Friday, April 17, 2015

Surgery Went Well

No blog today. Jim had surgery and so we spent the day at the hospital. It went very well. He's now awake, alert and doing everything they think he should be doing. He is spending the night in ICU, as a precaution, not because of a problem, and should be able to go home tomorrow. I spent the day in various waiting rooms and in the hospital cafeteria. I'm bushed. Waiting is tiring work! Thanks to my friend Joy, it was an easier job than it would have been. We all need support at times like this and today, she was mine.

More next week!

Friday, April 10, 2015

DLB and PDD: How Are They Different?

Today the blog is about the ways that the two types of LBD—dementia with Lewy bodies (DLB) and Parkinson’s disease with dementia (PDD)—are different. We often talk about how they are the same, and truly, those ways are the most important. But there are a few differences too.

1. Diagnostic criteria. Because DLB was defined by dementia specialists and PDD by movement specialists, they have different criteria. The LBDA offers a chart which shows  similarities and differences between the two criteria. They are more similar than different, but do reflect the different mind sets of their originators. For example, with DLB, "dementia" is required for a diagnosis,  but what it means is not really spelled out. With PDD, dementia is broken down into four specific core issues. (Chart)

In most cases, how a person with LBD is diagnosed will not be an issue; treatment is the same. However, with PDD, as the dementia becomes more prominent, the drugs used for PD may make the dementia worse and may need to be adjusted.

2. Mobility. This is the major difference. In the LBDA chart, Parkinsonism is required for a PDD diagnosis (in the form of a PD diagnosis, usually years prior to dementia). In DLB, it is one of three core issues, equal with visual hallucinations and fluctuating cognition. In our experience, a person diagnosed with DLB will usually movement issues eventually, but they are seldom as severe as they are with PDD. For example, Jim's first wife, Annie, had DLB. She developed the typically weakened facial muscles, but she was ambulatory until very late in her journey. In contrast, our friend, Bill, who had PDD, spent his last years in a wheelchair.

3. Alzheimer’s (AD). Another difference between DLB and PDD is how they pair with Alzheimer's. You probably already know that few dementias are “pure.” That is, a person usually has some combination of two or more types of dementia, not just one. For some reason, the person with DLB is much more likely to have AD (80% of the time) than the person with PDD (less than 20% of the time). They are equally likely to have vascular dementia (VaD) and equally likely NOT to have Frontotemporal dementia (FTD). (Reference)

3. Wandering. The likelihood of AD, where wandering is a common symptom, combines with DLB’s better mobility to make wandering much more likely for people like Annie. This must be considered during residential placement. A person with classic LBD may be placed in an assisted living facility because they don’t need the constant containment that a person with AD needs. (But the additional activity, which can increase stress, may still make this a poor choice!)

As mentioned earlier, the similarities between DLB and PDD are greater, both in numbers and in importance. But concerning differences, what have your experiences been? Feel free to comment!

For more information about Lewy body disorders read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s &  Lewy Body Dementia

Friday, April 3, 2015

When Drugs Might be Helpful

Anyone who has read our books, especially the last one, Managing Cognitive Issues in Parkinson's and Lewy Body Dementia, knows that we advocate minimal use of drugs. However, there are times when they can be helpful and should be considered. This goes with several caveats, however.

No two people with Lewy body disorders can be expected to respond the same to any drug. Each new drug is an "experiment." Reactions vary greatly, from tolerating a drug well to being unable to use it at all. Most drugs should be:
  • started in very small doses,
  • monitored carefully and
  • stopped if unwanted reactions appear.
The drugs at most risk for unwanted reactions are those in the anticholinergic family, which includes drugs used to manage behaviors, anxiety and agitation. (Click here for a long list of these drugs.) These drugs vary as to strength and the length of time they stay in the body. The drugs of choice by many Lewy-savvy doctors are Seroquel, Clonopin and Ativan. These are all mild with a short half-life, and thus tend to cause fewer problems.

Lewy bodies tend to cause a person to become sensitive to certain drugs. Literature reports that at least 50% of PwLBD will be drug sensitive. From listening to thousands of caregivers in person and online, we believe that percentage is much higher. However, drug sensitivity:
  • is different from an allergy, where even a small dose may cause a severe reaction.
  • causes a person to react to a normal doses as though it were an overdose. In many cases, a smaller dose may be tolerated.
  • symptoms of overdose vary depending on the drug and the individual, but include muscle problems, increased or new behaviors, heavy sedation, and confusion.
Lewy bodies can make some people SUPER-SENSITIVE. Once a person has shown such sensitivity to any drug, they are much more likely to be equally sensitive to another. For these people, the use of any anticholinergic drug is seldom helpful, even in the smallest of doses, and can be disastrous.

The progress of the disorder can cause a person's response to a drug to change. A drug that once was helpful may become ineffective, or worse, begin to cause negative side effects. Therefore, all drugs should be reviewed every few months.

Last but not least, in most cases, non-drug remedies should be tried first, before any drug is tried. Reducing stress and keeping your loved one as healthy as possible, will solve many problems without resorting to drugs.

That said, here are some situations where we believe drugs ARE helpful:

Dementia drugs can temporarily improve cognition. They can also decrease non-cognitive symptoms, such as hallucinations, delusions. anxiety and agitation. In addition, they are fairly safe. The most troublesome side-effects are GI discomfort. The doctor may have to try more than one to get a good fit.

Drugs, like antibiotics, used to fight infections are not only fairly safe, they can be life-saving. This is one instance where the doctor may need to prescribe a large enough dose to fight the infection and may not be able to start small. These drugs should only be used if an infection is present. Home remedies are better for prevention: cranberry juice to prevent UTI's, proper drinking procedures to prevent aspiration leading to pneumonia, etc.

Not everything is caused by Lewy bodies! Drugs may be needed for other issues such as heart problems, diabetes, or depression. These illnesses can usually be treated safely, but the drugs used should be reviewed. The doctor will likely want to replace any likely to cause symptoms of sensitivity with safer drugs.

When every non-medical remedy has been tried and the PwLBD is still agitated, difficult to deal with or uncomfortable, then behavior management drugs may be helpful. "Uncomfortable" is probably the most important. For example, if your loved one is not upset about having hallucinations but you are, this is NOT a reason to medicate. Your loved one will only have a problem if you make it one.

Some events, such as a move into residential care, are going to be anxiety-ridden no matter what you do. Anxiety is like pain. If you treat it before it takes on a life of its own, you don't have to use nearly as many drugs for the same--or better--effect. Many Lewy-savvy doctors will prescribe a tiny amount of a weak behavior management drug for a few days to a week before the event and, if adjustment is involved, for a week or so after the event.

Caregiver stress, depression and burnout are all mirrored by loved ones who reflect them back with difficult behavior. Don't feel embarrassed to ask your doctor for a mild antidepressant--that is for you, not your loved one. While non-medical stress management tools can and do help, if you let it go too long, you may need a medical boost, to get you where you can use them. Remember, the better you feel, the better your loved one feels.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, March 27, 2015

Adjusting to Residential Care

Last week we talked about entering residential care. This week, the blog is about the adjustment period. Banner Alzheimer's Institute, in Phoenix AZ offers a handout that says it better than I could:

The vast majority of people with dementia have difficulty adjusting to a new home environment. For at least two weeks the person can't find things, is besieged with new people and routines and has feelings of frustration and/or anger. Here are some suggestions for helping a loved one adjust:

Visit often, even if the facility discourages this. Make the visits BRIEF. 10-15 minutes are enough for you to know your loved one is well-cared for and to give them reassurance. A 3-hour visit is going to cause agitation.

If the loved one demands to be taken home, DON'T try to explain. Look at your watch and say, "I have to go now." It will break your heart, but will minimize the behavior after a few times. Many patients start the "take me home" pleas after a 30 minute visit when they get tired. Take it as an indication that it is time to go.

Expect the person to be agitated and angry, but stop beating yourself up about it. You did what had to be done. Your loved one needs to grieve. To expect happiness is unrealistic.

Take something to do. Do their nails or give them a hand or foot massage, have a snack, listen to a new piece of music or share an activity. Once you are done, it is time to go. Have the staff divert your loved one to an activity such as a meal.

Call before you come so you know what kind of day your loved one is having. If you know they are agitated and having a bad day and if you don't think you can face it without becoming upset, don't go. Wait until later, when they are not so agitated. Agitation is contagious and your poor response will just make their already difficult mood worse.

Talk with the staff. Smile. Find the staff doing something right and complement at least one on each visit. There is nothing worse than the family who comes in with their microscope looking for flaws. They will become apparent soon enough -- we are talking about working with demented adults here. Know that the facility and staff have no magic for dealing with behavior problems. If it was difficult to manage at home, it will be worse in the care facility -- especially with 7+ other people who are also demented.

Before you leave, talk with an administrative staff member to see how things are going and what you (as a team) can do to improve care throughout the adjustment.

DO select an activity-based program! (It keeps residents alert longer.) If your loved one is not a socializer, ask the staff to let him have daily alone time, and introduce him more slowly to the group.

Last, do not let the adjustment period dissuade you from the placement. It most likely will work out.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 20, 2015

Moving into Residential Care

Last week we talked about the caregivers and their issues with the move of a loved one from home care to residential care. This week is about the loved ones. The decision has been made. Your loved one is no longer safe at home, for whatever reason. This process can be wrenching for both of you, even when it is voluntary. How do you get your loved one into the new home with the least amount of stress? Ideally, this process started with the first diagnosis of dementia.

Talk about it early. Talk about the possibility of such a move while there is still reasoning ability. Jan and Peter talked first about the possibility of residential care right after his diagnosis. He begged her to "never put him away." Jan knew she couldn't promise this. Instead, she told him, "I will keep you as long as it is safe for both of us." You don't want to make promises you can't keep!

Cry. Likely, you are as upset as your loved one is about the idea. Go ahead and cry. Jan said, "When I cried, it gave Peter permission to cry too. It really made us feel close to grieve this together." Crying is an emotional response. Much more than talking, it will bring you together and let him know you aren't deserting him. A warning: like the talking, crying should be done well in advance of the move. It is too stressful at moving time.

Chose something close. Sue finally found a facility that worked for her mother-in-law. It was an hour away. Now, Sue finds this a great drawback. Not only does she spend far too much time on the road, she can't visit as often as she could otherwise. Norma finally settled for a place that was only five miles from her home. "It isn't as nice as some of the others," Norma explained. "And it is more expensive than some of them too, but it's close enough I can visit a couple of times a day and still have lots of time for myself. And I think I probably save a enough on gas to make up for most of the extra cost.

Consider Adult Day Care. Larry took his wife, Eve, to the Adult Day Care program that their chosen facility offered. It gave him some respite and allowed Eve to get acquainted with the place. When the next step came, and she moved into Assisted Living, both of them were more comfortable with the idea.

Just do it. Nancy wanted to involve Bill in his move. "We've always done these things together," she explained. Her support group discouraged her. "Bill will just worry and fret," they warned. The group is right. Moving involves major change. For someone with dementia, even voluntary change leads to anxiety, which increases LBD symptoms like hallucinations and delusions--and acting out behavior.

To avoid these issues, Nancy needs to keep the time up to moving day as calm and uneventful as possible. This means not telling Bill when he is moving. If it isn't talked about in the last day or so, he will likely forget any earlier conversations. Nancy can pack up and bring Bill's belongings to him after she has delivered him to his new home.

This may sound unfair, but the rules have changed. Dementia decreases the ability to understand cause and effect. Likely, Bill can no longer understand why he must move. There's also the fear of abandonment.Thus, not letting Bill know about the move is like the therapeutic fib: when it is done for his good and to avoid damaging stress, it is therapeutic.

Use a little medicine.  Matthew's doctor suggested that he take a small dose of Seroquel, starting a few days before his move and lasting a week or so afterwards, while he was getting situated. . Dorothy reported that it really helped to smooth the way for the move. "Matthew wasn't nearly so upset as I was afraid he'd be," she said. Even for the family who avoids drugs as much as possible, there are times when they can be very useful and this is one of them!

Next week will be about the first weeks in residential care.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 13, 2015

Dementia Drugs or Not?

We talk a lot about being very careful about the drugs our LBD loved ones take. What about dementia drugs (Aricpet, Exelon, Razadyne and Namenda)? They definitely aren't as scary as the drugs used to manage behaviors, but still, caregivers wonder if they are safe. And even if they are safe, are they effective? Should our loved ones bother taking them?

The bottom line is that we believe that in most cases, these drugs fairly safe. We also believe they can be quite helpful, although not necessarily in the way one might think. The amount that dementia drugs improve cognition can be fairly limited, and if this were their only effect, they might not be worthwhile. However, they can be quite effective in decreasing symptoms such as hallucinations, paranoia, anxiety or even depression. Further, they do this with fewer and less serious side effects than many of the drugs most often used for the behavior problems more common with LBD than with Alzheimer's. The downside is that eventually, they quit working.

First, some basics:

  • The body is a wonderful "drug factory" that builds chemical compounds, then breaks them down and rebuilds them as needed.
  • Acetylcholine, one of the chemicals targeted by Lewy bodies, facilitates cognition and other brain functions.
  • Lewy bodies deplete acetylcholine, causing dementia and other LBD symptoms. Without adequate acetylcholine, the brain cells that use it to weaken and eventually die.
  • All dementia drugs require live cells to work.
  • No dementia drug stops the Lewy bodies from destroying brain cells. As more and more cells die, the drugs become less effective.

Aricept, Exelon and Razadyne, all act to inhibit the body's natural breaking down process. This increases the amount of available acetylcholine so that there are fewer LBD symptoms.

Namenda works in a similar way with a different set of chemicals that aren't so specific to LBD. It is usually prescribed in combination with one of the first three drugs. Its addition will often increase the waning effects of the first group of drugs, for both cognitive and non-cognitive symptoms. While Namenda does seem to be effective longer, its action is still temporary. Eventually, there won't be enough live cells for it to work either.

As for safety, these drugs all tend to be all pretty tough on the GI tract--on the stomach and gut. Each drug is a little different. Doctors will usually try oral Aricept first (its generic version is the least expensive). It there is a problem with it, the doctor may try oral Exelon or Razadyne next. If these cause too much GI distress, Aricept and Exelon come in patches that bypass the GI tract and decrease this problem significantly. Patches are more expensive but they do have fewer side effects. Although Namenda has the same GI issues as the other drugs, our experience is that most caregivers report that their loved one can take it without a problem.

And so, yes, for most LBDers, dementia drugs can be considered a very helpful part of their treatment--especially for the non-cognitive symptoms that can be so difficult to treat. However, always remember that each person will react to drugs differently. If your loved one may be one of the few who have bad reactions to these drugs, then consider some of the many non-drug methods available, such as massage, aromatherapy or music therapy. In fact, consider these anyway! Their use will almost always reduce the amount of drugs that are needed overall. In fact, no dementia drug is as effective as exercise (and probably several other non-drug therapies such as music) for improving cognition!

For more information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 6, 2015

An Attitude of Gratitude

This week's blog is from LBD caregiver, Lisa Cooke, printed just as she wrote it. What wonderful advice!

People often tell me they can’t believe how well I’m handling our situation. This never fails to shock me since I know the real me and the moments I want to run away and never return, but whenever I hear their comments, they cause me to reflect on how we deal with Lewy Body and life in general.

I think most of our ability to cope comes from a core belief in an attitude of gratitude that came from my mother. No matter how horrible a situation is, there is something hidden inside that we can be grateful for. It’s a mind game of sorts, but it works something like this:

Instead of thinking: “Oh no, he needs a walker.” Think: “Thank goodness there are walkers and wheelchairs to help us.”

Instead of thinking: “I can’t believe my husband needs diapers,” Think: “Can you imagine what this would have been like before there were disposable diapers?”

Instead of thinking: “Why did this happen to us?” Think: “Thankfully, we got our children raised before this hit.”

Instead of thinking: “We had to sell our dream home to move into a retirement community.” Think: “I’m so glad we had enough equity in our home to afford this CCRC.”

Instead of thinking: “I am so alone and lost,” Think: “I’m so glad I have the support group to talk to.”

Sometimes the game is tougher than others. Those days when he’s hallucinating and up all night…those are the days when the best I can find is that I’m glad I’m retired and don’t have to get up in the morning to work. But that thought really does make me grateful.

My mother buried two daughters, one at the age of 12 who was born with severe cerebral palsy, and another who died from breast cancer at the age of 49. Mom provided care for both and with the second; she was the fulltime caregiver for my father who had PD at the same time my sister was dying from cancer. She has spent 36 years of her life being a primary caregiver to someone, but she always smiled and laughed and acted like her life was totally normal. She and Dad traveled, went out to eat with friends, and attended church up until the last three weeks before he died.

I learned a lot from her. I learned that you must deal with the hand you’re given whether you want to or not. She always says, “You just do what you gotta do,” and she’s right. Our marriage picked up a third member named Lewy. He wasn’t welcomed, but he’s here and (at the risk of sounding like Scarlett O’Hara) as God as my witness, we’re going to continue living our life to the fullest possible despite Lewy’s unwelcomed arrival.

Next week we’re going to the beach for a week in a big house with all our kids and grandkids. Part of it will be exhausting, but part of it will be glorious. I’m going for the glorious part. We’ll have to pack his walker and wheel chair. I’ll do all the packing and driving and I’ll have to sleep on an air mattress on the floor of his room so I can help him find the bathroom at night. But right now, I feel so blessed. I get to spend a week, walking on the beach, listening to the surf, and playing with my grandchildren.

How lucky am I?

Thank you Lisa!

For more information about Lewy body disorders read our books: