Friday, February 20, 2015

Caregiving, The Next Level

Mary’s mom is going into an Assisted Living Center next week. Mary did her homework and finally settled on the best possible place within her budget. Her days of heavy lifting and sleepless nights are over. “I love Mom,” Mary told her sister, “But I just don’t have the strength to do everything that Mom needs anymore.” Yes, Mary knows it is time, and the best thing for Mom too. But it makes Mary feel empty. Lost. Useless. Of course, she will visit and keep her mom company. And Mary knows that the paperwork and financial responsibilities remain. But Mary feels as though she is losing a very demanding job—and one that all in all, she did well. She will no longer be a caregiver.

Wrong! Mary’s duties will change, but she still has an important, and often time consuming, caregiving job. It is common knowledge that patients in care facilities who have a family member involved do much better than those who don’t. If you have a loved one in a care facility, here are some of your many tasks:

Social director. With multiple patients, care staff often have little time for for being social. Facilities usually offer group activities, such as singing, crafts, even cooking, but one-on-one contacts are the ones that are best at keeping a person alert. That’s your job. And it can be a fun one. Once again, you get to be family, instead of caregiver and patient. Also invite friends and family to come visit. As family caregiver, your are the most important visitor, but others add variety and fun.

Observer. Come at odd times to the facility to check on care. Is s/he being moved regularly if s/he can’t move easily? Are there any unexplained red spots or bruises? (See last week's blog) Are any treatments being done properly? Is s/he being taken out for exercise, social events, etc.? Are needs (bathing, toileting, dressing, etc.) being met in a timely manner? Is s/he being helped with feeding in a way that works for him? How do the various staff interact with him/her? When you see something that isn’t working, talk to the staff. You’ll get best results if you ask assuming that they care about their patients and will work with you to fix the problem. Usually they will. If they don’t go to their boss.

Medications manager. Usually there is a facility physician who is in charge of this. But it is your job to review your loved one medications regularly and ask questions. Insist that no changes be made without consulting with you first. Be very aware that during a hospital stay, medications may be dropped. If they aren’t added back upon your loved one’s return to the facility, ask why. Be especially diligent when important staff changes happen. Your loved one’s care can get lost in the cracks.

Case manager. The facility usually has one of these too. Even so, request that they consult you about any major changes to your loved one’s care. Also, you will probably still have to make doctor’s appointments and get your loved one there. Always go with--don’t leave this to staff. You still must take care of many of the insurance documents and other legal papers too. Then there are the errands to run for things that just make your loved one’s life more pleasant—lip gloss, new underwear, a book.

Emotional supporter: This doesn't change—and it is perhaps the most important task of all. Your loved one still needs your attention, your loving words. Your are the stability of their lives, the connection between what is and what was. Make a point of touching, hugging and kissing. Yes, the staff touches a lot, but it usually, task oriented. Your job is to initiate caring oriented contact, to listen, to be a sounding board for complaints, a shoulder to cry on, and a friend to laugh with.

For more information about Lewy body disorders read our books:

Friday, February 13, 2015

Music, The Great Motivator

Most of us have seen Henry on youtube. He’s this elderly gentleman who can’t lift his head or remember anything until a nurse puts headphones connected to an iPod over his ears. Henry “wakes up” and begins moving and singing with the music. Even after the music is over, he can talk clearly and intelligently about things in his past. He says music gives him the feeling of love and romance, that it makes him feel holy.

Henry’s awakening was a part of a project that provides iPods to people in nursing homes and information to all of us about how helpful music is with people whose dementia has isolated them inside their heads. The documentary this group did is worth watching. You can learn more about Alive Inside and see Henry in the trailer here, The full-length documentary is on Netflix.

Most caregivers are well aware that as thinking abilities fail, emotions remain. Music serves as a connection between emotions and memories and enhanced thinking until very late in the dementia journey. Personalized music can be more effective than any medication in helping a person reconnect with their vital essence—to come alive. Yet it is extremely inexpensive and easy to use.

Our May 2, 2013, blog goes into detail about how music wakes up memories and increases alertness. It offers several suggestions about how to add music to your loved one’s routine. Here are some ways that music can increase awareness and quality of life (
  • Pairing music with everyday activities helps people develop a rhythm that aids in the recall of the memory of this activity, improving cognitive ability over time.
  • Singing sessions engage more than just the left, more creative, side of the brain. Listening to the music activates the right, more logical, side of the brain as well, so that thinking abilities improve—for a while at least.
  • The rhythms of music can improve physical abilities and increase energy. People who can barely move become able to dance and move to the rhythm of the music. Depression often decreases and motivation increases.
  • Being able to sing and/or dance with loved ones adds a closeness that is often lacking as dementia takes away the ability to share emotions. Dancing can lead to hugs and kisses and even more memories as well as feelings of security.
  • Music can shift mood, manage stress and stimulate positive interactions because it requires little or no thinking, it doesn’t need cognitive functioning. It can calm or energize, depending on the song.

The first step for introducing music into your loved one’s life is to develop a playlist of favorite songs. Here are some suggestions:
  • Start with music from your loved one’s teenage years, through about age 25.
  • Choose the type of songs that have most importance to your loved one. For example, if church was an important part of life, add some hymns to the mix. Was opera important or not? Westerns? Mix in some instrumentals but make sure many of the songs have words.
  • Make sure the mix includes a variety of stimulating, laidback, romantic, sad and happy music. Both may trigger emotional connections.
  • Include are some “sing along” classics, that your loved one can join in with.
  • Put the music in an iPod or mp3 player with earphones. The big over the ear type of earphones is easier for the person with dementia to use than ear plugs. Use the wired type; Bluetooth connections might be too difficult to maintain. A simple music player that turns on and off with one switch is also an option for someone living at home or in their own room, where invading other people's hearing space isn't an issue.

Then the fun begins. Your loved one may respond positively soon after you put the earphones on, but if that doesn’t happen, don’t give up. It can take several sessions before a visible reaction occurs.

For more 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

Friday, February 6, 2015

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.


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:

Friday, January 30, 2015

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.

Friday, January 16, 2015

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, 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:

Sunday, January 11, 2015

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

Friday, January 2, 2015

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 ( 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!