SLEEP – THE BODY’S HEALING TIME & HOW TO MAXIMIZE IT

This week, our Alternative Therapy Consultant, Regina Hucks, shares some ideas for using a variety of alternative therapies to help persons living with dementia (PlwD)get a better night's sleep. 

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the latter stages of the condition. Sleep problems are among the most difficult symptoms of dementia. Families and caregivers must be able to get adequate sleep themselves. Try to ensure regular periods of rest and regular breaks for yourself, as well as for PlwD.

Alternative Therapies benefit both the PlwD and their care partner:

• Exercise, Grounding and Balance 
• Essential oils that calm, promote sleep, alleviate pain and bring balance back into the daily / nighttime routines are natural and effective.
• Music / Sound Therapy work with specific frequencies that affect brain function and can promote sleep.

Exercise, Grounding and Balance: It’s important that both caregivers and PlwD be balanced and grounded.Set up a daily routine, incorporating the following regime:

• Try to make sure you both are getting enough exercise. Try taking one or two walks each day. If the PlwD is not independently mobile and confined to a wheelchair, by all means just getting them out into fresh air helps to ease and relax mind and body.
• Find a place where there is grass and each day, preferably morning and late afternoon, go to this place and take off your shoes…yep yours and theirs! Allow the bare feet to sit on the grass or dirt. Walk around if you can. The earth resonates at a frequency that is highly beneficial to the body helping to ground and balance the body’s systems. This action impacts the sense of touch, sight and smell. The smell of fresh mown grass, rain, flowers and even dirt, to many, can be relaxing and grounding. Connecting to nature is very beneficial.

Essential Oil Therapies to calm, aid sleep or to calm and improve energy and focus.

• Review the article on my blog regarding Touch Therapy / Massage Therapy for pictorial information on hand massages and determine what you want to accomplish. 
• For sleep, use these techniques in the evenings or prior to an afternoon nap. 
• To improve energy and focus, use them in the mornings or mid day depending on what you want to accomplish.
• Consider scheduling a hand massage in the morning before an outside jaunt or just before an afternoon nap and most definitely in the evenings before bedtime.
• Try a back rub before bed or during wakeful periods. Using this as a preventative measure helps to reset the body’s clock and get sleep patterns back on track.

The following is a list of Essential Oils that will serve to help reset the body’s timer for appropriate sleep cycles. Some should only be used at night and others during the day.

Please NOTE: Not all essential oils are alike and most purchased in stores contain chemicals that can be detrimental to topical applications and cannot be ingested. ALWAYS check the labels. Look for Nutritional Information on the label. The Essential Oils I have recommended here are safe, effective and are Certified Therapeutic Grade. Most are ingestible; use them for teas or for cooking. To read more about these oils, please click here.

If you have ANY questions about the safety or efficacy of these oils, please don’t hesitate to contact me at regina@lbdtools.com .  If you are asking for information, please include as many details about what you are seeking information for. The more I have to work with, the better the information I can give you. Also, remember to please include your email address.

The following Essential Oils can be used topically (hand or foot massage) and Aromatically (in a diffuser). Diffusing provides greater coverage and at night will help to induce longer periods of sleep.
If using topically, always use a carrier oil. I recommend Fractionated Coconut Oil in a ratio of 5 drops carrier oil to 3 drops Essential Oil, unless otherwise noted.

• Lavender will calm but may also relax so much that you may want to relegate it to nighttime or nap times, to promote deeper sleep.
• Balance  is excellent for daytime use and will promote improved physical balance as well as mental balance
• AromaTouch is an exceptional oil blend that is a mild relaxer but also aids in eliminating pain. This can be used in the daytime and at night as an analgesic in place of aspirin, ibuprofen, Motrin and Tylenol. Side Note for Parkinson’s sufferers: Mix 3 drops Aroma Touch to 5 drops Fractionated Coconut Oil and spread down the spine starting at the base of the neck down to the tail bone. I have seen up to 8 hours relief from tremors.
• Serenity  promotes deep relaxing sleep and is my absolute favorite for nighttime use.
• Lemongrass. Fresh lemon grass is often added to teas or lemonade to promote relaxation and calmness. The scent can relieve anxiety and promote restful sleep among PlwD. Try diffusing it with other citrus scents like sweet orange to boost your loved one’s energy levels and mood.
• Clary Sage is beneficial for PlwD. Added to a diffuser, it promotes better cognitive function and enhances mood. Blend it with other essential oils like Peppermint and/or Rosemary to create an herb-based scent that boosts memory and promotes a calmer, more optimistic mood.
• Bergamot is a warm floral scent that reduces anxiety and stress and encourages a calmer, more relaxed mood. The flowers are often added to tea, including classic Earl Grey blends. Add one to three drops of the essential oil to the bath, a diffuser, or combine with an ounce of carrier oil to provide the soothing benefits.
• Chamomile. Dried chamomile flowers are well known for their pain relieving and stress reducing properties. Add a few drops of chamomile essential oil to 5 drops of carrier oil, and use the blend for hand massages to enjoy the same calming benefits.
• YlangYlang reduces anxiety, boosts mood, and promotes restful sleep, making it an excellent addition to your loved one’s bedtime routine. Use it in a diffuser immediately before bed to help your loved one fall asleep easily. If they are agitated, a short hand massage with ylang ylang essential oil in a carrier oil base can calm their mood.
• Rosemary has been found to stimulate memory, making it one of the best essential oils to incorporate into a PlwD's aromatherapy blends. Combine with peppermint to stimulate cognitive function and increase energy, or blend with lavender to calm.
• Peppermint is an invigorating scent that boosts cognitive function while encouraging feelings of calmness. Diffuse it in the morning to begin the day with relaxed energy, or diffuse it anytime a PlwD begins to feel tired or agitated.

FOR PAIN AT BEDTIME, try these analgesic remedies before resorting to pharmaceuticals and especially before using a sleeping drug.

Deal with the anxiety: Anxiety inevitably accompanies pain regardless of the type and relieving the anxiety first is half the battle.

Deal with the pain: Find out where it is and if it is Joint, Nerve, Muscle or Bone Pain. Use the following combination of Essential Oils based on what is needed.

PAIN RUB: (Joint / Nerve / Muscle)

• Mix 3 drops Fractionated Coconut Oil with 1 drop AromaTouch in the palm of your hand and rub gently on the affected area.
• Next, put 2 drops Serenity into the palm of your hand and rub over the affected area layering on top of the Aroma Touch.
• (Additional carrier oil is not needed with the second layer unless the skin is exceptionally dry and it quickly absorbed the first layer.)

A PRE-MIXED ROLLER BALL FOR PAIN ANYTIME: (Joint / Nerve Bone)

• A great addition to any medicine cabinet is a pre-mix roller ball called ‘Past Tense.”Originally designed to relieve headaches and neck and head tension (which is does), I have found this particular Essential Oil blend to be HIGHLY effective on joint, nerve and bone pains. Just roll on the affected area and gently rub in!

NIGHTTIME PAIN: (Joint, Muscle, Nerve, Bone)

• Mix 3 drops carrier oil with 3 drops Lavender and 3 drops Peppermint. Rub on affected area

HERBAL TEAS and warm milk may be helpful.

SOUND THERAPY

• Soothing high frequency music (these can be downloaded free from You Tube) ie:
• https://www.youtube.com/watch?v=W3qJHIb1lyI
• https://www.youtube.com/watch?v=Yc94ZofWHBM ***
• https://www.youtube.com/watch?v=17RB5oq_yAY ***

***If using a type of high frequency music, it is best to use headphones or earbuds to gain the greatest benefit from the frequencies.

IN CLOSING: The goal is to establish a familiar daily routine that will aid in emotional and physical comfort and when the routine is disrupted for any reason, any negative emotional and physical response will be minor and limited. The use of Essential Oils and Music as two primary Alternative solutions WILL provide balance, structure, and enhanced emotional, mental, physical and spiritual comfort.

Only the last part of Regina's article is here. Do go to her blog,  Alternative  Therapies for Dementia.  and read the what you missed!

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 and Regina Hucks 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, #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

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.

Sleep Part 3: The Brain's Janitor

There's been a lot of talk about nutrients that will improve clarity by flushing things like free radicals out of your brain. But one of the best ways to do this is to sleep. That's right. Simply sleep. Well, for many PlwD*, sleep isn't so simple--see last week's blog. But it is very important for mental clarity as anyone who wakes up groggy after a poor night's sleep can attest.

Sleep is the time when the brain cleans house. The lymphatic system, which works as the body's janitor 24 hours a day can't cross the blood brain barrier (BBB). But don't worry, the brain has its own janitor, the glymphatic system. The problem is that the brain doesn't have enough power to operate it AND do other brain functions well. And it is designed to shut down many of these functions for several hours a day--a process we call "sleep." Sleep isn't the quiet, inactive time we grew up thinking it was however. A whole different set of brain functions come into play and one of them is the brain's janitoring service.

Researchers now believe that while a person sleeps, brain cells shrink. The resulting space is then filled with cerebral fluid that circulates throughout the brain and flushes out waste proteins, dead cells and other debris that builds up in the spaces between brain cells. It's like a busy building, where the janitors come in and do their work after the office workers have gone home and the halls are empty. Then when the person wakes up, the brain cells return to normal, which slows the flow of cerebral fluid to almost nothing. And so when sleep doesn't happen, the debris can't get flushed out and a person gets groggy, inefficient and can have many dementia symptoms. If a person is already living with dementia, of course this just makes it worse.

Normal sleep occurs in cycles of 75% deep sleep, which is when cleaning and restoring happens and 25% of lighter, REM* sleep, which is when dreams occur. That's why short naps may not work well. They may not allow a person to go through a whole cycle and the flushing may not start, or if started may not be complete. Ideally, you need about 7 hours of uninterrupted sleep. Now we know that few elderly folks can last a whole night without getting up to go to the bathroom a time or three! However, the good news is that this doesn't have to be problematic since people usually wake up between cycles. If the person can go right back to sleep, they can start another cycle.

You, as care partner, may have more difficulty getting back to sleep. Because you are waking up on the PlwD's schedule instead of your own, it may not be between cycles for you. In addition, you probably have to think about what you are doing more than they do. For these reasons, you may be wide awake by the time you get back to bed. Now is the time when a sleep ritual can help. Here is a simple one:

• Release all thoughts of frustration. You can't do anything about it now anyway.
• Then think a few moments about something positive, something you feel grateful about. This gets the soothing, calming chemicals flowing in your body.
• Start deep breathing. Put your hand on your abdomen and feel it rise as you breathe in and lower as you breathe out.
• With your eyes closed, focus on a point in the dark and on nothing else but your breathing. If you find your thoughts gliding off into other things, gently pull them back.

You may be able to guide your PlwD through this by saying what your are doing and encouraging them to mirror you.

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:
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
BBB: Blood brain barrier
REM: Rapid eye movement

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 2: Circadian Clock Issues

This blog is about how one's internal clock can get messed up and cause a person's sleep/wake times to be disrupted.

Sleep is the time when the body actively restores and strengthens its resources. During our deepest sleep, muscles are relaxed, allowing them to rest and be repaired. The blood supply to muscles is increased, bringing hormones and other chemicals to repair damage and normal wear and replacing the proteins needed to fuel movement.

A Circadian clock controls when these activities and other regular ones occur. From its control center very near the brain's visual cortex, it secretes various hormones at given times throughout the day and night. (Circadian is Latin for "about a day.") The hormones trigger a person to feel sleepy or hungry. Once asleep, they trigger the brain when to go into a heavy sleep where various cleaning, repair and other upkeep tasks happen, when to go into a lighter sleep (REM sleep) where memory sorting dreams occur, and when to wake up.

The internal clock maintains its accuracy in a variety of ways, but the most important is by using information from light sensors in the eyes sent via the visual cortex's non-visual sensory system. When the clock is damaged by dementia, its functioning can become inaccurate and garbled. Sleep and waking routines are disrupted. A person might get their days and nights turned around. More likely, they will wake up several times a night and nap often during the day. Of course, it is not only the PlwD's* sleep that is disturbed. The care partner's sleep is too.

The control centers for both visual and non-visual systems are very close together in an area that is often an early LBD target (think illusions, hallucinations and the like). Because of the closeness, the Circadian clock can be an early target as well, causing any of the above time regulation issues.

Of course, Lewy bodies are the only culprits. As people age, they tend to wake more often for a variety of reasons, from bathroom visits to apnea and more. The circadian clock functions in cycles of about 90 minutes each. Waking in the middle of a cycle can interfere and cause the clock to malfunction. This may cause a person to have difficulty sleeping at night, staying awake during the day or have repeated shorter periods of sleeping and waking throughout the day. None of these may provide for the deep sleep or for the dreaming sleep, both of which the brain needs for good functioning.

Circadian clock malfunctioning can cause a person to sleep a lot in the daytime, but there are other reasons for this too. With dementia, everything from thinking to moving takes more time--and more energy. Add the tremors common with PDD*, and it gets even more energy-intensive. This means that the PlwD needs more sleep to replenish their energy. It's nature's way of allowing the body and the brain the time they need to catch up and clean up. Unless the PlwD is not sleeping much at night, this is not something to stress about. Just use the time to do something for yourself--like catching up on your own sleep!

If the PlwD isn't getting much night-time sleep, experiment with nap time and bedtime routines to find the best ones for helping a PlwD fall asleep at night and stay asleep for longer periods at night. (Suggestions in a later blog.)

Next week: Sleep, Part 3: The Brain's Janitor.

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:
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: 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

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 1: The Value of Sleep

Sleep is as necessary to good health as exercise--maybe even more! An elderly or infirm person, including anyone with dementia, needs about 7 to 9 hours of sleep a day to function properly. The symptoms from lack of adequate sleep include: confusion, less muscle strength, decreased function of vital organs, pain sensitivity, diabetes risks, and a weakened immune system. Add the damage already done by dementia, which increases all of the above symptoms in both likelihood and severity, and you can see how important sleep is for our loved ones. However, LBD,* and dementia in general, also interrupts sleep with a variety of issues and so sleep isn't always easy to obtain.

Sleep is the time when the body actively restores and strengthens its resources. During our deepest sleep, muscles are relaxed, allowing them to rest and be repaired. The blood supply to muscles is increased, bringing hormones and other chemicals to repair damage and normal wear and replacing the proteins needed to fuel movement. The tremors common to persons living with Parkinson's disease with dementia (PlwPDD)* put a lot of wear on their muscles each day and so this restorative period is quite important.

Unlike the muscles and other body functions that slow down and relax during sleep, the brain is very busy. Think of it as a busy office, shut down for the night. Besides being the time for restoring used up chemicals and proteins and preparing for a new day, this is when the brain does its heavy cleaning. This has become a very interesting area for researchers. First, it was nutrition like antioxidants that would rid the body damaging "free radicals." Then came drugs that that clear away sticky clumps of plaque in the brain and improve function. So far, all the research has been with Alzheimers, but we of course hope that it works with other dementias too. Then came new research on how important sleep is for the brain's janitor work. Even the drugs need sleep to work properly!

Sleep is a part of the Circadian Rhythm, an internal clock that times various functions including sleeping, waking and secreting of various chemicals at appropriate times for repair, cleaning, relaxing, waking, and so on. When this cycle is thrown off, the body doesn't get the restorative care it needs. As people age, they tend to wake more often for a variety of reasons, from bathroom visits to apnea and more. All can interfere with the function of their internal clock. The visual cortex is often an early Lewy body target (Think hallucinations!) and so a PlwLBD can experience these issue earlier and more intensely.

Apnea is one of the conditions that can greatly interfere with sleep. Apnea, a condition which sleepers stop breathing hundreds of times during the night, is linked to memory decline itself. Its resulting lack of oxygen tends to make already present dementia worse. This lack of oxygen is what wakes a person up, so that they can start breathing again. Apnea is treatable but a PlwD may not be able to tolerate or accept the treatment.

Depression often interferes with sleep. Depression is a very common symptoms with LBD, because of the loss of dopamine, which is a feel good chemical as well as one that facilitates movement. The problem here is that some Parkinson's drugs may decrease depression but cause insomnia.
REM sleep behavior disorder is a common symptom of LBD, often showing up years before any other symptoms. Its active dreams can disturb sleep, or more likely disturb a partner's sleep. Past blog entries have discussed this phenomenon.

And finally, how do we combat all of this? How do we help our loved ones...and ourselves...get the sleep we need. The easiest answer is to take a sleeping pill, but that is probably the lest safe for anyone. There are many environmental and mental things to try. Mainly it is a matter of setting up a soothing routine, following it with relaxing thoughts and waiting for nature to take charge.

Look for more about each of these issues in future blogs.

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:
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.

Sleep and LBD

This week's blog is an excerpt from our new book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders:

For the Lewy partner, sleep is a conundrum. The healthy brain needs rest to function properly. A brain with Lewy bodies must work harder and so it needs even more rest. However, this may not be easy.

Falling asleep and staying asleep at night may be easier said than done. Sleep disturbances such as Active Dreams, sleep apnea or restless leg syndrome can interrupt sleep. Excessive daytime sleep causes sleep rhythms to change and decrease nighttime sleeping. Therefore, it isn’t surprising that LBD families clamor for a safe sleeping pill.

Sadly, most common sleep medications are strong sedatives and therefore may not be safe for someone at risk for this disorder. There are some safer alternatives however:

Melatonin. Talk to the doctor about trying this natural hormone. It triggers wake and sleep cycles and may work as a Lewy-safe sleep aid. A possible side effect is depression—another common LBD symptom. However, since the results will be temporary, it might be worth a try. If it does cause depression, try using melatonin in combination with bright lights, below, to decrease such side effects.

In addition, try these non-drug suggestions:

Daytime activity. Stay active during the day, even if it is an effort. A person who sleeps or just sits around all day isn’t going to sleep as well at night as one who keeps busy.

Short naps. Especially later in the journey, too much stimulation during the day can cause night-time wakefulness. Consider an early afternoon nap to limit stimulation.

A calm, dark, airy bedroom. Have good air exchange, and a minimal number of blinking lights from clocks, etc. The air exchange makes breathing easier. Blinking lights can trigger confusion, especially for anyone half asleep.

A set routine. As with everything else, routines help sleep come easier for the Lewy partner. Include a set bedtime and the same few low stress, enjoyable activities each evening.

Avoid evening excitement. Watch soothing TV shows and avoid anything boisterous or argumentative, or even just stimulating. Such shows can trigger Active Dreams or nightmares.

Bright lights. Have bright light exposure during the day. A bright-light box early in the morning might help to adjust wake-sleep rhythms. During the rest of the day, be around as much natural daylight as possible. Sunlight and bright-light boxes can also help depression. Warning: Be prepared with sunglasses to protect the eyes.

Medication time change. Caregivers often report that dementia drugs such as Exelon or Aricept taken in the evenings increase the likelihood of Active Dreams, nightmares and general restlessness. Ask the doctor if the time can be moved to morning. Likewise, anxiety management medications such as Seroquel may work best in the evening, when the calming effects facilitate sleep.

For more about LBD, read A Caregiver's Guide to Lewy Body Dementia or go to LBDtools.com.

Getting Asleep and Staying Asleep

Support group member Amanda reported, “Leo was up and down all night long again last night. He was sure he was late for an appointment. I tried to tell him it was 3am, and besides he didn’t have an appointment today, but he still worried. He was up again in an hour, brushing his teeth. ‘We’re late,’ he told me again. I have to admit that by the fourth time we were up, I was getting testy. ‘Go back to bed,’ I told him a bit too sharply. That worked, finally. He got back in bed and pretty soon he was asleep again. I know how important getting a good night’s sleep is for him—for both of us really. I hate it when I lose my cool. I know it’s not his fault. Surely, there’s another way?”

This is a cry for help that we hear over and over. Sleeping pills aren’t the answer. They are among those that can cause irreparable damage for our LBD loved ones. Here are some safer suggestions:

During the day:

• Exercise: Most LBD 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. (See our August 31, 2012 blog on stress reduction for a start.)
• Eliminate time worries: Don’t tell your loved one about future plans. As dementia progresses, the concept of time is lost. Everything is in the here and now. And so when 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 doesn’t seem to help, consider setting up a bright-light box, the kind used with seasonal affective disorder (SAD). Have it turn on automatically a few minutes before morning wakeup time and let it stay on for about a half hour. Follow up with exposure to natural light during the rest of the day.

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. Three are: a) Soothtube offers Youtube shows with a variety of content and soothing voices, b) Serenity Channel offers beautiful pictures and soothing music and c) PaulFromStokeUK offers beautiful music and photos scientifically designed for relaxation. He also has DVDs for sale.
• 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:

• Melatonin: This is a natural hormone that triggers wake and sleep cycles. It has been used for years as a fairly safe sleep aid, even with LBD except that it may increase depression—already a problem for our loved ones. However the depression will go away when the drug wears off and so it might be worth a try. Using bright light therapy may decrease the depressive side effects.
• 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.

Website: http://lbdtools.com