Acupuncture, Accupressure and Massage Therapy

Several small studies have found that all of these more Eastern treatment methods work to decrease anxiety, agitation, and stress. The evidence from dementia caregivers is also positive. On the down side, results occur only with regular, sometimes daily, use and end soon after the treatments do.

Acupuncture: Treatment consists of needles inserted in strategic points on the body. Placement and number of the needles depends the conditions being treated. For dementia, the needles will often be in the head. Although the needles don’t hurt, a person must lie still for a period of time, usually 20 to 30 minutes, once the needles are inserted.

I convinced Carlton to try acupuncture to strengthen his voice. He started out going every Wednesday and right away, I could hear him better. But it didn’t last; by Sunday, his voice was weaker. We increased visits to twice a week and that carried him over. He’d been going for six months when our daughter had a baby. By then, he could miss occasional sessions and his voice stayed strong. We went to stay with her for a month so I could help out. By the time we returned home, his voice was so weak I could hardly hear him.   –Clara

Similar stories from caregivers abound, with reports that acupuncture:

• Relieves anxiety, agitation, tension and stress
• Improves sleep and speech
• Decreases anger, combativeness and acting-out

On the negative side:

• Treatment requires a trained and certified professional.
• Results are temporary. Treatment must to be administered at least weekly and the results disappear if treatments stop.
• Treatment can be expensive and is not always covered by insurance.
• The treatment’s intrusive nature might be frightening to a person who is unable to understand the process.
• Some people may not be able to lie still and leave the needles alone for the required amount of time.

Acupressure: This therapy is very similar to acupuncture except that hand pressure rather than needles stimulate the strategic points in the body. Used appropriately, acupressure appears to provide help similar to that of acupuncture:

• Relieves anxiety, agitation, tension and stress
• Improves sleep
• Decreases anger, combativeness and acting-out

Acupressure is mild and non-intrusive, which gives it some advantage over acupuncture for the average LBD family. It is:

• Easier to use and less frightening.
• Safe for non-professionals to use. Care partners can learn to do it at home and care staff can learn to provide it in residential facilities.
• Less expensive.

Disadvantages:

• The milder treatments wear off sooner. Maintaining results may require several sessions per week, often daily.
• Professionals do have more training and background knowledge and may be able to do a better job. However, acupressure is seldom covered by insurance.

Massage and touch therapy. Massage therapy, the of manipulating muscles and limbs, can treat the whole body or just certain areas. Light touch can sometimes be more effective than words.  Care partners report that it works well for:

• Relaxation and sleep improvement
• Anxiety, agitation, tension and stress reduction
• Pain reduction. Massage is especially helpful if the pain is from tense muscles.
• Direction. A light touch can sometimes work better than words to provide direction. It gently pulls the attention back to the job at hand and adds a sense of caring at the same time.

Advantages:

• Care partners can learn to do basic massage at home.
• Gentle massaging can be a time of togetherness between care partner and loved one.

Disadvantages:

• Results are temporary. They require ongoing, sometimes daily, use.
• Deep muscle massage requires strength and stamina a care partner may not have.
• A professional masseuse has more training and strength but may not be covered by insurance or may be covered only for a limited time.

Summary: Although acupuncture may work better for stress reduction and related issues, its disadvantages may make it less attractive to the home-based caregiver than acupressure or massage. With some basic training, either of these therapies may be useful for treating stress related issues that otherwise might require medication. If medication is still required, the dosage needed will likely be decreased.

Non-drug Therapies for LBD

The difficulty with drugs used by modern medicine to treat LBD’s most bothersome symptoms makes it common sense to search for another form of treatment. And there are many types of non-drug therapies, some more effective than others, but all worth a try.

When working with a progressive disorder like LBD, learning to use and maintain still present abilities well is the goal. While this will not improve the basic ability, it often does result in improvements, as when a person can move more easily after physical therapy.

Used early in the journey, these therapies can delay the appearance of dementia and other LBD symptoms. Used later, after LBD is present, these same therapies continue to work their magic, decreasing the severity of symptom and the acting-out that often follows.

Whichever combination of the therapies below you choose, their function is to help make the journey with LBD less stressful and your lives more enjoyable and fulfilling. Used regularly, they can definitely improve quality of life for loved one and caregiver as well. However, they are not cures. Learn to judge a therapy’s success by how much your loved one maintains their status quo, not by how much they improve.

Physical therapy is familiar to most people with PD. While its primary purpose is to improve movement, any kind of physical exercise helps to maintain cognitive abilities as well.

Occupational therapy focuses on helping a person retain their daily living skills and maintain an active life.

Speech therapy helps a person improve their ability to speak and swallow.  This can help in addition to the suggestions in our 12/28/12 blog.

Music therapy touches senses and emotions and can sometimes reach a person when nothing else will. Other therapies and activities often include music. See our 5/2/13 blog.

Psychological counseling is valuable in helping individuals, couples and families deal with the losses and changes involved with a LBD diagnosis.

Spiritual therapy is the conscious inclusion of your own spiritual and religious beliefs in your lifestyle and in other therapies. Don’t overlook the support it provides.

Aromatherapy relies on the sense of smell and can be helpful with the Alzheimer’s patient but sadly, isn’t as useful when Lewy bodies are involved. They tend to destroy one’s sense of smell and make this type of therapy ineffective—except for the care partner, who may find it quite soothing.

Pet therapy is the use of pets to decrease stress and add comfort, support and safety. See our 4/27/12 blog.

Hospice is for Life not Death

No, it isn’t the end of the journey yet. But it may be time to start using the help that hospice offers. To qualify, a physician must certify that a person with dementia requires assistance with activities of daily living, is incontinent, AND can’t have a meaningful conversation. The alternative is that a physician can certify a life expectancy of six months. This does not mean that your loved one will die then. I’ve known people who were on hospice for three years before they passed.

Most families use hospice for only three days. What a shame! Hospice offers so much and it is all free, funded by Medicare. Hospice is not about death—it is about life and doing everything you can to make each day as enjoyable as possible. It isn't only families that resist--some physicians do as well. They insist they can’t say with any certainty when their patient is going to die. That’s not necessary. They only need to say that the possibility is there.

You owe it to your loved one, yourself and your whole family to start using this service as soon as you can. Start researching early, before the need is there. Learn about the various hospice services in your community. Interview them and decide which one you will call when the time comes. Find out just what has to happen before your loved one qualifies. Ask how well trained about LBD are their doctors, nurses, aides, social workers, their who staff. Do they understand about fluctuating cognition? About the LBD drugs and drug sensitivities? About LBD's ubiquitous urinary tract infections? Do they listen to you, the caregiver? Hospice services abound. Shop around to find the one that will serve you best. Services include:

• A nurse who visits at least once a week and supervises your loved one’s care.
• A  physician who is available to prescribe drugs and for consultations.
• A health care aide who comes in several times a week to help with baths and general care.
• Equipment such as hospital beds, wheel chairs, walkers and other assistance tools.
• Volunteers who visit with your loved one while you take a break.
• A social worker who can provide counseling for the patient, caregiver and the whole family, as needed.
• A chaplain who can provide spiritual help and grief counseling.
• A respite and critical care center that provides care while caregivers take an overnight, or longer trip. It can also provide critical care for most problems such as dehydration.(Patients are transported to a hospital if major care is needed.) Hospice center staff are experts at dealing with frail, elderly patients.

Hospice use requires the termination of all non-palliative or life-extending treatments. Heart medications, which extend life, would be withdrawn. In contrast, most LBD drugs enhance rather than extend life and should be exempt.When shopping for a hospice service, ask about their policy for your loved one’s specific drugs.

With better care, more attention, and less stress, the condition of a person on hospice often stops declining and actually improves. In this case, Medicare stops payment and your loved one must wait until they meet  criteria again to re-enter the service. Showtime is an aspect of LBD's fluctuating cognition where a person appears better than they usually are for someone other than their caregiver. When this appears with the evaluating hospice nurse or social worker, it can also result in discontinuation of services. (See our 10/26/2012 blog for more about Showtime.) However, you can reapply immediately and return as soon as a physician verifies that your loved one still meets the qualifications.

Don’t let your resistance stop you from using this valuable service—and start as soon as you can. It is a gift to your loved one if you do and a disservice if you don’t.

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.

A Lewy Body Family History

It all started back in 1817 when Dr. Parkinson described “shaking palsy.” Eventually, the disease was named after him. Fast forward almost a hundred years: In 1912, Dr. Lewy was searching for the cause of PD in the autopsied brains of Parkinson’s patients. He found that the microscopic round bodies of protein that were eventually named for him were always present in the area of the brain where movement is controlled. Thus, since 1912, it has been known that Lewy bodies and Parkinson’s occur together, although, until the last decade, they weren’t sure which caused which.

Fast forward again, to the 1980’s. Dr. Kosaka found these same Lewy bodies in the cerebral cortex, or the thinking center, of the brains of people who had displayed the symptoms we now relate with Lewy body dementia.

However, even though researchers knew the same “Lewy bodies” were present in both Parkinson’s and in that dementia Dr. Kosaka had found, dementia was not considered a symptom of PD until the early 1990’s. They were thought to be two separate diseases that often occurred together: PD and ‘dementia,’ usually Alzheimer’s. Then, in 1994, Parkinson’s disease with dementia (PDD) was recognized as part of the Parkinson’s picture and given its own insurance code.

Two years later, in 1996, a world-wide group of dementia specialists convened and developed clinical criteria for Dementia with Lewy Bodies (DLB).  At that time, the terms ‘dementia with Lewy bodies’ and ‘Lewy body dementia’ were used synonymously. However, it was not yet associated, at least formally, with PD. Dementia specialists treated LBD and movement specialists treated PDD, as a symptom which could occasionally show up in late stage PD.

By the early 2000’s specialists were beginning to recognize the similarities between PDD and LBD/DLB.  Finally, in 2005, a group of movement and dementia specialists met together and agreed that Lewy bodies caused both types of dementia and that their cognitive symptoms were similar. At that time, they determined that ‘DLB’ described the type of dementia that started prior to any motor symptoms and that ‘LBD’ was an umbrella term for both ‘DLB’ and ‘PDD’.

Notice that the experts were now saying that Lewy bodies caused these disorders (and PD as well)--not the other way around. And that’s why we now say that the Lewy body family has at least three members: PD, DLB and PDD. They are all related. PD occurs when the Lewy bodies reside in the midbrain where motor functions are controlled. DLB occurs when Lewy bodies reside in the cerebral cortex where cognitive abilities are controlled. And PDD occurs when the Lewy Bodies migrate from the midbrain to the cortex and both motor and cognitive functions are compromised.

As to what causes the damage that results in Lewy bodies, that’s still up for grabs. However, the evidence is becoming stronger and stronger that it is a combination of genetics and toxins.

Next week’s blog presents a more scientific vies of the Lewy body family.

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