Pressure Sores

As your loved one’s physical condition deteriorates, he will spend more and more time in a wheelchair and in bed--and become more at risk for pressure sores. These are sores that develop when the blood supply is cut off to an area for more than two or three hours. That becomes an issue when a person cannot move easily without help. The areas of highest pressure are: The hip, lower back or buttocks, shoulder blades and spine, back and sides of head, rim of the ears, heels, ankles and skin behind the knees.

Pressure sores (bedsores) are more common in a care facility than at home. That’s because a) a person is usually less mobile by then, and b) they aren’t getting the one-on-one attention they got at home. However, they CAN happen at home, especially if a caregiver doesn't know to be alert for early signs. Even with the best of care, pressure sores are a risk for people with Lewy body disorders—or any debilitating illness.

Prevention. The first line of defense.

The surfaces. The least expensive, and possibly the best mattress for someone with limited movement is a mattress made of medical quality high-density foam. You can also cover an existing mattress with a pad of the same quality. An egg-crate foam pad does not provide adequate protection, even if it is quite thick. Other mattresses and pads are those made with gel foam, alternating air and sheepskin.  Click here for more information about all of these.

If your loved one is in a wheelchair, there needs to be a pad of similar quality there too. Click here for a good article on seat cushions. Don't forget the backs of the legs if your loved one sits in the chair with the feet raised.

Movement.  No matter what kind of surface protection you use, your loved one’s position needs to change every two to three hours. As he becomes less able to do that, it becomes your task, or if he is in a care facility, the care staff’s task. Make sure it happens. Once a pressure sore starts, they are hard to cure. This doesn't necessarily mean a major shift each time, as from one side to the other, or from side to back. It does mean that the areas of the body experiencing the most pressure need to change.

Massage. Massaging the “high pressure areas” at least once a day helps to maintain good circulation and tougher skin. More often is beneficial. Click here to go to a website that offers suggestions about the types of healing oils to use with the massage.

Nutrition. The skin needs adequate proteins and fluids to stay tough. Add healthy oils (fish or fish-oil supplements, olive oil, avocados, flax seeds) for elasticity and strength.

Observation. Even with the best treatment and the most careful prevention, pressure sores can happen. Make a point of actually looking at all the major pressure points at least once a week, and daily if possible.

“I cared for my dad for a couple of years. Checking for pressure sores was a part of our bathing process. When Dad entered an assisted care facility and bathing was not longer my job, it felt intrusive for me to look. I assumed that the staff was now checking—but apparently they weren’t. Dad developed an awful bedsore on his tailbone. It became infected and I believe that it led to his death.” Janice

Yes, the care staff should, and usually do, check. However, this are too serious to leave it to them entirely. (Remember, they have many other patients to care for, and things get missed occasionally in the best of facilities.) It may feel intrusive, both with a patient and with the staff, but a caregiver needs to be proactive. You need to look. If the skin is in good condition, say so—tell the staff how pleased you are. Let them know you do check! If it isn’t, ask that something be done immediately. Then follow up.

Treatment

Early sores. A pressure sore starts out as a mild redness that doesn’t go away. The skin may be tender, and warm or cool, compared to the surrounding skin. If you catch it then, it is easy to fix. Avoid putting any pressure on that spot until it returns to normal skin color. Additional massages with healing oils will speed the time. If the sores reappear, talk to the doctor or a physical therapist about ways to avoid this.

With broken skin: Once the skin is broken, you need to contact the doctor for treatment immediately. This will include applying a dressing that will keep the area clean and moist. Of course, there should be minimal pressure to the area until healed. Medication will depend what kind of infection, if any, is present. With deep sores, surgery may be required to clean out the dead tissue.

As you can see, pressure sores are no little thing when they are not found and dealt with quickly. A proactive caregiver can make sure that they are found early and treated appropriately.

Click here for more about pressure sores and their care.

For information about Lewy body disorders read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders

RBD and MCI Historical Timelines

The January 11th blog was a review of the timeline for how Parkinson’s disease and Lewy body dementia went from being discovered to being recognized as a disease by a few researchers, to being recognized as a disorder where Lewy bodies were present, to being a disorder caused by Lewy bodies, to being recognized by the general public. This week is a review the other two Lewy body disorders and how they became accepted as such. Notice that these timelines start much later. Also notice that at first each “disorder” was considered a symptom of LBD or of encroaching LBD before it was named as a Lewy body disorder in its own right.

REM Sleep Behavior Disorder (RBD)

1986: Dr. Charles Schenck and associates first describes REM sleep behavior disorder in an article in SLEEP, a journal published by the Sleep Research Society and the American Academy of Sleep Medicine.

2001: RBD is identified as specific sleep disorder in the International Classification of Sleep Disorders, 1st edition (ICSD-1) which allows doctors to charge insurance companies for its treatment.

1996: RBD is named as a probable symptom of Lewy body dementia. At least 50% of the time, RBD will progress into PD, LBD or both.

2009: Researchers report that Lewy bodies are always present in autopsies of people with RBD.


Mild Cognitive Impairment-Lewy Body type (MCI-LB), also called “non-amnestic MCI.”

1988: ”Mild cognitive impairment” is first used as a descriptive term coinciding with a person’s rating on a dementia scale as preclinical or borderline. (Reisberg et al)

1995: “Mild cognitive impairment (MCI)” is first used as an independent diagnostic category not linked to a previously defined rating scale. (Petersen et al)

2004: Gathier suggests dividing MCI patients into those with amnestic MCI which tends to advance to Alzheimers, and non-amnestic MCI, which tends to advance to LBD.

2010: Ferman, et al found that autopsies of all subjects with non-amnestic MCI and RBD had Lewy bodies in the cognitive and dream management centers of the brain.

2013: Mild Neurocognitve Disorder (MNI) is listed as a specific disease in the DSM-5. The DSM-5 renamed “dementia” to “major neurocognitive disorder” and MCI to the above. What do you think of this renaming? Will it fly?) For now, be aware that the old and new terms are synonymous but expect to see the old terms much more often.

The two types of MCI (amnestic and non-amnestic MCI) have not yet been formally recognized as such although researchers and clinicians appear to accept the terms provisionally. This is understandable since at this time, the kind of dementia that will follow either type can only be guessed with a moderate to fair amount of accuracy. It isn’t a sure thing.

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

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

Is Tamiflu safe with LBD?

This year we know the flu vaccine isn’t as effective as it could be. And we hear that we should get a prescription for Tamiflu (oseltamivir) immediately if we’ve been exposed to the flu or if we come down with it.

It does seem to be helpful—but only if you take it early on. In a study, the drug helped shorten the time adults were sick by 30% compared to people who didn’t take it within 48 hours of their first symptoms.

But how safe is it for our loved ones with LBD? My first guess was “I’ll bet it is pretty safe.” I was basing this on the fact that most antibiotics are safe for most LBDers. Of course, Tamiflu is an antiviral, not an antibiotic. Does that make a difference? Here’s what our research showed. We researched several sites but found the two shown here to be the most helpful. First, Tamiflu’s “Treatment for Adults”  tells us that Tamiflu is used in two ways:

• Treatment, once symptoms appear: The standard adult dose of Tamiflu is 75mg, twice daily for 5 days. To be effective, treatment must start within 48 hours of the first flu symptom. A smaller dose can be used to treat a child as young as two weeks. You might ask about the effectiveness of a smaller dose for an elderly person or someone with dementia.
• Prevention, as when you’ve been exposed, but before any symptoms appear, or for up to six weeks during a community outbreak: One dose, once daily for 10 days, or longer as prescribed. (A smaller dose can be used for a child an young as one year. Again, you might ask about a smaller dose for an elderly person or someone with dementia.

Their website also warns us that Tamiflu:

• Is not a substitute for an annual flu vaccination  We should all get flu vaccines if we haven't already. 
• Does not prevent bacterial infections that may happen with the flu. Call the doctor if you have symptoms such as sudden fever, aches, chills or tiredness. 

On other websites, including Drugs.com, we learned that Tamiflu does have some anticholinergic action--and thus, the possibility of drug sensitivity with LBD. The two issues here are strength and duration.

• Strength: The fact that it is approved for use in young children tells us that the action is normally mild. Tamiflu can cause all of those GI symptoms we relate with anticholinergics: from dry mouth to nausea (common) to urine retention (rare). On rare occasions, it has caused those neurological symptoms such as hallucinations that we relate with LBD drug sensitivity, but mainly in children. It may also cause the same symptoms in the elderly (and we can impose here, anyone with dementia) although this is apparently even more rare.
• Duration: Tamiflu has a half-life of 6-10 hours, meaning, that most of it will leave the system in less than a day. Thus, you can try the drug knowing than any unwanted symptoms will not last long. If some do show up, then given the amount of severity, you and the prescribing doctor can decide if they are worth the protection the drug provides.

And so, my first guess was about right. There is some anticholinergic action, but it is usually mild and the duration of the drug is fairly short. Therefore, given this year's especially virulent flu, if it were my loved one, I'd definitely give Tamiflu a try, If you do, monitor carefully for unwanted symptoms and consult the doctor immediately if any show up.

If you need help paying for your drugs, this website might help.

The information in this blog is for your educational purposes only. Do not use it instead of consulting a doctor.

For information about Lewy body disorders read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders

PD and LBD Historical Timeline

If you are like me, you often wonder about how people learned about a disease. Well, the next blogs will tell you a bit about the process that went into making the Lewy body disorders known. I suspect there will be some surprises. Jim, for instance, was surprised and just HOW long we've known about Parkinson's. This timeline shows why people always know about PD and are less likely to know about LBD and why we are actually right about where we should expect to be, in that regard.

Lewy body disorders are those that are a) caused by Lewy bodies and b) can advance to dementia if it isn’t already present. Starting with the one known as a disease for the longest time and working forward, these are:

1. Parkinson’s Disease
2. Dementia with Lewy Bodies
3. Parkinson’s Disease with Dementia
4. REM Sleep Behavior Disorder
5. Non-amnestic Mild Cognitive Impairment

This week’s blog is a timeline for how the first three came to be recognized as specific diseases or disorders, and then, identified as a member of the Lewy body disorder family. Next week’s blog will address the last two.

AD 175: The Greek physician, Galen, described the symptoms of Parkinson’s disease and called it “shaking palsy.”

1657: English philosopher, Thomas Hobbes, described his illness in symptoms that match what those of shaking palsy.

1817: Dr. James Parkinson, a London doctor, a published “An Essay on the Shaking Palsy,” which established Parkinson’s disease as a recognized medical condition. Parkinson's had based his book on observations of six men. He recommended that someone do further study.

1868-1881: Fifty-plus years later, Dr. Jean-Martin Charcot, the “father of French neurology,” studied shaking palsy and renamed it “Parkinson’s disease” after Dr. Parkinson.

1886: Sir William Gowers, an English neurologist, published this illustration of a man with Parkinson’s in his Manual of Diseases of the Nervous System.

1912: Dr. Fredrick Lewy, a neurologist working with Dr. Alzheimer, published a paper describing abnormalities in the brain cells of people who died with shaking palsy. Eventually, these anomalies were named Lewy bodies, after Dr. Lewy.

1976: Dr. Kosaka, a Japanese psychiatrist, described the symptoms of “dementia with Lewy bodies” (DLB). Two years later, he followed this up with autopsied cases, showing Lewy bodies in the cerebral cortex. (Dr. Kosaka is retired but is still an honorary member of the Lewy Body Dementia Association’s Scientific Advisory Council.)

1994: Dementia is recognized as a symptom of Parkinson’s—Parkinson’s disease with dementia (PDD). Prior to this, it was though to be a separate disease, usually Alzheimer’s that was co-existing with the PD.

1996: Dementia with Lewy bodies (DLB) is recognized formally as a disease. Doctors can now diagnose it and charge for its treatment. Previously, even if a doctor did recognize DLB, he/she would likely document a diagnosis of AD to simplify insurance reporting.

2005: Lewy body dementia is recognized as an umbrella term for both PDD and DLB, with the same cause and the same possible symptoms.

2006 or so: Dementia specialists go from saying that "Lewy bodies that are always present in LBD" to agreeing that they are a major cause of the disorder.

2010: LBD is recognized at the second more common degenerative dementia, second only to Alzheimer's, but the general public is still mostly unaware of its existence.

2011: Researchers suggest that Lewy bodies are caused by a combination of genetics and environment (herbicides, insecticides, etc.).

2014: The PD community prefers to say that PD is caused by the genetics/environment combination, ignoring the Lewy bodies that link PD to LBD.

2014: It’s been 18 years since DLB was recognized as a specific disease in 1996. With the diagnosis of LBD in several celebrities, including Casey Kasem and Robin Williams, the general public is becoming aware of the disorder.

As you can see from this timeline, it can take many decades or more for a disease to travel from being discovered, to being recognized as a specific disease. It usually takes about 20 years for a disease to go from being recognized scientifically to being commonly known by the general public.  We are right on track!

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

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

Resolve to be a Better Caregiver?

“Yeah, sure,” you say. “I’m already over my head in running errands and doctors appointments and staying up half the night with my loved one—and on and on. I can hardly do what has to be done. How can I be better?”

Well, the first thing is to take better care of yourself! If you are already” over your head” in caregiving, you don’t have enough help. Caregiving is NOT a one person job.

Mary, a local caregiver told her support group, “But I’ve always taken care of Alex without help. It’s been a one person job so far—and I don’t want that to change.”

The group’s response to that was to remind her that at first, it hadn't been a one person job. When Alex could share the load, the couple got along fine. But as he became less able, Mary had to take on more and more. It has changed already—from a two-person job to a two-person job that only one person was doing.

“I never thought of it that way,” Mary said. “I guess I do need to make some changes. “But,” she cried, “How can I do that? We live on a limited income. We can’t afford to waste money hiring people to do things I can do.”

“But can you do those things?" the group leader asked Mary. “Yes, you can do each one, and probably do it better than anyone else. But can you do it all? Or more to the point, can you do it all without getting sick? Damaging your back? Losing so much sleep that you become exhausted. Developing any one of these illnesses that caregivers are susceptible to like diabetes, heart problems, stroke, dementia, even death?"

“You make it sound awfully bad. Really, we are doing all right. I just feel overwhelmed now and then,” Mary said.

The group was right. It IS serious. And if Mary doesn’t stop trying to do it all, one of those problems the group leader mentioned will happen. Eventually she may not be able to care for Alex at all.

If, like Mary, you have come to realize that you need more support, here are some suggestions.

Resolve to make a small change first. Many caregivers start by having someone come in a couple of times a week at bath time. Or consider having someone do double duty—some light housework while they watch your loved one which frees you up to go shopping, or out to lunch, or both. Check into local Adult Day Care programs. These relatively inexpensive programs can give your loved one a change of scene and you a few free hours each week.

Resolve to attend a support group. This is as important as making sure your loved one takes his medicine. Maybe more! A support group helps you to know you aren’t alone. There are a lot more people just like you out there and they are willing to help you in a lot of ways. You can vent and the group will understand. You can ask questions and hear what others have found is the best facility or neurologist or treatment or drug or whatever for them and their loved one. You can learn about their experiences and how to make your tasks easier. And much more!

Resolve to ask for help. There are many organizations that can provide assistance, sometimes for free. You can find out what and where these organizations are at your local support group. If not, go on line and search. Start with Eldercare Online (ec-online.net). Family, friends, neighbors, church and members of any other organization that you or Alex belongs to may also be able to help. Sometimes help will come in the form of money to hire help. This is a great way for a distant family member to feel involved. And sometimes, help will simply be an ear, willing to listen to you vent.

Resolve to take time to be you. Take care of your physical health. Make and keep your doctor’s appointments. And take care of your emotional health too. You are more than a caregiver. You are a person in your own right. Do something to remind you of this every day, even if it is only to read an enjoyable book for a half an hour.

Remember, taking care of the caregiver is your PRIMARY job. Only then can you do a good job with your loved one!

Merry Christmas and a Happy New Year

We are taking this week off to enjoy the holidays. Today we will be spending with family and look forward to a day filled with joy, happiness and good food! We wish the same to you. After the New Year, we have a couple of blogs about the history of the Lewy body disorders planned. If you have anything you’d like to know more about, just send us a not…or write a comment.

We  want to take this opportunity at the end of the year to thank all of our readers and supporters. Without you we couldn't have written our books, or these blogs, or shared in LBD and PD meetings or presented programs about LBD in its various forms. Your stories and experiences give our work heart and depth. Your questions keep us researching and continuing to learn so that we can pass it all on.

Thank you one and all!

Helen and Jim Whitworth

We Are In This Together

As the holidays show up, the losses we as caregivers experience are often brought to the forefront. No longer can we celebrate the way we used to. Everything has to be adjusted to the needs of our loved ones. But we still have the togetherness. It may be different now too, but it is even important.

As dementia develops, it is like going into a long dark tunnel. Think about how it must feel to be heading down this tunnel that gets darker as you travel. Having someone to cling to makes the journey much less scary. You may have had a good relationship before, but your loved one was probably able to envision himself operating on his own as well. Now that may not be possible. This leads to more feelings of helplessness. Now, your presence becomes crucial. And as it does, so does the fear that you will leave. That you will not want to be tied down to the helpless old wreck that they feel they have become. This in turn leads to excessive clinginess and even to delusions of infidelity.

Right from the first, talk about this as a journey you both are on. Talk about how you are in this together, and how you are in this for the long run. Remember to put everything in positive tense. For instance, say, “I’m staying right here” not “I will never leave you.” As dementia advances, the negative adjectives get lost and he may hear, “I will leave you.”

Right from the first, develop routines and rituals. Pat Snyder author of Treasures in the Darkness) tells how when her husband John was diagnosed with LBD, she told him, “We are in this together no matter what. I want you to always remember that you have TWO BRAINS now---yours and mine. I’ll act as your second brain when your first brain is feeling sick in some way. That’s my job. Your job is to trust my brain.” Because she started this early, John was able to accept the idea. Because Pat used it often, as when he saw something scary that wasn’t really there or when he became confused, John remembered and the technique helped him through many rough spots. For example, when he recently became agitated with their paid caregiver, she reminded him that he’d just had a tooth pulled and his medicine was making him cranky. She said, “You need to use my brain right now and trust her to help you. Lewy has made you ornery!" It made him laugh and he was able then to cooperate more with the caregiver.

You can also adapt the rituals and routines you already have. For example, before Morris became ill, he and Judy had the habit of leaving notes to each other. She kept this up even after he couldn’t read. Even early on, it helped. Judy could leave Morris alone while she ran errands but his time sense was going and he’d get anxious and start calling her cell in about a half an hour. She found that if she left him a note, he’d be fine for a couple of hours. She was there, with him, in that note. Later, when he was in a memory care unit, she’s stick a note over his heart before she went home and it had the same effect. He would pat the note, nod and smile. Again, Judy was “there” with him and he was peaceful.

For more about working with dementia, read our books

A Caregivers’ Guide to Lewy Body Dementia

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