The Many Faces of LBD, Revisited

Since we published this blog two years ago, all that has changed is some research that verifies what we said in the first place! However, many new readers likely haven't seen it and so here it is with updates.

Some say that if you put Alzheimer’s disease (AD), Parkinson’s disease (PD) and schizophrenia in a bag and shake them up, you’ll get Lewy body dementia (LBD). But that’s not all; add sleeping disorders and autonomic nervous system dysfunctions and you’ll be closer to describing this multifaceted disorder. However, today we’ll only talk about the first three and save the others for later.

LBD is similar to Alzheimer's, in that it is a loss of cognitive abilities. However, AD folks tend to lose memory skills first. They forget words and things. LBD folks lose executive skills first. They become unable to think, do sequential tasks, plan, or make decisions, judgments or choices. Even more important, LBD folks may have severe drug sensitivities to drugs that Alzheimers folks can usually take with comparative safety.

Concern: These two dementias often occur together. Since AD is most common, someone with both disorders will most likely be diagnosed first with Alzheimers. Thus LBD’s severe drug sensitivities may not be discovered until the damage is done.

Update: This is still true. Many family practitioners especially, view all dementias as very similar and see little need to burden their patients with the time, effort and money involved with a referral to a specialist. Insist on seeing a neurologist who specializes in dementia or a geriatric psychiatrist.

LBD is related to Parkinson's. There are two types of LBD. Like PD, both are caused by Lewy bodies in the brain. When dementia starts first, this is called Dementia with Lewy bodies (DLB). They may never have major mobility problems and are the ones most likely to be diagnosed with Alzheimer’s disease. People who develop PD first and then go on to develop dementia symptoms are said to have Parkinson’s disease with dementia (PDD).

Concern: Drugs that improve mobility decrease cognition. When a person has PD, they usually see a movement specialist who may view the dementia as an unavoidable symptom of advanced Parkinsons rather than a possible side effect of the PD drugs. When given a choice, caregivers will almost always chose cognition over mobility for their loved ones, even when it means more work for them. They may not get this choice with a movement specialist.

Update: PD specialists are much more aware of the dementia and drug sensitive issues than they were two years ago. For one thing new research is showing that mild cognitive impairment is actually present at PD diagnosis 25% of the time. Identifying this makes the need family oriented preventative care all the more important. Avoiding Lewy-dangerous drugs, managing stress and living a generally healthy lifestyle can greatly extend the time before dementia.

LBD is sometimes compared to schizophrenia because perceptual dysfunctions like hallucinations and delusions are so common and because they tend to very start early in the disease process. In fact they may be the first dementia symptoms, although they are seldom recognized as such until other more cognitive symptoms such as the loss of executive skills appear. One big difference is that people with schizophrenia often hear voices telling them what to do, while LBD hallucinations almost never include voices at all.

Concern: When acting-out behaviors start before more recognizable dementia symptoms, people may see a psychiatrist first. The behavior management drugs most used by psychiatrists are those most dangerous to LBD folks. Even one dose may cause serious, permanent motor or cognitive problems.

Update: Clinicians have now formally identified a type of LBD that starts with behavioral problems like hallucinations and delusions. Families with someone who begins to show such symptoms in their 50s or later should consider LBD even if no other symptoms are present.

The bottom line is that when any of the above symptoms are present, everyone involved should be aware that LBD could also be present, no matter what a person’s diagnosis. If you are wrong, no harm is done. If you are right, you may avoid the damage that can come with LBD’s drug sensitivities. You may also be able to identify “inappropriate behavior” that is alienating co-workers, family and friends as possible early LBD related acting-out behavior. Naturally, you should share your observations and concerns with your loved one’s physician and if appropriate, ask for a referral to a dementia specialist.

Update: The bottom line hasn’t changed.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Drugs, Part 7: Dementia Drugs

The PD drugs discussed last week and dementia drugs have conflicting actions. That is, drugs that improve motor function are likely to impair cognitive function. Conversely, drugs that improve cognition are likely to decrease mobility.  In each case, families and physicians have to find a balance of treatment that works for each person. Last week’s blog discussed first half of this balancing act. This blog is about dementia drugs, the other part of this balancing act.

Drugs used to treat the cognitive symptoms of LBD have been used with Alzheimer’s for many years. Research has shown them to be even more effective with LBD. However, due to the slowness of our drug accrediting system, only a few are approved by the FDA for treatment of PDD and none for treatment of DLB. (See the May 17, 2013 blog for the difference/similarity between PDD and DLB.) Lewy-savvy physicians regularly prescribe these drugs to treat LBD. These drugs treat all LBD symptoms, not just cognition. They act in one of two ways:

Acetylcholine preservation:  Aricept, Exelon and Razadyne are all cholinesterase inhibitors (AChEIs). They inhibit a chemical that moves acetylcholine out of the brain cells.  Only Exelon has been approved by the FDA for use with PDD. People often have the following concerns about these drugs:

Glutamate preservation: Namenda acts to preserve the chemical glutamate, which also helps cognition.  It doesn’t interact with PD meds the way AChEIs do, but it is usually less effective alone. However, it can be used with the AChEIs to improve their effectiveness. (Drugs with similar actions cannot be used together safely. Because Namenda acts on a different chemical, it CAN be used with other dementia drugs and that has been its main value so far. Like other dementia drugs, it requires live cells to work.

Concern: These drugs only last a few years and so I don’t want to start until I really need them.

• Fact: It is true that once a nerve cell is so weak that it can no longer produce acetylcholine, these drugs are not effective. However, AChEIs do not damage the cells; the Lewy bodies do that. AChEIs neither fight Lewy bodies nor protect the nerve cells. They simply extend the cells ability to function by preserving acetylcholine.  These drugs may not be very effective with MCI, but once dementia appears, they can improve one’s quality of life.  Starting them early usually means that they will be useful longer than if you wait to start them when your loved one has fewer functioning brain cells.

Concern: I’ve been told they have serious side effects like nausea, diarrhea, vomiting and other GI problems.

• Fact: Oral doses of these drugs can cause serious GI side-effects. However, both Aricept and Exelon come in patches, which eliminates most of these symptoms.

Concern: They are expensive. I’m afraid we won’t be able to afford them.

• Fact: These drugs are expensive. However, some companies now sell larger doses that cut down the cost considerably. Even if you don’t need the larger dose, you may be able to cut a larger size pill in half. Patches should not be cut in half. Some companies offer discounts to people who meet their criteria.

Concern: I have PD. Can I take these drugs? Won’t they increase my PD symptoms?

• Fact: They may. Since all AChEIs work to improve the level of acetylcholine, they change its ratio to dopamine and thus, may cause motor dysfunctions. You will need to work with your physician to find a happy medium between mobility and cognition. 

Concern: My father has Active Dreams. Will these drugs help with these?

• Fact: All of these drugs treat LBD’s symptoms in general, which includes Active Dreams and other acting-out behaviors. 

Summary: These drugs can improve cognitive function and other LBD symptoms but they may do so at a cost of decreasing mobility. They also lose effectiveness as live brain cells decrease. Decreasing stress and behavior management may work equally well and be effective longer.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

Part 6: LBD and PD Drugs

We could call this blog and the next one “The Balancing Act” because they are about two groups of drugs whose actions are polar opposites of each other. Today’s blog is about PD drugs. Next week’s will be about dementia drugs. Be sure to read both blogs—they go together but there was just too much information for a single blog.

No drug will cure PD or LBD—or any other neurological disorder for that matter. However, they do treat the symptoms and that adds to one’s quality of life. Both groups are well known to LBD families, especially those with PDD, where the dementia was preceded by the motor problems of Parkinson’s disease.

Lewy bodies attack brain cells and extract chemicals the brain cells use to transmit information (neurotransmitters).  In the mid-brain, they remove dopamine, needed for good motor functioning. In the cerebral cortex, they target acetylcholine, needed for good mental functioning. These two chemicals operate on a ratio system. If the level of acetylcholine is higher than that of dopamine, the body acts as though the dopamine level is too low—with poor motor functioning. Conversely, if the level of dopamine is higher, the body acts as though the acetylcholine level is too low—with poor cognitive functioning.

PD meds that are too strong will improve mobility but decrease cognition.







Dementia meds that are too strong will improve cognition but decrease mobility.


Drugs used to treat PD act to change the dopamine/acetylcholine ratio in four ways:

Dopamine replacement: Sinemet has been the most commonly used PD drug for years. It effectively controls motor symptoms with few short-term side effects. However, its long terms side effects such as muscle rigidity and confusion can be serious.

Dopamine copying or mimicking: Requip, Mirapex and Neupro are in a newer group called dopamine agonists.  They cause fewer long term problems and are now usually prescribed first with Sinemet added, if needed, for better control.  Short term side effects include increased confusion and hallucinations. These drugs are not recommended for anyone with dementia.

Dopamine preservation: The following drugs all act in various ways to preserve the level of dopamine in the cells.  Physicians usually prescribe these weaker drugs to boost the effectiveness of Sinemet.

Symmetrel has side effects include increased psychiatric symptoms and anxiety. It is not recommended for anyone with psychiatric symptoms (or LBD-related symptoms such as hallucinations or delusions.)

Eldepryl and Azilect are new, still controversial, drugs. They don’t appear to have any serious cognitive side effects.

Tasmar and Comtan are drugs that inhibit a chemical that helps to move dopamine out of the brain cells. They do not appear to have any serious cognitive side effects.

Acetylcholine blocking: Cogentin and Artane are anticholinergics that maintain the balance by blocking acetylcholine and preventing it from being effective. Motor functioning may improve, cognitive symptoms will likely increase.  These drugs are rarely used today.

The bottom line is that PD drugs strong enough to improve motor function tend to increase dementia symptoms. Next week’s blog will explain how dementia drugs strong enough to treat dementia may increase PD symptoms. Families and physicians usually have to look for a happy medium, giving up some mobility to maintain cognition or vice versa. Most families opt for more cognition.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

New Books about LBD

A couple of books are coming out soon that might just be good competition for A Caregiver’s Guide to Lewy Body Dementia. Both are resource books rather than the personal stories that most books about LBD have been up to now. Both are by knowledgeable physicians and both are directed more towards the family than the medical community. Click on the book to go to Amazon and learn more about it.


Making the Connection Between Brain and Behavior, 2nd Edition. Coping with Parkinson’s Disease by Joseph Friedman, MD. This book is due out on July 23rd.  Dr. Friedman is a member of the LBDA Scientific Advisory Council. I’ve read parts of the first edition of his book (published in 2006) and found it excellent, if dated. Dr. Friedman’s writing is clinical enough for professionals but fairly easy to read by families as well.  You can order this book from Amazon now for $13.63 and they will send it to you as soon as they get it in.

Dementia with Lewy Bodies and Parkinson’s Disease Dementia: Patient, Family and Clinician Working Together for Better Outcomes, by J Eric Ahskog, MD, PhD. It is due out in September and is already listed on Amazon. Dr. Ahskog has worked at Mayo Clinics for over 30 years and so he has that experience to draw from. I reviewed a previous book, written in 2005 (The Parkinson’s Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications). I found his writing is clinical but still easy enough for the lay person to understand. That book was aimed at the medical community as well as the family and I suspect this new one is too. It is pricy for caregiver books, almost $28, but very cheap for a haredcover textbook. Jim and I believe it is worth considering.

We’ve added two other books to our LBD Book Corner as well:


Twice a Child by Ann Elia Stewert came out in May. It is a novel about an 85 year old man with dementia, loosely based on her father, Poppy, who had LBD like symptoms. The Kindle version is only $4.99, and that’s what we’d recommend you choose if you can, for non-reference books like this.


Going Gentle into the Night by Sandra Ross also came out in May. This is another personal story with, Ms. Ross says, information that a caregiver can easily read and use.  It is great to see so many of these books appearing! This book costs $14.94 for paperback and $4.99 for the Kindle version.

Paper vs Kindle. We recommend paper when buying a book like the top two. You will likely want to refer to these books often, highlight information and write in the margins. However, for a good read, like most of the personal stories about LBD, Kindle versions are great—if you have an e-reader, of course.

LBD and Social Security Disability Benefits

LBD can strike early, sometimes well before retirement. When someone in their 40’s, 50’s or even early 60’s becomes unable to work due to issues related to this disorder, the loss of a pay check can be devastating. There may still be children at home or in college, house payments, or any of the many other expenses that a person with an expected regular income generates. If this fits you or someone you know, Social Security Disability benefits can help. In the past, it has taken up to two years between applying and getting the benefit—if you get it at all. This has changed, and you can often get benefits quickly. However, it is imperative that you apply properly. Ram Meyyappan has volunteered the following article to guide you.

Lewy Body Dementia is one of the conditions that qualify under the Social Security Administration (SSA)’s Compassionate Allowances guidelines. This means that applicants who apply for disability benefits due to this condition can be qualified for benefits in less than two weeks.

In order to qualify for Social Security Disability benefits due to a diagnosis of Lewy Body Dementia under the Compassionate Allowances program, , you must:

• Have documented clinical evidence of progressive dementia from your treating physician, neurologist, or psychiatrist that documents progressive dementia.
• Document progressive loss of functional ability via an Activities of Daily Living (ADL) report or similar report completed by a caregiver or family member.
• Include the above information with your claim for Social Security Disability benefits.

SSI and SSDI Benefits. There are two different types of programs available for applicants suffering from Lewy Body Dementia:

Social Security Disability Insurance (SSDI): To qualify for SSDI benefits, you must have earned a certain number of work credits during your previous work history. As a general rule, you must have worked five of the past ten years in order to have enough work credits to qualify. If you do not have any work credits or do not have enough work credits to qualify for SSDI, you may be able to qualify for SSI benefits.

Supplemental Security Income (SSI): This is a needs-based program. In addition to being determined disabled by the SSI, you must meet certain financial requirements. In order to qualify, your income must not exceed $710 as an individual or $1,066 per month as a couple. You must also not have more than $2,000 in assets as an individual or $3,000 in assets as a couple. If you can prove that you are disabled and you meet the financial criteria, you can be approved for SSI payments regardless of your work history.

To apply for Social Security Disability benefits, go to your local Social Security Office or fill out the online application at the SSA’s website (http://www.socialsecurity.gov/pgm/disability.htm). When filling out the application, make sure that you are as detailed as possible in your answers. These answers will help the SSA determine whether or not you are actually disabled. Make sure that you include your physician’s documentation and caregiver’s ADL report to expedite the application process.

If you are denied Social Security Disability benefits, file an appeal. Most Compassionate Allowances cases are not denied, but it has been known to happen due to improperly completed claim forms or a lack of medical evidence. Consider retaining the services of a Social Security Disability attorney at this time. The appeal process consists of a reconsideration request, which is almost always denied, and a disability hearing, which is held before an administrative law judge. You will want an attorney representing you at this hearing. Statistics show that applicants who pursue the hearing process with legal representation are more likely to be awarded benefits than those who try to represent themselves.

Article by Ram Meyyappan
Social Security Disability Help
For more information on Lewy Body Dementia and Social Security Disability, please visit:
http://www.disability-benefits-help.org/compassionate-allowances/lewy-body-dementia-and-social-security-disability


http://www.disability-benefits-help.org/compassionate-allowances/lewy-body-dementia-and-social-security-disability

LBD Cousins and Companions

The last two blogs have been about the Lewy Body family: Parkinson’s disease (PD), Lewy body dementia (DLB and PDD) and REM Sleep Behavior Disorder (RBD or Active Dreams). This one is about some “cousins” and some common companions. These two disorders are cousins--that is, they are related to LBD in some way.

Attention Deficit/Hyperactive Disorder (ADHD) is a mood disorder that attacks young children is a strong predictor of LBD when it perseveres into adulthood. Hyperactivity, poor attention skills and impulsivity are the most common symptoms.  Like LBD, this disorder depletes brain cells of needed chemicals. See our 12/7/12 blog for more about this disorder and its connection to LBD.

Multiple System Atrophy (MSA)  is related to the LB disorders because it is also believed to be caused by damaged alpha-synuclein proteins. It affects men and women equally, primarily in their 50’s. Like Lewy body dementia, MSA attacks movement and the autonomic nervous system. However, it causes neither dementia nor the perceptual symptoms like the delusions and hallucinations that lead to acting-out. LBD and MSA also have other risk factors in common such as Active Dreams. In fact 90% of PwMSA will experience these sleep disturbances.

LBD appears alone only 5% of the time. Autopsies usually show evidence of two or more dementias, even when the symptoms were specific to only one. The most common dementias are:

Alzheimer’s Disease (AD). You can’t talk about LBD without mentioning Alzheimer’s. DLB, the type of Lewy body dementia that starts before motor dysfunctions do, is often diagnosed first as AD. In fact, until recently, it almost always was. Even PDD was diagnosed as Parkinson’s with Alzheimer’s until the late 1990’s. With AD, damaged tau and beta-amyloid proteins kill off neurons generally (rather than selectively as Lewy bodies do) and therefore, the damage is more complete—no fluctuations. Also, AD’s damaged proteins tend to stay in the cerebral cortex—they don’t migrate to other areas of the brain as Lewy bodies do. Thus you will often see impaired cognitive abilities, especially memory, with a fairly healthy body until late in the progress of the disorder, when so many brain cells are dead that anything may be impaired.

Frontotemporal Dementia (FTD).  Although this disorder is often misdiagnosed as LBD, it is caused by an abnormal tau protein, and thus is therefore more closely related to AD. It is the most common dementia for people under 60 years of age—even more common than Alzheimer’s. This disorder affects one’s ability to empathize, making a PwFTD appear unfeeling and selfish. As with LBD, thinking errors and delusions are common. However, there are fewer physical or memory problems. This, along with its early onset, makes it difficult to identify and it is often not diagnosed as anything but a personality defect that the person is unwilling to change. Like LBD, it is most common in men. However,FTD is not likely to accompany Lewy body dementia.

Vascular Dementia (VaD) or Multi-Infarct Dementia (MID). When a series of small strokes (infarcts) deprive the brain of vital oxygen, VaD symptoms appear. Disorientation in familiar locations, walking with rapid, shuffling steps, incontinence, laughing or crying inappropriately, difficulty following instructions, and problems handling money may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.  It often appears as a third dementia in autopsies but may not be recognized in life because the symptoms are so similar to other dementias. Even the strokes that cause it may go unnoticed because they will appear as simply a few “bad” days, a fluctuation that is common to LBD.

Mixed Dementias. Alzheimer’s is the most common dementia to accompany DLB. It may also accompany PDD, but much less often. Frontotemporal dementia and VaD are also common with both types. Therefore, when you see symptoms more common to Alzheimer’s, such as wandering, it is probably because AD is actually present. A sudden drop in functioning may herald the presence of VaD, especially if the functioning does not return to previous levels.

More About the LBD Family

Last week’s blog discussed how Parkinson’s disease and two types of dementia are all members of the Lewy body family. This week expands on that with a more scientific view. Also, new research has suggested another member of the family, REM Sleep Behavior Disorder.

Damaged alpha-synuclein proteins clump together to form the microscopic round deposits called Lewy bodies. Unlike Alzheimer’s damaged proteins, found only in the cerebral cortex, Lewy bodies can be found in many areas of the brain. Besides dementia, these damaged proteins can cause motor problems, autonomic nervous system (ANS) dysfunctions, perceptual problems, mood disturbances and more, depending on where they are in the body.

At present, identifying the presence of Lewy bodies other than by their symptoms is difficult but that is changing. Brain scans are getting more accurate and researchers are actually finding Lewy bodies in other, more easily accessed areas of the body, like the gastro-intestinal (GI) tract.

Alzheimer’s damaged proteins are thug-like, attacking and killing whatever neurons (brain cells) they touch. Lewy bodies are more selective, choosing only those neurons that contain certain neurotransmitters—chemicals that the cells need to function properly. They extract the chemicals, leaving the cells weakened and eventually dead. The targeted neurotransmitters vary, depending on the area of the brain.

Parkinson’s Disease. In the mid-brain, Lewy bodies extract the chemical dopamine, instrumental in fine motor control. This results in the motor symptoms of Parkinson’s disease. Although PD starts out as a movement disorder, other symptoms appear the disease progresses. One of the most distressing is dementia. (See our 6/15/12 and 10/12/12 blogs.)

Lewy Body Dementia. While this term was once synonymous with Dementia with Lewy Bodies, it is now an umbrella term that defines both types of dementia caused by Lewy bodies: dementia with Lewy bodies (DLB) and Parkinson’s disease with dementia (PDD).

Dementia with Lewy Bodies (DLB). Dementia is defined as a loss of cognitive skills such as memory, thinking, or impulse control, severe enough to interfere with functional ability or activities of daily living. Such losses occur when Lewy bodies in the cerebral cortex target the chemical, acetylcholine. When no PD is involved, the resulting disorder is called Dementia with Lewy Bodies.

Parkinson’s Disease with Lewy Bodies (PDD). When someone with PD develops dementia, it means that the Lewy bodies have traveled from the midbrain to the cortex. Both dopamine and acetylcholine are targeted, which causes both motor and dementia symptoms.

People with PD (PwPD) are a ready-made group of people at risk for dementia. Therefore most of the subjects in the growing pool of research about early- and pre-Lewy body dementia are PwPD. However, it is important to remember that LBD doesn’t have to start with Parkinson’s. It can skip the PD and go right to dementia—and then of course, it’s called Dementia with Lewy bodies. Even so, since two types are so similar, almost everything researchers learn about PDD and its precursors, we can also apply to DLB, that is, to LBD in general.

 REM Sleep Behavior Disorder (RBD). Caregivers sometimes call RBD “Active Dreams” because the chemical switch that prevents movement during normal dreams is damaged. While RBD has been known to appear in childhood, it is more common after 50. A PwRBD can be very active, thrashing their limbs around, talking and even walking in their sleep. (See our 11/2/12 blog.)

Although RBD can occur alone, it is very common with PD and both types of Lewy body dementia. When researchers autopsied brains from people who died with RBD, they found Lewy bodies even when no other LB disorder was present.  Thus we include it here as a Lewy body disorder, usually the first one to appear.

Next week’s blog will be about disorders related to LBD and some lookalikes.

The Value of Music with Dementia

Music wakes up memories and increases alertness, with the effects lasting long after the music is over. It has been used successfully with Parkinson’s to improve motor control, with better results than with physical therapy. Listening to music has helped people who seldom talk to speak up surprising well. Music also fights depression, a common Lewy symptom.

Music, memories and emotion link together in the prefrontal cortex of the brain. Because different dementias affect this area differently, responses to music are different too.

Alzheimers: The prefrontal cortex is one of the last areas to atrophy. Thus, music can serve as a connection between emotion and memories until very late in the dementia journey. Even after the ability to communicate is damaged, people with AD can sing, and even play instruments.

Frontotemporal dementia (FTD): This area of the brain is one of the first hit and so music isn’t nearly has helpful for people with FTD. They no longer have emotions with which to connect the music.

Lewy body dementia: PwLBD never completely lose their ability to feel emotions and like PwAD, appear to be able to experience that feelings/past experiences connection that music provides. Caregivers report that their loved ones will perk up and even sing when they hear a familiar song.

While a professional music therapist can be helpful, a lay person—caregiver, or staff—can also provide music therapy. Consistency is the important factor. Make it a regular part of your loved one’s day. As with everything that helps with dementia, the earlier and the more you include music in their daily life, the better it will work. It will not cure, or even stop dementia. But it can improve awareness at the moment and increase ones quality of life.

Have songfests. Sing together, or if necessary sing to your loved one. Be as diligent about this as you are about physical exercise and good nutrition.

Be patient. Don’t expect improvements immediately. It may take several sessions to see changes.

Play familiar music. Chose music that you know your loved one likes best. Chose a variety, with some slow and some fast (but not so fast that it generates agitation).

Do not use a radio or TV to provide the music. This often becomes "white sound" or background noise that agitates rather than calms.

Do use an iPod or MP3 player with earphones and an individualized playlist. This list will differ with each person and may take a little trial and error before you get it right. Start with the most popular songs in the years when your loved one was between the ages of 7 and 19.

Make music a tool to facilitate the proper mood for an activity. Use soft, relaxing music to counter agitation. Use music with a good rhythm for movement.

You can find books of songs familiar to seniors in the activities section of our bookstore.

website: LBDtools.com
Bookstore: LBD Book Corner, Activities Section

Research News about LBD

There have been several recent research projects of interest to anyone dealing with a Lewy body disorder. Perhaps the most exciting is the news about a safer drug for acting-out behaviors. But the others are hopeful too. The APOE gene study and the intestinal studies might help us to identify Lewy body disorders earlier, so that treatment might begin even before symptoms appear. Who knows where brain mapping can take us; it may even help to find a cure! And in the meantime, the STAND test makes an accurate LBD diagnosis easier for even primary physicians. Sadly, none of these projects are available to the general public. But watch for news. Any of them could be within the next year!

Pimavanserin, a new drug. Up to now, most drugs used to manage the hallucinations, and general acting-out of LBD have been too dangerous to use safely with our loved ones. Even those that may seem to work well for many PwLBD, such as Seroquel, come with a serious warning.  Pimavanserin treats Parkinson’s disease with psychosis, i.e., the above psychotic symptoms. This oral, once-a-day drug demonstrated significant antipsychotic efficacy with few side effects. It also improved night-time sleep and daytime wakefulness.  Clinical trials are done and researchers are waiting for FDA approval. While this research was done with PD patients, the drug should work equally well with DLB, that form of Lewy body dementia which starts prior to motor difficulties.

APOE gene may also predict LBD: A clinical study done by the University of Washington (2012) found that the presence of the APOE gene, until now most closely associated with Alzheimer’s, can also predict pure LBD. Its presence predicts that there is 10 times the risk for AD compared to 13 times the risk for AD plus DLB (10 to 13). Its connection is stronger with pure DLB than with PDD (6 to 3), and there were no statistics for AD plus PD or AD plus PDD, supporting other evidence that fewer people with PDD have coexisting Alzheimers than those with DLB. The good news about this study is that therapies and especially research aimed at AD may also help LBD, since the two disorders may share more of the same root causes than previously thought.

Intestinal Studies: Researchers have found alpha-synuclein, the precursor to Lewy bodies, in the nerves of gut tissue of people who up to 5 years later, developed PD, but none, or very little in people who were healthy or had other gut disorders. This could mean that PD and other Lewy body disorders could be predicted years prior to the appearance symptoms due to Lewy bodies in the brain. Building on this research, other researchers are exploring the idea that a toxin leaks out of the intestine, carrying with it some damaged alpha-synuclein which eventually travels to the brain and becomes Lewy bodies. If this is true, researchers may be much closer to finding a way to stop Lewy body disorders before they start.

Brain Mapping: President Obama is advocating that we spend $100 million dollars on a brain mapping project and inviting other organizations and companies to invest as well. At present, we can study large populations of brain cells. Brain mapping will be a study of the brain, right down to the individual cell and cell connections. Just as gene mapping has greatly helped medical science, brain mapping will provide information that will generate treatment ideas for numerous neurological disorders, including LBD.

STructural Abnormality iNDex test (STAND) test: Briefly, this is a MRI scan that allows a physician with little LBD experience to make as accurate a diagnosis as a LBD specialist.  As yet, the STAND test is only accessible in large teaching and research centers. However, doesn’t the idea that eventually, a primary physician could order this scan and then do a good job of diagnosing LB disorders sound wonderful?

Website: LBDtools.com

A Lewy-Friendly Home, Part 2

Last week, I talked about remodeling your home to make it Lewy-friendly. That can be costly even though you save in the long run by being able to keep your loved one home longer. However, you don’t have to spend a lot of money to do many things to make your present home more Lewy-friendly—and safe.

Make walking paths that are wide, straight, direct and as free from furniture as possible.

Simplify, and remove unnecessary clutter. If you don’t need a piece of furniture or an item in a room remove it. This is both a focus issue and a safety issue. The more open space in a room, the less confusing it will be and the easier it will be to navigate without falling.

Remove area rugs. Rugs may soften a fall, but they can also cause them when a person with feet that may not work really well trip over a rumpled edge.

Pad sharp corners and edges. Swimming noodles cut in half work well for this.

Consider padding your bedroom floor. A couple of issues make falls in bedrooms especially common. One is the presence of Active Dreams, where a person may be so active in their dreams that they fall out of bed. The other is Orthostatic hypotension (OH) or low blood pressure on rising. The large foam interlocking squares sometimes used for garage floors work well. They are firm enough for easy walking yet provide some padding for falls. Try just a small area first, to see how your loved one manages.

Have lockable danger areas, with alarms if possible. Use keyed locks, not deadbolts, which can be much too easy to operate on outside doors, the garage, or anyplace with access to dangerous equipment.

Lower the hot water temperature to no more than 110 degrees, to avoid burns. Most dishwashers have an internal hot water heater and most laundry detergents now do a fine job with cold or warm water. Therefore, a hotter temperature isn't needed.

Use good (soft, non-glare) lighting. This reduces the dark areas and shadows that can cause confusion. You want to be able to see well enough to avoid falls and bumping into the furniture.

Install  a “baby” monitor. This allows you to see what your loved one is doing when you are out of the room. However, it may not not help when you aren't watching, as when you are asleep--there's no alarm.

Use pressure monitors. These have an alarm will alert you if your loved one gets up from bed or chair. You can get the kind that sounds in the same room, alerting your loved one too. If that would only confuse them or if you wouldn’t hear it there, you can get monitors with alarms that sound where you are.

Place foam swimming noodles near the edge of the bed, under the bottom sheet. This may keep your loved one from getting out of bed at night without your help.

Use a baby gate to block off stairs. Also, if you are already using a hospital bed with rails, put a baby gate at the end to stop your loved one from crawling out that way. 

You can find the mats and monitors in the Supplies section of the LBD Book Corner on  LBDtools.com.

A Lewy-Friendly Home, Part 1

Remodeling your home to make it Lewy-friendly can make it possible to keep your loved one home longer. And it is actually cost-effective. Residential care is expensive. If you can keep your loved one home just a few months, the savings will pay for the cost of the renovations. If you decide to renovate, consider the following for your bathroom:

An uncluttered, easily washable, non-slip floor that gently slopes right into the shower drain area with no barrier. This makes it easier and safer for persons with mobility issues to get in and out of the shower. It also makes cleaning the whole floor as easy as using the shower head to wash it away.

A commode chair and a hand-held shower head. Standing may not be safe. The hole in the commode chair makes it easier to wash up with little or no standing.

A toilet that is at least 16.6 inches high. If you can find one that attaches to the wall instead of the floor, that will make cleaning the floor easier.

A bidet toilet or a hand-held shower head for the toilet. If the shower is close by, you can just use a long hose. This makes cleaning up messes so much easier.Click here to see an inexpensive hand-held sprayer for your present toilet.

Grab bars in all the needed places. Don't forget the shower.

A ceiling heating lamp with a timer to keep the bathroom warm. No one likes a cold room. If you become unable to verbalize how cold the bathroom feels, you may stop wanting to use it. (Space heaters are discouraged due to their dangers.)

Bathroom doors that open out and don’t have locks. If your loved one falls in front of the door, you may not be able to open it if it is an inward-opening door as most bathroom doors are. You could also install a pocket door, if an outward-opening door isn’t practical. As confusion sets in, a person may lock their door but not be able to unlock it. If locks are necessary, use one with a keypad.

Open shelves for needed items like towels and toilet paper. Having such supplies out in plain sight and easily reached increases independence and avoids confusion.

Electrical outlets in lockable cupboards. This keeps them accessible for use now and as dementia sets in and judgment disappears, they will be out of reach.

Limited mirrors and covers for any you do have. A person whose perceptions are compromised may not be able to recognize their own reflection and be frightened by the stranger in their home. Covering the mirrors usually solves this problem.

The rest of the house usually doesn't need much remodeling except for the entry way. If you have stairs, consider adding a ramp. An attractive entryway and ramp can add value to a house and makes the transition to wheelchair use much easier. Even if a wheelchair isn't needed, ramps are easier for an unsteady walker to negotiate.

Socializing Issues and Suggestions

Casual socializing, i.e., visiting and sharing thoughts, helps to make a person feel normal—and it stimulates  the brain too. Spend some time with your loved one each day just visiting. If they are in a care facility, this will be extra important. Staff members are very good at providing physical care but they don’t have a lot of time to be sociable. Most interactions will be care-oriented or during leader-centered group discussions. Such one-way transactions do not meet a person’s need for socialization.

As LBD encroaches, socializing, and especially verbal communication becomes more difficult. Here are some of the problems you will face and some suggested fixes:

Movement issues. If there is also Parkinson’s, involuntary movements can cause self-consciousness, embarrassment and other negative feelings.

Fix: A good exercise program will help to retain movement as long as possible. Physical therapy programs like “Big and Loud” also help.

Fix: Presenting a matter-of-fact attitude showing acceptance helps your loved one deal with handicaps more easily. It also provides a model for the people you meet to follow, lowering your loved one’s anxieties even more.

Negative feelings. Feelings such as fear, frustration, anxiety and anger cause stress, which increases LBD symptoms, making the ability to socialize even more difficult.

Fix: Search out and identify what is triggering the negative feelings and make changes to decrease the triggers.

Weakened facial muscles. These can cause a low, soft voice, even when the speaker believes he is quite loud.

Fix: Programs like the above Big and Loud help to strengthen these muscles by encouraging patients to practice shouting in a fun atmosphere.

Fix: Keep your attention focused on what your loved one is saying and listen carefully.

Language difficulties. Your loved one may not be able to find the right word or may use the wrong word, often without even being aware of the substitution.

Fix: Look for non-verbal cues. These may be more accurate than words.

Fix: Use your familiarity. Caregivers who have been with their loved one for a long time will often find that they understand with very little communication-- the food they prefer, the way to situate the chair for most comfort, etc. You have probably been communicating thoughts with no more than a glance for years. Keep on doing it.

Fix: Ignore the mistakes. Do not call your loved one on their inaccurate substitutions. Or at least, don’t do it unless it is important. Usually, you can figure out what is meant. Accept that and move on.

Interpretations may be inaccurate. Your loved one doesn’t have the ability to choose a meaning for an unclear word, based on the rest of your sentence. Also, negatives may be missed. “Don’t sit” can easily be interpreted as “Sit.”

Fix: Talk clearly and avoid complex statements. If there seems to be confusion, say it again using different words.

Fix: Talk at a normal level. Shouting causes words to vibrate and become unclear. It can also cause anxiety.

Fix: Phrase your sentences positively: “Sit here” or “Stay standing.” The healthy subconscious brain tends to ignore negative prefixes to a directive—hypnotists learn that “sit” and “don’t sit” often generate the same response. Likewise, your loved one’s weakened ability to discriminate may cause these two directives to sound the same.

Thinking is slower. It can take 30 seconds or more to process a question and come up with an answer. Although this may seem like forever to you, your loved one is very busy processing and it doesn’t seem long at all to them.

Fix: Be patient. Count to 30 before expecting an answer.

Fix: Practice patience with a smile. You need to act willing, even happy to do so. No one likes to be a bother.

Distractions. LBD makes it very difficult to focus on more than one thing at a time. Anything can take the focus away from the conversation: TV, a bird flashing by outside, children playing, and so on.

Fix: Do a survey of your area before you try a conversation. Eliminate as many distractions as possible. Distractions can be varied—audio from the TV in another room, visual from a loud blouse you are wearing, movements from the wind blowing the trees outside the window, etc.

Fix: Make sure that YOU are the center of your loved one’s focus. Be face to face and use touch to keep your loved one’s attention focused on you.

Other issues. Poor hearing or poor vision make communication more difficult. Depression and apathy make it harder to make the effort to communicate. Pain, infections and other illnesses will take priority and remove focus away from communication.

Fix: If you suspect any of these have them checked. Even a healthy person can become isolated by deafness, for instance.

http:lbdtools.com

Depression, Apathy and Fatigue

These three are all symptoms that people with Lewy body (PwLB) disorders often experience. How do you know which is which? They can all make your loved one (or you!) feel so tired that they can hardly move and all they want to do is sleep.

Depression causes changes in mood, thinking, physical well-being and behavior. It generates such feelings as sadness, misery, unhappiness, anger, loss and frustration. Besides decreasing quality of life, it adds stress and decreases one’s ability to deal with illness. A person who is depressed has the motivation to improve but not necessarily the ability to do so. They will complain about being too tired and wish they had the energy to do more.

Situational depression is usually short term, caused by a distressing event. When a PwLBD’s depression doesn’t leave, or appears to get worse, it is probably not situational but is instead a neurological symptom of the disorder. Depression makes it more difficult to do tasks, make decisions or interact with others, all abilities that can also be decreased by dementia. Like LBD, it cannot be cured but can be treated. There are some Lewy-safe antidepressants which may improve cognitive functioning.

Apathy is the loss of motivation, without associated feelings of depression. It damages one’s self-starter—that extra push we need to overcome the inertia of inactivity. As it increases, it also decreases the ability to keep going.  With apathy, nothing is easy. Everything takes effort, often more effort than a person can muster up.  They may appear to have given up, accepting things as they are, voicing few complaints or wishes for change.

Fatigue is an extreme loss of energy. The loss may come from working hard. This doesn’t necessarily mean hard physical labor. If there are language difficulties, then talking can be exhausting. With motor problems, walking can wear your loved one out very quickly. Dealing with stress or illness can be tiring. Depression and apathy both deplete energy and leave a person feeling fatigued.

Negative feelings such as sadness or loss along with the presence of motivation suggest depression.
Ex: “I wish I didn’t feel so down all the time.” Or “I wish I had more energy.”

Negative feelings without motivation suggest both depression and apathy.
Ex: “I feel so down. I can't do anything. Just go away and leave me alone.”

The lack of both negative feelings and motivation suggests apathy alone.
Ex: “I don't care that I can't do that any more. Leave me alone; I just want to sleep.”

For the PwParkinson's, apathy without depression is a sign that dementia may soon appear. Consider a test for MCI.

Books About LBD, The Bad and the Good

There are more and more books out now about Lewy Body Dementia. Some are good. Some aren’t. Here is our take on a few of them:

One book we were asked about recently was Lewy Body Dementia: Causes, Tests and Treatment Options by Adam Wainwright MA, Erik Stevenson MD and Deanna R Miller RN (Apr 14, 2012).  We had great hopes for this book when it first came out. Like A Caregiver’s Guide to Lewy Body Dementia, it appeared to be a fairly easy to understand overview of LBD although its presentation is a little more scientific.  However, upon reading it, we found that other than a section on testing, most of the information is similar to that in the Guide, but not as thorough. Also, it contains very few personal experience examples, making it a less interesting read. Although this book has been out almost a year, it has only six Amazon reviews. The last reviewer, back in July, referred readers to the Guide as a better choice. We do too.

Another book we see people ordering occasionally is Dementia with Lewy Bodies by John Hewitt MA and Michelle Gabata MD (Apr 15, 2011) The under $10 price may make it attractive but the reviews are enough to keep us from spending our money. Again, there are only six and the last three give it only one-star. One reviewer describes the book as 28 pages of subject matter, an inadequate glossary, and an unexplained 94 page directory of holistic physicians. A review from a geriatrician states that the book “could do more harm than good” and says he/she could not recommend it. Reviewers also note that the LBDA is not mentioned anywhere in the book.

A third book on our “Do not buy list” is The Official Patient's Sourcebook on Dementia with Lewy Bodies, A Revised and Updated Directory for the Internet Age, by Icon Health Publications, James Parker and Philip Parker, Eds. (2002). First, too much has happened with LBD since it was published.  Secondly, it truly is only a directory of internet resources available in 2002, and not worth the high cost of nearly $30. Finally, the single (one-star) Amazon review reports that it is “more for medical students or doctors and not for the common person.” We'd argue that even medical personnel would not find this book very helpful.

On the positive side, here are a couple of books that we loved:

Living with Lewy Body Dementia (Sep 5, 2012), is written by Judy Towne Jennings, a physical therapist who shares her expertise with her readers as she tells her story. The book is worth buying just for that. But it has more. She suggests looking at the Lewy journey as an adventure and doing all you can to make your life enjoyable. She and her husband traveled and she shares many traveling tips.

We also recommend Treasures in the Darkness by Pat Snyder (Apr 6, 2012).  As Pat tells her story, she writes about early LBD and how to slow it down. She emphasizes decreasing stress and being prepared. Her chapter on renovating her home to be able to keep her husband home longer is great. Like Judy, she also encourages families to enjoy the life they have.

You can get the Guide and the last two books by going to the  LBD Book Corner, on  LBDtool.com. While you are there look around and see if there is anything else you might enjoy. Thank you in advance for doing your Amazon shopping from our website. The small fees we receive from Amazon help to pay for our work.

Website: LBDtools.com

Things I Wish I'd Done

Things I thought I knew about him but without him there to verify it, wasn’t really sure. Dates and papers I discovered too late that I’d need—and had to guess or do without. Some cost me money. Some just cost me peace of mind.

It is the same for a caregiver of anyone with dementia. Ask early on. Get it in writing. Make lists and store them in safe places. Safe and KNOWN places. Tell another family member. Share a copy with your attorney. Before my sister died, we’d done much of this and then I stored it all in a safe place. I didn’t tell anyone else where it was. After all, I knew I’d be there when it was needed. However, in the stress of her dying, the place was so safe that I forgot where it was. Luckily, she had also shared a copy of her will with her attorney. Then when we cleaned out her home, we found her papers right where I’d put them—in the back of her freezer. (That’s actually a good place to store papers by the way. It keeps them safe in case of fire and it isn’t a place thieves tend to look.)

While Lewy is still mild and your loved one is able to participate, make up your wills, and get durable powers of attorney for both financial and health care and a living will. Make lists of all legal papers for things such as deeds, insurances, military discharge, birth, marriage and divorce and show where each is kept. List all your financial holdings, including real estate, stocks and bonds, and bank accounts. Add a list of all of your digital information: the ID and passwords for bank accounts and other online websites you will want to know later. This last has become more and more important. For instance, if you don’t have a password to your loved one’s Facebook page, you will not be able to access any of the information on it nor will you be able to delete it. Once you have all this information, do not forget to share it with at least one other person. Don’t make my mistake!

You should also talk together about what should happen if you are unable to be the physical caregiver. This is usually a difficult discussion and therefore avoided. However, fulltime caregivers often die before their charges do. In other cases, they become too ill for them to care for their loved ones safely. Emphasize that such a change would be so that someone else could do the heavy lifting, thus making it possible for you to preserve your health and continue to care for him. Talking about this before it is needed will make the transition to a care facility much easier if and when it is needed. You will have a better idea of what your loved one prefers. More importantly, it will remain with your loved one in some form and decrease some of their resistance.

Snow and Disbeief

It snowed. In Phoenix. In Mesa. In sun country. I could hardly believe my eyes. We can have 90 degree weather this time of the year. What’s it doing SNOWING? Rain, oh, yes. When it rains here, it just pours down, and then an hour later, the roads are dry. Hail, yes. We usually have a hail storm once or twice a year. But snow? Never. Well, a couple of times it got to North Scottsdale, about 30 miles away and quite a bit higher. But yesterday, I was driving on Main Street in Mesa in snow. I lived in Anchorage, AK, for many years. I learned to live with it. My kids sledded, skied, made snow angels, had snowball fights, the whole deal. I drove with snow piled six feet high on the side of the road. I drove on ice covered by snow. Oh, yes, that was tricky! And I moved away to avoid the snow. I gladly gave away my heavy coat, my snow boots, my gloves. And here I am, driving in the snow again.

And why am I ranting about snow in my LBD blog? Well, because the disbelief that I felt when I saw actual snow on my windshield must be similar to what a person feels when they get that LBD diagnosis. Well, I’m sure my feelings weren’t as strong, or as dismayed, but they were definitely as unbelieving. I hadn’t planned for snow. In fact, I’d planned against it. I had a lot of things to do and NONE of them involved snow. “Why is this happening to me?” I thought. “Why am I driving in snow again? I’m not prepared. No snow tires, hey, not even very good tires, period.” And the family who gets a LBD diagnosis is saying stuff like that too: “Why us? I don’t believe it. It must be a mistake. We aren’t prepared. We have lots of things to do and NONE of them involves dealing with such a debilitating disorder.”

The snow soon went away. True, I can still see it very low on the hills, but I don’t have to drive in it anymore. And soon, it will even be gone from the hills. That’s the difference between my situation and the family with Lewy. Lewy doesn’t go away. It may recede, but it never leaves. Just as I learned to live with snow in Anchorage all those years ago, the family has to learn to live with Lewy. They learn to traverse the scary, difficult roads of delusions, choking, etc. and survive. They can even learn to make snow angels, that is, to find enjoyment. The difference is that eventually, I escaped. You don’t escape from Lewy. You have to play it out. That’s where the similarity ends.

Support is Where You Find It

Ursula has been so generous about letting me use her story and now I’m going to be even more intrusive. I’m sure you’ve wondered about the baby’s father. He’s there, back in Europe, but he hasn’t been able to accept the idea of a baby. Their story reminds me so much of caregiver’s stories about those relatives that resist the idea that their loved one might have LBD that I asked to tell it.

They were both successful journalists, traveling all over the world for their stories. Children weren’t an issue--Ursula didn’t think she could get pregnant. And that was all right. She was 37. She loved her job. She loved spending time with (we’ll call him Jack) when she was home. Life was good. But then, she did get pregnant. As the baby grew inside her, Ursula became dedicated to being a parent. Jack pretended nothing had changed. When, at about 6 months, the doctor told her she was risking a miscarriage if she continued working, she quit and started living on her savings. Jack just wanted things to continue as they had. He was blind to her internal changes and because Ursula still wasn’t showing much, it was easy for him to minimize the ones he did see. Ursula left, coming here, where her American family offered her the support she wasn’t getting from Jack.

As the LBD gradually changes your loved one from an independent, reasonable adult into a sometimes disagreeable, sometimes irrational, sometimes even violent, and always increasingly helpless person, you are there. You see and experienced the changes. But like Jack, others in the family may be blind to the changes, minimizing those they do see. “Oh, dad is just tired. We all get cranky when we are tired.” “No, Mom’s not seeing things. She’s just making it all up to get your attention. She’s always been imaginative.” “It was just a bad dream. See he’s fine now.” Like Jack, they are trying to keep things the same. And it isn’t working for you. Like Ursula, you feel unsupported and angry. And you hate feeling angry at people you love…but there it is.

After her difficult delivery, Ursula told Jack about it and the frustrations of being a new mom. She wanted to be able to voice her feelings of weakness, inadequacy, and pain and get understanding from him. Instead she got pep talks. “You are courageous and strong. You can do it.” She wanted him to share her extra expenses. Instead she got weak promises.

On the job caregivers often say of their resistant relatives, “They don’t understand. They tell me they are so glad I’m here, but they don’t offer practical help—money, things to make my work easier, someone to come and stay so I can get away for a while. They think they are supporting me when they tell me I’m strong, that I can do it. But that just makes me continue to feel unsupported—as though they don’t think it is as hard as it really is. I need acceptance of what is, not what they want it to be.”

Ursula did have other support: people who stepped up with practical help instead of platitudes and promises: her “American family,” her mom who flew in from Europe, and even some neighbors. She hesitated at first—she had her pride and was used to being independent. “You have your lives to live,” she insisted. But none of us would have offered if we hadn’t meant it. And so she got the support she needed—not from where she wanted it, but she did get it—or at least enough for now—and we got to enjoy her and our sweet Baby Ian.

Such help is often available to caregivers too. When caring family members, neighbors and friends offer help, it is real—offered in love and concern and shouldn’t be rejected out of pride. Take advantage of this. It may make the difference between keeping your loved one at home or not. But don’t expect them to know what you need. Be clear and concise. Ursula learned that telling her mom she needed her to get up at night when Ian cried and hand him to her to nurse worked much better than saying how much it hurt to get up and expecting her mom to know what she needed. Leave out all the whys. Those are clear enough already. And don’t worry about being able to repay; you can pay it forward eventually. Or, many cases as it was in ours, just the experience is pay enough.

It Isn't Easy

We spent last week being mom’s helpers and so I’m still in baby mode. New mom or new caregiver, there’s a lot of similarity. When Ursula became pregnant, it was a shock…she didn’t think she could. No more than an LBD diagnosis is expected. Few couples believe this going to happen to them either. It wasn’t the way you’d planned your retirement, no more than she’d planned her future as a single mom. But like Ursula, you took a deep breath, stepped up and said, “I can do it. I know it won’t be easy, but I can do it.” And you do.

It hasn’t been easy. For Ursula and Baby Ian, it’s been like learning a new and often frustrating dance. Ursula thought that with her difficult delivery a fading memory, the worst was over. But then she found that was only the start. First they had to learn the nursing routine. Then, once he finally got the hang of nursing, he didn’t want to quit. He’d found his life’s work! Her milk wasn’t in yet and so he was hungry, Hungry, HUNGRY all the time. No matter that Mom was sore, or tired and wanted to take a shower.

Ian doesn’t understand “night.” He wakes up, like all newborns do, every few hours, day and night. Already, he’s a sociable little guy and so he doesn’t want to just eat and go to sleep. He wants to be held, talked to, sung to, enjoy and be enjoyed. That’s fine during the day, but Mom isn’t getting enough sleep and she’s becoming cranky too. “How can such a little person take up so much time?” she asks.

Does this remind you of the many trials that caregivers have? The belief that the worst is over, only to find out that your journey is just starting; the continually new challenges that sneak up on you without warning? Of trying to meet your loved one’s needs even though you feel overwhelmed. And still finding that there’s more—and that it must be done now, not later, not after you are rested, but NOW. And of course, like Ursula, who’s recovering from surgery and often in pain, you have your own health issues: bad backs, sore knees, etc. We tell her, patience, patience, patience. That’s what it takes. She knows it. You know it. But it is hard to remember that when you are sleep-deprived, hurting and not at all sure of what you are doing in this new world you’ve been thrown into with little preparation.

And so Ursula frets at Ian, “I’ve checked everything. Nothing’s wrong with you. Stop crying and go to sleep.” Or “Why are you so selfish?” or “Why are you picking on me?” She KNOWS Ian is only doing his job of surviving, but especially when she’s at her wits end, it is easy to forget, and to personalize his behavior. She wants him to understand HER problems. And of course, he doesn’t. He only knows what Ian wants.

Mom and baby are the only relationship Ursula and Ian have had. If this new mom can forget that a baby can’t relate except as a baby, imagine how much more difficult it is for the caregiver of a spouse or parent. They are dealing with someone who once did understand and could relate adult to adult, someone who once was aware of more than their own needs. Caregivers use the mantra, “It’s the disease, it’s not my loved one.” And that is so apt.

Ursula is doing a great job. True, there are times when she voices frustration. But always, she is gentle with Ian and caring and with great effort, patient. Never a patient person, this last has not been easy. Likely, you can relate with this too….after all, few of you asked for your job or trained for it either. It just showed up. But like Ursula, you CARE. You love this person for whom you are responsible and there is no doubt that you want to provide the best care that you can. And that’s what it is all about, no matter what the age of your loved one.

Just Telling Isn't Enough

“Don’t rush into a room with little more than a greeting and start working with a dementia patient,” the CNA (Certified Nursing Assistant) trainer told Janie’s class. “They function at a slow pace. Too much speed and not enough information confuses them, which slows down their thought processes even more. This adds stress, which increases symptoms like delusions. So walk in the room and, with a pleasantly calm voice, let your patient know what you want to do. Ask their permission. Include them in the task. Otherwise, someone who is already delusional may feel attacked and that’s when you are likely to get hit.”

Janie remembered what her instructor said. She was late—as usual, but she walked into Ed’s room instead of rushing in the way she wanted to. She took the time to ask him if he would like to have a shower instead of just telling him it was time for a shower while getting him ready. “OK,” Ed responded with a smile. Janie smiled back, glad that her instructor’s advice was working. Ed was being more agreeable than he usually was.
Information given and permission received, Janie bent over to take Ed’s shirt off—and he slugged her in the jaw. To Janie, “have a shower” meant a whole string of events, from removing Ed’s clothing to toweling him dry. To Ed, whose LBD type of dementia made sequential thinking difficult if not impossible, “shower” had nothing to do with taking his clothes off. He perceived Janie’s bending down into his personal space as an attack.

For the overworked and rushed CNA, or for that matter, the stressed out family caregiver, taking time to explain every little thing can seem like a burden. But in the long run, it saves time, because their patients will be much more cooperative—and less combative. But as Janie learned, it’s not enough to simply explain the concept—the big picture. They need to explain each step as they go along. Let’s replay the above scene:

“Hi Ed, would you like to have a shower?” Janie says as she enters the room. With a smile on her face she waits for Ed to think a minute before he nods and says, “OK.”

After Ed answers (giving him time to process), Janie continues, “Well then, we need to get your shirt off.” (Telling him the first step of what she wants to do.) Janie waits until she is sure Ed understands what she said. (Letting him know about the shirt is a 'step.') Then she continues, “Which arm do you want to take out first?” (Including him in the task.)

Now that Ed knows why Janie is reaching for his shirt, he cooperates, holding out his left arm. As they go along, Janie tells Ed each step before she does it and includes him when she can. She never moves to the next step until she can see that Ed is with her—that his processing is “up-to-date.” Ed is less confused because he isn’t being rushed. He has a better idea of what Janie wants this time, and so instead of fighting her, he helps. Ed gets his shower and enjoys the experience. Janie is done in record time and moves on to her next patient with a feeling of success.

The first scenario is most likely to happen in a care facility where staff members are less familiar to their patients than family caregivers are and therefore can more likely be seen as attackers. However, if you are a family caregiver, you need to use these skills too. It may also fall upon you to be the “instructor” who explains these skills and the reasons for them to the well-intentioned, but not always Lewy-savvy Janies in your loved one’s care facility.

Improving Communication

LBD can play havoc with verbal communication and yet the ability to communicate is important for our well being  with our without dementia.

• Language difficulties include the inability to find the right word or using the wrong word, often without even being aware of the substitution.
  
• Weakened facial muscles can cause a low, soft voice, even when the speaker believes he is almost shouting.
• Poor thinking skills. Slower thinking can take as long as 30 seconds to process a question and come up with an answer. Although this may seem like forever to you, your loved one is very busy processing and it does not seem long to them. Inaccurate interpretations are common and negatives may be missed, with directives such as “Don’t sit” seeming the same as “Sit.”
• Other issues may impede good communication: Poor hearing or vision, and depression or apathy decrease anyone’s ability to communicate well. Pain, infections or other illnesses all increase LBD symptoms and decrease language abilities.

Negative feelings, like frustration, confusion, low self-esteem, discouragement or inadequacy, are generated by poor communication. This adds stress, which increases LBD symptoms and makes communication even poorer, with social isolation a very real risk. Here are some ways you can improve communication and help your loved one stay socially connected, healthier and happier:

• Believe. If you believe that your loved one can still communicate, you will likely be successful—if you don’t, you probably won’t be. In support of belief, researchers have long said that comprehension is among the last abilities to go.
• Make the goal about being together, not about understanding or being right. If your loved one calls you Mary and your name is Janice, don’t correct the mistake. It will probably only embarrass or confuse which adds stress—and still poorer functioning.
• Eliminate distractions. Your loved one can focus on only one thing at a time. For a successful conversation, make sure their focus is on you.
• Listen carefully. Sit or stand closely and pay attention so that you can hear their soft voice. Make sure nothing is distracting you either.
• Be alert for non-verbal cues, often much more accurate than words. Check to see if you’ve guessed right: “Do you mean….?”  You can use visual cues too—pointing, touching, smiling, etc. can help your loved one to understand you better.
• Take your time. It takes at least 30 seconds for a person with dementia to process a response. That can seem very long but if you are patient, you may be surprised at what your loved one is able to give back to you.
• Talk normally, but slowly and distinctly. Don’t shout; dementia doesn’t cause deafness. (Shouting also makes you more difficult to understand.) Do talk slowly; remember the processing time issue. Also, talk clearly. Most of us are able to make educated guesses about words that are unclear. Your loved one may not be able to do that. Use positive directives: “Stand” not “Don’t sit.”  These are easier for your loved one to follow.
• Don’t interrupt. Let your loved one complete their response. Interrupting confuses. This includes finishing their sentences or trying to provide the right word. Only do this if asked, or if they have obviously come to a stopping point.
• Limit choices and ideas: Yes or no? This one or that one? Give only one instruction at a time and don’t change subjects.  To many choices or ideas at once overloads their processing ability, resulting in negative feelings, stress and increased symptoms.
• Use humor. This is relaxing and defuses negative feelings—for both of you. Laugh at your mistakes and help your loved one laugh at theirs.
• Check for other issues. How is your loved one’s hearing? Vision? Are they depressed? Apathetic? Are they ill in some other way? Maybe some of the problem isn’t dementia?
• Use touch and affection. When all else fails, this remains. Even when your loved one doesn’t know who you are, a loving touch, a gentle tone of voice and a caring smile are still communication they can understand.