Slide One - Disclaimer: There are no pharmaceutical sponsors for this talk.  The information I will share is my opinion.  It is based on my experience, and my readings of journals and articles and books, some of which I will recommend to you.

Slide Two – Dementia is a scary word and it can sound like a horror movie coming to your home or it can even sound like a death sentence, but I hope you’ll wait because there is hope.  We’re going to take a closer look at how to find hope and understanding.  But first…

Slide Three – I want to tell you a true story about my postman, Mr. Bob Post.  Mr. Post was a kind and gentle man, loved by everyone.  Picture the postman in Dagwood. 

When Mr. Post was about to turn 65, he suicided with a gun shot wound to the head, leaving no note.  

Slide Four – Why am I a psychiatrist? 

Because if Mr. Post had seen a psychiatrist, or a geriatrician, or a neurologist, or elder law attorney, he likely would not have suicided or needed to suicide.  He should have been treated with the dignity his exemplary life had earned. 

Slide Five - At the time of Mr. Post’s suicide, I was merely fifteen years old.  Naturally, I was curious.  My mother, may God rest her soul, held a steady position at the neighborhood gossip fence.  Rumor had it, she confided in me, that Mr. Post had been accused of inappropriately touching a little girl on his mail route and would likely be facing charges. 

This was in the 1940’s.  The meals I had eaten for approximately fifteen years, Mr. Post had eaten for approximately 65 years.  A great deal of fatback and lard biscuits.  We learned later that this caused hardening of the arteries, now known as atherosclerotic plaques of the arteries, causing what we now know to be vascular dementia.  Something different from the Alzheimer dementia, but very close in its symptomatology. 

At fifteen years of age, 65 looked old, very old.  To me, that meant senile dementia, touched in the head, and I knew that Mr. Post got a bum deal.  A broken brain propelled a totally out of character behavior, yet it was completely unrecognized by his family, the community, and my family.

Was I born to be a psychiatrist?

Slide Six -  We are born with eyes and ears to see, hear and observe and a brain to understand.  Not with a mathematics or psychiatry brain.

You must use all of your faculties to learn as much as you can, to understand the dementias and the rigors and intricacies of caregiving.  The sooner you start, as you’re doing now, and the more you invest in learning, the more capable and successful your caregiving will be.  So what you don’t learn in this series, please get books, read, and learn.  I’ll name some for you now:

A Pocket Guide for the Alzheimer’s Caregiver by David C. Potts, M.D., and Ellen Woodward Potts 

The 36-Hour Day by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., MPH

Embracing Dementia by Ellen Marie Edmonds

Another story. In 1965, I was in the general practice of family medicine in North Augusta, SC.  My father was in middle Georgia and he turned 65, having enjoyed fatback and lard biscuits and butterbeans all those years.  Additionally, he was diabetic and hypertensive.  Those are risk factors for dementia.  He had become a respected minister by that time.  One day he stopped to get his shoes shined.  The shoe shiner put the wrong polish on my dad’s shoes and in an instant my father punched him hard to the head.  As soon as I heard it, I knew the diagnosis - vascular dementia with behavioral changes.  That was the official beginning of his dementia trip, which lasted seven years before a large CVA (cerebral vascular accident) or stroke took him on to the next world. 

Slide Seven – A dementia principle, as a general rule, is the same as a business principle.  The last one hired is the first one fired.  The last thing we learn is the first thing we forget.  Let’s take a closer look at that. 

The infant very quickly realizes when it is uncomfortable, when it’s hungry, when it’s thirsty, when it’s hurting.  The infant signals those discomforts.  It wants to be warm, or fed, or have milk, or be held.  The infant begins to realize it is dependent on someone so that it calls for that person.  Later the infant wants and demands independence.  He smiles and beguiles.  He learns social skills to get his way and then ever increasingly learns complex judgment. 

Dementia, basically of any type, starts at the outer edge of judgment and progressively marches destructively through our mind, ultimately back to the infant stage of being totally dependent to just wanting to be comfortable.  The last things to go are touch and sound, both of which are initiated while in the womb. 

Sometimes dementia goes very quickly, even in a few short years.  Other may go from 5 to 12 years or even longer.  The average is around seven years.  We have better medicine now than we did in the past and it is getting better all the time, even getting close to potentially curing Alzheimer.

Slide Eight - There are ten recognized early warning signs of Alzheimer dementia.  I’ll read them:

1)     Short-term memory loss that disrupts daily life

2)     Difficulties in planning or solving problems

3)     Difficulty completing familiar tasks

4)     Confusion with time or place

5)     Trouble understanding what one sees, I would add, and hears

6)     New problems with words in speaking or writing

7)     Misplacing things and losing the ability to retrace steps

8)     Decreased or poor judgment

9)     Withdrawal from work or social activities
10) Changes in mood and personality

I will not elaborate on these lists, but if there are questions about any part of them, you may ask me later.

Slide Nine – The Four A’s of Alzheimer Disease.  May I suggest that you think of Alzheimer as a stutterer beginning with four A’s – A-a-a-alzheimer.

1)     Amnesia – short-term memory loss

2)     Aphasia – language disturbance

3)     Apraxia – inability to do learned tasks

4)     Agnosia – inability to recognize familiar people or objects

Slide Ten – The L’s of Caregiving

1)     Live in their world

2)     Love them as they are

3)     Learn to value remaining talents and gifts

4)     Let them maintain structure independence

5)     Listen, listen, listen

6)     Laugh with them

7)     Line up respite opportunities for them and you

8)     Linger over pleasant memories

9)     Look past the scribbling to the art

Slide Eleven – A Few Quick Tips

Don’t Argue.  Have you ever tried, in vain, to make your malfunctioning computer work for you?  If so, you wound up mad at the computer and yourself.

Instead, change the subject.  With dementia, the attention span is progressively shorter.  Generally, a quick change of the subject results in them forgetting what they were talking about.  They forget where they were.

Offer them understanding and comfort.

Don’t agree to something that is outrageous.  Example:  Question – “When is Pop coming home?”  Pop has been deceased for months or maybe even years.  Don’t say “in a little while” or “tomorrow.”  But also don’t say, “Can’t you get it into your head that he’s dead?”  Say something comforting, “I guess it will be a surprise.  Why don’t we have some tea or go for a walk?”  Or whatever they like to do.  Always be comforting.

Offer favorite foods, juices, desserts.  So what if it’s not health food?  Who really is going to punish them by not letting them have something they really want at this stage in life?

Notice things about them.  Are they having trouble swallowing?  Are they choking?  Can they chew their food?  Do they need a mechanically softened or pureed food to eat?  Are they incontinent with urine or bowels?  Are they shirking their hygiene?  Do they have a body odor?  Do they have a urinary tract infection or pain or fever?  Are they having adequate bowel movements?  Are they regular?  Do they appear to be in pain?

Watch for senior scams.  These are getting to be a bigger problem nowadays.  One in particular is the lottery scam.  They are made to feel that they won something.  I have now seen several early dementia patients who have been scammed out of more than $100,000 before their families realized what was happening.  They scam them by mail, by the internet, by phone, and by door to door, even in shopping lots, malls, stores.  They are vicious smooth talkers.

A favorite mother-in-law said, “I don’t. Understand.  He was such a nice man.”  Then when the family went home, she called the scammer to ask if he really was a scammer.  Of course, he assured her he was not and set up an appointment for the very next morning. 

Slide Twelve – Expectations. 

To be hurt: “All I did for you and you’re throwing me away, you promised not to do this.”

To cause hurt:  You lose your temper – “You know that’s not right; don’t be stupid!”

The unexpected:  A minister using a curse word or being combative.  A loyal and faithful spouse or parent becoming seductive indiscriminately, even sometimes to family.  Wandering away, getting lost.

Paranoia: “You want to put me away.  You want me to die.  You just want my money.  You don’t care about me.  People are stealing things from me.”

Not being recognized:  This can be very hurtful. 

Unexpected tender moments:  Can be very rewarding.

To agonize over decisions:  To place your loved one in a facility or not to choose life support any longer.

A maze of legal issues:  Involve elder law early.  They are worth the investment.

To be exhausted: Read 36-Hour Day.  Think about how much time it’s going to take you to do all that needs to be done.

Siblings and or children to be too busy or too financially unable to give substantive support.  Be grateful for any help you receive.

Slide Thirteen – Listen to the Experts.

Remember no one knows it all.  Talk to as many as you can.  Listen and learn.  You be in charge, but be guided by reasonable knowledge and expertise from caring professionals.  Doctors, social workers, attorneys, especially elder law attorneys, ministers, and don’t forget, hospice.  They can be invaluable.

Slide Fourteen – Treatment Goals

Keep your treatment goals and expectations reasonable.  Outcomes can be anywhere from better than expected to an unexpected quick demise.  This is for a myriad of reasons.  The experts can help you understand day-to-day ups and downs.

Doctors are equipped with good, but risky medications that may slow the dementia process and help control the behavior and unwanted impulsive actions and may improve the quality of life.  The side effects are potentially dangerous.

Currently, there is no cure or even prevention, but we are learning more and getting better at what we can do.

There are no miracles.  Occasionally, it seems like a miracle.

Slide Fifteen – NPH (Normal Pressure Hydrocephalus) Treated

In the seventies, the hospital where I worked had residents.  A first year medical resident became sluggish, could barely function, was quite demented, and he was sent to me as having developed schizophrenia.  My examination of him indicated he had dementia, not schizophrenia.  There was no prior history of schizophrenia and he had been a bright student.  My diagnosis was normal pressure hydrocephalus.  We had no MRIs at that time, but by placing air in his spinal cord, we were able to see that his brain was actually becoming compressed because of the fluid accumulation inside his brain.  A tube was placed to relieve the pressure and he recovered and became normal.  I’m not sure how normal because he quit medicine and became an attorney. 

Slide Sixteen – Preventive Measures

1)     You need good genes.

2)     A balanced diet. Fish, fruit, grains, olive oils, the Mediterranean-type diet.

3)     Exercise both body and brain.

4)     Fish oil. Omega-3s.  Not too much Vitamin E.

5)     Consider ibuprofen.  People who take this for their arthritis seem to have a protected factor from Alzheimer.  However, too much ibuprofen will destroy the kidneys.  Then I guess you could do dialysis, but I am told with the new health plans, you may not be able to get dialysis if you’re over 70.

Slide Seventeen – Don’t Be Caught Off-Guard by Unsettling Occurrences

Your loved one might go into a hospital or nursing home walking in, but become confused, have difficulty sleeping, eating, walking, and become combative or threatening. 

Why?

Multiple causes.  The person can’t assimilate new rules, routines, people, and surroundings.  The more complex the new situation, the worse it is for the compromised brain.  Think what is the difference between the home setting and the current setting?  With a home-like room in a nursing home vs. an intensive care room in a hospital, especially if tubes are coming from everywhere?

It is important to recognize that when the symptoms first began, they seemed to be developing slowly, but in the latter stages, they tend to cascade rapidly.  And this might be quite confusing and unexpected unless you looked at it prospectively.  Let’s take a look at the next slide.

Slide Eighteen – The Rise and Fall of Intellect 

Two ways to look at this.  One is this graph showing the slope and gains of learning and how it picks up and dramatically increases over time. 

When we start with dementia, it is the reverse.  In the beginning, it is rather imperceptible.  Then it becomes routinely noticeable.  Then it becomes annoying.  Then it becomes problematic and interferes with life in a major way and then there is the final cascade of failure.

Let’s make an analogy here.  Suppose we think about our brain as a ten billion brain cell machine and our favorite souped-up automobile as a ten-cylinder engine automobile.  And let’s take away one cylinder, one tenth of the engine, and one-tenth of the brain.  You barely notice the brain, maybe a few skips here and there.  The engine still runs pretty good with nine cylinders, up hill, down hill.  Maybe not quite as much power going up a hill.  When we lose the second cylinder, we will notice that if we are going up a hill.  We would probably even take the car to the mechanic.  When we lose the third cylinder, we are back to the mechanic and this time we are fussing.  This is about the time we would take a person to a doctor.  At that time or the next time, the doctor would probably start a memory pill, something to help concentration in memory.  The car owner would want to rebuild the engine.  When we’re down to 50%, the judgment has gotten pretty bad.  Mistakes are pretty obvious and the car’s in really bad shape.  At the next level, the judgment is so bad that the person becomes unruly, often combative and the car begins to lose other systems such as the transmission.  From there on out, it’s a rapid decline with the family not being recognized, the body parts beginning to shut down.  The car’s falling apart with the electrical system going and you need to trade it in and then discard it.  And the body gives up.

One other point to remember.  If someone has coronary artery disease and they need to have a stint or a bypass, you need to know that it’s not in the heart as an isolated condition.  That atherosclerosis is present throughout the body, including the brain.

Questions and Answers

Dementia by H.E. Logue, M.D.