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

Thursday, April 23, 2015

Updates and the Value of Routines

This is a blog about a lot of things that have been happening in our lives lately.

First, here's the promised progress report on Jim and his surgery. The surgery went fine. He is home and doing well. He sends out thanks for all the inquiries.

Then we need to recognize a couple of families that have made impressions on our lives. The first is a couple we met last summer in Washington State. Dave and Bet, and their way of handling her LBD, were the subjects of all three of our August, 2014, blogs. We just received word that after 5 1/2 years, Bet has ended her LBD journey. We send her family many warm wishes.

Joy Baker is the co-facilitator of our local LBD Caregiver Support Group. With her caring ways and ready wit (a requirement for caregivers, she insists), she has become a good friend, not only to us, but to many in that group. Her dear husband, Bob, also ended his LBD journey recently. We also send many warm wishes to Joy and her family.

Finally, another family has also been in thoughts. John and Laura have been together for 40 years. Theirs has been a close marriage on the most part and they never really needed anyone but each other, especially after the children were grown. Yes, they were social, but usually they socialized with other couples. They had hobbies, even different hobbies, but still, they did them together. But now, John has LBD and Laura is his caregiver. He's still physically active--he can walk for miles and sometimes does, when he escapes from their gated community. Recently the police brought him back from such an adventure. Laura has begun to feel trapped. She can't leave him alone anymore and he won't stay with anyone else. They've just never had that kind of relationship. What to do? That's her dilemma right now.

It makes us realize how important preparation is. Developing routines while the capability of thinking is still present is an important step that many caregivers miss. Such a routine would probably have helped John accept Laura's leaving him with someone else for a few hours. For instance, they could have instituted a weekly "guy's day" where some of John's s male friends would come to play cards or visit, while Laura left for a couple of hours. As most couples would have done, they didn't even consider this while John was still able to see cause and effect. He was fine alone; he didn't need a "babysitter" while Laura ran errands. After all, who wants to pay or ask friends/relatives for unnecessary help. But then, when the need came--and it usually does for our loved ones, it was too late to develop a routine that John could accept.

The moral of this story is this: If you are just starting out on this journey, do remember to plan for the future while you are dealing with the present. This includes more than getting the right legal work done, as important as that is. It also includes setting up some routines that will pay for themselves time and time again even if they seem unnecessary at the time you start them.

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

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.