Coping with Dementia
Mary A. Languirand, PhD & Robert F. Bornstein, PhD
Many people who have experienced a loved one's dementia say that given the choice, they'd rather deal with almost any other ailment, no matter how debilitating. Medical science is pretty good at alleviating pain or restoring physical function; hearts can be made to beat properly, lost limbs can be accommodated with prosthetic devices, failed organs can be transplanted. However, there's almost nothing we can do to salvage the deterioration of memory, communication skills, reasoning, and practical abilities that dementia steals away. Few things are as frustrating as watching a once-vibrant, intelligent person deteriorate into a confused stranger.
There are numerous forms of dementia, and considerable individual differences in how it is expressed. However, all forms of dementia have certain common features, including the loss of memory and reasoning abilities, changes in the ability to produce and/or understand verbal, written, and symbolic language, and deterioration in practical skills.
In the early stages of dementia, the person usually knows that something is wrong. She may realize that she is having difficulty remembering names, balancing a checkbook, or figuring out how to use the DVD player. Some people acknowledge the problems and voice frustration, fear or embarrassment about them. While this response provokes worry, it's actually pretty adaptive, as you can discuss the problems openly, and work on ways to address them. Things get tricky when your loved one goes to great lengths to hide, deny, or avoid their difficulties, offering plausible explanations and excuses. "I read perfectly well-I just need new glasses!" "The buttons on that remote are too small!" "I know exactly where I left my bag-somebody must have taken it!"
At first you will probably respond with helpful problem-solving suggestions and gestures, arranging eye appointments, buying new remotes, etc. You will eventually find that most of these efforts don't actually solve the problems, or help only temporarily. Over time, your efforts to explain or assist may be met with angry rejection, or even abuse. "You always think you know it all!" You may both get pretty frustrated and angry with one another during this period. As the process can take years, the relationship can become very fraught, as you come to feel that you are always encountering an angry, frightened, edgy person who is quick to attack you for their problems, while they feel that they're being marginalized or discounted.
As the disease progresses, the capacity for realizing that there are problems fades, and the person with dementia becomes increasingly unaware of her own behavior, or its impact. At this point, the patient is often blessed with "pleasant confusion," especially if their environment can anticipate and meet most of their needs successfully. They may not be able to tell you who's President, name their grandchildren, or recall how to cook a meal, but as long as they can be physically comfortable, they tend to accept whatever is happening without question. Some skills and pieces of information might actually be preserved pretty well-they may be able to knit, or recite baseball statistics from games they watched 30 years ago with total accuracy. Often, they will construct a sort of "Reader's Digest" version of their life experiences and beliefs, which will be presented to all who will listen as indisputable fact. When the story is reasonably accurate and presents the players in a favorable light, it can be a pretty good construct. Problems arise when significant distortions or hard-to-hear criticisms of yourself or those you love get incorporated into the mix. Hearing one parent criticize the other, or advise new acquaintances that your spouse or child is a real loser hurts, even if there's some truth to the observation. Worse, you (and everyone else) will hear it over, and over, and over. The temptation to argue, correct, or defend may be very strong. Sadly, facts and logic usually get you nowhere.
So, what do you do? Some responses tend to work a little better than others.
Remain calm - Answering the same question 20 times in one afternoon or hearing your loved one recite a skewed account of events you'd rather forget for the hundredth time can make you want to scream. Losing your cool helps nobody. Your loved one did not develop dementia to annoy you, they're not doing it on purpose, and they can't help it. Change the subject. Suggest that you go out on the patio and look at the flowers. Take a break. If all else fails, leave, and devote the time to doing something that will help you regain control. Take a walk, grab a cup of tea, call a friend, pray.
Distraction sometimes works - Discussion of some reapties will not change them, rendering the interaction upsetting and pointless. "Re-direction" is the formal term for moving from a hot topic to something more neutral. It's harder to do than it sounds, especially with people with dementia, who can be surprisingly stubborn in their focus on a given topic. However, persistence can pay off. "Why can't I go home with you tonight?" can be countered with "They're showing your favorite movie in the dining room after dinner. Remember how great Bogart was in Casablanca?"
Keep problem-solving efforts reasonable - When Mom complains that the telephone buttons are too small, you buy her a phone with bigger numbers. When she complains that there are "too many numbers to dial," you program the speed dial function, and leave a long note explaining how to use it. When she complains that she can't actually reach anybody on the phone in spite of all these efforts, you may want to respond with a vague reply about how busy people are these days, and change the topic. You cannot "solve" dementia. Know when to quit.
Acknowledge feepng, rather than content - "I want to go home" may actually mean "I miss the way things were," "I'm frightened," "I hate being sick," or all of the above. You know your loved one pretty well, and can probably make a pretty good guess about the feepngs associated with many of the things she says. Addressing the feepng is more effective than arguing the logic.