Dementia Symptoms in Aging Parents
(Excerpted from the book Helping Your Aging Parent)

Dealing with dementia symptoms in your own parent can stretch the limits of your sanity. Sometimes you may not even notice the first symptoms of dementia -- the slow decline of your aging parent’s memory. The symptoms of dementia may continue until your aging parent starts exhibiting signs of other mental disorders, such as paranoia or delusions, which frequently piggyback on the effects of senile dementia. These symptoms may keep reappearing, until you can’t ignore them and you’re forced to take action. Hopefully, this chapter will help you identify dementia and other mental problems in your aging parents and help you deal with the problem by getting their condition assessed by a professional.

My own mom taught school most of her life. She was highly organized and extremely independent. She read constantly and became quite adept at oil painting. At the age of 76 she moved closer to my sister and I, but her canvases and brushes never seemed to make it out of the moving boxes. I bought her a VCR for Christmas, hoping that renting movies could help her shake her newly-found disinterest in life. But the new VCR was never turned on unless I happened to visit with a movie in hand. It became, like the microwave I had gotten her a year earlier, another piece of unused technology. It never dawned on me at the time that my mom had stopped wanting to learn new things, or that this could mean that her aging mind was showing symptoms of dementia.

Soon Mom became suspicious and paranoid about her neighbors. She thought they could see into her windows, so she would keep the shades drawn tight with safety pins. She talked me into erecting a large barrier to block the neighbor’s view. I did as she asked, even though I thought it was strange to be building a barrier. Mom had always been a little paranoid anyway. I figured it was her scar from having survived the Great Depression. I rationalized that if building a barrier helped her sleep better, and she could open the shades in those darkened rooms, it was worth the effort. I didn’t realize the obvious – that her dementia and her paranoia was growing.

Believing that Mom’s depression was a result of her unhappiness with her living situation, my sister and I began a search to find her senior housing. We placed our hopes on a retirement community that offered a full-time social director to rescue her from the depressed mood we were fighting. The retirement home helped her find new friends and subdued the paranoia, but only temporarily. Soon she insisted we change her banking accounts. She accused the banks of stealing money from her safety deposit box. She also became absurdly paranoid about my brother-in-law, who she suspected, had a master key to her apartment. All missing items were blamed on this poor fellow. We never suspected that paranoia could be a symptom of dementia.

The amazing part of all this is that my sister and I continued right on with our lives, denying Mom’s odd behavior – while helping her change bank accounts and get new locks for her apartment. We just figured it was normal for our aging parent to become strange when she turned 80 years old. We never suspected dementia was taking her away from us.

Symptoms of dementia are insidious, because they start so slowly. Often they are mixed with periods of what appears to be normal behavior. So just when we thought she was showing symtoms of dementia, she’d return with what appeared to be complete clarity, asking us about our spouses and giving the usual motherly advice we had grown up with and trusted. Looking back, I can clearly see the progression of the disorder. But at the time, senile dementia sneaked in and stole Mom from us without a clue. Because of our busy schedules, hectic lives, and maybe a little denial, we didn’t see it until it was too late.

There was also a strong fear going on. I remember thinking that if my mother was showing symptoms of dementia, I must be showing symptoms of dementia too. She was so close to me that I had a lot of her same thinking patterns. She dictated reality to me when I was growing up. I worried about this a lot. I really wanted her to be “normal” so I could feel normal. I didn’t want anyone to find out my mom was acting crazy. I could just imagine everyone at work hearing the news and moving their fingers in circles around their ear saying “Ah ha! That explains it!”

So we took Mom to doctor after doctor trying to find a cure for her symptoms. Was it low iron, low zinc, or low potassium? They drew countless pints of blood trying to rule out what could be causing her behavior. But eventually, most of the doctors proved worthless in offering real help. Not one seemed to be able to tell us what was wrong. None of her five doctors could give us any advice that would help her. They all seemed to deny there was any problem. Fortunately, we met a geriatric counselor who advised us to take her to a local hospital for a geriatric evaluation. I wish we had done this evaluation five years earlier.

Identifying Dementia Symptoms and Other Mental Problems
At the current time there is no real cure for the wide range of mental conditions classified as dementia. But there are some ways to determine if dementia is taking over your parent’s life. If it is, there are steps you can take to slow its path, and keep your sanity in the process. Dementia opens the door for other mental conditions. Apparently, as the older brain compensates for the lack of memory, confusion, and other mental disorders: paranoia and delusion can move in. There are medications that can hold these disorders in check. But at this time, you can only slow the path of dementia symptoms. If your parent’s doctors won’t get involved, it may be up to you to notice that your parent is exhibiting symptoms of dementia and up to you to initiate action to treat their dementia. The checklist Warning Signs of Dementia and Mental Illness may help you identify any unusual behavior that may be warning signs of dementia or mental illness. Also check the health page on this Web site for news on the latest scientific tests and studies relating to dementia and how to prevent it. Also there's an excellent Website that may help: http://www.dementia.com

Most Common Types of Dementia
While Alzheimer’s disease accounts for the largest share of dementia cases (currently 50% - 60%), other forms of dementia also share in the battle for the mind. Lewey Bodies dementia is now in second place, accounting for 15% to 25% of all cases. Vascular dementia, otherwise known as multi-infarct dementia, ranks third.
You’ve probably already heard plenty about the dreaded Alzheimer’s disease, or maybe you know someone whose parents have developed Alzheimer’s. It is by far the most prevalent form of dementia, the most advertised, and usually presents the most severe symptoms. Most Alzheimer’s patients develop the disease after age 70. At this time, nobody really knows what causes Alzheimer’s disease.

Lewey Bodies dementia typically affects people between 60 to 80 years old. Males seem to be at the greatest risk. This disease comes on quickly, with episodes of delirium and prominent psychiatric episodes that include hallucinations. Sometimes there is difficulty with body movement, causing the patient to fall and lose consciousness. At one time, it was believed that this form of dementia was related to Parkinson’s disease since the symptoms were similar.

Vascular dementia is caused by tiny strokes in the brain called infarctions. The symptoms are similar to Alzheimer’s, but from what caregivers tell me, the symptoms aren’t as severe as Alzheimer’s. Afflicted patients have less of a tendency to wander than Alzheimer’s patients, and may have fewer personality changes than Alzheimer’s patients.

Many times dementia may be diagnosed as a combination of diseases. For instance my mom’s dementia was diagnosed as caused by infarctions, which was determined by a CAT scan, but she also showed some indications of Alzheimer’s disease. This diagnoses would imply that along with tiny strokes, there were plaques and tangles in her brain related to Alzheimer’s disease.

While no single test can diagnose Alzheimer’s disease, a trained physician can be 80-90% accurate. A clinical diagnosis of your parent’s condition is really important, as it will tell you if the dementia is caused by reversible conditions, such as drug reactions, tumors, infections, thyroid problems, or nutritional deficiencies. Even if the dementia is diagnosed as irreversible, the diagnosis may identify other treatable problems that may be compounding your parent’s dementia. And while there is no treatment today that can reverse dementia, you may be able to slow the deterioration it causes with drugs and vitamin supplements.

It’s very typical to resist taking your parent for a clinical evaluation. You can tell yourself it will be too demanding for your parent, or too much hassle for you and your family. There’s also the fear of knowing the worst. Knowing what takes place in the evaluation process at a geriatric evaluation clinic may help you overcome this anxiety.

Immediate Action to Take
If you start to notice odd behavior in your parent, make sure you’ve drawn up the important papers mentioned in Chapter 3; Power of Attorney for Health Care, Durable Power of Attorney, Life Directive and Death Directives, and a good Living Trust. Make the most of this time while your parent is cognizant of their life. Also, you have to realize that if they are losing it, the time for long meaningful talks will go by very quickly. If your parent has assets, and you haven’t done so yet, consider taking them to a lawyer to plan their asset protection, as mentioned in Chapter 3. You want to be sure there will be assets available if your parent ends up in a nursing home.

The Doctor Visit
If you haven’t done so by now, as mentioned in Chapter 2, get your parent to a doctor as part of a thorough physical examination. Normally, the doctor will take a blood test. One of the things he checks for is potassium level. Low potassium can affect memory and cognitive ability and make people act a little strange. Bring your prescription list from Chapter 2 to the doctor. The wrong balance of drugs can sometimes cause the brain to act strangely.

The blood test will also check for syphilis. I realize it seems absolutely ludicrous to think your elderly parent would have a venereal disease such as syphilis. But it must be completely ruled out before the doctor can go on to test for the next possible cause. The affects of syphilis on the brain over time can result in dementia-like symptoms. Giving approval for the syphilis test is the start of the little indignities that will occur when your parent is suspected of having dementia. These indignities are the way older people with dementia symptoms are often treated by the medical community and the general public at large. You may find that it’s difficult for anyone to show genuine compassion for them and their condition.

Memory Field Test
To test for dementia a doctor can perform a memory field test. The doctor will explain to your parent how he will make the test. During a casual conversation, he will list three items that your parent should try to remember. In my mom’s case, it was a red Cadillac, Elvis, and a birthday cake. Then he’ll engage your parent in some other conversation and ask them a few difficult questions such as “Who is the current President of the U.S.A?” or “Who is the Vice-President?” After this distraction, he’ll ask your parent to repeat those three key items (red Cadillac, Elvis, and a birthday cake) he mentioned earlier. If your parent fails to remember two of the three, the doctor will probably recommend further testing at a hospital that tests geriatric patients for memory and mental problems. If he doesn’t recommend further testing, be sure to ask him why he doesn’t.

CAT Scan
Sometimes, if your parent fails the field test, the doctor may recommend a CAT scan to find any undetected strokes or tumors that may be causing the abnormalities in their behavior. If your doctor doesn’t recommend this, ask about it. A CAT scan can see through layers in your parent’s brain and search for an undetected stroke. Recent studies have found that silent, small strokes may be present in as many as 80% of people with dementia. If your parent has high blood pressure, this is especially applicable, as their arteries may harden with age and small pieces may break off and cause tiny clots in the vein. These micro strokes in the brain are called infarctions. They can short-circuit the brain’s wiring, causing dementia. This form of dementia is known as multi-infarct dementia. While you can’t undo the damage of these strokes, you can see that your parent takes the correct drugs to help prevent future strokes – and, hopefully, slow your parent’s mental decline. To read more on multi-infarct dementia see: http://www.ninds.nih.gov/health_and_medical/disorders/multi-infarctdementia_doc.htm

Dealing with Doctor Denial
After Mom failed the field test for dementia, the doctor rolled his eyes and put his palms out as if to say, “What do we do now?” He took us aside and told us Mom was just getting old and maybe a little forgetful – nothing to worry about -- even though she was showing symptoms of dementia. I wish we hadn’t accepted this doctor's answer. If you know in your own mind that your parent’s memory problems are getting worse, you may have to take the initiative yourself. Unfortunately, to the doctor, your aging parent may be just another old person that’s losing their memory but is still able to cope. Since there is no cure for dementia, the doctor may not be willing to deal with something he can’t prescribe a pill for, or thinks he can’t help heal. Or maybe it’s a communication gap between doctors and caregivers. In a recent survey conducted by the Alzheimer’s Association, it was discovered that over half of caregivers wanted to know how Alzheimer’s symptoms would affect their patient’s ability to do normal tasks, but only 28% were able to get this information from their doctors.

How to Find Screening
Get out the Eldercare Directory. You can usually find these little gems at your local senior center, or you can check their Web page at www.eldercare.com. If you can’t locate a resource guide, call the senior center and ask them if they know of a local hospital that does free screening by geriatric specialists. If they don’t know, call a local hospital directly and ask for the number of a geriatric assessment center. If you live in the U.S., there are usually at least two hospitals within 30 miles of you. One of them should know of a geriatric assessment center near you. Try calling the Alzheimer's Association help line at (703) 359-4440 or the National Association of Geriatric Care Managers at (520) 881-8008. Don’t give up. Don’t deny to yourself that your parent has a problem. Your parent may themselves notice that something strange is going on in their behavior. But they may blame that behavior on something else — such as being overly tired or hungry. Or they may blame their medications.

The Geriatric Assessment Evaluation
If your aging parent is on Medicare, and showing symptoms of dementia, the test at the geriatric assessment center is free. You may find it important to get your family members involved before you take your parent for evaluation. Later, if guilt sets in for being the one to take action, you’ll have someone to share it with, and someone to remind you that you had no other choice. The hospital evaluation for dementia can be a real turning point in your aging parent’s life, and your life as well. Usually, your elderly parent will be required to spend several days in a hospital while undergoing physical and psychiatric tests, and evaluation by a medical and psychiatric team who specialize in geriatric disorders. The team will assess your parent’s condition, prescribe drugs, and help you plan for your aging parent’s future care.

The downside of the test is your aging parent may feel they are just fine and don’t need to go to any hospital for testing. They may also not want to face the fact that they’re losing their memory and their grip on life. Most elderly people enjoy their independence and don’t want to think about being mentally incompetent or dependent on another person for care. They may be very reluctant to find out the truth of their condition. Be gentle, and remind them that it’s what the doctor wants. A phrase that worked for me was “Let’s get it over with so you can feel better.” And “Let’s get a professional evaluation so you can feel better.”

Leaving your aging parent in a geriatric hospital for two days won’t be easy for you either. It wasn’t easy for me. If you’re not careful, guilt will begin to torment you. If you think it over carefully, you’ll realize that what you did, had to be done. Find someone you can talk to comfortably. Perhaps you can discuss it with a good friend of your aging parent – someone who can back you up and go with you and your parent to the evaluation center.

Talk with your other family members too. This whole episode, though one of great pain and tribulation, is a great opportunity to get to know your family better. It can bring you all together and make your family stronger. Don’t cheat any family member out of the chance to share emotions or memories with you during this episode in your parent’s experience. Pull out your Family Enlistment Form from Chapter 1. This is the time to enforce it. Turn this misfortune into an opportunity to bond with your family. If you have a family member who isn’t ready to help, move on to the next one. Don’t hate them if they’re unable to join in to help your parent. You don’t know everything going on in their life at this time, so try not to be judgeful. This is a painful part of your journey through life – an opportunity for understanding and love. If your family doesn’t have the love, time, or understanding within them to help your aging parent, forgive them and move on. Some day they’ll probably regret their decision, and you can talk about it then. But right now, you need allies, friends, and support.

Once your parent gets to the hospital or testing facility, they’ll probably enjoy the attention and all the questioning they receive from the staff. They may even enjoy the time they spend in the center – especially if they’re currently living alone and have few people to talk to.

The Actual Geriatric Evaluation Exam
While your parent is in the hospital they’ll be diagnosed by a trained staff of around five people, who will give them an interview, test, and physical examination that includes blood tests to rule out all curable causes for dementia. Then they’ll probably give your parent a neurological examination and laboratory tests such as an electroencephalogram to record activity in the brain, a CT scan to make an X-ray of the brain, or an MRI scan to produce a picture of the brain.

After these examinations, they’ll probably administer a series of psychiatric evaluations to make sure that your aging parent isn’t suffering from depression or another psychiatric ailment that mimics the symptoms of dementia. They’ll perform psychometric tests to determine your parent’s area of impairment and areas of remaining strength. They’ll also test your parent’s abilities to perform routine tasks necessary for taking care of themselves.

The staff will check the prescription and non-prescription drugs your parent is taking, especially the ones that can affect the central nervous system. Be sure and bring your parent’s drug list you prepared in Chapter 2.
Eventually they’ll have enough data to diagnose your parent. If it’s found that your parent has controllable mental disorders, they’ll prescribe a cornucopia of psychotropic drugs in an attempt to achieve normalcy. These drugs should help your parent cope with the frustrations of losing their memory, and the side effects of memory loss, such as hallucinations and paranoia. This will help your parent enjoy more of the time they have left in their lives.

Sometimes, as in my mom’s case, in the search for the appropriate drug dosage, the doctors will start high and gradually decrease the dosage. When you visit your parent at the clinic, they may be on an emotional roller coaster ride that will continue until the doctors find the correct drug dosage to return your parent to as normal a state as possible. A few months after your parent is discharged from the geriatric evaluation, you may find that these drugs have caused your parent to mellow considerably. In fact, you may want to cut back on the dosage before they mellow into a vegetable. If your parent starts to fall asleep constantly in front of the TV, don’t hesitate to call the doctor back and discuss cutting the dosage. You’ll probably have to take charge here, because when your parent is released from the geriatric assessment center, you’ll become your parent’s advocate. They’ll be relying on your care and judgment from this point on.

Learning to Live With the Stigma of Dementia
Degenerative brain disorders may cast up a whole host of horrible images. Visit a few Alzheimer’s nursing homes and you’ll quickly understand why. It’s very scary to be around people who appear crazy. But just because your parent is exhibiting symptoms of dementia doesn’t mean they have full-blown Alzheimer’s disease. If they do have Alzheimer’s, it doesn’t necessarily mean you’re going to get it. The stigma of Alzheimer’s is so strong that sometimes you may not even want to face the fact that your parent may have it. You may just pretend your parent has a little memory problem and is not displaying symptoms of dementia. The only problem with this is that your parent’s symtoms just seem to get worse. Left untreated, the problem grows, causing confusion, misunderstandings, and paranoia. Some day you may get a call from the police saying they found your parent wandering around lost in a busy intersection, in their underwear. Or your parent may take their nest egg money out of the bank and hide it somewhere and forget where they put it, as my mom did, or accuse someone of stealing it. You don’t want things to come to this point, so overcome your fears. You’ve got to take action – and quickly. You’ve got a parent who needs your help. Take action at the first symptoms of dementia show themselves.

If your parent is actually diagnosed by the hospital as having dementia, it’s time for you to get busy planning for the future. You’ll probably feel confused, and have a sense of loss, like your parent has died, and yet is still living. Rest assured, they’ll come back now and then for short spells. But the time for long discussions and analysis of complex problems with them is probably nearing an end. And the time for you to start becoming a caregiver to them is revving up into high gear. So what happens from here on is usually up to you and your family to decide on the type of care your parent will need, and how to acquire it. Hopefully, this book will help.

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