The Whitworths of Arizona, bringing science to you in everyday language.

Friday, April 27, 2012

Assistance Dogs and Dementia

There are several ways pets, especially dogs, can be helpful with our LBD loved ones. In her article about how pets bring happiness and healing, Sue Cartledge talks about therapy dogs. These well trained animals—which can also include other pets such as cats, go with their owners to visit residents in memory care facilities.  Residents talked about how “when I held the dog, the pain in my hip went away” and there were also reports that interacting with the pets improved communication skills.

Mary Pat Baldauf tells about her father, with LBD, and his pet dog, Gizmo, on the Every Woman blog site. This little dog provided her father with unconditional love, friendship and an ever present alarm system that enhanced his final days.

But the article that really impressed me one in the Alzheimer’s Weekly about Nyja, an assistance dog. Therapy dogs are wonderful in a residential setting but don’t help the family where the loved one is still at home. And it’s the fortunate family who finds a dog, like Gizmo, who can become such a help without formal training. 

However, the Canine Companions for Independence trains Assistance dogs like Nyja to provide a multitude of services, from simple companionship to physical help like picking up something that’s been dropped to alerting the caregiver if their charge is in danger or guiding a lost owner home.

This doesn’t happen overnight and it isn’t for everyone. First, the training is similar to that for a service dog, except that it includes the dog, the person with dementia and a “facilitator”—usually the caregiver. Both patient and caregiver need to be “dog” people. The patient, because there needs to be a bond with the dog. The caregiver, because taking on the care of a pet is an added responsibility in an already full schedule. Also, training needs to start as early in the progress of the disease as possible, while the patient still has some ability to learn. Once the training is done, the benefits are many. Here are some:
  •          Decreased social isolation and improved communication skills.  Dogs are social animals and people are attracted to them—and by proximity, to their owner. 
  •          Reduced agitation. The dog’s unconditional love and acceptance tends to reduce anxiety and agitation. 
  •         Increased companionship. The patient always has a friend nearby, thus reducing loneliness.
  •          Increased physical activity. Depending on a patient’s mobility, they may be able to groom the animal, toss a ball, or even go for walks.
  •          Increased pleasure. An ever present, undemanding companion makes life more pleasant.
  •          Caregiver alert: The presence of an Assistance dog is like another pair of eyes, with an alarm system for the caregiver. The dog can warn a person in another room if their charge needs help.
  •          Increased feelings of usefulness: Chores like grooming and “being responsible” for their pet serve to make a person feel useful.
  •          Less stress: The calming presence of an accepting pet calms and decreases stress.
  •          Increased clarity, windows of memory, etc.: Due to the decreased stress!
  •          Decreased depression: Probably due to “all of the above.”
If this subject interests you, we highly recommend that you click on the links in this blog and read the other articles. And feel free to share some of your own experiences as comments!

Saturday, April 21, 2012

Nearing the End of the LBD Journey

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:
Cognition degeneration:Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time.
o   LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well.
·         Communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding. 
o   LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking.  The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.
·         Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and our book, The Caregiver’s Guide to Lewy Body Dementia.
o   LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.
·         Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.
·         General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.
o   LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore, complications like pneumonia, urinary tract infections or falls can be life threatening.  Good patient care and early detection of problems becomes very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease.
·         Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.
o   LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

Thursday, April 12, 2012

Delusions of Unfaithfulness

Of all the questions we get about LBD, this is the most difficult. We addressed the issue in our March 2nd blog, but it deserves more attention.  Mary told us, “Art accuses me of meeting other men. A half-hour trip to the grocery store is a tryst with my lover. A chat on the phone with my daughter is phone sex.” Mary’s denials only make Art more certain of her desertion. She is at her wit’s end.

As  dementia increases Art’s feelings of inadequacy, he fears that Mary will no longer view him as a desirable companion. Because Lewy has damaged Art's thinking filters, what he FEARS is what he accepts as FACT. Thus in  Art’s mind, Mary IS deserting him. The more intense the fear, the stronger the delusion.

It’s easy to say what not to do about such behavior: Don’t try to reason with your loved one. That will only cause more agitated. He/she hears your claim of innocence as a denial of their fear.

It’s less easy to say what to do. You need to find ways to:

a)      Increase your loved one’s thinking filter so he can process his emotion. If he does not jump directly from feeling to fact, it will be easier for him to accept that you are not deserting him.
Dementia drugs, such as Exelon or Aricept, are fairly safe and often help to control behavior. That is, they may improve the thinking filter and decrease his delusions. Even if your loved one’s doctor doesn’t think  cognition drugs are needed yet, you might ask if they could be started with the goal of decreasing acting-out.

b)      Lower stress. Few of us function well when we are highly stressed. However, LBD both adds stress and lowers its threshold. Acting-out (in this case, delusions) increases with stress and decreases when stress is decreased.
Chapter 9 in  A Caregiver’s Guide to Lewy Body Dementia and our March 15th blog speak to dealing with environmental and health issues to decrease stress.  Read these and use them as guides for eliminating things in your loved one’s environment that add stress.

c)      Substitute positive feelings for negative ones. The blessing of dementia is that it makes it difficult to hold two feeling/thoughts at the same time. Feelings, not thoughts or beliefs must be the target.
Perhaps the most effective intervention of all is to distract your loved one with positive feelings and happy thoughts. The stronger the happy feelings the more effective they will be. This takes some planning and preparation. Think about an event when you were having a wonderful time together—when your loved one felt secure in your love. A special vacation, your wedding, etc…. Then, gather together some props: photos, music, items with special meaning, etc.  When your loved one begins to act out, say something like, “Oh, honey, look what I found. Didn’t we look sweet in these photos?” Once you have his/her attention, start talking with the goal of increasing the happy feelings. Remembrances of happy feelings in the past will usually work better than talking about present feelings. Don’t worry if it doesn’t work the first time. This is a learning process. Next time, try again, using what worked and changing what didn’t. Your loved one likely won’t remember what you did or said anyway. It's a new event each time.

d)     Add a buffer so that his feelings aren’t so intense. Since the strength of the delusion depends on the intensity of the feeling, this may decrease or even end the acting-out.
If none of the above tactics are enough, you and your doctor may want to consider another drug, perhaps one of the more Lewy-safe anti-depressants. And, while we hate to even suggest behavior management drugs, they do have their place. Seroquel, for instance, can be quite effective with few apparent side effects. However, research has shown that dementia patients who take even second tier anti-psychotics like Seroquel risk an earlier death than those who do not take these drugs. That said, there may come a time when you choose to balance quality of life against length of life.

e)      Consider residential care. If safety or extreme caregiver stress becomes an issue, this may be the best, if unwelcome, answer.
This is a step that few caregivers want to take, especially while their loved one is physically able. However, with Lewy body disorders, acting-out behaviors sometimes start before other symptoms and advance to being too difficult to handle at home before the physical load does. Sometimes, even when all of the above steps have been tried, the acting out will continue. At such times, caregivers must recognize that anything that puts them at risk also puts their loved one at risk. Thus, if they become so stressed out that they cannot function well or if their loved one’s acting out becomes physically dangerous, placement in a Lewy-savvy residential facility may be the answer.  Caregivers who have fought this step but finally made it, often say, “I’m a better caregiver now. I can give my loved one so much more of me, now that I have regular time to get away and regroup.”

Friday, April 6, 2012

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