Sleep, #6. Getting to Sleep

In this last blog on sleep, we finally get around to suggestions for better sleep. The bad news is that sleeping pills aren’t the answer. They are on the list to avoid for people living with dementia (PlwD*, and especially for people living with LBD (PlwLBD*). Here are some safer suggestions, an updated version of a 2012 blog:

During the day:

Exercise: Most dementia caregivers know that “exercise is better than most dementia drugs” for maintaining cognitive function. It is also better than most sleeping pills for fostering a good night’s sleep. However, make sure the exercise occurs 2 hours or more prior to bedtime.

Keep active: Anyone sleeps better if they have been active during the day. Even if movement is limited, stimulate with other activities, talking, hobbies, and such.

Keep the peace: Anything that upsets your loved one during the day may come back to haunt you both at night. Do everything you can to maintain peace and lower stress

Eliminate time worries: Don’t tell your loved one about future plans until the last moment. As dementia progresses, the concept of time is lost. Everything is in the here and now. That means thatn if your loved one remembers that you said he has an appointment for day after tomorrow at 4pm, he feels he has to be there NOW.

Bright lights: These help to maintain circadian rhythms. First, encourage exposure to as much natural daylight as possible. Take walks outside and get in some good exercise too! If that isn't possible, consider setting up a bright-light box, the kind used with seasonal affective disorder (SAD). Program it to turn on automatically a few minutes before morning wakeup time and stay on for about a half hour. Follow up with exposure to natural light during the rest of the day. Be prepared with sunglasses. Many people living with dementia have sensitive eyes and may need to protect their eyes even when it doesn't seem very bright.

Preparing for Bedtime:

Atmosphere: Make the bedroom calm, comfortable and dark. Have a soothing color scheme, darkened windows, a comfortable bed, good ventilation and a minimal number of blinking lights from clocks, radios and such.

Keeping time: If your loved one still has a concept of time, a large clock that’s easy to see from bed may help to decrease excessive getting up.

The last few hours of the day: This should be the calmest time of the day. No stress, no excitement. If bathing is stressful, do it earlier in the day. Ask family and friends to refrain from calling at this time. If TV is part of your normal routine, find the most calming shows you can to watch. You can also find many web pages that offer soothing content. Go to youtube.com and put "restful music" in the search box for a long list of suggestions.

Routine: Set up a routine that includes a set bedtime, low stress, enjoyable activities, the usual bedtime preparation, soft music, etc. What you include depends on the individual and what they enjoy. Once the routine is set, try not to vary it.

Medications: 

Most sleep aids. This was mentioned at the first of the blog but bears repeating. Most sleep medications are strong sedatives and are not considered safe for anyone with dementia.

Melatonin: This natural hormone is usually safe with LBD and has been used as a sleep aid. Because it triggers wake and sleep cycles, it should always be taken at least an hour before bedtime and should not be taken in the middle of the night so as to maintain proper cycles. A possible side effect is depression—a common LBD symptom already. However, the results are temporary, making melatonin worth a try. To decrease the likelihood of this side effect, try using the hormone in combination with bright lights mentioned earlier.

Medication time change: Ask the doctor if your loved one’s medication times can be adjusted so that those that encourage wakefulness, such as Exelon and Aricept are given in the mornings and those that calm such as Seroquel are given in the evenings.

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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Sleep Part 5: Depression and More

For the last month and more, we've been talking about sleep, how important it is and the many ways it gets disrupted. Today, we finish up and next week we talk about ways to help your loved one get to sleep and stay asleep--which is probably what you've been wanting all along! After all, it doesn't help a lot to know why a person isn't sleeping if you can't do anything about it. Well, actually, it does help to know why a person isn't sleeping because the answer to how to get them to sleep rests on the why. That's why we've spent so much time talking about it. But first, let's talk about it for one more blog.
Depression, fatigue and anxiety are all common with dementia. (3/22/13) They all can lead to lack of sleep and they all can feed each other.

Depression can be situational and temporary or a chronic dementia symptom--or both. Situational depression becomes chronic when Lewy bodies attack dopamine, a chemical involved with both mobility and mood. It can also become long-lasting, as with care partners who continually feel overwhelmed. Depression can cause either insomnia or excessive sleep. In either case, one's Circadian clock will be disrupted, (Sleep Part 2) the brain will have difficulty with clean up (Sleep Part 3) and dementia is likely to become worse.

There are some fairly safe antidepressants available. In addition, consider exercise to add oxygen and openness about the dementia to decrease negative feelings. Yes, talking about sad things takes away the sting a lot more than burying them does! (4/1/16)

Fatigue is the extreme lack of sleep. (9/25/14) It can follow depression or cause it. The best treatment for fatigue is a good, calm bedtime routine and a bedroom conducive to sleep. (to be discussed in a future blog).

Anxiety is a negative emotion very common with dementia, where a person is continually being presented with unwanted changes and limitations. Negative emotions are motivators and thus sleep-disrupting almost by definition. (4/7/17) Lack of sleep can also cause anxiety as one's defenses lower. There are anti-anxiety drugs but for many, they can cause more problems than they fix. If you use them at all, insist on the smallest dose possible, monitor carefully and quit at any sign of discomfort.

The best answer to anxiety is a two step process where you first validate it. "Yes, feeling so down isn't fun." or "This whole thing is scary, isn't it?" This allows the PlwD to feel heard and their negative feelings decrease, allowing your next step to work. That's when you say and do things that cause the PlwD to feel positive. Bribes work well here, by the way! (Blogs coming up with more about anxiety and dealing with it.)

Depression, fatigue and anxiety can cause each other or all three, and so treatment probably needs to be for all three together. This is especially true for the non-drug remedies. Besides, anyone can use more positive reinforcement, everyone needs a good sleep routine and exercise and openness is also good for everyone. Doing all of it together should improve not only one's sleep but one's general quality of life.

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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Compliments: Gifts of Love

Right around Valentine's Day we start thinking about giving gifts to show our love. That's why we've interrupted our blogs on sleep to talk about compliments. Compliments are wonderful dementia tools. Actually they are just plain wonderful with anyone. A compliment, used properly, provides motivation and makes a person want to try harder, do more, be better. They make us sit up straighter, think better, and go on to succeed more. However, they are especially great with our loved ones who are in need of positive reinforcement as they lose so much of who they used to be.
A compliment is:

• A voluntarily given piece of positive reinforcement. It tells a person that their effort is something special and worthy of notice. This encourages the person to keep doing that something special even if the effort is difficult or frustrating.
• A little gift of love. It tells a person that they personally are valued, interesting, appreciated and cared about.
• A return gift to the donor. Giving a gift makes the giver feel good and compliments are no different. It just plain feels good to give a compliment to someone.

Compliments work better if:

• if they are sincere. This is especially important with PlwD. Because they are so perceptive of feelings, their BS meter is sensitive. You have to really mean what you say. Otherwise, you lose trust. Be creative. Look for things you can honestly compliment and do it often.
• if they are specific. Don't tell the person how wonderful they are--this is too general and doesn't offer enough information. Tell them how much you liked the colors in the picture they painted or how lovely that blouse looks on them or what a beautiful smile they have.
• if they are related to the task at hand. Compliments about appearance are uplifting but not when the person is more concerned about how well they are doing with their new walker or getting food from their plate to their mouth.
• when they describe how the person made your life better. "Thank you for doing the vacuuming. The room looks wonderful and I love it that I didn't have push that vacuum around!"

One great thing about giving compliments to a PlwD is that you can't give too many. If you overdo the compliments with most people, they will consider it flattery and you'll lose their trust. But PlwD process compliments a little differently. Compliment processing goes like this:

• The compliment is accepted first at face value and causes a release of the "feel good" hormone, serotonin. Yes, even bad compliments make any person feel good at first!
• Then sincerity is evaluated. This involves checking out the emotions of the giver. The compliment is not believed if their sincerity is doubted.
  
• If the compliment is rejected, negative feelings related to distrust, belittlement, and such override any positive feelings. Up to here, the processing is the same for everyone, except that the PlwD is much more sensitive to insincerity.

The next step involves abstract thinking, where a person evaluates content and motivation. This requires tasks such as doing comparisons and considering past events. The PlwD can seldom do much of this. And so:

• If the compliment passes the sincerity test, the PlwD accepts it. With concrete thinking, the brain accepts first information it receives about the compliment--the initial good feeling, which stays and actually improves the PlwD's ability to communicate.

And so, the bottom line is,

• be continually on the lookout for things to compliment 
• compliment often and 
• always mean it.

Oh, one more thing. People, women especially, often have difficulty accepting them. When you receive a compliment and you say something like "Oh, this old thing. I picked it up at Goodwill." you not only put yourself down, you invalidate that person's judgment as well as your own and take the joy out of the whole interaction.

Instead, accept all compliments with at the least a smile and a "Thank you." If it is appropriate, I like to say, "Thank you, I like it too." or even "Thank you. I felt so lucky to find it while shopping at Goodwill." Just as a compliment is a gift to you, your response can be gift to the donor, making every compliment a mini-celebration complete with a gift exchange.

Next week, back to the series on sleep, with a blog on how it's related to depression and more.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

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

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.

Sleep Part 4: Apnea

Recent blogs have been about how the brain uses sleep to keep us healthy. This blog is about how apnea disrupts a person's sleep. It is not the only disruption, of course. Previous blogs have discussed how one's internal clock and age-related issues like repeated bathroom trips can interrupt sleep.

Apnea, is a condition where sleepers stop breathing hundreds of times during the night. The autonomic nervous system (ANS) automates a person's life supporting activities such as breathing or heartbeats. We don't generally have to think about these actions. Our body just does them. Apnea can happen without dementia, but dementia, and especially LBD* weaken the ANS* so that a sleeping person "forgets" to breath. The resulting lack of oxygen in the brain wakes up the person. They start breathing again but they don't really catch up. With each waking event, the brain gets a little more behind. It needs lots of oxygen to fuel that janitorial service that works while you sleep to clear out dementia-causing debris. (Sleep, Part 3) With the brain still clogged, dementia symptoms can increase. (Think about how foggy you feel after a sleepless night!) Thus, it is a vicious circle. Dementia may cause apnea and then apnea makes the dementia worse!

Apnea is treatable but a PlwD* may not be able to tolerate or accept the treatment, which usually involves wearing a CPAP* mask while sleeping. Without an understanding of why it is needed, the PlwD will seldom leave this strange and annoying device on long enough to get used to it and find out how much better they sleep.

Doctors sometimes prescribe sedatives to help a person get to sleep initially while wearing the mask, but that is seldom an option for anyone with dementia, and especially anyone with LBD. A milder anti-psychotic like Seroquel or a mild anti-depressant like Welbutrin might help, but they are not always an option either. Some people tolerate these drugs and some don't. Besides, waking up and going back to sleep--with the mask on--is the real hurdle. It can't be fixed over and over with drugs.

In an online forum, a care partner told of how her loved one becoming very disoriented when he woke up with this strange contraption on his face. Another group member responded, "At this point (and condition) of that good man's life, I just wouldn't try to get him to use it. There will be enough things to cause him panic, distress, and discomfort in how he will be spending his life now, without adding a CPAP mask to what he will be going through." The group member has a point. Besides being a confusing irritation to the PlwD, trying to do something so difficult is also distressing, and often sleep-depriving, to the care partner as well. Is the high cost in peace and sleep worth a benefit that is limited because the mask comes off over and over?

Perhaps, this is an example of when a care partner must stop and re-evaluate their goals. There comes a time in the care of a PlwD when care goals must change from improving function to choosing comfort. A CPAP mask is actually very good for improving function--it can greatly improve clarity if used properly. But if the PlwD's dementia is so advanced that they can't use it properly, it is probably more of a burden than help. The changing of a goal from function to comfort is not easy because it signals the beginning of the end. However, it doesn't have to happen all at once. With each treatment and each activity, a care partner gets to make a separate decision. Some efforts at maintaining function can last much longer than others. Using or not using a CPAP may simply be the first decision of this sort that comes along.

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

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
ANS: Autonomic nervous system
CPAP mask: Continuous positive airway pressure mask
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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.