Don’t Just Blame Dementia

Don’t Just Blame Dementia

BLOGGER: Michael B. Friedman, LMSW

After a person has been diagnosed with Alzheimer’s disease or other dementia, subsequent emotional, mental, cognitive, and behavioral problems are usually blamed on the disease.  Other possible reasons including behavioral disorders such as depression, anxiety, or substance abuse or ordinary human reactions to tough realities are very often ignored.

“Grandma seems terribly sad.”
“  Of course, she has Alzheimer’s”
“Grandpa has been nasty lately“.
“It’s the Alzheimer’s.
“  Uncle John doesn’t enjoy life anymore.”
“  Who would?  He has dementia.”
“  Mom isn’t eating much or isn’t taking her pills or isn’t getting any exercise.”
“It must be the Alzheimer’s”.

Not necessarily.  In fact, blaming dementia very often gets in the way of understanding what is really going on and doing something about it that will help.

If there were a pill that would reverse, stop, or — better yet — cure Alzheimer’s, it might be useful to understand the emotional and behavioral problems of people with dementia solely in terms of the disease.  But the best pills available now only delay the unavoidable decline in memory and other cognitive functions.  That’s worth doing, of course, for the people for whom the pills work.  But counting on the doctor to come up with medicine that will make a big difference usually is disappointing.

People with dementia experience many of the same emotions as people without dementia, but they are at higher risk than older adults without dementia for diagnosable mood and anxiety disorders, both of which can result in declines in cognitive functioning that are similar to the decline associated with dementia.

Unlike dementia, however, depression and anxiety can be treated effectively; and if they are, the loss of cognitive functioning that is caused by these disorders can be reversed.  To be clear, treating depression and/or anxiety does not reverse dementia and the loss of cognitive functioning caused by dementia.  But effective treatment for mood or anxiety disorders can result in overall improvement of functioning that can make a very big difference in a person’s life.

These days, of course, the first line of response to depression and anxiety is medication.  However wise that is for people without dementia, it is unwise for those with dementia.  Medication can be helpful, but it can also be dangerous.  At the very least, doses must usually be lower than for younger adults.

Better is to begin with interventions that do not rely on medications.  Some formal psychotherapies can be helpful, such as “cognitive-behavior” and “interpersonal” therapy.  Exercise, interesting activities, and social contact with people they enjoy can also be extremely helpful.

Most important is to understand (1) that people with dementia are adults with meaningful life histories, personal interests, individual desires, and a need for dignity and respect and (2) that behavioral “problems” are to a significant extent in the eye of the beholder.  People with greater understanding and tolerance of behavior, that most people find trying, are generally better able to help people with dementia to get the most out of life.

I don’t mean to make this sound easy.  Some people with dementia are so profoundly sad and lost in themselves that they may be impossible to reach.  Some people are “scared to death” by the slightest change in routine.  Some people completely deny that they have any need for help.  Some people are abusive towards anyone who tries to help them, evoking responses in kind from many — if not most — of us.

But many people could be helped to overcome emotional problems that co-occur with, but are not caused by, dementia.

In an ideal world everyone with dementia would be able to get a sophisticated assessment to distinguish between the effects of dementia and other disorders and then to get the treatment that would be most likely to be effective.  But in the real world there is a terrible shortage of physicians who understand the subtle differences between dementia and depression and other disorders.  In the real world there is a terrible shortage of geriatric psychiatrists and other mental health professionals.  And in the real world, paid and family caregivers usually do not get training and support to help them be more skillful with and tolerant of the people they care for.

Our nation needs major changes in policy to address these shortfalls.  In the meantime, however, we need to understand that there are ordinary emotional causes for the sadness, disengagement, and anger experienced by so many people with dementia and that we caregivers can do much to meet human needs often neglected because of a frightening diagnosis.

Grandma is sad?  Grandpa is nasty?  Maybe they are clinically depressed and could benefit from treatment.  Maybe she’s lonely and he feels he’s being treated like a child.  Maybe it’s something else.  But be careful not to jump to the conclusion that it’s because of the dementia.

 

Grouchy Guy: Anxiety in Married Men

Grouchy Guy: Anxiety in Married Men

BLOGGER:  LAWRENCE JOSEPHS, PHD

There is one source of resentment that married men often suffer that isn’t a wife’s “fault” but for which women often get unfairly blamed anyhow. Men strongly feel that how successful they are is a measure of their masculinity. Especially, when men marry and have children they feel a responsibility to be a good provider and the better they are at that job the better they feel about themselves. If men aren’t as successful as they feel they should be, they begin to feel like a “loser” and get depressed. Men may defend against their underlying depression and shameful feelings of inferiority by getting angry, especially at their romantic partners.

Why do men get angry at their partners when they don’t feel as successful at their jobs or in their careers as they feel they should be, after all it’s not the woman’s fault?

Yet in a man’s unconscious mind it is the woman’s fault. He feels that she expects a certain level of success from him, that providing at a certain level is his responsibility and his duty. In his mind, if it weren’t for her implicit expectations, he wouldn’t have to enter the rat race and get beat up in the effort to make a living. One reason many men avoid marriage and family is that they don’t want to be tied down with responsibilities they worry they might be unable to fulfill. Or men wait until they are as advanced and as secure in their careers as they can possibly be before settling down with marriage and children even if it means waiting until they are forty or even fifty to get close to the top of their income earning potential.

Women sometimes have a hard time understanding how men feel about this issue. Women may feel that as long as you have got your family and enough money to get by, they don’t understand what the big deal is. But for men it’s as much about their manly pride as about the practicality of getting by. For most women, the family is their central source of meaning and of self-esteem and if the family is OK then all is well in the world. For most men, that isn’t enough. Their manly pride requires a certain level of prestige, social status, and success, mostly reflected in how much money they make. This is not to say that some women aren’t as status oriented as men and that some women do make their men feel like “losers” if they don’t make enough money. But I have noticed over the years, that this issue often isn’t as big a deal for most women as it is for most men. As a consequence, many women don’t really get or understand the way men feel about this issue and that lack of understanding just makes men all the more resentful.

Women can give men all the reassurance in the world that in their eyes their men are a great success, that they are happy with their level of affluence, and that they don’t mind that much having to work to help support the family, but deep down men don’t really believe it. Men worry that it’s all a bunch of false reassurances that in fact makes them all the more resentful. It’s almost like men are a bit paranoid on this issue. It’s like men secretly suspect that all women are “gold diggers” who only want men for their money and secretly have contempt for a man who can’t bring home the bacon to support them and their children in a grand way. And in men’s minds there is always a constant and ongoing social comparison with other men and how well other men are doing which they assume women are making as well even if they don’t say so openly.

So what is a woman to do to deal with this sort of male paranoia if everyday reassurance feels patronizing and condescending to your typical male with an ego bruised by the fact that he hasn’t lived up to his own high ambitions for himself. Once again, humor might be the only real antidote. But how do you kid around about such a touchy issue, that your boyfriend or husband feels like an unlovable loser no matter how much you reassure him. Well, first of all when ever he acts like a grouchy guy and snaps at you for some trivial or stupid little thing, you could just snap right back: “Don’t take your frustrations out on me, don’t be a sore loser just because things aren’t going so well at work. Suck it up, take it like a man.” Or “We all have to eat to shit at work sometimes so stop complaining. Look at all of your shit I have to put up with. Why do you think you should be able to go through life and never have to eat shit just to bring home a paycheck for your family? And I do appreciate all the shit you have had to eat over the years to support our family and some of it may have even been my own cooking.”

Though women tend to be skeptical, men are more likely to respond positively to this sort of blunt and crude language than more sensitive and lovingly reassuring language which is felt as infantilizing. In men’s mind, if you have to comfort them the way you would comfort a baby, you definitely must think they are the biggest loser in the whole world. You are emasculating them by treating them like a hurt little boy rather than respecting their masculinity by encouraging them to face a harsh reality like a man and stop whining about it. They need to be encouraged not to take themselves so seriously and to lighten up.

If you stubbornly insist on treating your man in a lovingly reassuring way you will probably just antagonize him and he will probably push you away for making him feel like a big baby. Then you will be feeling hurt that your love and sympathy has been rejected and you will probably get into a big fight about it. I appreciate that it might not feel natural to talk to your man in the way I am suggesting and you might resent a suggestion that requires you to do something that at least initially feels uncomfortable, but try a little experiment and if it works what have you got to lose.

To find out more about Dr. Josephs, click on his photo.

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Stress and the Family Post 9/11

Stress and the Family System Post 9/11

BLOGGER:  ROBERT F. BORNSTEIN

Shortly after 9/11 I got a phone call from a news organization.  Because I study stress and its effects, they wanted to know how the terrorist attacks would affect families over the long term, and how these events might disrupt the rhythm of our lives.  I said that I thought the attacks would have a negative impact on many families–even those living far from New York, DC, and Pennsylvania–leading to increases in substance abuse, domestic violence, and emergency room visits.

A year or so later the news organization called again.  I had been right, and they wanted to talk about why.  Beginning in late 2001 and continuing through much of 2002, domestic violence rates spiked nationwide.  So did substance abuse, ER visits, and (believe it or not) car accidents–including minor fender-benders.

What changed following 9/11?  Why were people so disrupted?

Part of the impact was external: It came from the uncertainty that resulted from the attacks, uncertainty stoked by the constant reminders that not matter what we did, we remained vulnerable.  (Remember those check points, endless airport security lines, and jarring threat-level announcements every evening on the news?)

Some of the impact came not from without, but from within–from the impact of 9/11 on family dynamics and interactions.

Families are like interconnected, interlocking systems, with each part of the system–each person–playing a role.  Over time families develop a kind of equilibrium, as people carve out their niche within the group, and everyone settles into their prescribed role.  One child might be the “good son”, or “good daughter”; another child takes on the role of troublemaker.  Mom might be the family organizer and rule-maker; Dad’s role becomes that of “fun parent”.

It’s not a perfect dynamic, but it works: We humans prefer predictability over uncertainty, and even if the system has its flaws (what family doesn’t), at least we know how we fit in, how others will behave, and–most important–what’s expected of us.

And therein lies the answer: Over the long term, many of the lasting negative effects of 9/11 came from disruptions in the family system, as people were forced to modify their well-practiced roles in response to a changing world.  Disrupted roles destabilized some fragile relationships; the result was an increase in domestic violence.  Everyday tasks that we used to complete without thinking became more effortful; we were distracted now, so car accidents increased.  And as always, some people coped with stress and uncertainty by overusing alcohol or drugs–“self-medicating” is the formal term.  The result: Increased substance abuse.

As I wrote in a previous ImagineAge blog, stress isn’t something that happens to us, it’s something that happens within us.  And 9/11 proved this yet again.

Let me offer another prediction–and not a happy one: These increases in substance use and domestic violence….they’re going to happen again.  This time it won’t be in response to terrorist attacks, but in reaction to economic stress and uncertainty.

Knowing these things are likely to occur doesn’t stop them from happening, but it does allow us to plan more effectively.  If you feel that you (or your family) may be stressed beyond their limits, take action.  Seek help from a professional therapist (as Mark Hilsenroth’s recent blog describes so well), and take steps to gain control of your finances–make reasoned (not panicked) decisions.  Ben Pierson’s blogs will be very helpful here.

And a year from now we’ll look back and see what happened.

What are your thoughts?

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

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Mammogram Morning

Mammogram Morning

BLOGGER:  ARIN GOLDMAN

Though October may be the official breast cancer awareness month, January is the month I have my annual mammogram.  As the daughter of a breast cancer survivor I am always nervous before my “mammo” but I have managed to control my apprehension level by following an annual routine.  On mammo morning I go for a run, shower,  resist the urge to put on deodorant, get to the radiologist’s office early and, once told  that my scans are clean, breathe a huge sigh of relief, schedule next year’s appointment and go out for something chocolate.  I had no reason to believe that last year’s routine would be any different but it was:  I flunked.

After taking the normal set of pictures, the technician came back to take another one of my left breast.  Since it is not that unusual to need a do-over or two, I was not  initially alarmed but that changed when she kept coming back for still more shots.  On the fourth take I started to hyperventilate and called for the as yet unseen radiologist who appeared to calmly explain  (just to be clear – she was calm, I was not) that the scans had located a cluster of micro-calcifications within my left breast, something that wasn’t there last year.  She explained that a micro-calcification cluster could be an early stage of breast cancer.  While she reassured me it was likely to be nothing, she said that it was important for me to have a biopsy and offered up an appointment for a stereotactic needle biopsy. Though I had little idea what that was I took the next available appointment for the following Friday, thankful that she did not think it was an emergency, but still very spooked.  When nothing else showed up on my accompanying sonogram,  I left the office clutching a piece of paper with the instructions for how to prepare for day of the biopsy, thoroughly confused by what a cluster of calcifications was and what I really should do next.

Ten years ago when my mother had needed a breast biopsy it was performed by a surgeon.   Was a radiologist the right specialist for this procedure?  I thought that I was medically savvy, but I had no idea what a stereotactic biopsy was, nor what it entailed.  I always scheduled my mammogram to take place mid-week because early on I had decided that if a problem was ever detected I would want to use one of my life lines and “call an expert” right away without any weekend interruption.  I was relieved that this year was no different and immediately called a high school friend,  a surgeon who headed up the breast cancer unit of a major medical center.   She confirmed  that times had changed with the less invasive stereotactic needle biopsy procedure replacing the scalpel for evaluation of calcifications like mine.  She also verified that this was a procedure best performed by a skilled radiologist.  Familiar with my radiologist and comfortable with her capabilities, she recommended that I go ahead with the procedure making sure to copy her on the results in case further action was required. 

Having contacted the expert, my next step was a Google search.  The ability to research medical conditions firsthand is a bit of a mixed blessing, there is a great deal of information available on the Internet but  alot of it is alarming.  Still  despite my jitters I needed to know more so I started surfing.  It did not take long to locate the information I was seeking. Individual calcifications generally do not raise much concern and frequently are just monitored closely.   However, micro-calcification clusters could be nothing at all or a stage zero or stage one form of breast cancer called ductal carcinoma in situ (DCIS).   While the term stage zero might sound pretty innocent, treatment involves both a lumpectomy and a program of radiation, not the news I wanted to hear but what I needed to know.  In terms of percentages, what the doctors had described as a highly unlikely chance of cancer was referred to on the web as a 15 to 20% probability. Thought not as much of a slamdunk as I hoped for, the odds were in my favor  that  this would  turn out to be nothing and if it was cancer my mammogram would have served its purpose by catching it at a very early, treatable stage.

On the day of the biopsy I arrived at the radiologist’s office still unsure of all the procedure entailed but anxious to get it over with.   First I was asked to lie down on a table with my breast positioned over a large hole.  A position as awkward as it sounds. A number of scans were taken to insure that I was positioned so that the targeted calcifications were accessible to the doctor. Given the location of my cluster and the modest size of my breast I had to be pan-caked into the table before the desired view was achieved and then, with the help of a few clips, I had to remain still for the next 45 minutes or so while the biopsy was completed.  The doctor had explained that this was the hardest part of the biopsy.  Awkwardly clamped to the table I found myself hoping that she had been telling the truth.  Fortunately it turned out that she was right, although very uncomfortable, there was nothing painful about the procedure itself.  After injecting my breast with a local anesthetic, a shot less painful than one at the dentist’s office, the radiologist employed a mechanically guided needle to individually remove each of the calcifications.  Once removed, a tiny tag was inserted into my breast to assist in the identification of the site in case any additional procedures were necessary.  No stitches were required; the radiologist merely covered the needle hole with a water proof bandage and  made me promise to wear a jog bra at all times for a few days for compression, to restrict my activities and to keep the wound site dry through the weekend so that there would be no bleeding or scar.  I went home, took it easy overnight, and then spent the weekend walking my dog with one arm,  replacing my usual run with time on the elliptical machine and trying hard to banish any alarming thoughts from my overactive brain.

On Monday, earlier than expected while I was in the shower examining the tiny red scar on my left breast, the doctor called with the best of all results. Everything was fine, my cluster was benign; no additional actions were required.  After the call, I dried off and got dressed, made an appointment for next year’s mammogram and went out for that much deserved chocolate anything.  One year later I am happy to report that this year’s mammogram morning went off with out a hitch.

To find out about Arin, click here to read her bio.

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