FAQ: Caring for Alzheimer’s and Dementia

1. Is memory loss a normal part of old aging?

2. My mother was diagnosed with dementia – is that the same thing as Alzheimer’s disease?

3. My dad who is 76 years old, has become very forgetful over the past couple of years. I am afraid he may have Alzheimer’s disease. I don’t know where to start or who to talk to about getting a diagnosis. Can you help me?

4. My husband refuses to admit he has a memory problem, when in fact, he was diagnosed with Alzheimer’s disease 6 months ago. Why is he denying that he has a problem? He has always been pretty straightforward talking about himself in the past, but not now. Why?

5. I have heard that Aluminum causes Alzheimer’s disease. Should I stop drinking out of aluminum cans and throw away my aluminum pots and pans.

1. Is memory loss a normal part of old aging?

Memory loss is not limited to aging, but has greater significance when we are older and we forget. Although memory changes begin in our 40s, the changes are so gradual and so small that people hardly notice. By the time people are in their 60s and 70s memory changes have continued and are much more noticeable to ourselves and perhaps to others.

The most common and normal changes in age-related memory loss are:

• It takes us longer to recall names of people, places and things. Some call it a “senior moment” or the “it’s on the tip-of-my tongue” syndrome.
• It takes us longer to learn. This is because it takes us longer to process new information. But the adage “You can’t teach an old dog new tricks” is just not true.
• It is harder for us to screen out distraction. When we are young, we can do multiple things at the same time, but when we grow older, distractions are harder to screen out, making it harder to focus on the task at hand.
• Keeping track of events, dates, phone numbers, and appointments is more challenging. Occasionally forgetting appointments or a birthday is normal as we grow older. Forgetting the phone number we have had for 25 years is not normal.
• “What am I here after?” syndrome. Most of us do it: go into a room for a specific reason, stop in our tracks and ask “Why did I come here? What am I here after?”

There are various degrees of age-related memory loss. If you are concerned whether your loved one’s memory loss is within the normal range, schedule an appointment with their doctor.

2. My mother was diagnosed with dementia. Is that the same thing as Alzheimer’s disease?

I am asked this question frequently. The reason for the confusion is because dementia and Alzheimer’s disease are used interchangeably. Dementia is not a disease; it is a syndrome that describes a number of signs and symptoms that are indicative of one or more diseases. Memory loss, shortened attention span, changes in personality, abilities and behavior are a few of the characteristics of dementia. There are hundreds of different types of dementia that produce similar symptoms.

Alzheimer’s disease is the most common form of progressive dementia, meaning it gets worse over time. Other types of dementia are Lewy Body dementia, vascular dementia, Frontal Temporal Dementia and Parkinson’s disease with dementia. Although the symptoms are very similar in the different types of dementia, they can also be very different because of the part of the brain that is affected.

It may help to think of dementia this way: Everyone with Alzheimer’s disease has dementia but not everyone with dementia has Alzheimer’s disease.

3. My dad who is 76 years old, has become very forgetful over the past couple of years. I am afraid he may have Alzheimer’s disease. I don’t know where to start or who to talk to about getting a diagnosis. Can you help me?

When a parent or a loved one begins to show signs of increased memory loss, it is normal and common to think the worst. It is important to get a thorough work-up to determine what the cause of his memory loss is.

The first place to start is with your relative’s primary care physician. Ask for a memory screening. The Mini Mental Status Exam (MMSE) is an 11 question screening tool that evaluates memory, language, attention and calculation, recall and registration.

Someone who scores 30 points (maximum number of points) is considered within the normal range. A score of 24 or lower indicates cognitive impairment. The question then becomes “what is causing the changes?” The MMSE is a screening tool, not a diagnostic tool.

When a patient scores in the 24 point range, a doctor will usually order further testing to determine what the cause of his patient’s cognitive impairment might be. These tests may be ordered by the primary care physician or the patient may be referred to a specialist such as a geriatrician, neurologist, or gero-psychiatrist.

A thorough work-up includes:

• Blood tests to rule out vitamin deficiencies, thyroid functioning, infections, and other possible causes.
• A thorough physical exam.
• A psychiatric exam. It is often difficult to know if a person suffers from depression or dementia. Depression is often referred to as ‘pseudo-dementia’ because the symptoms look very much like dementia: loss of memory and initiative; changes in mood, personality and behavior are associated with both disorders.
• A complete medical, social, occupational, and medication history given by the patient and also by family members, friends and other caregivers, if involved.
• An evaluation of behaviors, usually given by family members.
• CAT scan or MRI to see if there is any evidence of strokes or brain tumors.

Family members observations are very important in the diagnostic process because a person with cognitive impairment might not be able to accurately report changes in abilities, behaviors, and cognitive functioning.

After all these tests are performed and the results are reviewed, a diagnosis can be given. The only way to confirm a diagnosis of Alzheimer’s disease is to perform a brain autopsy after death, but a diagnosis that includes careful evaluations in the above areas is 80-90% accurate.

If you are concerned, call your doctor today and ask for a memory assessment.

4. My husband refuses to admit he has a memory problem, when in fact, he was diagnosed with Alzheimer’s disease 6 months ago. Why is he denying that he has a problem? He has always been pretty straightforward talking about himself in the past, but not now. Why?

It is often hard to know if a person is in denial about his memory loss or just forgets that he has a problem. It may help to think of it this way: denial is a refusal to admit that there is a problem. Denial is more of a conscious or sub-conscious decision that something exists. Denial can protect a person with Alzheimer’s disease (AD) as well as family members until they are ready to accept the diagnosis and the losses that AD causes. But this is usually not the case with people with Alzheimer’s disease and probably is not the case with your husband. Your husband just simply forgets that he forgets. Keep in mind that memories are stored in the brain and when the memory center of the brain is damaged, memories can be lost.

Another part of our brain—likely in the right hemisphere—is responsible for giving a person insight into him or her self. If this part of your husband’s brain is damaged, then he may not have self awareness or insight into himself and what he can and can’t do.

5. I have heard that Aluminum causes Alzheimer’s disease. Should I stop drinking out of aluminum cans and throw away my aluminum pots and pans.

The theory that aluminum causes AD has been controversial for the past 40 years. Early studies found a higher level of aluminum in the brains of people with Alzheimer’s upon autopsy. But other studies did not. Some early research studies found a higher rate of AD in people who used antiperspirants and antacids, while other studies do not confirm this theory. Studies have found that people who worked around aluminum in their jobs are not at an increased risk of getting AD.

Aluminum can be found in the air we breathe, the water we drink and the food we eat. It can be found in cosmetics and added to some medications to make them more effective. And we all have aluminum in our bodies.

The aluminum in pots and pans or in soda cans does not leak into the foods at a high enough level to cause a risk. And some foods we eat do have aluminum in them.

The current thinking is that there is not enough convincing evidence that aluminum increases a person’s risk of developing AD.

Elder Care & Elder Rage: Know the EARLY Warning Signs of Alzheimer’s Disease

By Jacqueline Marcell

For eleven years I pleaded with my elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving each other, he insisted on taking care of her himself. Every caregiver I hired to help him sighed in exasperation, “Jacqueline, I can’t work with your father—his temper is impossible to handle. I don’t think he’ll accept help until he’s on his knees himself.”

My father had always been 90% great, but boy that temper was a doozy. He’d never turned on me before, but then again I’d never gone against his wishes either. When my mother nearly died from an infection caused by his inability to continue to care for her, I flew from southern California to San Francisco to save her life—having no idea that in the process it would nearly cost me my own.

Early Signs of Dementia?

I spent three months nursing my 82-pound mother back to relative health, while my father said he loved me one minute, but then would get furious over some trivial thing, call me nasty names and throw me out of the house the next. I was stunned to see him get so upset, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart wrenching to have my once-adoring father turn against me.

The doctor evaluated my father, but I was flabbergasted he could act so normal when he needed to! I could not believe it when the doctor looked at me as if I was the crazy one. She didn’t even take me seriously when I reported my father had nearly electrocuted my mother. Luckily I’d walked in three seconds before he was about to plug in a huge power strip soaking in a tub of water—along with my mother’s feet! Much later I discovered that my father had instructed his doctor (and everyone) not to listen to anything I said because I was just a (bleep) liar and all I wanted was his money. (I wish he had some.)

Then things got even more serious. My father had never laid a hand on me, but one day he nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it a few days before. Terrified, I dialed 911 and the police took him to a hospital for evaluation. I could not believe they released him, saying they couldn’t find anything wrong with him. What is even more astonishing is that similar incidents occurred three more times.

Caregiver Catch 22

I was trapped. I couldn’t fly home and leave my mother alone with my father—she’d surely die from his inability to care for her. I couldn’t get healthcare professionals to believe me—my father was always so sane in front of them. I couldn’t get medication to calm him and even when I finally did—he refused to take it, threw it in my face or flushed it down the toilet. I couldn’t get him to accept having a caregiver and even when I did—no one would put up with him very long. I couldn’t place my mother in a nursing home—he’d take her out. I couldn’t put him in a home—he didn’t qualify. They both refused Assisted Living—legally I couldn’t force them. I became a prisoner in my parents’ home for nearly a year trying to solve crisis after crisis, crying daily, and infuriated with an unsympathetic medical system that wasn’t helping me appropriately.

Geriatric Dementia Specialist Makes Diagnosis

You don’t need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, I stumbled upon a neurologist specialized in dementia who performed a battery of blood, neurological, memory tests, and CT/P.E.T. scans. He reviewed my parents’ medications and ruled out reversible dementias such as a B12 or thyroid deficiency. And then, you should have seen my face drop when he diagnosed Stage One Alzheimer’s in both of my parents—something all their other doctors missed entirely.

Trapped in Old Habits

What I’d been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime and his habit of yelling to get his way was coming out over things that were illogical… at times. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated) and that he was still socially adjusted never to show “Hyde” to anyone outside the family. Even with the onset of dementia, it was amazing he could still be so manipulative and crafty. On the other hand, my mother was sweet and lovely like she’d always been.

Balancing Brain Chemistry

I learned that Alzheimer’s makes up 60-65% of all dementias and there’s no stopping the progression nor is there a cure. However, if identified early there are medications that in most people can mask/slow the symptoms of the disease, keeping a person in the early independent stage longer, delaying full-time supervision and nursing home care. (Ask a Dementia Specialist about: Aricept, Exelon, Razadyne and Namenda.)

After the neurologist treated the dementia and the depression (often present with dementia) in both parents, he prescribed a small dose of anti-aggression medication for my father, which helped his temper without making him sleep all day. It wasn’t easy to get the dosages right and when we did, things were still not perfect — but at least we didn’t have any more police intervention. Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluid intake, and all their medications with much less resistance.

Creative Behavioral Techniques

Additionally, I was finally able to implement techniques to cope with the bizarre behaviors. Instead of logic and reason—I used distraction, redirection and reminiscence. Instead of arguing the facts—I agreed, validated frustrated feelings and lived in their realities. I learned to just “go with the flow” and let nasty comments roll off. And if none of that worked, a bribe of ice cream worked to get my father in the shower, even as he swore a blue streak he’d just taken one yesterday (it had been a week.

Then finally, I was able to get my father to accept a caregiver (he’d alienated 40 that year—most left after ten minutes), and with the benefit of Adult Day Care five days a week for them and a support group for me, everything started to fall into place. It was so wonderful to hear my father say once again, “We love you so much, sweetheart.”

Expanded Descriptions: www.elderrage.com/

Jacqueline Marcell is a former television executive whose caregiving experience resulted in her book, “Elder Rage”, a Book-of-the-Month Club selection receiving 262 five-star Amazon reviews and being considered for a film. Over 50 endorsements include Hugh Downs, Regis Philbin, John Hopkins Memory Clinic, and the National Adult Day Services Association who bestowed their Media Award. She also received “Advocate of the Year” from the National Association of Women Business Owners at their Remarkable Women Awards. Jacqueline also hosts the “Coping with Caregiving” radio program at www.wsRadio.com/CopingWithCaregiving; writes for AgingCare.com and ThirdAge.com; and is a national speaker including to the National Security Agency and Florida House of Representatives. Jacqueline is also a recent breast cancer survivor who advocates that everyone (especially caregivers) closely monitor their own health. www.ElderRage.com

Medications Currently Available for Alzheimer’s Disease: Are Modest Benefits Better than No Benefits?

By Dr. Joseph Quinn

There are two main classes of medications that have been FDA (Federal Drug Administration) approved and are available for people with Alzheimer’s disease and other forms of dementia.

Cholinesterase Inhibitors

Cholinesterase inhibitors make up one class of medications. The most common cholinesterase inhibitors are Aricept, Razadyne (formerly marketed as Reminyl), and Exelon. These drugs work by boosting the chemical in the brain called acetylcholine, which we believe helps with memory and alertness, as well as thought process. Individuals with Alzheimer’s disease show a decrease in their levels of acetylcholine, and these drugs work to raise that level and/or increase the brain’s response to acetylcholine.

There hasn’t been sound evidence that one works better than the other, so we tend to think of these drugs as interchangeable.

Side Effects

The most common side effect is stomach upset. Acetylcholine, the chemical these drugs boost in the brain, also works in the gastrointestinal tract, so sometimes patients will experience some discomfort – although the severity and prevalence is much lower than you would expect. In order to prevent stomach problems, we usually start a patient on a very low dose and increase it over the next several months. Taking the medication with food can also help.

Namenda—In a Class by Itself

Memantine, or Namenda, works in a completely different way than the other three drugs. It affects glutamate, another chemical involved in the function of the brain that plays a role in learning and memory. Namenda has been approved for people with moderate to severe Alzheimer’s disease. Some patients experience improved results without further side effects when Namenda is combined with a cholinesterase inhibitor.

Side Effects

There is no stomach upset with Namenda, but some patients do experience dizziness. Starting with a lower dose and gradually increasing it seems to help combat this side effect.

How Do We Know These Medications Work?

All four of these medications have been studied in double-blind placebo-controlled trial studies, the gold standard of drug development. Patients take a study drug and neither the patient nor the treating physician knows whether it’s an active drug or a placebo. All of the assessments are made in this blinded state in order to try to remove any wishful thinking.

In these studies, these drugs have shown treatment effects. At the end of six or 12 months, when the patients on treatment are compared to the patients on placebo, the former fared better than the latter.

This positive result has been consistent across the drugs and across the trials, and I don’t think anyone would argue that point. The data was strong enough to lead the FDA to approve these drugs.

The Argument for and Against

What people do argue about – and they argue about it a lot – is whether the magnitude of the effect is worth the cost of the drug. The effect is very small in general. It’s usually three to four points on a 70 point scale. A minority of treated patients (10% – 20%) do have a more visible effect. They are robust responders who are obviously benefiting from the treatment. The family can see an improvement; some of the tests scores vastly improve. But most patients don’t experience those kinds of benefits.

In the controversy around the drugs, there are two ends of the spectrum of opinion. The pharmaceutical companies say these are valuable drugs with dramatic results and everyone with a memory problem should be on them. And those that are trying to control costs say these drugs are not so effective and they’re not worth the retail cost of them.

Working With What We Have Until We Have Something Better

This controversy is not a matter of science, but a value judgment. My feelings, and those of many of the physicians working with Alzheimer’s patients, fall somewhere in between. We think these drugs are definitely worth trying. At the very least, we need to determine if the patient turns out to be one of the robust responders, and we don’t know who those people are in advance. And for those who experience mild results? If we are able to make a sick brain even just a little better, we believe there is value in that.

We all look forward to a time when we can offer all our patients newer drugs with substantial benefits in fighting and even preventing Alzheimer’s disease.

Dr. Quinn specializes in general neurology and dementia. The assistant professor of Neurology received his medical degree from the University of Southern California, Los Angeles, in 1990. He completed his residency training at OHSU, and his fellowship in Geriatric Neurology at the Portland Veterans Affairs Medical Center. Dr. Quinn received his board certification in Neurology in 1997.

Caring for Loved Ones with Alzheimer’s and Dementia

Making the Holidays Count for You and Your Relative

Holidays are often a time for families to be together, for sharing and carrying on traditions that have long been a part of a family’s history. But for families affected by Alzheimer’s disease or other forms of dementia, holidays can be a time when a person with memory loss may not be able to participate as she (or he) once did in activities or conversations. The question then becomes “How can we best get through the holidays with minimal upset and frustration for all of us?”

Holidays can be a time of heightened activity, sounds, and get-togethers.By adjusting your expectations and doing some planning ahead of time, holidays can be an enjoyable time. Here are some suggestions for getting your family ready for and through the holiday season.

Recognize that holidays may not be the same as they have been in the past. Adjusting your expectations and schedule ahead of time may help you. Common feelings of loss, sadness, and anger at the disease may be heightened at this time of the year. Talk with other family members who are likely to be experiencing some of these same feelings and may have some suggestions of how to cope.

Give yourself permission to do only what you can manage. Ask other family members and friends to help you with decisions, celebrations and events. You may be surprised how willing others are to help you, but you have to accept help when help is offered, or ask for help when you need it.

Discuss with family and close friends how the holidays will be celebrated: What traditions will you observe? What traditions or events will you not do this year?

Help prepare visitors for their visit with your relative. Family members and friends, who have not seen your relative in a while, may be surprised at the changes your relative has experienced. Tell them what to expect, in either a letter email or a phone call.

“ While I am looking forward to your visit, I thought it might be helpful for you to know what to expect and how mom is doing before you arrive. Mom is having more problems remembering and recognizing people. Although she may not recognize you, I am confident she will appreciate your company and so will I. Please do not think it is strange when I introduce you, sometimes this helps mom be more relaxed. I have some old photos of our vacations at the cabin that I thought we would enjoy looking at together….. “

Think through where your relative is most comfortable celebrating the holiday: in her home or your home? Some people with memory loss are more relaxed being in their own home. Many families find that taking the holiday celebration to their relative is better than taking their relative to a holiday celebration. Too much noise and activity, and too many people can be hard for some people with memory loss to tolerate no matter where they are.

Try several celebrations rather than one large celebration. If your relative lives in a residential care home, find out when the holiday activities are scheduled and plan to visit during those times. Participate in the sing-a-long with other residents; bring a favorite holiday food, etc.

Consider celebrating with your relative before or after the holiday. Many families with a relative in the middle – late stages of Alzheimer’s disease, find that celebrating a holiday a few days before or after the actual holiday, may be more manageable for them and less stressful for their relative. Separate celebrations may be easier for everyone. A holiday is still a holiday wherever and whenever you celebrate it with your relative.

Maintain your relative’s routine as much as you can to avoid increased confusion. Schedule holiday activities around rest times and meal times as much as possible.

Be alert to signs of agitation, fatigue and increased confusion. Facial expressions such a furrowed brow or tense mouth, pacing, increased tapping fingers or slapping hands on table, and loud outbursts may indicate the person with memory loss may be overwhelmed or over stimulated and needs to get away from a noisy or crowded room.

Try altering traditions, not eliminating them. Most people with Alzheimer’s disease, or other types of memory disorders, can enjoy the spirit of the holidays, especially if this time of year was important to them in the past. Holiday baking, holiday cards, sing-along, gift wrapping, being with grand children, etc. can be adapted to your relative’s abilities, length of attention span or your relative’s best time of day.

Enjoy the moments when meaningful activities and conversations occur, even if they are not as long as you might wish.

Keep it simple. Keep in mind it is not how much you do, but the enjoyment your relative receives from doing things and being with family and friends, if even they are different from past holidays.

Biography

Laurie White, MSW, is well versed in the complexities families face as they move their relative from a family home to an assisted living or board and care community. For 20 years Laurie has helped countless families with making the decision, planning the move and adjusting to having a relative in a more supervised setting. She is also one of the authors of “Moving a Relative with Memory Loss”.

Alzheimer’s and Dementia: A Diagnosis Can Make a Difference

If you’re concerned about your relative’s memory loss, or notice additional problems such as changing personality, mood or behavior changes, it may be time to see the doctor.

Talk with your loved one about what changes you’ve noticed and why you think it’s important to make an appointment. Most older adults know about Alzheimer’s disease or other forms of dementia and they may be scared that they’re ‘getting’ it, too.

Reassure them that there are many reasons why memory changes. An appointment with the doctor can determine what’s going on and if medications, depression, thyroid problems or a vitamin deficiency are causing the symptoms.

The doctor will do some initial screening and then further tests, if needed. If it does turn out to be Alzheimer’s or another form of dementia, it’s important to know what to expect and where to get help for you and your loved one.