so limit these, also.
  3. Try not to allow the patient to sleep during the day.  Too much sleep during the day means less sleep at night.
  4. Keep the patient physically and mentally active.  Added activity will tire the patient and prepare her for a good night’s sleep, plus it will keep her from sleeping during the day.
  5. Given before bedtime, warm milk with a little real vanilla extract added may make the patient drowsy.  There are many decaffeinated teas available that are recommended for bedtime use.
  6. When the patient is asleep, does he move frequently?  If so, he may have Restless Leg Syndrome.  If he snores, he may have sleep apnea.  Both of these can keep someone from going into a deep sleep and cause them awaken them numerous times during the night.  If this is the case with your loved one, there are lifestyle changes and treatments that may help.  Talk to you doctor about a sleep study.
  7. If these suggestions don’t work, or don’t work well enough, talk to you doctor about an over-the-counter or prescription sleep medication.

As stated in previous blogs, caregiving is a marathon, not a sprint.  You must take care of yourself (including getting enough sleep) if you want to finish the race.

Do you have things that have helped your loved one get a good night’s sleep?  Let us hear from you!

Using Written Language when Oral Language Fails

Monday, November 22nd, 2010

Here is a link to an interesting article from the November 21, 2010 issue of Parade Magazine citing the work of a speech pathologist who has had success in using large print written language along with spoken language to communicate with Alzheimer’s patients who have lost the ability to understand oral language to a greater or lesser extent.

This is a great idea and may work well for many patients.  However, remember that the ability to understand written or oral language has to do with what parts of the brain are primarily affected by the disease process.  There are patients who can read but not write, write but not read, or neither read nor write but can spell.  My father-in-law could neither read nor write by the middle stages of the disease, but we discovered he could still spell things aloud when our then second grade daughter was practicing her spelling words.  When we would ask her to spell things, to our surprise he would spell them aloud.  This type of phenomenon is even more common among stroke patients.


Thursday, November 11th, 2010

Dementia patients can get violent, especially if the disease process has affected the main part of the brain that houses judgment (frontal lobe).  People who have been kind, caring human beings all their lives can turn combative and abusive.  One of the main reasons we started Dementia Dymamics was because my father-in-law, a gentle, easy-going man all his life, became violent as Alzheimer’s disease took more and more of his cognitive abilities.  Because he retained great strength and physical ability into the late stages of the disease, there was a point at which we were very afraid he would accidentally kill one of his caregivers in the facility in which he lived.

What we noticed was that some people could deal with him without incident and some people couldn’t.  What was the difference?  Here is what we have learned through our own experience and through the experiences and research of others.

  1. Most importantly, if something you are doing that is agitating or upsetting the patient, stop it immediately (unless it’s an emergency situation).  If you stop, the patient usually will calm down to the point where you can deal with him.  If he doesn’t and / or you are in physical danger, remove yourself from the situation and call the police.  Most dementia patients never get to this point, but a small percentage do.
  2. Know your loved one’s physical signs of agitation:  increased breathing, franticness, pacing, wringing of hands, etc.  When you see your loved one exhibiting these signs, stop whatever your are doing or think of another approach.
  3. Don’t argue with the patient.  No matter what she says, find something to agree with or at least manage an “Oh really?”  This is true with all dementia patients, but especially with those with a tendency toward anger and violence.  Arguing will only agitate her.  Go along with what she says if you can.  Redirect her.  Smile at her.  LOVE her.  Gently pat her hand or hug her if this would not be dangerous.
  4. Talk with the patient’s physician about her tendency toward physical aggression or violence.  Sometimes, medication is necessary.  The doctor may order testing to determine whether the patient has another underlying medical condition aggravating the anger management issues.
  5. Feed the patient more frequent, small meals (or healthy snacks between meals) to help his blood sugar stay at a consistent level, giving more protein and less carbohydrates / sweets.  Protein stays in bloodstream longer, keeping blood sugar at more consistent levels.  Blood sugar greatly affects mood and behavior in the elderly.  This is doubly true if your loved one has diabetes or hypoglycemia (low blood sugar).
  6. If you must do something that you know will upset the patient (bathing, doctor’s appt, etc.), choose the best time of day for the patient.  Play the patient’s favorite music, talk to the patient about things you know they enjoyed in years past (“Remember the time when we were first married and we went….”)
  7. Be very careful about the patient’s alcohol consumption.  Not only can this interfere with coordination and some medications, but alcohol is a depressant and can greatly affect mood.
  8. In the worst case, a patient may have such a tendency toward violence that she has to be committed through the court system.  This is last resort, but can be the best solution in a horrific situation.  We had to follow this path with my father-in-law, committing him to a geriatric dementia psychiatric facility.  While it was very difficult to stand up and testify that this wonderful man was a danger to himself and others, he was finally in a place where they could regulate his behavior and medication.  Talk to an elder law attorney if you feel your loved one may have anger management issues to this degree.

Hallucinations and Fears

Tuesday, November 9th, 2010


Dementia patients’ perceptions of the world around us often bear little or no resemblance to reality.

Reflections: A woman looks at her own reflection in the mirror and sees a long-dead relative, a stranger, the hussy she believes her husband is having an affair with, a friend with whom to have a conversation — any number of comforting or frightening images.  As time goes on, most dementia sufferers lose their ability to see themselves in the mirror, because they remember themselves as much younger people.  Windows or any type of reflective glass can cause the same problem.  If the patient begins seeing frightening images in reflections, take down or cover the mirrors.  This is especially important in the bathroom, where a patient may become violent if he sees a stranger (i.e. his reflection) in the mirror while a caregiver is getting him undressed to bathe.

Television / Movies: What happens on the television or on a movie screen is often very real to a dementia patient.  Dr. Potts’ grandmother believed that Dan Rather came personally to her house every afternoon to tell her the day’s news.  Every afternoon before Dan arrived, she would put on her make-up, fix her hair, and make certain she was dressed well.  This is a humorous and harmless hallucination.  However, when the patient believes the war is occurring in his living room, or the criminal on a police show is in her house, the hallucinations can turn frightening or violent.  The key is to monitor what the patient is watching and to know your loved one’s triggers.  If you see signs of agitation (increased breathing, repetitive motion, general upset, etc.), turn off the TV / movie.  Instead of watching the news or other programs, play recordings of familiar comedy shows (The Carol Burnett Show, Sanford and Son, All in the Family, etc.), whatever the patient enjoyed years ago.  Other helpful DVDs would be those of familiar music groups or of family gatherings.  If the patient believes the family is actually in the room visiting, so much the better!   Music and videos are often used by caregivers to calm their loved one during times which might be upsetting to them.

People’s Identities: My father-in-law would look at a picture of himself and believe it to be his son.  Spouses have been known to run their husband or wife out of the bed, because they would not commit adultery with the stranger getting into bed with them — who was in actuality their spouse.  My grandfather would have an entire conversation about his son, Wendell, not realizing that he was talking to Wendell the entire time.

The Past: We all know dementia patients may not remember the past.  Additionally, they may remember the past as something completely false. Mrs. Smith tells her daughter about Mr. Smith’s repeated physical abuse, beatings, injuries — all things that never occurred.  These type accusations — those that anger and hurt us at the very core of our being — are the most difficult to ignore. We feel we must argue, correct, reorient.  The truth is that this reorientation will not work and very likely will only succeed in upsetting the patient.  It may be that the caregiver needs a “time out” at this point.  It is ok (and probably the best thing you could do) to leave the room, to give yourself time to cool off, tell yourself yet again that the patient is not responsible for her actions.  Redirect the patient if at all possible.  If you must say something in defense, try, “You know how much I love you,” or something similar.

In General: Keep in mind always that the patient’s perceptions, reasoning, understanding — everything is skewed by this disease.  These things that seem irrational to us are very real to them.  Trying to convince them otherwise, rather than soothing their fears, going along with harmless hallucinations, or distracting / redirecting them, will only cause upset, confusion or agitation in your loved one and could cause a violent outburst.

Share tips on techniques that have worked for you!

Eating Issues

Tuesday, October 26th, 2010

It seems that dementia patients always have eating issues, whether it’s eating too much or too little.  There usually isn’t a happy medium.  We’re going to try to address both sides of the issue in this blog and we welcome other suggestions!

TOO LITTLE:  We can all picture the fragile little old ladies weighing 95 lbs. soaking wet.  They don’t eat enough to keep a bird alive.  This is a very real problem for some dementia patients and their caregivers, but there are things you can do to improve the situation:

Appetite is controlled by the brain, as is the lack of appetite.  If the part of the brain that tells a patient she is hungry is affected, she may not want to eat.  Depression also affects appetite, usually creating a lack of appetite, but sometimes creating excessive appetite.  If your loved one doesn’t want to eat, he may be depressed.  Most anti-depressants also increase appetite, so these medications are often prescribed for people who lack appetite, even if they aren’t depressed.  Talk to your loved one’s physician.

If your loved one isn’t eating well, you need to make certain what they do eat is packed with nutrition.  Keep healthy snacks around the house, like cut fruit and vegetables.  Offer nutritious food often.  Consider serving 5 or 6 small meals a day as recommended in the diabetic diet.  In this as with any change, consult your loved one’s physician.

A little known problem with dementia patients is their lack of ability to PERCEIVE things (not necessarily “see things”) the way the rest of us do.  For instance, if you put mashed potatoes, coleslaw and grilled chicken on a white plate, they may not comprehend that there is anything but the plate there.  Place those same mashed potatoes, coleslaw and chicken on a medium tone plate and suddenly, the food “appears.”  (The same holds true for everything in the dementia world — color contrasts are visible, similar colors placed together (i.e. khaki pants on creme colored sheets) may not be visible.)  Additionally, patterned plates are confusing to dementia patients.  A nice medium tone solid in a contrasting tone to the table or tablecloth is best.

Especially if the change in diet is sudden, check the patient’s mouth.  My grandmother had an awful case of thrush, which explained why she wouldn’t eat.  Thrush is a painful yeast infection of the mouth made more likely by taking antibiotics.  Look for a white film inside the mouth.  For more information, go to  Because this is not very common in adults, it’s often missed by healthcare providers.

If your loved one is in a facility, make certain they are not placed at the dinner table with someone who is stealing their food.  Over-eaters will take food off the plates of people who are sitting around them.  My father-in-law often stole food off the plates of others, so his dinner table placement was important.

TOO MUCH:  Over-eating is often a problem with dementia patients.  The weight gain that usually goes along with it can cause back and joint pain, and increase the patient’s risk of things like stroke, heart attack and diabetes.  Preventing over-eating is easier said than done, but here are some things we’ve found that help:

Don’t serve food “family style” around the table.  Patients have been known to sit down before anyone else gets to the table and eat everything out of several serving bowls before anyone notices.  Also, it’s easier to control portions if you serve the plate of the patient instead of allowing her to serve herself.

Don’t keep junk food / candy where the patient can find it.  If the patient must have snacks, serve fruit, raw vegetables, and other healthy foods that are high in fiber.

If the patient is in a facility and eats at a table with others, make certain he is placed at a table with patients who are cognitively intact enough to know and verbalize if their food is being stolen.

Eating too much, yet undernourished:  My grandfather ate amazing amounts of food, yet remained undernourished because his body was losing it ability to extract the nutrients and calories out of his food.  If this is the case, check with the patient’s physician or a registered dietician about adding nutritional supplements like Boost or Ensure.

Whether your loved one over-eats or under-eats, involve her physician (and possibly a registered dietician).  Above all, don’t obsess over the situation.  It may very well be a temporary problem as the brain continues to change with the disease process.  In this as in all things along this journey, as the caregiver, you should do the best you can under the difficult circumstances in which you are placed.


Inappropriate Public Behavior

Tuesday, October 19th, 2010

Of all the difficulties faced by dementia caregivers, inappropriate public behavior is often the most embarrassing and isolating.  Public toileting, sexual behavior, anger management issues (covered separately), “hitting” on members of the opposite sex, saying inappropriate things — the list goes on and on.  The potential for embarrassment keeps the caregiver from going out socially and keeps friends and family from issuing invitations to the caregiver, who can’t leave his loved one with dementia by herself.    Where does this leave the caregiver?  Isolated.

This stage of the disease may last several months or several years, or your loved one may never exhibit these problems.  If he does, there are things you can do to cope.

First of all, stay calm.  Getting mad, blaming the patient, yelling, or similar reactions will only make things worse.  Your mood influences that of your loved one.  Reacting rashly will confuse the patient, making it more difficult to stop the behavior.

Try to distract the patient from the behavior.  It may take several tries.  Try to find a “hot button” issue that usually distracts the patient.  For my father-in-law, the issue was his hair.  I could distract him from doing anything if I would say, “Papa!  Your hair is messed up!  You need to go to the restroom and comb it!”  For Coach Frank Broyles’ wife, the issue was milkshakes.  If Mrs. Broyles was agitated, a family member would say, “Let’s go get a milkshake!” and everything improved immediately.  Find your loved one’s “hot button” issue and use it liberally.

For those who try to undress in public or exhibit public sexual behavior, consider a “busy apron” which has buttons, zippers, snaps, etc. all over the front, but is just about impossible for them to remove.  It covers their real clothing, keeping them from removing it.    Several companies offer these over the internet.

One woman had business cards printed that said, “My husband has Alzheimer’s disease.  Please excuse his behavior.”  Most people, when they know why the person is acting strangely, will be quite understanding.

Consider dementia daycare.  My father-in-law went to a wonderful dementia daycare center called Caring Days.  There, he became a watercolor artist, having never painted prior to his diagnosis.  When exposed to art therapy, music therapy, and an mentally stimulating activities, my father-in-law’s behavior improved.  Also, remember that dementia caregiving is a marathon, not a sprint.  If you don’t take care of yourself, and get RESPITE for yourself, you won’t make it to the finish.

If these strategies don’t work or are insufficient, talk to your loved one’s physician who may decide medication(s) is necessary.

Finally, most people don’t notice things as much as you think.  As a dementia caregiver, you have to make allowances for the fact that your loved one will behave inappropriately at times.  Even if it’s something as minor as speaking kindly to a stranger as if she is a friend, it will be uncomfortable for the caregiver.  To avoid isolation, you must let a lot of this roll off your back.  Most people don’t care about the behavior of others near as much as we believe they do.  Try not to let this bother you.

Do you have ideas about preventing inappropriate behavior?  Please share!


Friday, October 15th, 2010

This habit of so many dementia patients have of wandering away is one of the most potentially dangerous parts of the disease and one of the most terrifying for the caregiver.  There are always stories in the news about dementia patients wandering away and never coming back.

Before my grandfather’s descent into Alzheimer’s disease, he and my grandmother owned the Western Auto Store in their small town of about 5,000 people in NE Tennessee.  Everyone in the area knew them, because they had been customers in the store.  He was a wanderer.  They lived at at the edge of the mountains.  There were rivers, creeks and lakes nearby.  The potential dangers for him were everywhere, but we were some of the fortunate ones.  He would wander away relatively often and the neighbors, the police, the townspeople, whoever, would bring him home or call my grandmother to come get him.  Many are not so fortunate.

Lots of caregivers don’t take proper precautions for wandering.  If the patient has never wandered before, the caregiver believes the patient will not wander.  This could be a deadly mistake.  Perhaps the patient goes to the mailbox and, coming back to the house, their house doesn’t look familiar.  It’s not the house they grew up in, so to them, it’s not their house.  Perhaps they go to the store with their caregiver and wander away while the caregiver’s back is turned.  Perhaps the caregiver takes a shower while she believes the patient is asleep, and he wanders away.  Whatever the case, if a dementia patient can walk, they are at risk of wandering.

What can you do?  There is a wonderful program called Project Lifesaver International which provides GPS bracelets not just to dementia patients, but to anyone at risk of wandering — those with autism, down’s syndrome, and other types of cognitive impairment.  To date, well over 2,000 successful rescues have been performed and they have a 100% success rate in finding people wearing their GPS bracelets.  Go to their website ( for more information.  People always are concerned that the dementia patient will take bracelet off, but in our community out of the hundreds we have distributed, only one person has been able to successfully remove it.  There are other organizations / companies that supply devices like these, also.

Ways to prevent wandering before it happens:

  1. Childproofing – use door knob covers and keyed deadbolt locks (keeping the key around your neck for fire safety).
  2. Paint doorways and doorknobs leading outside the same colors as the walls to camouflage them.  Continue wallpaper borders across the doors.
  3. Place large, red “STOP” signs over doors you don’t wish the patient to use.
  4. Place large, black floor mats in front of doorways you don’t wish the patient to use.  They will think it’s a hole.
  5. Avoid taking the patient places where you will be distracted — grocery shopping, Wal-Mart, etc. — thereby increasing the likelihood the patient could wander away.
  6. Take the car keys away.  (We’ll cover this subject in another blog.)

Do you have other ideas about preventing a dementia patient from wandering?  Please share them!

“I Want to Go Home.”

Thursday, October 7th, 2010






“They stealing from me!”

Tuesday, October 5th, 2010

One of the most common issues caregivers face is the dementia patient’s repeated accusations that someone (perhaps the caregiver) is stealing from them.   The items stolen could be money or anything else, valuable or invaluable.  How do you deal with these accusations?

First of all, realize that the dementia patient’s belief is very real to them.  You cannot convince them otherwise.

Second, realize that the inability to find things goes hand in glove with dementia.  The patient forgets where she put something, therefore, someone must have stolen it.  Isn’t it always easier to blame someone else than to blame yourself?

Third, if your loved one is in a facility, someone may very well have taken whatever your loved one is looking for, given the patient population in a dementia facility.  All of them have memory problems and have trouble remembering what is theirs and what belongs to someone else.  Label everything in permanent marker and usually, it will come back to you.

Fourth, when your loved one begins losing things, replace those things that would really matter if they were lost with similar items of lesser value.  Replace a diamond engagement ring with a similar CZ, putting the real one in a safe place.

But how should you deal with accusations of theft?  Again, the belief is real to the patient and you will only upset them by claiming it’s not.  Any action on your part must start from that understanding.  “Let me help you look for it.  Maybe they dropped it somewhere around here,” is a good response.  Begin by looking for the item, but help the patient get distracted along the way.  “Find” something else:  an old photo album, a favorite CD, a piece of artwork made by a grandchild — anything that could take the patient’s mind off the “stolen” item.

Say something that will calm the patient’s fears, just as you promise a frightened child that nothing can harm him in a world full of danger. This strategy gives caregivers the most trouble, because it involves what could easily be considered lying. “Daddy, your sport coat hasn’t been stolen.  I took it to have the seam repaired,”  or “No Mom, no one stole your banana.  I was hungry and ate it.  I’ll get you another one.  Remember when we made banana pudding….”  Think about it this way:  When you are having a tea party with a little girl, using pretend cups, pretend saucers and pretend tea, are you lying to her?  No, you are entering her world.  The patient’s world is full of fears.  Everything is losing its familiarity.     Playing along with what the patient is saying and calming those fears, even if it technically means lying, is not a bad thing.