Aggressive vs. Palliative Treatment: End of Life Issues

The New York Times 2007 article, Treating Dementia, but Overlooking Its Physical Toll, talks about how many of our loved ones, towards the end of their lives, are subjected to unnecessary life prolonging treatments such as dialysis and colonoscopies. Author Tara Parker-Pope says this is because so few recognize dementia as a physical, as well as mental disease.  Fast forward to 2012. Parker-Pope's article is still relevant. People, including those in the medical community, still have trouble accepting that end-of-life needs are different. These treatments have their place when we are younger, healthier. With an eye towards a better future, most of us are willing to put up with some discomfort and inconvenience, even surgery.

But this changes when the end of life is near. Then, quality of life becomes more important than a little more time. This is especially a concern with LBD, which causes so many physical problems in addition to the dementia. There comes a time when treatment for something such as kidney failure will make little difference—except to decrease the quality of one’s final days.  Our LBD folks are also especially sensitive to stress. These treatments will almost always add stress of some sort—which increases LBD symptoms—and probably increase the progress of LBD as well. Who’s to say whether these treatments really extend life at all, when this is taken into consideration?

A common example of “aggressive treatment” is the use of feeding tubes with an end-of-life dementia patient. Dementia is a debilitating disease. As the brain dies, so does the body—and its need for nourishment. Not only can the tube be an unnecessary torture, but the food, going into a system no longer capable of processing it, adds to the discomfort.  (Think about what it’s like for you when you feel very constipated.)

It’s not just the treatments. It can also be a state of mind. Carrie is a good example. Early in the LBD journey with her mother, she learned to aggressively push anything that might delay the dementia.  She searched the internet for the newest ideas and treatments. She pushed her mother to get out and socialize, to move and exercise, to drink enough fluids, to eat enough of the right foods, and on and on. The experts tell us all of this will help the dementia progresses more slowly.  Carrie wanted the best for her mother and so it bacome a habit—a way of life.

 But dementia DOES progress, and no matter how she tried, the time did eventually come when their journey with LBD is almost over. Accepting this was seldom easy. She didn’t want to lose this person she held so dearly. Of course, she didn’t—but it is no longer her choice. Her mother had moved into a different space with different needs now. At first, Carrie felt as though she was failing. Maybe she just needed to work harder, push a little more. The failure would have been if she hadn’t been able to move past her own needs and see that it was time to change her goals, her behaviors and her expectations to support her mother’s end-of-life need for peace and comfort.

Now is the time to relax. Carrie‘s aggressively proactive approach, once so helpful, was no longer supportive of her mother’s needs. Now is the time to sit and talk and laugh and touch and just be there. Daytime sleeping, once such a concern, is no longer something to worry about; 20 hours out of 24 is not unusual at this stage.  She may also need to take a stand against medical personnel who have been trained that they must work to extend life, no matter what the cost.  The good news is that with palliative treatment, there’s less stress and thus, reduced LBD symptoms—and maybe a longer life. 

References: Tara Parker-Pope’s Well blog and article.

Also:  A Caregiver’s Guide to Lewy Body Dementia, Chapter 14
Website: LBDtools.com

Using Behavior Management to Deal with Acting-Out

 In our March 2^nd blog, we talked about how LBD damages a person’s ability to control their behavior and how action follows closely behind feeling. Therefore, it is actually the caregiver’s behavior, and perhaps even more importantly, the caregiver's attitude, that must be managed/changed to decrease LBD related acting out. Here are some things you can do:

Take your time. Dementia slows everything down and it can be stressful to try to keep up.  Talk a little slower and give your loved one lots of time to answer. It might help to silently and slowly count to ten before expecting an answer. When helping your loved one bath or eat or anything else, don’t rush even if you are feeling time pressures. It really won’t take that much longer because your loved one will be more able to cooperate.

Practice feeling calm. As communication skills decrease, perceptions increase. Lewy folks pick up on tensions easily. However, their interpretation skills are flawed. They may identify hidden anger at a situation, for instance, as a rejection of them—and act out. And so, work on feeling (not just acting) relaxed when you are around your loved one. It helps them to stay calmer too.

 Have reasonable expectations. Don’t expect more than your loved one can give. As Lewy takes away their abilities, it becomes hurtful to challenge them to “do better,” or “try harder” or to remind they how easy a task “used to be.” And when Lewy folks feel hurt, or when they feel they've let you down,  they act out.....

 “It’s the disease talking, not my loved one. It’s Lewy, not…..” Make this your mantra. It will help you to ignore Lewy’s hurtful behavior and you will find it easier to maintain a loving, caring attitude.

And finally, use touch and an affectionate tone of voice. These elicit positive feelings and decreases acting out. Dementia does not take away the enjoyment of loving behaviors. A hug, a gentle pat, a soft, loving tone all decrease stress and thus, acting out.

Do you have any suggestions that have worked for you?

The Importance of Environment

It’s been a while since we posted anything. Sorry—busy with other stuff—holidays, family, etc.  After all we ARE retired! But we are back. Dealing with acting-out seems to be a major topic of concern, and rightfully so. Since behavior management drugs can be so dangerous for our LBD folks, our focus is in identifying ways to do this with fewer or no drugs.

Acting out is the behavior your loved one uses to communicate feelings of anxiety, stress, fear or pain. If you can identify the trigger of the feeling, you are on your way to decreasing the behavior. For instance, if it is a certain time of day, what is he usually doing then? Can you make that less stressful?

LBD limits your loved one’s ability to do executive tasks like think, learn or make decisions. Thus, anything that requires an attempt to do these tasks will increase anxiety. (Just think about what it's like when you try to do something you can't figure out how to do, especially if it is something you think you should be able to.)  In addition, LBDers are supersensitive to intense physical stimuli such as light, noise, heat, cold, etc. Their bodies just don’t adapt well anymore.  Here are some things you can manage in your environment: 

Clutter: A room filled with clutter gives your loved one too many choices of where to direct their attention.  Put away all but a few items.

Light:  Besides the general sensitivity to strong stimuli, LBD folks are especially sensitive to light. Make sure your rooms are lighted in a soft, non-glaring light. Avoid sun-glare. Keep your LBDer shaded when you go outside.

Noise: Make sure TVs and other types of noise stay at tolerable levels.  Use softer tones yourself and teach others to do so around your loved one.

Media: LBD takes away the ability to separate reality from make-believe. For example, if the police are chasing the bad guy, you loved one may join in the chase—or feel chased. Monitor all media and replace exciting, scary shows with something more calming.

Choices:  Offer no more than two. Yes or no, here or there, the chair or the sofa, etc.

People: Try to avoid crowds; they bring too much stimuli and require too many choices. For instance, the murmur of several different people talking at the same time at a party or even a small family gathering can feel overpowering.

Replacement items:  New items are no longer fun—they require learning. Try to duplicate a worn out sweater instead of buying one of a different color or style. Buy the same kind of underwear. 

Watch for future entries where we'll talk about more ways to decrease acting out.

The Three Stages of Dementia, including LBD

This week, we attended the Arizona Alzheimer’s Consortium Annual Conference and learned that researchers now define dementia with three major stages, not just two:

o Dementia, which has long been recognized as the time when cognitive abilities are so impaired that one can no long manage one’s own life.

o Mild Cognitive Impairment. This is when one’s memory (or thinking for our LBD loved ones) is impaired but a person can still function fairly well in their daily life. MCI has also been recognized for several years.

o Asymptomatic Dementia. This is a new step just added by researchers. It is where there are no cognitive symptoms but the brain is showing definite changes. The hope is that if such pre-symptomatic patients can be identified, then treatment and prevention may be easier. This makes sense. We all know it is easier to treat a disease before it becomes full blown and out of control.

This information certainly applies to LBD. In fact, people who are at risk for LBD are much easier to identify than those at risk for AD. That’s because several of LBD’s many non-cognitive symptoms often show up earlier in life. Two prime examples of this are Parkinson’s disease and REM Sleep Behavior Disorder (RBD).

Of course, the problem is that so far, treatments are only symptomatic. They help, but they don’t cure. And so we continually hope that our researchers will find a better answer. That’s why it is so important to support clinical trials, donate brains and give money to those groups that support dementia research.