Support Groups, Pt. 1: Why You Need One

Individual care partners coming together to share, learn and encourage.

Past blogs have mentioned how important we feel it is to be a part of a caregiver support group. In our latest book, Responsive Dementia Care, we wrote:
There are many excuses for not attending a support group:

• I don't have time, or the energy.
• I don't want to listen to other people whine.
• I don't want to talk about my loved one--it sounds disrespectful.
• I'm awfully private, I'd never be able to talk to strangers.
• And so on.

But group members tell a different story:

• I don't know what I'd have done without my group!
• My support group gives me strength to keep on.
• I can talk about my loved one here and the group members understand; they've been there. They know my loved one's behavior is dementia-caused, not personal.
• I learn new ideas, new ways to do things, new resources."
• I come away from the group feeling stronger. How do caregivers survive without a support group?

Support groups do all of that and more. They relieve loneliness from the isolation that is endemic with dementia care partners. The feeling that you aren't alone on this journey can be a great stress reducer and depression chaser.

Our book, A Caregiver's Guide to Lewy Body Dementia, talked about the value of being able to vent and share experiences in support groups:
"Thank goodness I have my support group. When my health aide insisted that I try going, I wasn’t sure I should leave Emma that long. But I come back feeling so much better and more able to cope. You can relate. I hate to bore my friends with my ups and downs and besides, they don’t really understand. My family supports me but they don’t understand either. You can’t if you haven’t lived it. -- Howard
Howard’s group relates. He can vent and his group knows he is simply frustrated, he doesn’t want out. He can ask, “How do you handle this?” and get answers from others who have had the same problem. He can make jokes about his situation and his group members aren’t shocked; they laugh with him. He goes home feeling better about himself and his situation.

In a well-run group, venting isn't the whining mentioned earlier as an excuse not to attend. It is instead, a needed release of frustration, usually followed by some supportive a few "I've been there too" comments from other group members, followed in turn by some constructive suggestions about what worked and didn't work for them in that situation.

Next week: What to look for in a good support group.

What about Provigil?

(Some words are italicized the first time they appear. These are defined below this post.) 

Way back in 2008, we had a friend, Bob, whose father had LBD. Dad also had excessive daytime sleeping (EDS), a common LBD symptom. His doctor prescribed Provigil and it did keep Dad awake more. But Bob insisted that it made his dad more alert too. "It even stopped most of his hallucinations," Bob told us.

We knew that Provigil was a psycho-stimulant, a brain stimulating drug approved for use with EDS, and so it was an appropriate drug for Dad's excessive daytime sleeping. We also knew that college students have used it and other psycho-stimulants, like Ritalin and Adderall, to help them stay awake and cram for tests and so the idea that it improved Dad's cognition wasn't off the wall. Of course, this off-label (and often non-prescription!) use by healthy students is not encouraged. But might its use by someone like Bob's dad be very helpful for more than just EDS? Some people thought so, but there was little if any scientific proof.

Fast forward to 2017 and two articles, one about the generic Provigil, modafinil, and another about its close cousin, Nuvigil. In the first, researchers used MRI imaging of the brain to find out if and in what areas of the brain, modafinil caused increased activity. In the second, researchers explored the effectiveness, safety and tolerability of Nuvigil when used for EDS associated with dementia with Lewy bodies (DLB).

It is believed that Provigil and its close cousin, Nuvigil, both work by improving the function of dopamine. Dopamine in the midbrain acts to control mobility as any PD care partner knows. But in other parts of the brain, it facilitates cognitive functions. Researchers in the first study found that modafinil significantly increased activity in the areas of the brain controlling vision, attention, inhibition and the working memory.

This not only supports the theory about how Provigil works. It  shows how Provigil likely helped those those college students to focus better and have better access to the thinking skills that operate in their working memory. And it looked like Bob could be right in his claim that Provigil was the cause for the improvement of his dad's hallucinations and his better alertness. But did any of this last?

Probably not. The first study was done with only one dose per subject and so continuity was not an issue. However, the researchers in the second article did administer Nuvigil for various periods of time but they found no improvement in cognitive function. The critical term here is "over time." The college kids didn't get smarter over time either. Their skills were simply improved temporarily, long enough for them to get through their tests. Even without the other issues, that's a good reason to discourage this practice. For the student's learning to be useful in the future, it needs to last, not disappear after a quick short-term boost!

It is admittedly different for a person with dementia, where any boost, even short term, is welcome. However, its lack of improvement over time is likely why doctors seldom prescribe it off label to assist FDA approved dementia drugs. Of course, LBD is very individual. Maybe in Bob's dad's case, it did last longer.

But are these drugs safe? The researchers in the second article found that the drug was reasonably safe for people living DLB. Thus it is probably equally safe for someone living with PDD. Addiction is always a concern with any psycho-stimulant, but since Provigil and its relatives have a different action than most other stimulants, this really isn't an issue for them. In addition, when considering a drug you don't plan to stop, addiction becomes less important.

Side effects for these drugs are usually mild but even so, people with a history of heart disease or arrhythmia should avoid stimulants in general, including these. The most common side effects are GI related: nausea, dry mouth, anorexia and diarrhea.

Nuvigil is made by a different company than Provigil. While its  slightly different formula provides the same general action,  it is milder and longer acting.That is, if a person was taking two 100mg doses of Provigil per day , they'd need to take one 250mg dose per day of Nuvigil for the same effect. Likely due to Nuvigil's longer and milder action, doctors usually prefer it over Provigil and thus, so do insurance companies. If your insurance doesn't cover this drug, or if the co-pay is high, do ask about generic Provigil. It will be much less expensive. Nuvigil doesn't come in a generic form.

The bottom line is that these drugs are reasonably safe, work well for EDS and may provide an extra short-term bonus of better cognition and/or fewer hallucinations to some people.

armodafinil: The generic name for Nuvigil
DLB: Dementia with Lewy bodies. The Lewy body dementias that starts with cognition issues.
dopamine: A neurotransmitter that facilitates mobility and cognition
EDS: Excessive daytime sleeping. A DLB symptom identified in the official diagnosis criteria.
generic: Non-brand drug name
GI: Gastro-intestinal, concerning the stomach and intestines
modafinil: The generic name for Provigil and for the less expensive generic Provigil
Nuvigil: A milder and longer acting cousin of Provigil. Not available as a generic.
off-label: Used for a condition that the drug is not approved for.
PD: Parkinson's disease, a Lewy body disease and often, a predecessor of LBD
PDD: Parkinson's disease with dementia. The Lewy body dementia that starts with motor issues.
Provigil: A drug accepted by the FDA for treatment of EDS.
psycho-stimulant: brain (psycho)-stimulating drug
working memory: used for holding data while performing thinking skills

The two articles:
Punzi, M. et al. (2017) Modafinil-Induced Changes in Functional Connectivity in the Cortex and Cerebellum of Healthy Elderly Subjects. Frontiers in aging neuroscience, 9, 85. doi:10.3389/fnagi.2017.00085

Lapid, M. Boeve, B. et. al. (2017). Efficacy, Safety, and Tolerability of Armodafinil Therapy for Hypersomnia Associated with Dementia with Lewy Bodies: A Pilot Study. Dementia and geriatric cognitive disorders, 43(5-6), 269-280.  https://www.karger.com/Article/FullText/471507

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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

Local Author Book Fair in Mesa AZ

For all of our readers in the Mesa area, we will be displaying and selling our books at the Red Mountain Library's Local Author Book Fair:

• Date and Time: Saturday, February 23rd, from 12:30 to 5pm.
• Location: Red Mountain Library, 635 N. Power Road, Mesa, AZ

Do come out and visit with us! We'll have all of our prize-winning books about Lewy body dementia (LBD) and Helen's novels as well, 8 different books in all.
If you'd like to have us come speak to your organization or group, here's your chance to ask! 
Jim and Helen can talk about:

• LBD,  how it is connected to Parkinson's and how it is different from Alzheimer's.
• non-drug methods of dealing with dementia-related behaviors and why that's important.

Helen can talk about:

• the various ways of publishing your book and the advantages and disadvantages of each
• using family legends, genealogy, local or national history and imagination to write interesting, fact-based novels.

Books by Helen and Jim Whitworth:

• A Caregivers’ Guide to Lewy Body Dementia (2012 Caregiver Friendly Award)
• Managing Cognitive Issues in Parkinson's and Lewy Body Dementia (2015 eLit Adult Nonfiction Award)
• Responsive Dementia Care: Fewer Behaviors Fewer Drugs (ongoing 2018 Wishing Shelf Literature Adult Nonfiction Finalist)
• Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff 

Books by Helen Buell Whitworth:

• On the Road with the Whitworths
• Besty
• The Northwest McCutchens: Generation One
• The Northwest McCutchens: The Exodus

New to Lewy, Pt. 5. What Do I Tell My Loved One?

In a recent support group the question about what to tell a loved one after they've been diagnosed?

What should I say? Should I tell them at all? Jerry doesn't remember from one minute to the next. Does it do any good to tell him anyway? -- Linda

The group consensus was that yes, Linda should tell Jerry, but only as much as he needed to know at the moment. "You have a brain disease," they suggested saying. Don't go into detail; that will simply confuse them. "Personify the disease," another said, "Call it Lewy, and then when they have problems, like when they stumble, or can't do something that they used to be able to do, blame "Lewy." They know that something is wrong and they need something to blame instead of themselves.

More comments:

When Ken was diagnosed, Ken took it better than I did! He hadn't felt "right" for a while and now he had an answer to why. He made him feel better about himself. It wasn't him, it was the disease.

My dad loves to joke. He always has. He'll say things like, "What did you say your name was? I can't remember." Then he'll laugh, because he actually does remember--this time.

My mother-in-law has Alzheimer's. She will repeat questions and then when she sees that my husband is getting impatient, she shrugs and says, "I have de-men-she-ia, you know." 

When Brian flies off the handle and accuses me of awful things, he sometimes remembers later and feels really bad about it. I tell him it's OK. I know it was Lewy talking, not him.

Danny's hallucinations about bugs feel very real and scary to him. When I tell him that it's Lewy making trouble again, it calms him down. He still understands that the bugs aren't real, but I know that won't last. Even now, it helps to physically sweep all those nasty bugs out the door.

Our experience is that people in general tend to lean one of two ways. The above group are among those who want to know more about an unwanted diagnosis, or are at least willing to accept it. The next group are among those who tend to avoid the difficulties in their lives such as an unwanted diagnosis:

My mom won't accept that there is anything wrong with her. When I tell her that it's Lewy making her angry, she gets madder. "It isn't Lewy, it's you," she tells me. She's fine. I'm the one with the problem.

My wife was a professional cook. When she started making mistakes, she hid them from me but I figured out that something was wrong when I kept getting burn offerings for meals. Then I found a burned skillet in the garbage and I knew we had to go for help.

Carl still thinks he can drive. "I'm fine, he tells me. I've never had an accident. I don't know why you think I might now." I thought things would change because his driver's license was up for renewal. In our state, that means that at his age, he has to take a driving test and I was sure he'd fail. I've ridden with him. He really isn't safe! But that old Showtime kicked in and he did fine!

An almost universal dementia symptom helps this last group maintain their denial. Dementia gradually takes away a person's ability to judge how much they've changed. If a person is denial-prone, they likely won't see those first changes, the ones they could have recognized if their denial hadn't prevented it. But then, as the dementia increases, they can't see the changes. Thus, these people don't have the need for Lewy as their fall-guy. They are fine, thank you. You are the one with the problem!

To deal with a loved one's denial, use the same techniques you use to deal with other delusions: patience, empathy, acceptance and redirection. But no one said this was easy.

Take advantage of time-outs when you are frustrated. A few minutes out of their sight will give you a chance to regroup--and when you come back, they will probably have forgotten the whole episode.

Sometimes, you don't have the freedom to take your time. In situations like Carl's dangerous driving, look for someone else besides you to be the "bad guy." You have to live with your loved one; their doctor or a married child, for example, doesn't. (See these 3/24/17 and 3/27/17 for more about this.

Next week will finally start that series on support groups.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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

New to Lewy: Pt. 4: Denial, A Part of the Acceptance Process

In a recent blog, Emily talked about how her husband, Ben, was diagnosed with LBD.

I knew Ben had problems but I wanted them to be something curable so that we could get on with our once comfortable life. I just couldn't believe that the doctor was right. For one thing, there were still days at a time when he was practically normal. I thought that if Ben could be so normal even part of the time, then eventually, he'd get better, wouldn't he? -- Emily

Emily was in denial, which is a normal part of the process of accepting a life changing diagnosis--of moving from old expectations to accepting the changes that an unwelcome diagnosis heralds. Those occasional "good times" that Emily described are due to one of the defining symptoms of LBD: fluctuating cognition. A person can have days, or even weeks of apparent normality which can fuel a person's already present denial. However, the LBD symptoms always reappear. and the general progress of the disease over time is always downward.

It wasn't long though until I realized that Ben was getting worse, not better. Yes, he had his spells of alertness, but over time, I could see that his general condition was degenerating. Like it or not, I knew the doctor was right. -- Emily

Although there may be periods of awareness, the general progress will be downward. Because Emily is living with this daily, the severity of Ben's symptoms made it impossible for her to hide in her denial for long. Sometimes, a care partner can become stuck in their denial, especially when the symptoms are less physical and easier to ignore. This is often the case with dementia with Lewy bodies (DLB), where the thinking errors precede the physical problems. Ben's symptoms were strong enough that once Emily could see that he wasn't really improving over time, her denial gradually changed to acceptance. Denial can also last longer for people who have less physical contact with their loved ones.

Our daughter, Ariel, lives in a different state and flies in for quick visits several times a year. "Dad seems just fine to me," she told me. "He's a little slower, but that's all." And when she was around he really was more alert. -- Emily

When Ariel came to visit, Ben went into Showtime, a totally involuntary form of fluctuating cognition that can appear in the presence of people who aren't around the person much but are still important to them. Showtime makes it easier for visiting relatives like Ariel to maintain their denial of a person's true condition.

Why is denial bad? Well, at first, it can actually be a good thing. It cushions you and gives you time to adjust. But when it goes on too long, it becomes a roadblock that makes life more difficult. It takes energy to maintain a denial, energy that could be used to learn how to adapt to the new realities. In fact, it keeps a person from seeing the need to adapt, and so they stumble along struggling to maintain the status quo when that is no longer a real option. When denial lasts for a long time, it usually takes a something drastic to cause a person to let go of it, a fall, an auto accident, or some other disaster.

In Emily's case, Ben's symptoms were strong enough that she had to let go of her denial before that happened and was able to move on. However, Ariel who only heard of them but didn't see them, kept hers and thus, was unable to give her mother the support she needed.

How can you help a person move out of denial? Sadly, denial is a lot like a delusion. In both cases, the person involved is stuck in their own reality and confrontations only make the situation worse. The difference is that trying to change a dementia-related delusion is futile. To some extent, that is also true with denial, but the difference is that the person in denial still has the ability to think--if you can get past their protective defenses and help them to do so.

As with delusions, you first have to support the person where they are--in their delusional denial. In other words, you must become their friend, not their enemy. If they have to defend their belief, you are lost before you begin. You don't have to believe them, but you do need to show that you accept their view. "Yes, I see where you are coming from. Maybe that's so," you might say.

Then you may be able to gently move them towards reality, "to gather a few more facts," you might suggest. This works best if you are willing to move with them, to make it "something we do together" such as going to the doctor or a support group, or even doing some research on the computer.

There, you can ask the questions that the person may be afraid to ask. Then, by playing devil's advocate and challenging the answers, you can reinforce your connection with them and likely, get some even more detailed answers.

Finally, make a point of accepting these answers with apparent reluctance. Mirroring the same reluctance, the person may be able to to begin letting go of their denial and start the move into acceptance.

If you are the one who is dealing with that unwanted diagnosis, you may be in denial and not know it. A good thing to do in this case is to consciously assume that you are experiencing some denial even though it may not feel that way at the time. (One aspect of denial is that the person truly doesn't recognize it in themselves!)

Give yourself a few days to get used to the idea of the changes to come. Then do a personal review. If you still believe that the diagnosis is wrong, what do you need to support that belief...or to change your mind?

Re-evaluate the events and symptoms that led to the diagnosis using any new information you have gathered. Then imagine that the person involved is someone else...someone you aren't connected to. Would you believe the diagnosis then? If so, what is keeping you from believing it now?

If you can see that it may be your fear of what is to come, then you are likely in protective denial. If you can accept this intellectually, you can probably move on to accept it emotionally.

Once a person lets go of their denial, they can begin the process of finding ways to keep life as normal as possible. One of those is to use the many benefits of support groups.

Next week, the final blog in this series: what to tell a loved one. The week after that will start a new series about support groups.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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