Coping with Dementia: A Caregiver’s Guide

Coping With Dementia: A Caregiver’s Guide

BLOGGERS: MARY A. LANGUIRAND, PHD

ROBERT F. BORNSTEIN, PHD

Many people who have experienced a loved one’s dementia have said that given the choice, they’d rather deal with almost any other ailment, no matter how painful or debilitating.  Medical science has gotten 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 replaced via transplant.  However, there’s almost nothing we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away.  Some recent experimental drugs hold promise, but at this point most of those medications are just that: experimental.  And few experiences are as frustrating as watching a once-vibrant, intelligent, witty person deteriorate into a confused stranger.

There are numerous forms of dementia, and great differences from person to person in how dementia symptoms are expressed.  However, all forms of dementia have certain common features.  These include:

• loss of memory and impairment in reasoning abilities
• changes in the ability to produce and/or understand verbal, written, and symbolic language
• deterioration in everyday 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 microwave.  Some people acknowledge their problems openly and voice frustration, fear, or embarrassment about them.  While this response may provoke worry in you, it’s actually pretty adaptive: It’s an opportunity to discuss the problems openly, and work on ways to address them.

Things get trickier when your loved one goes to great lengths to hide or deny their difficulties.  They may offer 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!  It’s not there—somebody must have taken it!”

At first you will probably respond with problem-solving suggestions and helpful gestures, arranging eye appointments, buying new remotes, and so forth.  You’ll eventually find that most of these efforts don’t actually solve the problems (even if they help temporarily).  Worse, over time your efforts may be met with angry rejection, recriminations, or even abuse: Dementia is frightening to the person who has it (even if they deny it), and they’re likely to lash out at the nearest moving target.  That’s you.

You may both get pretty frustrated and angry with one another during this period, and the relationship may become quite fraught.  You feel that you are always encountering an angry, frightened, edgy person who is quick to attack you for their problems.  The care-receiver feels that they’re being patronized, marginalized, or discounted.

As the disease progresses, the capacity for realizing that there are problems fades, and the person with dementia becomes less aware of her behavior and 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 favorite 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 may be preserved pretty well—they may be able to knit with great skill, 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 as indisputable fact.  When the story is reasonably accurate and presents all the players in a favorable light, it can be a pretty good construct (so leave it alone).  Problems arise when significant distortions or hard-to-hear criticisms of yourself or those you love get incorporated into the narrative.  Hearing one parent criticize the other, or advise new acquaintances that your spouse 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.  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 better than others.

First, remain calm. Answering the same question 20 times in one afternoon or hearing your loved one recite a totally skewed account of events for the hundredth time can make you want to scream.  Losing your cool helps nobody.  Your loved one did not develop dementia in order to annoy you, they’re not doing it on purpose, and they can’t help it.  So change the subject.  Suggest that you go out on the patio and look at the flowers.  Take a break.  If all else fails, leave—do something that will help you regain control.  Take a walk, grab a cup or tea, call a friend, pray.

Distraction sometimes works. Some realities will not change however much you discuss 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 sometimes pay off.  “Why can’t I go home with you tonight?”  can be countered with “They’re going to be 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, buy her a phone with bigger numbers.  When she complains that there are ‘too many numbers to dial,’ program the speed dial function, and leave a note explaining how to use it.  However, when she complains that she can’t actually reach anybody on the phone in spite of all these efforts, what are you supposed to do?  That one’s a trap, so 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.

Here’s a key one: Try to acknowledge feeling, 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 well, and can probably make a pretty good guess about the feelings associated with many of the things she says.  In this area the research findings are clear: Addressing the underlying feeling is more effective than arguing the logic.

That’s our best advice, but we’d like to hear from you as well.  What are your experiences in coping with a loved one’s dementia.  What has worked for you?

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press (2009). Here’s the link: http://www.newmarketpress.com/title.asp?id=901

To find out more about Robert Bornstein, click his photo.

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Coping with Stress in Troubling Times

Coping with Stress in Troubling Times

BLOGGER: ROBERT BORNSTEIN

I teach at a University–in many ways a dream job–and now I’m on break.  Classes don’t start until next week.  You’d think I’d be relaxed, right?  No students, no meetings, no worries.  So why am I here in the office at 6AM?  Trust me–relaxed is what I’m not.  The thing is, break or not, deadlines loom.  Emails pour in.  There are syllabi to be made.

Stress.

Apparently I’m not alone: It seems everyone I talk to lately is stressed as well.  The economy, the housing market–just turn on the evening news.  We can’t avoid stress…it’s a part of life.  But over the years I’ve found some ways to cope that work for me, and they might work for you too.

The place to start is to understand stress–to know what it is, and just as important, what it isn’t.

Everyone experiences stress–that uncomfortable, pressured feeling you get when overwhelmed by life’s challenges.  Studies indicate that almost every one of us reports feeling stressed at one time or another, and nearly 60% of American adults say stress has had a negative impact on their life.  We’re all vulnerable.

We know when we’re stressed–we can feel it–but what exactly is stress, and how does it affect us?  How does stress impact mind and body?

First it’s important to recognize that stress doesn’t happen to us, it happens within us: It is the body’s attempt to cope with a challenge–the body’s way of mobilizing to confront a threat.  Back in high school you probably remember your bio teacher telling you about the “fight or flight” response…nature’s way of gearing us up for action.  That’s what stress is–the old fight or flight response.  When this response happens once, or a few times, it’s no problem.  The problem comes when you experience stress too frequently.  Too many fight or flight responses in succession wear you down, deplete your body’s resources, sap your energy, and lower your mood and motivation.

Here’s why: each time you mobilize to confront a threat, your sympathetic nervous system–the part of your nervous system that activates you for action–kicks into high gear.  Your pupils dilate and your heart begins to race.  You sweat a bit–your palms get moist.  Blood flows to your brain so you can make quick decisions.  You’re ready to rumble.

Keep in mind–and here’s the problem–the stress response is nature’s way of helping you confront an intruder or run from a tiger, but now, eons later, the same response occurs when you miss the bus, lose your keys, or manage to jam the copier at work.  This same fight or flight response occurs when your 401K takes a tumble.  But in these situations there’s nothing to do: no fighting, no running.  So your body is stuck…you just have to let the situation pass, wait for your heart to stop racing, and try to get back to your routine.

Easier said than done.  Those repeated stress reactions sap the body’s energy–you literally wear yourself out.  They cause the body to release hormones that can lead to depression.  And over time these stress hormones interfere with your immune system–they cause white blood cells to fight off infections less well.  No wonder we get sick during high-stress times: it’s not just your imagination, it really does happen.

So stress is not something to be taken lightly, but it’s a topic that researchers have focused on quite a bit in recent years, so we have a good sense now of what works–and what doesn’t.  Four strategies are particularly helpful when stress begins to wear you down.

• Aerobic exercise The findings are clear: Aerobic exercise is the single best thing we can do to cope with stress in our lives.  Not only does exercise help you feel better and give you a feeling of accomplishment and control, but aerobic exercise also releases hormones that counter stress’s negative effects.  Even a modest amount of exercise–a 20 minute walk, for example–can have lasting positive effects.

• Distraction It’s not as good as exercise, but for some people distraction really helps.  Especially if your stressor is something chronic–like caring for an ill or aging parent–a bit of time off can do a world of good.  And here it’s important to do something engaging–see a movie, for example, or play bridge with friends–so you can focus on something other than what’s bothering you.

• Unburdening Freud was right: Unburdening ourselves of troubling thoughts really is a healthy thing to do.  So try not to bottle up your feelings, but find a trusted friend and let her know what’s going on.  Email your old college roommate and tell him what a jerk your boss has been.  Studies show that disclosing negative thoughts and releasing pent-up emotions strengthens the body’s ability to cope, and enhances the immune system.

• Social support Your parents might have taught you that independence is a virtue–but not always.  Being stoic in the face of stress is not the best way to cope…it’s better to seek out the company of others and spend some time with friends.  Social support offers the comfort of closeness, and an opportunity for friends to offer advice and reassurance.  The opposite is also true: Offering support to others actually helps reduce your own stress levels as well.

How to choose among these strategies?  The good news is you don’t have to: research indicates they can be used in combination and when you use them this way their benefits are even greater.  So choose the strategies that seem right for you given the challenges you face and your particular style of coping…you know yourself best.  If exercise is helpful, and clears your mind of troubling thoughts, terrific–you’re all set.  If you’re more of a people person then social support and the opportunity to share the burden might be the way to go.

Whatever strategies you choose, be flexible–if something’s not working, try another approach.  And remember, managing stress is a process–it takes time, and it’s never really complete.  New challenges confront us every day–that’s life–so you’ll always be findings new ways to cope, and new ways to turn life’s challenges into opportunities for growth and positive change.

Now it’s time for me to get back to work.  There are syllabi to be made…

To find out more about Dr. Bornstein, click here to read his bio.

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