CHAPTER ONE
YOU’RE READING THIS BOOK because someone you love has been diagnosed with dementia or you suspect that your loved one’s forgetfulness or quirky behavior might be something more serious. You may be feeling confused, frustrated, hurt, or frightened. You may be aching with anxiety and grief as your relationship changes profoundly and permanently. The problem may feel so big that you’re reluctant to look at it fully.
One of the most heartbreaking misconceptions I see in my practice is when families assume that a diagnosis of dementia means that life won’t be worth living any longer. Nothing could be further from the truth. Life can still be rich. But this requires that we reconsider some of our assumptions and expectations about life and about dementia.
The biggest lie is that dementia means, “It’s all over.” Have hope. You can still enjoy good times together. A diagnosis of dementia doesn’t mean the end of the world. Yes, a family’s life changes when dementia enters in. Sometimes the shifts come dramatically: an elder will have a sudden health setback. Dad may go out for a drive and not be able to find his way back home. Mom may try to “escape” her assisted-living facility because she’s convinced they are keeping her prisoner.
Yet, as we will see, these setbacks can be overcome. Life can continue to bring love, joy, and fulfillment. With the proper support and information, people with dementia can have engaging, enjoyable lives. I have helped thousands of families and patients find solutions to the challenges that make the elders miserable: untreated pain, medications causing agitation, lack of caregiving knowledge and strategies, or the needed level of care to live with joy or contentment, even as the decline progresses. Of course, the goal of this guide is to give you the ability to live with joy and contentment, too.
What it takes is proper care, support, and education. This book aims to begin that process.
You may wonder if you’re overreacting. Does my loved one really have early dementia? How can I tell if there’s really a problem?
First Signs
The earliest stages of dementia are the most difficult to identify and to deal with. Where is the line between eccentricity and dementia? Between normal forgetfulness and dementia? Between stubbornness and dementia? Between normal caution and demented paranoia?
Nearly every family I work with clearly remembers the confusion that set in when they first started to suspect that something was wrong with their elder loved one. Here are a few examples from relatives of my patients.
Ellen, about her mother-in-law: “She started leaving the oven on. She would forget to flush the toilet. She didn’t remember if she had eaten or not.”
Kelly, about her husband: “He had always been good with our finances, but he began to pay some bills late or he would forget to pay them at all. That wasn’t like him.”
Robert: “My father was only in his sixties when we noticed something was off. He was an attorney and always very organized. But he started to forget appointments, meetings, even my son’s birthday. He forgot to take his medication. He forgot to do his taxes. His mail was piling up, but when I commented on this he got angry.”
Brian, about his wife: “She started having problems at work. She had problems with her speech, stumbling over her words, forgetting some words completely. I started to notice that she’d use the same catch phrases over and over.”
Forgetfulness is common. If these things happen once or twice, it may just be a mistake. But if you begin to notice a pattern, it may be time to check things out. If there are repeated financial lapses, you may need a trustworthy agent, like a fiduciary or a conservator, to manage their finances.
If you’re comfortable discussing finances with your loved one, bring up what’s causing your concern. If you see red-striped notices from the power company or the tax collector on the desk in your father’s study, don’t hesitate to talk to him about it. It’s not snooping; it’s protecting your loved one.
Often, elders are hesitant to turn over financial control to their adult children. In this situation, try to emphasize “the hassles of bills.” At times it makes sense to have a third-party professional, especially when there is discord in the family. Explain that a professional fiduciary can take on that burden without taking control.
You may also notice behavioral and mood changes. In the early stages, an elder might appear reasonable most of the time. She might also, however, begin to spin suspicious tales, convincing the authorities that her husband is beating her or that a housekeeper is stealing or that a caregiver is climbing into bed with her. Of course, those stories should be checked out. But it may well turn out that the husband simply patted her on the hand or that she misplaced her pearls or that the caregiver must kneel on the bed to help change her incontinence underwear.
The early stages of dementia may be the most challenging for families. Without warning, their loved one is acting strangely, cranky, and unpredictable. It’s difficult not to feel frustrated or annoyed. It can feel as if the person is willfully misbehaving, ruining the day on purpose.
The important thing to remember is that people suffering from early dementia aren’t trying to be difficult. They can’t help their perplexing behavior. They may not be consciously aware that they have changed. Or they may be acutely aware of the changes, and actively trying to hide them.
Home Test: Screening for Dementia
If you’re not sure whether your loved one is having cognitive problems, try one or two of these simple tests:
• Ask the person to draw a clock showing the time as ten minutes after eleven o’clock. (The trick is to put the long hand and short hand in the right places.)
• Ask him to name as many animals as he can in one minute. If he can list more than twenty animals, that’s about normal.
• Can your loved one determine 25 percent of $22.50? If not, and that person does the finances, he or she needs evaluation. This is a simple calculation; if this is challenging, this person isn’t able to address more complex financial decisions.
If your loved one has trouble with these and other areas of daily living, then it’s time to go to a doctor—but not just any doctor.
Make an appointment with a geriatrician, a neurologist, or a physician recommended by the Alzheimer’s Association. (General practitioners are fine for many medical issues, but they typically aren’t accustomed to the subtle signs of early dementia.)
So, What Is Dementia?
Although dementia research has increased exponentially since the 1980s, there is still much about it that isn’t yet understood. Here, briefly, is an overview of what we know.
First, let’s be clear on what dementia isn’t. It is not forgetting where your glasses are. It’s not forgetting someone’s name when you run into him at a party. It’s not losing your train of thought when you’re cooking dinner and trying to herd your children through their homework. These are normal lapses that affect all adults from time to time.
In casual conversation, the words dementia and demented may take on a variety of meanings, everything from “silly” and “goofy” to “hopelessly inept” or “crazy.” In medicine, dementia has an exact definition with three key aspects.
1. A loss of short-term memory. It’s not just forgetting names or not remembering what you were doing. The problems start when the patient forgets that he’s forgotten, when his understanding of the past and of the future gets fuzzy. He doesn’t just forget an appointment with the doctor; he forgets that he has been to the doctor and that the doctor has prescribed a change of directions for taking his blood thinners. He eats lunch and then can’t remember doing so. When he asks for lunch, he’s irritated to be told he just ate. This type of memory loss makes it difficult for the patient to properly evaluate situations.
2. Memory problems that interfere with the tasks of daily life. An assessment system used by medical professionals calls such tasks instrumental activities of daily living. They are simply what you need to be able to do to live independently as an adult: manage money, pay bills, shop for groceries, cook, and do the laundry, among other things. These are measures of so-called executive function and can be the first signs that something is wrong.
Someone who has reached this point will probably sound okay socially but not be able to function independently. That person has lost the ability to determine risk and to reason through abstract choices. He or she can be at risk from unscrupulous people who offer to take care of everything. With lower risk assessment skills, the elder is more likely to go along with plans that put personal finances at risk.
People with dementia lose control of their daily routines or the instrumental activities of daily living: missing appointments, leaving bills unpaid, not taking medications, not going out to get groceries, or not washing clothes. They become unable to manage routine tasks: balancing a checkbook, cleaning house, preparing a meal, or driving along familiar routes.
The ability to perform the activities of daily living, such as dressing, bathing, grooming, toileting, and, finally, even feeding oneself, declines as the disease progresses. The person often doesn’t recognize the need for help.
3. Altered social behavior or personality. A shy person becomes promiscuous. An affectionate spouse becomes hostile. A trusting parent turns paranoid. Dementia makes it difficult to pick up on the social cues that we all rely on to interact with others.
Most people don’t understand that dementia is extremely variable. It’s not just forgetting; it takes many forms. That’s because damage to different parts of the brain causes different sorts of behavior problems. Addressing behavioral problems is one of the central challenges of successfully managing dementia.
To understand how best to treat dementia, we need to understand how the brain works.
What Causes Dementia?
In the simplest terms, dementia occurs when the brain is damaged. This damage may stem from any number of causes: traumatic injury, small strokes, alcohol or drug abuse, or plaques (gummy lesions of protein that build up in the brain and block nerve connections). Whatever the cause, how the problem affects behavior depends on how extensive the damage is. It also depends on where the damage has occurred.
A Quick Map of the Brain
To understand your loved one’s particular dementia, here’s a basic outline of which brain structures do what.
• The hippocampus, with one lobe on each side of the brain, controls short-term memory. People with damage to this part of the brain may have a detailed memory of a football game thirty years ago but not something you told them in the last five minutes. They may ask the same questions over and over.
• The temporal lobes, one behind each temple, and the frontal lobe, behind the forehead, govern emotion, reasoning and social inhibition. People with damage in these areas may start acting inappropriately. They can be quick to anger over a little thing. They may burst into tears at the drop of a hat. They may have lost control of their impulses: They may eat to excess. They may grab someone they find attractive or misinterpret the actions of the young caregiver assisting with bathing as something they remember that had to do with their spouse and romance. They may decide on a whim to sell all of their possessions. This is where risk assessment and judgment reside, and they are often the first functions to go when dementia develops.
• The parietal lobe, at the upper back of the brain, helps with sequencing—that is, which things go first, second, and so on. People with damage to this area have trouble remembering how to put things in order. They struggle to work their way through a multistep process. They may put their underwear on after their pants. Or they may sit down to dinner but then not know what to do at the table.
• The occipital lobe, at the lower back of the brain, controls vision and balance. People with damage here have difficulty balancing, seeing, and reading. They may have trouble seeing in three dimensions. They may have a hard time sensing how far away something is or how deep a body of water is. They may perceive a black mat on the floor as a giant chasm. They may not eat because they can’t determine where their food is, or they may not drink because they can’t tell the color of the cup from the surrounding table. Oddly, their vision may test normal. They see objects clearly, but their brains aren’t processing the information correctly. Glasses can’t correct their vision problems because the trouble lies in the brain, not the eyes.
Dementia Comes in Many Forms
Dementia isn’t just caused by Alzheimer’s disease, though Alzheimer’s is the most common and the best-known cause. There are many types of dementia, each with a different cause and subtle variations in symptoms. They each progress in very different ways.
• Alzheimer’s disease. About 70 percent of those diagnosed with dementia suffer from Alzheimer’s. The disease begins when amyloid proteins start to stick together, forming plaques between brain cells. These plaques appear to prevent the cells from signaling each other. Other proteins form tangles, or “fibrils,” within brain cells. These tangles destroy the structure of nerve cells in the brain and eventually lead to their demise. As the patient loses more and more brain cells, his or her mental abilities begin to falter.
People with Alzheimer’s usually start to show symptoms and then begin a smooth, gradual decline until death. Once diagnosed, survival is typically four years for men and seven for women, though there have been cases as short as two years and as long as fifteen years.
In the beginning, the person becomes forgetful. He’ll show personality changes, becoming more irritable, less empathetic, apathetic, or more anxious. Often, the loss of memory prompts those with Alzheimer’s to become suspicious and paranoid. They lose the ability to perform routine tasks, like driving safely, cooking, using the telephone, or managing finances. Later in the course of the disease, they lose the ability to dress and to use the bathroom. In the terminal stage, they lose the capacity to eat and swallow.
• Vascular dementia. We’ve all learned to watch out for catastrophic strokes—blockages or bleeding in a significant blood vessel in the brain that can kill or severely damage a person’s motor skills or mental abilities. But it’s also very common for elders to have tiny “micro-strokes” involving blockage of smaller blood vessels, known as white matter ischemia.
The brain is made of gray matter, which are the nerve cells on the surface, and white matter, which are the nerve fibers found deeper in the brain that connect the nerve cells. White matter ischemia leads to little scars that damage the ability of the brain to work in various areas.
These white-matter ischemic changes are so common that doctors often consider them just a normal part of aging. Yet these strokes can cause very real changes in personality and mental function. Gradually, as more and more of these little strokes occur, parts of the brain begin to falter. This sort of dementia occurs in about 30 percent of people with dementia and may combine with Alzheimer’s.
Vascular dementia randomly takes out bits and pieces of a person’s ability to function, making it tricky to diagnose and to treat. A patient may still operate at a very high level in some areas but have debilitating “blind spots” in others. For instance, a patient may be able to play a complex card game like bridge yet be unable to remember to pay bills regularly.
A stepwise decline is the hallmark of this form of dementia. Vascular dementia progresses as a series of sudden decreases in function, such as abruptly losing the ability to sign one’s name on a check or forgetting the name of the caregiver as the only sign of a stroke event. Some patients may be stable for months and decline in a stepwise fashion, slowly or quickly.
• Alcoholic dementia. Alcohol abuse causes brain deterioration that may eventually become dementia. Elders are much more sensitive to the effects of drinking, in part because they metabolize alcohol more slowly than younger people. Even one cocktail a day may render an older person at higher risk for dementia and decline. More than two drinks a day can result in chaos.
This sort of dementia can cause “dense” amnesia—a complete, or near-complete, loss of memory. In an alcoholic, other kinds of dementia, or any kind of mental illness, can’t be diagnosed until the patient has been dry for six months. If the patient stops drinking, he or she can often regain some, but not all, lost mental function. Wernicke-Korsakoff syndrome is more common in alcoholic dementia and leads to confabulation (making stuff up), which might sound reasonable until you find out the real story. The biggest challenge is that once the brain damage leads to loss of judgment and disinhibition, there is no regulator on how much alcohol (or any other drug) is ingested until the person is managed in a controlled setting.
• Lewy body dementia. Abnormal protein deposits inside nerve cells, called Lewy bodies, are a common type of progressive dementia. These tau proteins scar brain function. The condition is also seen in Parkinson’s disease, which is often marked by tremors, rigid muscles, and slowed movement.
One hallmark of this form of dementia is early-onset visual hallucinations—seeing everything from abstract shapes to departed loved ones. Disorders of REM sleep are also a hallmark. Most people are immobile when having dreams, but those with Lewy body dementia (LBD) often act out their dreams, kicking and hitting a bed partner. In addition to early onset visual hallucinations, LBD can also cause dramatic mood swings, from clear and sunny one day to delusional the next.
Unfortunately, medicines used to treat Parkinson’s disease (drugs such as Sinemet (carbidopa, levodopa) that prompt the brain to produce dopamine (which regulates movement and mood) often worsen the paranoia, delusions, and hallucinations. As the disease progresses, the use of Sinemet may lead to more paranoia and delusions and a shorter period of improved movement. The doctor must attempt the delicate balance of enough Parkinson’s disease medications to allow movement, but not so much that the person becomes paranoid, delusional, and angry. Progression of Parkinson’s disease leads to stiffness, immobility, and finally loss of the ability to swallow.
• Frontal dementia. This dementia attacks the frontal lobes of the brain, the parts immediately behind the forehead that govern emotion, reasoning, social behavior, and impulse control. Patients with frontal dementia may seem to function normally. If asked by a doctor assessing their orientation, they can tell the date, time, and place. But they may also show incredibly inappropriate or unwise judgment. They may grope a caregiver who is trying to bathe them. They may give away tens of thousands of dollars they can’t afford to lose to charities or swindlers. They may lose their speech or become obsessed with small details, to the exclusion of allowing daily care.
These patients run a high risk of financial harm. Because they can appear as socially normal, family and financial advisers may be slow to intervene in financial decisions. This leaves the field wide open for those who would take advantage.
• Reversible dementia. In rare cases, low levels of thyroid-stimulating hormone (TSH), vitamin B12, or the nutrient folate can produce dementia-like symptoms. Correcting the deficiency can improve the condition. People who go for years without treatment for the venereal disease syphilis can also experience dementia. In these cases, treating the syphilis may improve the dementia, although it won’t reverse the nerve damage. And, of course, the misuse of medications can make the elder look like he has dementia; a geriatrician can review the medications and indicate which medications are likely to cause problems for elders (see the Beers List). The most commonly misused medications are the antianxiety pills or sleeping pills: alprazolam (Xanax), lorazepam (Ativan), clonazepam (Klonopin), zolpidem (Ambien), or Tylenol PM (acetaminophen with diphenhydramine [Benadryl]). Anxiety pills must be tapered slowly, and the tapering often results in the elder looking more agitated from the withdrawal of the meds, not from the brain dysfunction itself.
“But I Don’t Have Alzheimer’s!”
Kevin, a retired architect, age eighty-five, has started shoplifting and bingeing on alcohol. Once shy, he has become hypersexual, groping women and sneaking into their rooms at his retirement community.
Kevin doesn’t have Alzheimer’s. He has frontal dementia, which causes damage to the frontal lobes of the brain, where we reason or make decisions. Such patients may be able to recognize neighbors and loved ones and can superficially sound okay socially, but they have serious lapses in judgment. They have lost the ability to determine risk and to reason about abstract choices. This kind of dementia usually results in serious impulse control problems. For Kevin, these changes have become so severe that he has problems managing his life. His behavior creates an uproar at his residence.
At a court hearing to consider placing him under conservatorship, Kevin stands up and says articulately, “I don’t have Alzheimer’s!” When most people think of dementia, they assume that an impaired person won’t be able to recognize relatives or to carry on a conversation. But patients with frontal dementia can appear to be completely normal in brief social situations, like doctors’ appointments (his doctor gave him a prescription of sildenafil [Viagra] recently upon request). This can mask acute deficits in abstract thinking such as the capacity to make complex financial or medical decisions.
The court declines to take action. Three or four months pass before Kevin gets appropriate legal protection. During that time, he is at risk of physical and financial abuse. His buddies may have figured out that he can’t keep score for a round of golf, yet he retains control of his $600,000 retirement fund. If contacted by dishonest strangers or family members, he may give them large amounts of money for trivial services. It would be wonderful if this sort of abuse was uncommon, but in my experience, it happens every day.
Take a Deep Breath
All of this may sound very complicated and intimidating. Think of this chapter as your basic road map, “Dementia 101.” Go back to sections as you need to do so. And don’t be afraid to ask more questions of the professionals who are helping you through this. With some information and context and perspective, I promise you that you and your family can navigate this challenging time.